The Catheter on the Table

Because for some reason we tend to leave weird things on the table… (see previous post on socks)

Pad Thai was for dinner, and I needed to make it tonight before the bean sprouts went bad. It was on the meal planner for last week but because #life, and me forgetting to pick up one key ingredient, it got pushed back. And even though I was exhausted by the time dinner time rolled around, I would make that Pad Thai if my life depended on it! Why? Because: I had tried making it more than once and now that I finally had all the ingredients I could not risk one of them going bad and so, I made the Pad Thai. It was really good Pad Thai if I do say so myself. (My son also said so which was reassuring.) If I had invited you over for dinner for some really excellent Pad Thai though, you may have found yourself squeamish and scrambling to find an excuse to walk back out the door when you saw it: a urological catheter on the table. Now, mind you- it was not a used one. It was lying neatly in its sterile packaging, but the fact remains that it was…a catheter.

I imagine not many, if any at all reading this post have ever sat down to dinner and found yourself moving a catheter off of the table. (And if you have- maybe we should be friends?) Anyhow, as much as I am used to seeing medical supplies and equipment around our house because of our medically complex child, when I realized there was a catheter on the table when I went to get the dinner on the table, it did in fact bother me- in two ways:

First, I realized how out of place this it’s was and the dinner table is really the last place it should be.

Second, I had a moment like others that I have from time to time where I’m abruptly hit with the reality of our lives and how far away it is from the typical home life of other people.

It isn’t something I dwell on a lot anymore, mostly because I do not have the capacity in my brain to stay there and think of all the ways we are not like most other families. But when these moments do creep up unexpectedly, it is difficult for me to recover quickly. And I will usually have to spend more than a few minutes lamenting and grieving certain circumstances that exist.

See, if you had in fact come over for dinner and seen a catheter on the table, it probably would have been incredibly awkward for you and not something you would voluntarily commented on. Or, maybe you would have not even realized what it was because you are not familiar with such things. Either way though, it’s weird. Not normal. And who knows what things you may have thought to yourself:

“I know they have a medically complex child but couldn’t they at least put the things like that away before company arrives?” Or, “Well that is super awkward…please don’t make me look at it or talk about it…please just get it off the table…look away, pretend you don’t see it.”

Because I mean really, what would you say about a urinary catheter on the dinner table? Exactly. But what you may not have realized is what happened in the hours and week leading up to the urinary catheter on the dinner table…

People often ask if I work or what I do during the day. I kind of want to laugh, sometimes cry, but ultimately I have really no good answer. Because how do you concisely explain that your typical day at home with your medically complex child who is severely disabled involves so much more than merely caretaking for her? The truth is I spend an absurd amount of time on the phone calling medical supply companies, pharmacies, and doctors offices often to fix or correct mistakes they have made, and of course to actually just place orders. (We currently have 2 pharmacies and 5 medical supply companies to supply everything she needs on a daily basis) I’m scheduling or rescheduling one of the hundreds of yearly doctor appointments, or trying to make sure I don’t forget to refill a medication that her life depends on. #nopressure I’m logging her fluid intake/output or making lists and notes of what to talk to medical professionals about, and trying to figure out why a random pressure sore keeps reappearing. Just to name a few… So I guess it is kind of like being a nurse, an administrator, and a home health aide that never gets to clock out.

But most recently I’ve had to clean up urinary accidents that not even the most absorbent adult diapers, underpads, extra underpads, and pants could contain, because my incontinent 16 year old has a neurogenic bladder meaning she has a tendency to hold onto things much longer than she should, giving me yet another reason to have our carpets cleaned in the near future. (Why, oh why did we decide to get the carpets?!?!…)

Because of this getting worse, her doctor has recommended we go back to using catheters during the daytime help drain her bladder effectively. So, I’ve spend the last few week days on the phone with dr offices and medical supply companies because not all of them will provide exactly what we need. And then going through 5 boxes full of over 10 different samples mailed to us of catheters and kits to decide what works for her. All while trying to emotionally absorb that this is another new reality and yet another piece to caretaking to manage and work into our daily routine. #NBD But alas, I did decide which one and what kit would work the best for her and I took them from her room when I called the company so I would have the exact name and item number to give them and to tell them the exciting news that I had come to a decision. And after ordering, I must have walked through the dining room and absent mindedly laid the catheter and kit on the table. (It was also right after I made like the 27th phone call about the outdoor lift replacement. You know, the one that broke back in February? #firedept Yeah, so maybe we will have our new lift by Halloween.)

And what you also would not have realized is that 2 hours before dinner I was cleaning our carpets yet again from another type of accident after I had to get her cleaned up again (right after her shower no less) and wash her wheelchair cushions, and basically decide if the soiled clothes were even worth keeping (which is really not a question because Oxiclean laundry powder is more magical than David Blaine and they should give me royalties for all of the advertising I do for them).

So tonight, had you come over for Pad Thai and seen a catheter on the table, I’m not sure exactly what your internal response would have been. Perhaps you would have surprised me by asking why we have catheters in the first place! Which you may be surprised to actually know: that that would have been the most gracious, empathetic response you could have had. Because it would have allowed you to enter into our very untypical lives.

So often I think one of the most difficult parts of this journey is not being able to share it with people openly. Matter of factly. Without reservations. And because you automatically filter what you talk about unless you are asked specifically about such things, it really messes with you. Like you have this secret life that you don’t necessary want to keep secret. But you can’t just show up to an event or dinner party, or any social event for that matter and just start talking about: urinary catheters. Or gastrostomy tubes. Like, on what planet is that socially acceptable?? But here’s the thing- it isn’t socially acceptable. Because it isn’t comfortable. Or at the end of the day there are plenty who just don’t care. Because they don’t have to. And that may sound harsh but it is the truth.

I have taken the liberty of labeling myself the biggest fan of Curt Thompson M.D. He is a Christian psychiatrist who has written the books Anatomy of the Soul and Soul of Shame. He also now has a podcast called “Being Known.” It is SO good. He says things like “neuroplasticity” and “prefrontal cortex.” (I practice saying such words because they are fun to casually weave them into a conversation like I know what I’m talking about.) Anyway, one of the main things he speaks about is how we were created for community and the importance of sharing our stories with one another. And how there is actually a physiological reaction in our brains when people fully listen and engage with our story as we talk. It involves empathy.

From his podcast Being Known Curt talks about how to respond when someone is being vulnerable:

We don’t have a lot of practice with vulnerability which means we don’t have a lot of practice paying attention to who we actually are. And because of that, we don’t have a lot of practice with our own vulnerability. When someone shares something with you, our lack of practice with vulnerability evokes all kinds of feelings in the listener. We end up responding with, “What can we do to fix this?” or Here let me get you a tissue.” “So do you want a burger?” When someone is vulnerable it evokes a range of things within us.

Our options are – quickly move on to another topic, I immediately want to fix what seems to be the problem and I begin to analyze what they are saying, or I want to act to deflect and distract or to fix mostly as a way to regulate my own distress.

When people are being vulnerable with us, what they mostly need from us is our empathic presence. They just need us to be present and with them. It means to comfortable and carefully look them in the eye, be aware of our body posture to send the message that the story they are telling us is welcome in this space. I also want to notice that I want to be curious about what they are saying by asking more about it or asking if there is more they want to say, also validate what they are feeling by saying: “Gosh that sounds really hard…that sounds really painful.”

This episode really resonated with me because it made more sense of why our family, and other families like ours tend to feel so isolated and overlooked. Our society as a whole has not had much practice in empathy and vulnerability, and it is not something we are quick to move towards. And yet- vulnerability is the very thing that brings us deeper into relationships and has the ability to help us form deep, meaningful relationships! Because we feel known. But in our specific circumstance as we have to deal with really difficult things on a regular basis, it is as though our story is just too heavy. Too long. Too uncomfortable to get close to. And ultimately people feel hopeless because it is not something that cannot be fixed, and the permanence of our situation makes it all the more overwhelming to try to step into and understand. And so instead of pressing in and pushing through the initial discomfort of the unknown, in order to help bring connection and love into a relationship with our family, so often people will choose to deflect or ‘buy a burger’ so-to-speak, because that is the quickest, cleanest fix. And an out. It is no wonder why ourselves and so many families and like ours struggle with our own mental health outside of the average stressors…

There have been a few times over the years that I have been asked how to better connect with our family or what do we need most. And across the board I answer the same every time: ask more questions. Sit with us. I’m not saying meals, and coffee, and cards are not encouraging. (Coffee especially is never not encouraging, by the way) Those things mean so much and help us to know we are not forgotten. But at the end of the day, without actual human connection and having people enter into our story, it becomes a very lonely place. We don’t expect that you will entirely understand, as you cannot fully walk in our shoes. But as Curt mentioned, the empathetic presence is SO powerful and I can vouch for how meaningful it can be. It breaks down walls and barriers and brings people together in a much deeper way. And as Curt would also say – it can positively affect the neuroplasticity in our brains when we connect in this way!

So I’m guessing if any of you get invited over for dinner to our house now, you may hesitate because of what you may find on the table. And honestly at this point I just can’t make any promises. But maybe you won’t hesitate because you will want to practice your empathetic presence amongst catheters and gastronomy tubes!

Either way, I hope you will decide to come if you are invited. I know we would love to have you here! ❤️

Time

They say, “Where does the time go?” Or, “Time goes fast!” I didn’t used to believe them, whoever ‘them’ are, but now I know them were right. Early days with your babies seem so long because sleep is so hard to come by, and their needs for basic survival are so great and tedious. All consuming at times- the diapers, the bottles, the projectile bodily fluids at unprojected moments, and crying whenever they demand even a millisecond of your attention. Suffocating at times, yet you are all in because well, they are your babies after all and you love them so fiercely.

Then they begin to talk and grow and walk and use a toilet independently. (If they are physically able, because as I know all to well the story changes dramatically when you have an atypical child with such diagnoses but that is for another post.) Anyhow, once they can spoon feed themselves and understand why toilet paper exists they seemingly exponentially become more and more independent of you in their needs. And it is the goal right? To raise self sufficient responsible people who will eventually enter the world with whatever knowledge and wisdom you attempted to bestow on them? And yet the less they need you and the taller they grow, your pride and heartache collide as you proudly watch them survive with you less, as you let go a little more.

It is the letting go that hurts so much, and I’ve struggled to articulate why, but I think I’m beginning to understand more… I think it has a lot to do with the reality of loss of control. And when they rely on you entirely for things like food and keeping them clean of poo and vomit, you seemingly are their sole caretaker, controlling how clean they are or aren’t, when and what they will eat, and where they go. You are the master of their little universe. But eventually they will learn how to do things for themselves and be allowed to be away from you for more than 3 seconds at a time. But the more they learn, and the more independent they become, the more they will pull away. And the more they pull away, the more you are forced to let go. Because the force of their growth eventually becomes uncontainable. It no longer is a matter of how tightly you try to hang on, but more so a matter of if you taught them how to reach for the right things, and walk in the right directions.

It is a journey of faith, and letting go is painful when it is something or someone you felt fully responsible for in the very beginning. And I think it is painful because releasing them means we have to ultimately give them up. And while many like ourselves had our babies dedicated back to the Lord when they were just that- I’m realizing it is more of a daily dedication. A daily surrender. Daily faith and trust and hope. And all of these things are really only possible in the name of Jesus.

Time is a funny thing. A mysterious thing. But a thing that can drive us to be all the more desperate for grace and starving for hope in Christ. And as my youngest begins his first year of high school later this year I feel all the feels of letting go and fighting not to look back and wish I had done so many things differently. But as the saying goes, “Don’t look back, you aren’t going that way.” Because if I’m looking back it means I’m not being fully present, fully soaking in all of the milliseconds as they pass one by one. Because once a moment passes, there is never any going back. So it is how we use these moments that is important, not wondering how we could have done better in the previous ones. Because when we are focused on trying to figure out how we could have done better, those moments are then forever lost in time and essentially wasted. Moments we could have banked more quality time or simply being present in thought.

We have today, and tomorrow, and however many days left until our children leave our home permanently from a physical standpoint. But we are mutually forever in each other’s hearts. Focusing on what time I have ‘left’ only causes me to spiral into worry and shame. But focusing on things that are here and now are the moments that will compound over time and that I can hope are the moments that will shape him in positive ways more than anything. Merely being present. Physically, mentally, and emotionally. And striving to love him well and point him to Jesus.

Here is to trying to focus on the present, the praying, the hoping, the having faith, and trusting that the same God we dedicated our baby to all those years ago is the same God walking with him and us today. And that in the easy moments and even in the most difficult of moments, he is as present as he has always been.

Feeling sad for his growth seems so counterintuitive, and yet here I am this evening fighting ugly crying in the parking lot of his first high school cross country practice. And while they felt like sad tears I was fighting, I think overtime I can begin to change their meaning. Perhaps I can shift my emotions, recognizing the man he is becoming and how far he has come, instead of feeling like I’ve missed so much along the way. Perhaps I can be excited with him when he talks about getting his driver’s permit instead of responding in dread and more tears of wishing he were not so old. And perhaps in shifting my response and focus, I can reflect the way Jesus sees him and loves him and exemplify what it means to let go and trust God with all of his days and minutes to come; with all of his milestones big and small. Ultimately I can give myself grace and keep going, and pray he learns to do the same.

And maybe, just maybe, one day he will be able to let go a little more easily of the things he will struggle with, because someone showed him that it is worth it. ❤️

*If you would like, please join me in praying over our son in this next phase of life:

That he would know that following Jesus really is worth it, that he would experience the deep love of Christ, and that ultimately his identity is in him.

Life-Giving Worm Poop

Looking my best doesn’t always convey the raw truth of what is going on internally. Fresh makeup and hairspray have always been of utmost importance to me. (Perhaps a bit of the southern girl in me) consuming my thoughts even at times, wondering if I looked ‘okay’ or ‘acceptable.’ Even though I never quite knew what that ideal really looked like.

But today, I felt like the lack of makeup and hairspray actually was depicting quite an accurate picture of what is going on in my soul.

I haven’t ran in a while, actually since last summer. Something about spending 30 days in the hospital with Rylie over 4 hospital admissions, with one in which I thought she was dying- well, it did something to me. Mentally, emotionally, and physically. It has taken months for me to sort of get back on my feet (figuratively and literally) because I just needed time to recover. It wasn’t how I necessarily wanted to recover, and it has been slow and painful at times. But necessary.

The amazing thing is, that in some of my darkest moments this last year, Jesus has brought healing in the most unexpected of ways.

And, it’s not that I still don’t struggle with those petty thoughts, but I have found ways to not think them as much, and to try to focus on the really important things. You know, like things Jesus talked about. I’ve found that there really is freedom in letting go and trusting I am good enough because he said I am. I’ve become more self aware, and in doing so found how to better see how the grace of Jesus is truly sufficient in my weaknesses, instead of just drowning in them.

These things do not come easy. But what he continues to remind me daily is that the pain IS worth it. And that I’ve actually come to a place where I begin to look for Jesus in the pain instead of reacting in fear and despair. It has been through a culmination of prayer, counseling, psychiatry, a few books, some prophetic conversations, words of healing, and very specific scriptures that have carried me through this most recent season. I say that to say: There is not always one specific way to find healing from the pain you have endured. And Jesus is not always quick to alleviate the pain or heal it instantly and I am beginning to have a deeper understanding of the why…

Somewhere along the way the last few months I found myself repeating the phrase to God, “Please don’t waste my pain.” And I begin to hear it and read it in places where I felt like it wasn’t something I needed to ask him to do because it isn’t in his nature to waste our pain. I came across the book Radiant Midnight by Melissa Maimone in the process. She says, “I need to know that, true to Psalm 56:8, the lord has collected all my tears in a bottle and that nothing has been wasted. I am desperate to understand the things that have brought so much confusion to my heart. I need to know that God’s grace is not diminished in the midst of affliction. Because if the darkest times of my life have less significance than the brightest times, then a lot of life is lost to hopelessness.” In her book she talks about having seasons of Midnight, a sort of a dark night of the soul. It was really relatable to me in recent months as I struggled to find my way through PTSD, depression, mental and physical exhaustion, and a sense of hopelessness some days. It has been a season more intense than previous, as it has forced me to realize I really have no control. But in coming to terms with that, it has lead me on a journey of seeing the healing and faith that comes with letting go and letting Jesus. “Part of Midnight is surrendering what you think should happen in your life.” And, “But since Midnight is for those whom Abba invites into a deeper, stronger, more mysterious faith, then surrender plays too important a role to ignore.” Surrender is immensely difficult for humans who struggle to want to control all the things. Think about it: when do you feel most hopeless and despairing? When things happen beyond our control that we do not like. Especially in painful circumstances or seasons where something is taken away or there are permanent implications to a circumstance that change the very trajectory of what we wanted for our lives. I probably know a little about that… And it is because I have lived it that I can tell you just how miserable it has been to sit and wish things were different and focus on how painful everything is, instead of refocusing and looking for Jesus in the midst of it. He is there. And if you are feeling cynical as you read these words, I have been there too but this is what I know now – He never left, and He hasn’t forgotten about you, or the person you are close to who is going through tremendous pain and/or suffering. But when we refuse to acknowledge his presence, it is difficult to see or hear him. When all of the noise in our head is focused on bitterness and hopelessness, that is exactly what we will be: bitter and hopeless. Jesus is love. He is not bitterness and hopelessness, but He does have the ability to transform those things. He is a healer. A maker of new things. The healing may not come in the way you want it to, or how you think it should but from experience I can say that it is always beyond anything I could have ever imagined.

Now, since I’m feeling transparent, I am going to share something about myself you may find surprising: I love rap music. I always have. If you know me you may find that interesting considering my personality and tendency to be on the quieter side. But it is something about the intensity of the beats in the music married with deep, meaningful lyrics that draws my Enneagram 4 heart. So many talented artists have taken the beauty of creating music with lyrics that have the ability to evoke deep emotion when you listen. I recently discovered the artist NF. His lyrics are some of the rawest I have heard. Telling stories of tragedy in childhood and struggles with mental health, I found myself able to relate a lot with the latter.

“See, we’ve all got something that we’ve trapped inside
That we try to suffocate, you know, hopin’ it dies
Try to hold it underwater, but it always survives
Then it comes up out of nowhere like an evil surprise
Then it hovers over you to tell you millions of lies…

Just think about it for a second, if you look at your face
Every day when you get up and think you’ll never be great
You’ll never be great, not because you’re not, but the hate
Will always find a way to cut you up and murder your faith”

(Then you know, there is like a beat drop, and some other deeply profound lyrics.)
-‘The Search’ by NF

I feel like I have spent half a lifetime running from who I was created to be. From how I was created. I spent years trying to re-create myself or search for ways to be a better version of me. But it wasn’t until I stopped long enough to recognize the hate I subconsciously felt about myself, and the lies that I would daily fight to keep ‘underwater,’ that I fully recognized how I was in effect drowning in my own negativity and self hatred. It was allowing it to take up space in my mind, leaving little space for things that were life giving. And so over the years through various avenues of healing ( like the ones mentioned earlier in the post) I have learned how to fight for my soul, to embrace myself in the way exactly God created me to be, the importance of replacing the lies with truth, and in doing so finding true freedom.

So, today I choose to share a raw picture of myself, because so often we just see the photos we have carefully selected that accent our good side or the recent trip to the salon. Because, who wants to see a picture of someone pre-shower, right after they ran a couple of miles, sweaty and red faced? Today I thought some of you might. Because it is real life. It is me without a filter. And just like we are often strategic about how vulnerable we are with our souls, I think our outward appearance can sometimes serve as a metaphor for the ways we try to avoid pain and the uncomfortable things. Just like running was not comfortable as a beginner, if you are not used to sharing the things in your soul it can feel uncomfortable and even painful at first. But the more you are able to share openly, the easier it becomes. In part, because of the freedom you feel when you do begin to really look at the hard things that you so often try to ignore. And over time, the more vulnerable we are with ourselves and others, the more God can heal the wounds and transform us through the pain.

Recently I was reading Chasing Vines by Beth Moore. She weaves an interesting connection between grape vines and our spiritual lives, while drawing the reader’s attention to just how much vines are referenced throughout the Bible, in addition to giving the facts about actual grape vines and how they grow. I wanted to give you an exact quote but I already returned it to the library so I will give you my best regurgitation:

“We cannot grow well and bear good fruit in our lives without crap.”

Now, I do know for certain Beth did not use the word crap in her book, but I really like my interpretation and since I do not have the ability to directly quote her at the moment, and because this is my blog, we are going to go with that. Anyway, she explains the process of vineyards and how precarious a process to cultivate a healthy vine. The climate, type of soil, and even elevation go into consideration to produce the finest grapes. She went on to talk about how with any good, healthy soil that significant amounts of earthworm poop are required. Something about the way the worm digests its food that it comes out with rich nutrients needed for the finest soil. And so, what is key for the most delicious, plump grapes on a grape vine goes back to the poop from an earthworm. The worm’s waste. This is also common knowledge in the general gardening world for many things, so if you are knowledgeable in this area this is nothing new. But have you ever stopped to really think about how symbolic this is? To recognize the beautiful ways God integrated physical growth with the spiritual? And to really pay attention to all of the ways growth is referenced in scripture? God loves growth. He loves the process of transforming things, and especially people. But so often we get lost in the pain and tragedy of life. The crap. We become so focused on looking at the pain, the heart wrenching tragedies – the crap, that we forget to look up and ahead for how the crap is going to be used to grow us in the richest of ways.

“No pain, no gain,” some say. It is often associated with exercise. Because everyone knows how much work exercise can be, and how sore your body will be after. But it is necessary to gain more strength and improve health. The phrase is so acceptable in society but somehow we have compartmentalized the meaning to only apply to things we think it should apply to- like exercise or hard work. Probably because those things provide obvious, physical results. We can see our muscles grow, our blood work improve, and our paycheck increase. But we are not as quick to apply this idea to general struggles in life. Tragedies, heartache, and disappointments to name a few. Those things just feel unbearable and we seem to forget that just as lifting weights produces physical muscles, living through the pain of losing someone, or chronic illness will increase our soul muscles, and if we allow – our faith muscles. When we choose to look for Jesus in all the things, we become increasingly aware of his presence and the way he brings beauty from ashes.

In my humanness I know it will continue to be a struggle to surrender; a daily one. But because I have experienced Jesus truly transforming my pain in the most beautiful ways, I have a hope I can cling to in future pain. It is worth it. HE is worth it.

The book and documentary “I’ll Push You” is about two best friends, one whose progressive rare disease has left him completely dependent on others for all care needs, including being pushed in a wheelchair. It documents their journey across the Camino De Santiago in which the one friend who can walk commits to push his friend who now uses a wheelchair, across the 500 miles of the trail in Spain. Patrick who pushes his friend Justin shares his struggle with feeling angry about his friend’s disabilities and desperately hoping for healing. He says,

”That’s when I realized that, more often than not, the miracle isn’t the absence of struggle, disease, or pain; it is the presence of grace and certainty, the ability to face strife, the unknown, or a slow death, without fear. My obsession with divine intervention had distracted me from the truth that God had already intervened.”

Just because God doesn’t intervene in the way we think he should, doesn’t mean he hasn’t.

“For this light momentary affliction is is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” II Corinthians 4:17-18

Some Days You Have to Call the Fire Department

The other day we had to call the fire department just to get Rylie in the house after school. (Just add that to the list of things I never thought I would say…)

This picture can represent a few things. First, it can represent the literal- that Rylie’s outdoor lift to get into our house stopped working as soon as I got her to the top, and the door locked and would not open, trapping her inside. It was 20 degrees outside and feeling panicked I called the fire department in the meantime while we tried to troubleshoot how to get her out…

The picture can also show how you can find joy in any circumstance. That you can find the positive in anything. Rylie was smiling in the picture, trapped on the lift, in 20 degrees, for over 40 minutes. I will tell you that I was certainly not smiling, as I have made multiple phone calls over the last couple of months to try to get Medicaid to send a provider out to service our lift because it was making a weird noise. They had yet to respond, and you can imagine my frustration realizing had they came in a timely manner this could have probably been avoided.
But Rylie is smiling because well, it’s the fire department. And fire trucks are one of her favorite things ever, and- because somehow this kid seems to almost always find the good in any situation. It is like she automatically assumes there must be something good about even the most dire of situations. But Rylie wasn’t cursing Medicaid or complaining about the wind chill on her cheeks, she was smiling. Because she found something to smile about…

Lastly, this picture could serve to represent the broken system in which individuals who clearly have no idea what it means to live with a disability, are the ones making decisions on what people with disabilities should and shouldn’t have. And one of the things that they (Medicaid) deem unnecessary to pay for is a second accessible entrance for our home. They allowed us to use Rylie’s waiver funds to have the lift purchased and installed, but I found out this week that we are fully responsible for providing an alternate accessible entrance (like a ramp), EVEN though Rylie has $10,000 in a waiver fund that renews every year to spend on things like home modifications. We can only apparently use it for home modifications that Medicaid approves and deem necessary. That is also why after 3 years of denying an alternate specialized seating for Rylie (because she has a wheelchair so “she does not need another place to safely sit” according to Medicaid) we finally found a way around in an alternate funding source to purchase the chair. We even had a doctor’s note for the chair stating it was medically necessary because it allowed her to sit in a position to alleviate pressure because she is so prone to pressure sores. In addition to other documentation and a letter from her therapist. But because Medicaid has been given the authority to decide what is and isn’t ‘medically necessary’ they easily continued to deny it based on their conclusion. And again, even though she has another $10,000 in her waiver funds for equipment needs just like this one, we could not touch it because of the reason it was denied by Medicaid. And in case you are not infuriated enough, there is nothing in place for individuals like Rylie in an emergency situation like when our lift breaks, to provide an urgent repair, or alternate accessible entrance. We still have to wait for her case manager to send papers to the lift company to sign, then return to the case manger to sign, for her to then return the document again to the lift company, at which time they can come out in the next 2 or 3 days to look at the lift. But if they need to order parts it will take even longer.

Now maybe you are thinking, ‘Well, that is just life. There is a process to get things done and fixed like this.’ Well, yes. BUT, in the meantime we have to figure out how to get Rylie in and out of our home safely in the middle of an icy winter, up and down multiple stairs in her wheelchair if we need to take her to her doctor’s appointments, to get her on school transportation, or anywhere else for that matter. And since I (Lorie) can not physically do that by myself, I have to ensure that another adult is here when she does need to leave the house to physically get her out.

And by now, I’m sure some of you are thinking, ‘Well, you guys should really have been more prepared and had a ramp installed even if you did have to pay for it yourself.’ And you wouldn’t be wrong, but maybe just a bit ignorant. I canNOT even begin to articulate accurately ALL of the things that go into caretaking full time for a child with a significant disability and multiple complex medical needs. And you know what? I cannot do it all. We cannot do it all. And we try 100% day in and day out to keep our daughter alive, well, clean, and nourished through tube feeds. Currently while we are pumping formula through one feeding tube, we are having to drain bile from the other feeding tube and keep records of the amounts while weighing the diapers our now 16 year old because she was getting dehydrated so we now have to monitor urine output and calculate how much Pedialyte she needs to keep up on her electrolytes. 3 times a week she has to be given a medication to force her to have a bowel movement because she cannot have them on her own. She is on 10 different other prescription medications that need to be given though her tube throughout the day, and we have to suction extra secretions from her mouth with a suction machine so she doesn’t get choked. We are at multiple doctors almost every month to keep up with her diagnoses and care needs, and often because there is something new that needs to be addressed, and currently we are discussing and considering 4 different surgeries from 4 different specialties for her to go through in this next year. I spend much of my days messaging and calling doctors and other medical professionals, or having to fix or check up on the supply companies or pharmacy because inevitably someone does not fully do their job, leaving a mess for us to sort out. SO, if you think we probably should have been prepared then well, yes… but we weren’t. Because we have been busy doing the one million other things we have to do daily just to keep her alive. And because I guess we just didn’t think of that one other thing we needed to take care of since our lift has never broke like this and left us in this kind of predicament.

Now, I really hope you don’t feel pity, or read this and just feel bad for us. That is not the intention here. And you don’t have to tell us how great we are or that we are heros for what we do. Because honestly you would do the same if it were your child. What I DO want you to feel though is outrage. I want you to feel frustrated and angry with us at the lack of accommodations provided for people with disabilities. And I want you to see those in your own communities and neighborhoods with disabilities and know that things are not good enough for them. The world is not welcoming for them. There is SO much they and we have to fight for just for basic rights and care and general accessibility in the every day world. And it is NOT okay.

Feeling sorry for us doesn’t change anything. Actions speak louder than words. And in this case, they speak VOLUMES more than mere words. 

In the Crip Camp documentary on Netflix (that I’m insisting you need to watch if you haven’t already), there is a quote:

“You don’t have anything to strive for if you don’t know it exists.”

And while this quote was said in the context of someone with a disability recognizing their potential, I also think it is a great way to speak to everyone who is unfamiliar with the struggles and difficulties that people with disabilities face on a daily basis. Because if you have read this far, now you know a bit of what exists in our lives. Giving you something to now strive for with us and for us. You can’t say you didn’t know because if you are reading this sentence it’s because you read everything before it that told you…

See, the thing is, even though you may not be able to fully understand, you can stand with us in advocating for what is right. And you can sit with those like our daughter who cannot physically stand and just be present in being their friend. And you can be our personal fire department, so to speak. I was reading on a website about ‘10 Traits all Great Firefighters Have’ and included in the list was self sacrifice. It stated, “Self-sacrifice means that you are equally concerned with the well being of others as much you are with your own well being. Those who possess this trait volunteer their time to worthy causes. They have a natural propensity to help others and have a giving spirit. They also tend to be those we label as courageous, because they are willing to take risks and make sacrifices in order to help others.”
It made me think- shouldn’t we all be more like firefighters? Maybe not by fighting literal fires but fighting through advocating for those who are marginalized and valuing their lives as important as your own?! I also found it interesting in that definition that it says they tend to label those as courageous because of the risks they are willing to take and sacrificing to help others. Self sacrificing is ‘courageous!’

See, I called the fire department that day because I knew they would come without hesitating. I also knew that they would risk anything to get Rylie off of that lift, because she is just as valuable to them as any other person who would have called on them for help. (And I realized just how serious they were when they brought out the giant crow bar to which I convinced them to wait and try a less violent way so as not to damage her very expensive lift even more). Firefighters don’t decide if they will help, they decide how they will help.

So often we are fending for ourselves by ourselves, whether it is Medicaid hearings, or fighting for her literal rights as a human being. Medical supply company botches that we have to sort out, or an extra set of hands to physically taking care of every daily living need for our completely dependent daughter each day. Hours waiting in doctors offices and late night cries when some days have just been SO heavy. And many days it is just. So. Lonely.

It is YOU who can help be bridge the gap to bring change to how we respond to those most overlooked in our society. It is YOU who can change the narrative to this population, in how society responds in love instead of neglect. Not if but how. And it is YOU who can be the literal voice for those like my daughter who does not have the full ability to verbally fight at a level that will bring change. A voice for a community of people who are so often not seen or heard.
IT. IS. YOU.

I’m hoping by now many of you reading are feeling that you do in fact want to do more, but maybe you do not exactly know what that realistically looks like. So I’m taking it upon myself to helpfully give you some creative ideas to reach out, stand up, and speak out:

1. Ask questions.

Okay so maybe actually it’s just the one thing. But perhaps it’s the most important thing of all because it places you in the posture of becoming educated and aware, and bridges the gaps where you can truly empathize with someone different than you. The crazy thing is, one question could quite possibly lead to multiple other things! You could ask, “What do you need?” Or maybe in the form of “How can I best support you?” People need to be given the freedom to speak their needs without feeling like a burden. And because those with disabilities or myself and other caretakers are not used to being asked this- they may initially respond with not knowing how to answer. This would be a case in which maybe it would be good to help give them examples of ways you would be willing to help like:

*helping them get to an appointment
*giving them a gas card for appointments
*spending time with them during some daily activities or routines
*how you can physically assist at times
*helping them with cleaning their house or other household chores
*offering to bring a meal
*offering to hang out for support while they make multiple Medicaid phone calls
(This one could also involve bringing a punching bag and or larger than Venti sized coffee)
*And last but not least—you could simply just be their friend.

Now, maybe you think all of this is great but it gave you a funny feeling in your chest. Like that little bit of anxiety you get when you think about the unknown. Maybe the feeling you get when you lose control of something. It’s okay. Because the answer to the question you ask may very well be something you are uncomfortable with and may even scare you a little. It’s likely it could be something super unfamiliar, or maybe it would be something simple like bringing a meal. What matters is how you respond to these feelings of uncertainty. You have a choice: you can give in to your anxiety and the unknown and never experience the blessing of entering into a relationship like you have never had before, OR you could push through any fear, ask a question, and let Jesus do the rest.
To simplify: Be like a firefighter.
(That whole courageous thing.)

Here is a beginner tip: Focus on the asking. If you focus on all of the what if’s you will certainly drown in your fears and anxiety of all of the uncomfortable possibilities that may await in the answer. But if you take one small step to just ask, I’m confident you will not regret what may happen next. I won’t guarantee it will instantly be exciting and easy- But I will guarantee – you won’t regret it.

Now excuse me while I pour another cup of coffee and follow up for the 6th time this week about that lift that still has not been fixed. Another ‘fire’ to be put out you might say. I have an extra chair and mug if you’d like to join me…

#advocateFORusandWITHus
#everyonedeserveseasyaccessibility
#belikefirefighters
#urbanmustardseed
#shareifyoudare

Socks, Lions, and Pandemics

I looked over one night at dinner and saw a sock on the table. I wasn’t sure if it was clean or dirty, but I did happen to notice it. Now, we were all at dinner, and yet none of us bothered to take the sock off of the table. It wasn’t bothering anyone or preventing us from eating, and yet a sock on the table isn’t exactly a common or acceptable occurrence. Dinner concluded, and I guess no one moved the sock because a few days after I initially noticed it, I realized it was still there. We just kept eating meals there over the next few days with just our placemats, plates, and center holder for napkins and such- and the sock. And no one said anything about the sock, and no one moved the sock. And it wasn’t like there was a random pile of items that had accumulated on the table, including the sock. It was just normal table things, and the sock. Days that went by with this sock on the table. And at some point a few days in, I glanced and noticed another sock on the table, from a different pair. I remember giving it a quick confused glance, and continuing whatever I was doing that day. Not giving it much thought, but also not bothering to move the now plural, socks. Meals have continued to take place. Conversations around the table have been had. And the now ‘socks’ still remain. Then one morning I stopped and more than just merely noticed the socks on the table because I recognized there was now a third sock. There are now THREE different socks on our table, of different varieties, belonging to multiple family members. After assuring myself that there is no way that socks have the ability to multiply themselves, I stopped to fully be present and observe these 3 socks on the table, the only items that really don’t belong on the table. I suddenly became fully aware that for what has now probably been at least a full week, we have existed and lived life, and eaten meals with these socks on the table- that I’m not even certain are clean or dirty. And not one of us has stopped to really fully recognize this oddity, to help the socks return to their right place, or have even asked each other- “Why are there socks on the table?!” And then I just laugh to myself. Because – why are there 3 different socks on the table?!?! And why are none of us moving them off of the table?!? And for the love- where are these socks coming from?!?!! And then I turned around to get my sweater, and proceeded to get my daughter out the door for a therapy appointment. Without moving the socks. And so after I got in the car to drive to her appointment, I did actually begin to think about this even more, having stopped to become more aware of this odd, creepy, humorous, and mysterious appearance of random socks. I think to myself:
“When I get home I will move these socks off of the table. This is so weird. And odd, and ridiculous. I just need to move the socks! No one else seems to see the need to move the socks so I just need to do it. The socks haven’t bothered us or prevented us from living our lives, but regardless, they do not belong on the table and they probably aren’t going to find their way back to the laundry or dresser unless I go move the socks! I have to stop what I am doing, focus, and make the effort to put the socks away in their appropriate places.”

I’m sure you can think of people in your lives or that you have seen who are a human representation of random socks on the table. They aren’t super noticeable, and they aren’t bothering anyone so we continue to pass them by. Without stopping to ask them if they are lost, feeling misplaced, or lonely. They may look different or out of place but it is easier to look the other way instead of stopping to take the time to fully be present enough with them, and hear their story. Some are like clean socks – out of place but easier to just walk by, and others are like the socks that your 13 year old has worn 3 days in a row, without showering, causing a heightened level of discomfort to get close to them. Some are like socks with holes and seem useless, and subconsciously we think they aren’t worth our time. And some are so different that they don’t resemble a sock at all. 

I think you see where I’m going with this. Most of us have probably had some sort of experience where we have been that “sock on the table,” attempting to exist in a world that isn’t welcoming or noticing us. Maybe you didn’t fit the unspoken mold to be able to join to cool kids at the lunch table. Maybe you are the stay at home mom that feels at times you exist solely to keep your children alive, feeling unappreciated and unseen. Perhaps you don’t have the most magnetic of personalities, or are an introvert feeling like you are living in an extrovert’s world. Or perhaps you find yourself on the outs in a world that has silently but profoundly made it easier for a white, middle class, able bodied person to live in. Feeling like a sock on the table day in and day out, waiting and longing for someone to notice your feelings of displacement and struggles to fit into a certain, unspoken, idealistic mold.

It is difficult in present days to not be consumed with politics and pandemic news. And over the last few months I’ve seen it shape my own thoughts, beliefs, and fears. And I know there are no simple answers and everyone has an opinion about everything. But I recently wondered – for those who are Christian and follow Jesus could it be just as simple as faith over fear? That in every action and reaction we stopped to ask ourselves if it is being filtered through faith or fear? And if fear is in fact our motivation in said scenario, is that what Jesus wants for us? And not to be cliche but, WWJD?? I mean honestly! We sit at home cowering at the numbers, statistics, and allowing a feeling of guilt for leaving the house just to get groceries. Or contemplating whether or not Bible study is “safe” or “reckless.” How did we get here? We are becoming consumed by this infiltrated fear so much that it is shaking our very faith we say we place our lives on. And without noticing we shrink more and more into what we allow ourselves to become paralyzed by. The what ifs or possibilities of disaster and death. Are our eyes watching the news more than the real world around us? Are we living and walking in faith and love or in fear and anxiety? I’ve found myself in the latter more times than I’d like to admit in the recent months, allowing my anxiety to take over and convince myself it’s for the safety of myself and those around me. But I’m struggling to find in scripture where we are supposed to choose safety first. And also recognizing we run in circles convincing ourselves we are being ‘safe’ whilst sacrificing our mental health and relationships with others, among other things.

There is no real way to fully control a pandemic, an invisible virus. We are being fed statements that we are keeping each other ‘safe’ by social distancing. “Stay safe, be safe, wear the mask and don’t get too close.” And, there was the announcement that we are ‘strongly encouraged’ to close churches. Setting up the church to look like the guilty, self indulging ones. Every move we make seems to revolve around ‘keeping safe.’ And while we all remain so focused on ‘staying safe,’ we have failed to see all of the ways this pandemic is affecting people. Why aren’t we hearing regular statistics on mental health and the rise in suicides since this began? Socks on the table. Why aren’t we hearing more how domestic abuse has increased dramatically? Socks on the table. And why aren’t we hearing more of the personal stories about how small business and restaurants have been forced to close forever in order for us all to ‘stay safe,’ leaving them to collect unemployment and forced to suddenly start over with their careers? More socks on the table. And, why are we not opening our eyes to see the real effects of forcing our children to ‘learn’ remotely???? Socks. On. The. Table. Not to mention the mental toll it must be taking children to follow suit in walking around in fear from an invisible threat. What are we teaching our children? What are they actually learning online? Not much. But what are they learning from the behavior of the adults during this pandemic? To run away from threats we cannot see and try to stay “safe” at almost any expense. Even the expense of our literal sanity. I cannot help but wonder how our children are non verbally processing a scenario like this when they are told to have a big faith, in a God they cannot see but who is sovereign and in control. Our children have become the ‘socks on the table’ so to speak, in that while we focus so hard on supposedly protecting ourselves, we have forgotten the impact this is having on them. The single parent families and those with both parents working canNOT be expected to adequately educate their child whilst simultaneously trying to hold down their jobs. Socks on the table. The nursing homes and assisted living facilities where the residents are not allowed any contact with people other than a nurse. They are not even allowed to eat with their friends in the facilities anymore. How could they not be dying a lonely death of extreme isolation?? Socks on the table.

There are SO many facets that are being impacted by the decisions we are making daily, and yet NONE of them fully take into consideration the extent to which ALL of the population is being affected. ‘Stay safe,’ they say. ‘We are in this together,’ they say. Tell that to my grandmother who hasn’t seen any one other than a nurse in over 8 months or the family who had someone commit suicide because of the toll it has taken on their mental health. Tell it to the business owners who just shut down forever and have no idea how they will recover or how to start over their life’s work, or to the mother of small children who is scared to leave the house because of the judgement she would surely receive for an ‘unessential’ trip to Target. And- who gets to deem what is and isn’t essential anyway?!

‘Staying safe’ isn’t working. Someone still has to sacrifice or suffer. We are currently just choosing who we are willing to sacrifice. We have allowed fear to shape our opinions and views and actions.

The more we isolate in extremes, the more inward focused we will naturally become. The more we read statistics and the more we spend our time watching the news that is still dominated with pandemic facts and statistics – those are the things that will naturally consume our minds. “Because what you give your attention to is the person you become.” (John Mark Comer, The Ruthless Elimination of Hurry) Slowly we are allowing ourselves to be consumed with a thing that cannot really be controlled. We cannot see it. It is an invisible threat. And since we do not have Marvel level super powers to see the invisible, it has left us in our humanity scrambling with everything we have to try to protect ourselves from this threat. It makes me think of the powers of evil and demonic forces that also in fact exist. And the ways they use things like pandemics to invoke incoherent fear in people. Forcing us to choose what or who we are really going to put our faith in.

Curt Thompson, MD wrote a blog post last year right after the pandemic began titled “Love and Lament in March Madness.” He writes:
“But here is where the virus is more than a deadly infection – it is also a revelation. For our fear is far more ancient and far deeper than the fear of our physical mortality. And believe it or not, it is not mostly about a virus. Rather, the virus is shining a bright light on the heart of the matter, both interpersonally and neurobiologically, which we see more plainly when we read Jesus’ words, ‘I tell you, my friends, do not be afraid of those who kill the body and after that can do not more. But I will show you whom you should fear: Fear him who, after your body has been killed, has authority to throw you into hell. Yes I tell you, fear him. Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.’ (Luke 12:4-7)”
He goes on to say, “Our brains tend to automatically pay attention to those things that frighten us. Being afraid is part of our makeup; the question is not, will we be afraid; but rather, to what will I direct my fearful attention.” And, “That’s why the good news is that Jesus’ words are not about paying attention to God or he’ll send you to hell. No, rather, pay attention to- direct the attention of your fear to- the one who has authority, the one who has authored your life.”

Did you know that “fear not” is the most used phrased in the entire Bible? In fact, 365 times throughout the scriptures that we are encouraged to ‘fear not.’ Coincidence? I don’t think so. God knew that fear would be something we would struggle with immensely as humans. The fact that he managed to tell us exactly 365 in the scriptures to not fear, is such a beautiful way of telling us that we have to remind ourselves daily, and look to him daily, because we will daily struggle with fear! This pandemic is a true test of where our faith lies, and how much control are we going to allow fear to have. It has also unfortunately highlighted the ways in which our world continues to ignore populations of people that are easiest to overlook. The ‘socks on the table’ that we walk by every day, and decisions being made without stopping to think how all people will be affected.

Levi Lusko talks about lions and lionesses in his book “Through the Eyes of a Lion: Facing Impossible Pain, Finding Incredible Power.” He explains how in the wild that it is actually the lionesses who do the killing, not the male lions. However, the male lions will let out a terrifying roar when prey is nearby, causing the prey to run in the opposite direction. But what the prey doesn’t realize is that the lioness is waiting in the opposite direction for them to run right to her where she will pounce and kill them. The prey has the natural instinct to run in terror away from the sound of the enemy’s roar. Lusko writes, “When you run from things that scare you, you move toward danger, not away from it. If you fail to face your fears, they will always be right there behind you. You must suppress that little voice inside that’s telling you to get out of Dodge. It is not your friend. when you feel that panicky fight-or-flight sensation and you want to run away, do the opposite. Run toward the roar. You have come into the kingdom for just such a time as this (Esther 4:14).”

For such a time as this. I think we have two choices currently: run in faith or run away in fear. Live in faith, or live in fear. We have seemed to come to terms with the latter being more permissible and acceptable under these extreme circumstances. We are in general giving ourselves a free pass to make all of our decisions in fear. We have decided to focus on something we cannot see, that is having a devastating affect on our world, instead of choosing to solely focus on God who we cannot see but profess to have faith in. We are nonverbally telling the world that our faith actually isn’t as big as we said it was. And that the God we follow actually isn’t the biggest and most powerful. And we have become even more apathetic to the populations of people that were already overlooked to begin with: ‘socks on the table’ that we haven’t stopped to ask why or how they got there. We just keep living to keep ourselves safe at any expense without regard to the overall impact it is having on humanity as a whole. Instead of rising up in faith and exemplifying to the world how to keep going, keep loving, and how to move toward our fears and having faith that God is still with us, we are succumbing to fear. But instead of just calling it what it is: ‘living in fear,’ we say we are ‘staying safe’ because well, it just sounds better.

Paul writes in Philippians 1:27-30, “Only let your manner of life be worthy of the gospel of Christ, so that whether I come and see you or am absent, I may hear of you that you are standing firm in one spirit, with one mind striving side by side for the faith of the gospel, and not frightened in anything by your opponents. This is a clear sign to them of their destruction, but your salvation, and that from God. For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake, engaged in the same conflict that you saw I had and now hear that I still have.”

Why would the world be convinced that it is worth following Jesus when at the end of the day we really don’t have enough faith to conquer all of our fears? It is an optimal time to pivot. The perfect time to be the church. To love ALL people. To exemplify a faith and a trust that has no boundaries. A seemingly reckless faith in current days. Because that is what it will seem like: reckless, careless, and unsafe. Familiar words in respect to how we are supposed to not behave during a pandemic. And yet they are the very words that can be used to describe our faith, if we truly believe what we say we believe.

I don’t know about you, but I want to live in a way that sees ALL people. In an authentic faith that I wake up every day struggling to cling to in the face of fear that threatens to consume me daily. Waking up ready to fight the daily war of faith vs fear. And I want to come out victorious in faith. It’s not going to be pretty. In fact, it will often look messy and even feel unsafe at times I’m sure, but I believe that it is worth it. I have to. Because if I don’t, then what do I have to live for?

And maybe in the process, I will finally move the socks off the table to make space to have a meal with someone I wouldn’t naturally reach out to—putting us at risk. But—at risk of growing our faith and allowing God to work in the most unexpected, amazing ways. And that is a risk worth taking.

“True bravery isn’t feeling no fear—it’s being afraid and moving forward anyway.”
-Levi Lusko, “Through the Eyes of a Lion”

Let Her Go

I surpassed the speed limit by more than a little as I frantically tried to catch up to the transport van that picked up Rylie for her first day of school. For some reason, a school bus seems so much more safe and professional, but the idea of an adapted minivan picking her up with two strangers who I’ve never met felt more than unsettling as I thought about them trekking 10 miles to the east side of Cleveland. So, what did I do? Followed them of course! To ensure they knew where they were going, that they followed all traffic laws, and didn’t make any unplanned stops. Except, when I whipped my Toyota Sienna sports edition minivan out of the driveway behind them, they had already turned the corner. I heeded no speed limits as I was determined to catch up to them. I had them in my sights until I got stuck behind a truck that did heed the red light laws, and the next 3 lights after that. They were gone, and there was no speed high enough to catch them on I-90 East. My heart raced and I felt anxious and frustrated that I wasn’t able to follow them as I intended. And then I sensed God say in my spirit, “You have to let it go. Let her go.” I needed to let go and let Jesus, because he has proven faithful every step of the way in getting her to this exact point today. And then ironically, but not so ironic because #God- the lyrics to the song through the Bluetooth played: “you never let go, you never let go….God through it all, you will never let go….” And I thought, how ironic that in order to allow your faithfulness that I need to let go, and all the while you will never let go of me, or Rylie…

Yes Jesus, in order for me to let you continue to hold all the things, I have to fully let them go. Such a simple word picture, and yet something I’m that is one of the most difficult for us as humans. To give up control. It is the constant struggle. Because for some reason we tend to think if we remain in control then things will go according to plan. We will know all the details, do all the things, and run ourselves ragged to avoid losing control. But where is the faith in that? There is no faith in having a completely controlled outcome. “Faith” when defined as a noun is: “complete confidence in a person or plan.” We can choose to focus on our plan which can give us confidence in ourselves, but how much are we missing when we choose faith despite the what ifs? If we try to remain in control of all the things, we miss out on allowing God to do the miraculous!

A couple of months ago after we found out the Cleveland school district would be entirely remote, I immediately requested a meeting with her school and district personnel to explain what I thought should have been entirely obvious: Rylie canNOT do school remotely. It isn’t feasible at all. And the fact that the only ‘accommodation’ they provided was an aide who would assist her virtually. (I don’t need to explain why that is absurd, right?) The meeting concluded with the district explaining to me that there was basically not enough evidence (despite the obvious, and what is in her IEP) to approve a separate placement for her. I had requested separate placement which is an IEP term, because there was an alternate education program that serves kids like Rylie at United Cerebral Palsy, and they were able to still meet in person, while taking appropriate pandemic precautions. Over the next few days I began frantically researching and having conversations with anyone and everyone I knew that was knowledgeable about all things IEP, because I knew without a doubt that expecting Rylie to be educated virtually was not only impossible, but completely unfair.

After digesting much IEP, FAPE, and IDEA jargon, I cried out to God one afternoon, “You have to fight for me! This is all too much and it’s not right but I can’t just fix it. Please fight for me!” Shortly after I had a conversation with a friend, who encouraged me to call Disability Rights and helped me with another letter to send to the district. Days went by and I knew the letter was all I had left. I had to do something, move forward, continue to…fight. And yet something deep in my spirit was unsettled. I began to sob desperate tears of frustration and helplessness, and as I dramatically flung myself on the bed, sobbing tears of despair, I cried out even louder than before, “I NEED YOU TO FIGHT FOR ME!!! FIGHT FOR ME!!! IS SENDING THIS LETTER THE WAY YOU WILL FIGHT? BECAUSE I DON’T HAVE PEACE RIGHT NOW ABOUT SENDING IT BUT I DON’T KNOW WHAT ELSE TO DO!!!!!!”

“Be still, I will fight for you. Just be still.” It was one of those times where the voice of God was nearly audible to me. And yet still in my struggle to let it completely go, I questioned just how he was going to do this without me sending a letter basically stating that I was going to get a lawyer involved. (Even though I had NO idea beyond that actual threat how we could possibly pay for a lawyer) “Just be still. I will fight for you.” And I kid you not, moments later the phone rang and it was someone from Disability Rights. Now, I honestly had no idea what these people did or if they could be of any help at all, and I had even forgotten that I had done an intake assessment with them a couple of weeks prior. So the gentleman on the other end of the line asks me to explain what is going on. And honestly, I was reluctant because I thought it was going to be a complete waste of time. I mean, how on earth could someone just step in and help us fight the school district? Well, apparently this guy, because as it turns out – Disability Rights has lawyers who work for them to help people out with things including school situations where a child with a disability has rights that are not being met! After sending him all of Rylie’s evaluations, IEP, and other documents, he agreed he thought he could definitely help us out, and was able to coordinate an IEP meeting with the district and school personnel. And, just to give you some perspective: ‘Separate placement’ is not approved in a child’s IEP very easily. And I have heard that in the Cleveland school district especially, that it rarely happens. It basically means the district is agreeing that they are unable to meet the individual needs of a child with a disability and not able to accommodate them appropriately, therefore opting to send them to a facility that can adequately meet these needs. The district is then responsible for all costs related to sending them to this other facility and the necessary transportation to get them there. So it is costly, which is another reason it is not something they are quick to agree to.

Between the time I initially spoke with the Disability Rights lawyer and the actual IEP meeting, I stressed and struggled to remain confident that God was in fact going to come through and fight like he said he would. The day before the meeting, I was a wreck, my mind spinning with all of the things I should say, or wondering how I would defend my position and trying to practice all kinds of scenarios that could possibly occur. Then my wise husband reminded me, “God said he would fight for you. You need to cling to that!” The next day, I made a smoothie, pulled out all of my paperwork and notes, and took a deep breath to prep for the Zoom meeting, as the lawyer had said these typically take 2-3 hours to come to a resolution. Guess what? After about 45 minutes of the district representative asking a few questions to other school personnel for clarification, and allowing me to explain why I felt remote learning was not appropriate or possible for Rylie, she calmly said, “Okay Ms Huneycutt, I mean, I think Rylie would be best suited in a separate placement, so if you are in agreement…..” I looked around my kitchen as though I was trying to give someone else a look of like “What just happened here??….” but I forgot it was just me and the like 9 people in the Zoom square boxes on my iPad. I tried to quickly compose myself and hide the shock and complete surprise happening in my brain to reply with a professional, “Yes, I agree.” That was it. The lawyer was present at the Zoom meeting but said few words. His presence spoke louder than anything. “Just be still. I will fight for you.” I waved a polite goodbye as we all signed off, gently closed my iPad, and began to ugly cry. It was a cry of relief, love, faithfulness, thankfulness, and an emotion that I am still unable to completely articulate: when you have to literally fight for the rights for your child. Of course it is amazing when you have a victory, but the fact that you have to expend so much emotion and energy in the first place to advocate for your child’s basic human rights takes something out of you, and it is a deep emotion that I cannot yet put words to.

It was an experience of God’s faithfulness that has grown my faith immensely, and helped me to comprehend all the more just how much He sees. He cares. And even though the school district forgot Rylie, He most certainly had not forgotten about her. But I had to let go. Because I could have sent the letter and tried my best to fight with only my words but when I stopped to cry out to Him and hand it over, He was so very faithful to provide and fight for us. There was no ugly, drawn out litigation or battle of words at the IEP meeting even. It was almost as though God showed up to the district and told them how it would be. I mean, I feel like there is no other explanation for how smoothly the meeting, and their agreement to separate placement in less than an hour!

So you would have thought that come the first day of school, that I would have been confident in God taking complete control, and he has been SO faithful in everything else, that even in transporting her He is holding her in his hands. But, in my weakness, there I was breaking speed limits and swerving through lanes on I-90 because I still just couldn’t completely ‘let go.’ I was texting with a close friend a few days ago, telling her how anxious I was feeling about her starting at a new school, especially after her not being at home for the last 7 months straight, AND after the crazy summer she had medically it just makes me feel a bit anxious to leave her! “Let it go,” she said. I told her not to make me cry! “They are your words!” she said. (I mean technically they are Elsa’s words but…) Funny though, isn’t it? How quickly we forget? “Let it go” has become our motto for Rylie’s life. And to ‘let Jesus’ has been what we have fought to cling to. And yet, how many times have I typed or hash tagged that phrase, only to forget it when I needed to remember it most? My friend so gently reminded me, and she was right. It reminded me of the importance of keeping the promises of God close in our minds and hearts, and continuing to praise Him and speak truth over ourselves even in the midst of despair.

I cannot control all the things, and if I could why would I need Jesus? And even when things happen when I cannot possibly understand how Jesus could redeem it, he has truly never failed to!

And here is the really amazing thing about all of this – If it were not for the pandemic, and the school district going remote, it is very unlikely that I would have ever looked into separate placement. It is something that wasn’t even on my radar until all of this. Because of Rylie’s even more complex needs and our desire to have her monitored even closer than ever, sending her to this new school actually feels so much safer and accommodating far beyond what the public school system could have provided. It happens to be held in the same building where she has been doing outpatient therapies for the last 6 years, so we already know many of the staff, and the place itself just feels like a second home. They are so well set up to educate children with IEPs beyond what I could imagine! And it is definitely something I believe we would have had to fight a lot harder for if it were not for the pandemic. It has made me thankful and amazed at the way God has provided something for Rylie that I could have never possibly dreamed up on my own. He took a despairing situation in the middle of a pandemic where I couldn’t possibly see a good outcome, and blessed us with immeasurably more!!

Never has this scripture in Philippians been more meaningful to me, 

“…do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:6-7

Christians quote this verse and throw it on everything from mantles to greeting cards. And yet, I am not sure that I have really absorbed or even believed it so much as I have through this experience. One of the verses my Bible cross-referenced this passage happened to be a scripture God has brought to my mind frequently the last few weeks: Ephesians 3:20-21: “Now to him who is able to do far more abundantly than all that we ask or think, according to the power atwork within us, to him be glory in the church and in Christ Jesus throughout all generations, forever, and ever. Amen.”

Amen. He truly did far more than I asked or could have imagined. These scriptures are so much more alive to me today than they were before. Thank Jesus for his never ending faithfulness, patience, and His steadfast love for all of us❤️

#LetGoandLetJesus

Suffering Strong

I started this morning no less sleep deprived but feeling a lot more confident. I made a list of talking points and questions and went to rounds with the doctors fully caffeinated, in complete confidence. After stating a few things I’d like to see changed or adjusted and advocating for Rylie in letting them know how not okay it was to continue to flip her over and poke at her sore back multiple times a day, I felt like a boss, and had wished I had a mic to drop. 13 days in the hospital can do a lot of things, and the combination of sleep deprivation and trauma of seeing what your child has endured day in and day out is the perfect combination for a righteous special needs mom-advocate-anger to rise up inside. A semi-constrained ‘mom-hulk’ anger if you will.

But after repeating the ultrasound of Rylie’s blood clot today my mood shifted quickly after the results came back as unchanged even after so many had prayed for healing. I felt like I was balancing on top of a fence. The one side is the side that is hopeful and is straining to believe that Jesus is near, and that he cares, and even though I cannot see the whole picture, that he truly will work all for good. And the other side is the part of me I feel tempted to fall over to, that is full of doubt and questions. 

The tipping point was the injection education where I was taught how to properly handle needles and how to effectively give Rylie an injection, every day, twice a day, for the next three months after we get home to treat the blood clot. After everything I have seen my daughter go through in the last month, the last two weeks, much less the last 15 years – I struggle to understand and accept how allowing her to go through more pain and have even more complex medical care than it has been already could possibly turn into something good. When you are with your child 24 hours a day for weeks in a hospital, there is a certain survival mode your mind switches to. Not only to battle sleep deprivation and lack of privacy, but to not be completely consumed with grief and heartache at the day in and day out of watching her get poked, stuck with needle after needle. She has had to have multiple foley catheters inserted and upwards of 20 blood draws from finger pricks. This is in addition to over 15 different IVs that have had to be placed at different times because of how difficult it is for her body to keep one working. She has had 2 CAT scans, an MRI and had to be sedated 3 different times. She’s had to get stitches in her back on two separate occasions without sedation, and had fluid drawn from her back with a large needle. I cannot even begin to estimate how many total labs and cultures she has had done in the last few weeks. The last 13 mornings she has had someone in her room waking her up at 6am to promptly flip her on her side and poke at all of the sore places on her back. Followed by another group of people an hour later every morning to do exactly the same thing. This is all really just the tip of the iceberg, and not taking into account the major spinal surgery she just endured a month ago. So when they told us a couple of days ago she now has a blood clot I decided I wouldn’t accept it. I felt strongly Jesus would heal it. In the depths of my soul I did not want this because it was both terrifying in itself, and overwhelming to think about the treatment of giving her injections twice a day for the next three months to treat it.

I believed I was supposed to pray for healing. We were supposed to pray for healing. And when they did the ultrasound today I wanted them to say it was miraculously gone. But it wasn’t. And so they sent me off to parent training to learn how to give my daughter a shot twice a day. How to hold her skin, and what places and angle to give the injection. And all I could think of is how she doesn’t deserve it. To have a needle pushed into her extremities twice a day every day for three months. And psychologically how do you become okay with inflicting pain to your child even if it is to help them? Even if it is a treatment that will keep them from more harm. Up until now basically all of Rylie’s complex care to keep her healthy and alive has involved things medically that are out of the norm, but are not necessarily painful for her. She takes multiple medications and uses a feeding tube to eat. She wears leg and feet braces and has multiple pieces of medical equipment to help her function better, but none of them cause pain. They just enable her to have a better quality of life. So I guess the thought of having to do something that inflicts pain on a daily basis makes me feel SO sad. It breaks my mother’s heart. How can you ever just become okay with doing something that knowingly causes your child harm?!?! Except if you knew that you had to cause the harm to bring healing…

I don’t know. I could be really angry and despairing, and in fact part of me wants to feel that way. But as I shared a week ago, Jesus is teaching me much about not falling into despair and choosing hope instead. And I see the effect Rylie’s life and our family’s story has on people. Jesus has used so much of it for good. Rylie’s joy for life alone is a testimony to the goodness of Christ. Today I’m truly fighting to choose hope, and to believe in God’s goodness.

I was reading just last night ‘The Gift of Being Yourself’ by David G. Benner. He talks about our life calling and how apart from God we cannot possibly understand who we were created uniquely to be. That knowing God goes hand in hand with knowing ourselves. 

“Our call, like Jesus’ call, is to live out our life in truth and in dependence on the loving will of the Father. As was the case for Jesus, the discernment of this call must always involve wrestling with God, our self and the devil in the solitude of our private wilderness. And as for Jesus, this discernment must always occur in the light of our present life circumstances. This means that attentiveness to God’s call is a lifelong matter.” And he goes on to say, “Too often we think of God’s call (or our vocation) solely in terms of what we do. People speak of being called to the ministry or feeling called to work in healthcare or teaching. However, while doing will always be involved, vocation is much more than our occupation. It is the face of Christ we are called from eternity to show to the world. It is who we are called to be.”

I came back to our room after being trained how to inflict pain on my own child (a dramatic way to describe how to give her injections). And had to have a really good cry. It feels like too much. It feels unfair. And I feel like another small part of me is being crushed inside. I’m already grieving the months to come that I will have to cause her pain over and over again, even if it will be for her benefit in the end. And as usual when I sat down to write out all of my despairing, sad thoughts, Jesus brought new ones to mind and connected hopeful thoughts to my painful ones. I felt Him actively holding the broken pieces in His hands and rebuilding them into something more useful and more beautiful. I feel Him holding my hand and gently guiding me forward and its with everything I have that I have to look at Him and look forward instead of looking only at the heartbreak. This entire experience this past month has stretched my faith in a new way and highlighted Jesus in all the things in a new way for me. In the book ‘Suffer Strong’, they talk about glorious scars and ironically quote the verse that is on our Facebook Page for Rylie:

“God’s works aren’t displayed only in the fruition of a hoped-for outcome —healing of the weakness or pain—but rather that God’s works and His power are most evident in the weakness of itself: “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9).

If our weakness is not entirely apparent, then God’s strength will not be entirely apparent either. God’s works are powerfully evident in His healing of our hurts, but perhaps even more profoundly in the not-yet healing. That’s why how we suffer matters. Suffering strong offers a unique testimony to all who witness it, unveiling an ‘in the midst of’ God who is too big and too good not to be worshiped, whether or not our longed-for outcome materializes.” And in referencing Jesus and the resurrection they go on to say, “His resurrected body still bore those horrible scares, those terrible reminders of what had happened to Him at the end. Were the scars only there so His disciples would recognize Him? Is He the only one with scars in heaven? I guess we’ll see one day, but for now, that image reminds us that one of the final pictures Jesus left us of Himself included the scars that healed the world. Love is His end goal, but sacrifice and scars are the means to that end.”

Today I wanted to claim healing. A victory in healing. And give Jesus all the glory. I wanted to be able to tell all the people who stood with us faithfully in prayer that Jesus came through, and healed her blood clot! And it took me a bit to absorb that He hadn’t. In fact nothing about her condition had changed. Even though we all prayed with so much faith that it would. But maybe this wasn’t just about a physical healing answer to a prayer. “Quite beautifully, scars can also lead to deep communion between fellow sufferers.” (Suffer Strong) Maybe it was more about a LOT of people coming together in community and love, with the same heart and mind and desires. Maybe some of those people haven’t cried out to Jesus in a while. Maybe it was about a LOT of people following our journey and feeling our pain with us. Maybe it was about a LOT of people, many whom we have never even met, seeing Jesus in the smile of Rylie even as she continues to endure difficult days in the hospital and more discouraging diagnoses. And maybe it is more about further solidifying our journey in suffering and opening up more doors for community both with those who also have disabilities or children with disabilities, and/or in strengthening their voice as we advocate for the community as a whole. Maybe it is more about helping the world and society that tends to look away from such differences, to see the true beauty within them. Maybe Jesus is using our journey in ways we can’t even see or comprehend yet. John 9:3 says, “This happened so that the works of God might be displayed in him.” It isn’t the first time we have pleaded for healing. But whenever we have prayed for healing in the past, Jesus has brought always healing – just not always in the ways that we would expect…

“‘He can exact nothing from man that he has not exacted from himself.’ God didn’t just bring us up to Him; rather, he came down to us and in doing so opened Himself to all the struggles we face. He has experienced our limitations. He’s not just sympathetic towards everything we suffer, but He can empathize too. 

Paul sums it up in one of my favorite passages ever: ‘We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus so that the life of Jesus may also be revealed in our body’ (2 Corinthians 4:8-10) Because Jesus was crushed, in despair, abandoned, and destroyed on the cross, we never will be. Because defeat wasn’t the end of His story, it won’t be the end of ours either. We can suffer strong because we know that He’s been where we are, and he will never leave us alone in our pain.” (‘Suffer Strong’)

We will continue to pray for healing, and I hope you all will too. We will continue to hope and I hope you all will too. And we will dig deep, and try to suffer strong because His grace really is sufficient and love really is the end goal!

“Trauma, and suffering in general, can force life’s trivialities, stresses, and distractions to fall away, inviting us to a clearer view of the things that matter most.”
(‘Suffer Strong’)

Fireworks from the 7th Floor

When Rylie was inpatient a couple of weeks ago we were on the 7th floor of the hospital with a view that could see for miles. One evening somewhere in the distance fireworks were being shot off. They were quite small from our point of view with the distance and being so high up, but we could see them and enjoy them in our own way. I had this thought that night, that there were probably people gathered around nearby wherever these were shot off, to enjoy them from closer up. Maybe they had just enjoyed a cookout or had spent the afternoon at a nearby park enjoying the warm weather. How different were our views, I thought – we both were able to enjoy and watch the fireworks even though clearly we were in a much different environment and circumstance than those setting off the fireworks for pure enjoyment. 

Our family has had to learn over and over and over again how to balance and figure out how to find joy even in disheartening circumstances. We don’t always succeed, often succumbing to the pain, and getting stuck in despair. Another diagnosis, another hospital stay, another medical difficulty completely beyond our control. And then there are just the everyday challenges we walk through, in having a severely disabled member of our family. Every activity, outing, and daily plan revolves around accessibility and medication and tube feeds. People say we make it look easy, and probably often don’t have much idea of what goes on behind the scenes to go about everyday life with the extra responsibilities and care, but that doesn’t mean it’s always easy. Or easy to embrace and stay positive. But I admit that it has changed me for the better in more ways than I could have ever imagined. Pain and suffering, they change you. Sometimes for the bad, but sometimes for the good. It has taken a toll on us mentally and physically and emotionally, but it has also increased our capacity. Increased our empathy for others. And increased our awareness for when we see others going through significant challenges or heartaches. It has made us stronger, increased our faith, and taken us on a journey we would have most certainly never have planned on our own. And I can honestly say that Jesus never fails to redeem all the hard things. Usually in ways I would have never imagined!

So when I saw those fireworks go off in the distance from the hospital room that night, it reminded me of how we can still see the beautiful things even if it’s from a different place. Sometimes we get to see the fireworks up close when we have planned to see the fireworks and enjoy them. And other times, we enjoy them unexpectedly from difficult circumstances. Pain and joy can go together, we can hold them both. And often in our family and in others similar to ours, this is quite often the case. In fact more often than not when we experience joy, there is always at least a hint of pain because Rylie’s complexities don’t ever just go away. They are more manageable at times than at others, but there is a special kind of pain when you have a child with a chronic condition and complex medical needs. It does become your ‘norm’ in some way, but I’m not sure that it’s possible to ever fully escape this feeling in your heart when you know this is the best condition they will ever be medically. You can accept it and embrace it in a way, but it doesn’t ever fully feel right, so to speak. For me, it’s like a tiny metal weight is hanging from my heart. A reminder that even on the best of days, the pain is still there. Some days it’s heavier than others. And I don’t always consciously think about it, but it’s there. Affecting the way I think and socialize, and go about life in every area. In fact, most of what I do is probably filtered through it to an extent. But pain is a funny thing. It can affect you in ways you wouldn’t think it would. It makes you appreciate the good and beautiful things in life with a greater intensity. Fireworks aren’t just fireworks when you are sitting in a hospital with your daughter. They are a brief respite from the uncertainty of life in that moment, and a brief sense of relief and joy and your brain focuses on something other than your child’s unstable medical needs and the mental toll it has taken on you in the days and hours you have sat in the hospital room by her side. It’s a reminder that you can still find beauty if you squint hard enough. Even if it’s from miles away on the 7th floor. 

This Fourth of July weekend we are back in the hospital again, with a full fireworks display because of the holiday. And once again I thought of the analogy. So often in our family, it feels like this analogy in more ways than one: like we spectate at the world going on around us while we watch from inside the window of disability and complex medical needs.  We watch from afar and see all of the things from a different view. We see everyone’s posts of family beach vacations, and camping trips. Hiking trails and amusement park fun. All of which are nearly impossible for us to enjoy as a family because of Rylie’s limitations. We do manage to be creative and find our own ways to have fun together and enjoy life. And we accept that we will never be able to take a ‘typical’ family vacation, as traveling anywhere of any distance becomes a huge challenge because of the logistics of medical equipment, medication and supplies. And I guess it’s what also often lends to the feeling of isolation. But we have to be careful not to constantly compare what everyone else is doing, because we can sink really fast into self pity. And we have to daily choose to live in the present, learning how to thrive in our own unique ‘norm.’ I’ve used the analogy before, but it’s so true how we have to choose to look up and ahead, and not around or behind us because keeping focused on Jesus and the present is often the only thing that keeps us sane. And it’s because of our circumstances, we have experienced faith and hope and joy from a much greater intensity and larger scale than had we not had this journey with Rylie. 

It’s because of the experience of living with a medically complex sister Rylie that my 13 year old son has more compassion for people than I ever could have instilled on my own. I’ve never seen another child filled with so much empathy and compassion for others. And it’s because of having a child with complex needs that I’ve made some of the deepest friendships with other moms of special needs kids, that we can sit in the pain together, and feel known and seen. It is a unique bond between friends that cannot be explained. It’s because of broken dreams and shattered hopes for my child, that I have a new strength that I did not know could exist and an endurance beyond what I could have ever imagined. And I doubt any of my original hopes and dreams could have possibly matched the fullness of joy my daughter now brings in even just her smile alone. Because more than anyone else I know, she knows joy. She feels it deeply, and rarely lets anything stand in the way of her experiencing it. And maybe if she walked like most other people, and didn’t have all of the medical complexities she would still be just as joyful. But it just wouldn’t be as amazing as it is now, as she demonstrates this attitude despite all of her challenges. Joy through pain and suffering is a joy only Jesus could bring. 

This morning after running to the store to get frozen meals, (because I prefer them over the hospital cafeteria food) and grabbing Starbucks for our morning hospital fuel, a man who was also coming from the parking deck happened to get on the same elevator as me. He saw my backpack on my back, grocery bag in one hand, and coffees in the other and commented how it looked like we were going to be here a while too. I humored him, and he proceeded to comment on the handicap placard he saw hanging from my mirror in the van. He said, “ I saw your handicap sticker and thought, man that can’t be good!” His son was apparently here for a freak bike accident, and likely without any permanent disabilities. I politely explained that my daughter used a wheelchair and proceeded to get off the elevator at the appropriate floor. But I couldn’t shake his comment. “….man, that can’t be good!” It just didn’t sit right, but I’m also used to a LOT of ignorant comments involving Rylie’s disability. After processing it for a moment, I realized how unfortunate it was that he was unable to see past the disability. He only saw it as a hardship. And like most of us who try to avoid pain, anything that involves the word “handicap” doesn’t ever seem to be used in a positive light. But Rylie tends to break that ideal, and challenge that assumption. It doesn’t mean we still don’t have hard days, and deep disappointment. It means we have learned SO much we would have never learned otherwise. It has shaped our souls in ways that could not have possibly been shaped without the experience of her handicaps. And, for the record, we don’t like to say she is wheelchair bound, we like to say she uses a wheelchair. Because we are thankful for the wheelchair and the way it has given her more freedom to be mobile. And, she LOVES her wheelchair. She’s proud of her blue and white tag that hangs from the rearview mirror of our wheelchair accessible van. Because she focuses on the good things. And her example of her attitude in life wouldn’t be nearly as impactful if she didn’t have her wheelchair! So – random man on the elevator – had I been quicker to process, and perhaps a little less sleep deprived and a lot more caffeinated, perhaps I could have quickly informed you in our few seconds on the elevator that actually our handicap IS a good thing! It serves as a reminder of the blessing of a wheelchair and how it enables our daughter to get around, and it typically allows us to be able to park closer to help her have easier access to getting into places, AND it is just another thing that represents the beautiful way Jesus still shines through our daughter and our story and strengthens our hope in Him! Maybe next time he will catch me post venti Starbucks (Americano with a splash of cream, extra hot) instead of before.

Because of the hard things we walk through daily, fireworks from the 7th floor of the hospital are not just fireworks. And our handicap placard is not just a handicap placard. They are a reminder of how Jesus gives us hope through the pain. Joy in the suffering. And that we can choose to look for the good and the beautiful, even if it means we have to refocus or look a little harder sometimes…

Romans 5:2-5
“Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

 

I Wonder…

As we were sitting in the living room we heard a horrible noise come from my daughter’s bedroom. It was something between a cough and loud heaving as though to vomit, combined with a choking sound. I rushed in and found her to be seemingly choking and attempting to cough or vomit something up. Except because of her lack of control over her body and muscles, she is unable to do this independently. Paul and I tried to both sit her 87 pound body up while her limbs still retracted and fought against us as they do in typical life because of her movement disorder. Once he was able to lift the top half of her body into more of a sitting position, I held her head as it bobbled without control to hold herself up, because it was taking every ounce of her strength to strain into this cough/choke/vomit reflex. Her eyes were watering and there was a crackling sound coming from her throat. After managing to produce a small amount of spit up over heaving for several minutes, her seemingly lifeless body relaxed after using so much energy and effort to clear this episode. We both lifted her gently into her wheelchair to give her a chance to sit up for a while and gain some composure back. I grabbed the pulse oximeter to check her blood oxygen. 86. That was the number she was reading. For those not super familiar with medial jargon, this meant she was not getting enough oxygen in her bloodstream, and can be a more critical number if it stays there for too long. Eventually the number crept up to a safer number over the next half an hour, but still never quite reaching her baseline. She was cool to the touch and somewhat clammy. My heart raced and I felt a flood of anxiety, fear, and grief wash over me as I fought back tears. While this is not an everyday occurrence, it also was not something new. Her temperature was running a bit low, and after we eventually felt comfortable getting her back in bed, I couldn’t shake the trauma and fear that came up from a place deep in my soul. Instinctively, I packed a few essentials in case I needed to take her to the ER in the middle of the night, and laid awake for a while praying for Jesus to keep her safe.

It is more than a disconcerting feeling to fear for your child’s life while they lay warm in the comfort of their own bed at home. That is where they are supposed to be the safest. Where your mind can be at ease, knowing they are safe within the walls of your family home. And yet with my medically complex daughter, I feel no safer when she is in her own bed than I do when we use a crosswalk on a busy intersection. In fact, in some ways that feels safer. When your child is completely dependent for all needs, in addition to multiple medical diagnoses, there are many things that could go wrong or affect them in traumatic ways beyond your control. For example, we did everything right putting her to bed that night: we started her feeding tube correctly, got her leg braces on correctly, inclined the head of her bed, and changed her clothes and diaper. And yet, she still was in imminent danger. Nothing we could have done would have prevented this episode, and yet had we not been within hearing distance she could have likely died choking to death on her own secretions and vomit simply because she lacks the ability to move her body independently. The thing is, this was just another Tuesday night. Things like this don’t happen every night, but they do happen without warning and on a semi regular basis….

Just the other day in the midst of swirling news reports of virus statistics especially affecting the elderly, I decided we should write to a few of our neighbors on our street in that age range to let them know we would love to help them run errands or grab groceries if they needed us to. It was at least a way I felt we could love them and help calm their fears a bit, and help them feel not alone. But when I reflected on this idea, I realized that I haven’t really thought of reaching out to our older neighbors like this until a pandemic hit. I was thinking how the fact that we are all basically quarantined to our own homes had made me increasingly aware of those nearby, whom I typically do not think often of on a regular basis. It isn’t that they wouldn’t appreciate help any other time, or that they are suddenly miraculously any younger outside this pandemic. But it somehow highlighted their existence to me, and increased my awareness. It made me sad that I haven’t reached out more before now, and while I have every excuse you could imagine, it doesn’t mean I have never had the chance to reach out and love them in some tangible or relational way. 

Lately, extra concern for our special needs population had me somewhat perplexed. As a mom of a medically complex, immunocompromised child who is severely disabled, I am actually not really on much more alert that I am on a regular basis. My cortisol is already producing as though I’m in a crisis – on that Tuesday yes, but any other Sunday through Saturday as well. I’ve heard some say that the stress level of caring for a child like ours is comparable to that of a combat soldier. Two very different experiences? Yes. But not much different in the amount of stress and physical toll that each environment takes on the person. I just don’t think many people realize the everyday stress, mental and emotional strain, and the capacity in which we function on a daily basis JUST to keep our daughter alive. And yet I felt perplexed I think because any other day of the year pre-Coronavirus, our society isn’t super concerned with the complexities and toll that it takes on us as caretakers, and as a family to care for a child with such medical complexities and severe disabilities. I think it has highlighted the fact that the weak and more fragile in our society are often overlooked or an unintended afterthought. Just as in my own recent awareness of how our elderly neighbors have been suddenly highlighted in my mind.

Food for thought:

Our eyes will focus wherever we choose to look. We cannot look at our weaker population (elderly, disabled, immunocompromised) while we are looking at ourselves. Just as if we are solely focused on looking at another person, we may find an imbalance with our own needs. But we can choose to stand beside them and use our eyes together to create a vision and passion for giving them more of a voice in this world, and allowing them to be seen and valued rather than overlooked. To move towards them in a posture of understanding and empathy and finding ways to love them well and giving them an equal voice and platform in our society.

And so like my older neighbors who I have not particularly thought much about until now, I think somehow this pandemic is waking people up to noticing those who are more at risk. Suddenly there is this awareness and concerned thoughts flowing through people’s consciousness. And I think there are quite a few of us in this population asking: “Where have you been?” Our elders are wondering: “Why now are you suddenly so concerned with my wellbeing?” Families like ours are perplexed why suddenly we are in the limelight of others worrying and all at once regarding us as fragile and in need of care. When this is and has been pretty much our life circumstances for many years…..

Please hear me: I am guilty, you are guilty, most of us are guilty. I am in no way trying to blanket accusations or assumptions. I just think we all need to rise up in this time of unknowns and see the cracks in our humanity. We need to use this time of forced isolation to pause and reflect, and think of those who may feel isolated on a typical basis. And I think that is what I am beginning to see happening. With us all being forced to be still, suddenly the more fragile in our society seem more obvious. It wasn’t that we didn’t exist before the pandemic. It has merely given more awareness to our existence. This is an opportunity to allow the busyness and typical distractions of our society fall away, and take a hard look at what there is to work with when everything is stripped away. Because I feel at the core of every human being there is at least a fraction of a desire to have compassion and care and think of others. We were created in the image of God. Jesus has compassion and cares deeply for every single person. But unfortunately our society has become increasingly inward focused and driven by the mindset of ‘every man for himself.’ 

When we were at Walt Disney World last year for Rylie’s Make a Wish trip, there was a moment etched in my brain that will forever exist as one of those deeply monumentally sad moments in our lives. It was the night that we were all walking out of Magic Kingdom, deemed by most as ‘the happiest place on earth,’ while our 12 year old son Hudson was sobbing. I asked him what was wrong and he replied, “I just feel like NOBODY cares about MYYYYY SISTEEEEEERRRRR!!!” It broke him that SO many people overlooked his sister in her wheelchair, and were even willing to push to stand in front of her without any regard for her being able to see the show we tried to watch. We struggled to maneuver through a crowd of people who were less than quick to step out of the way of her wheelchair, often stopping to just stare with gaping mouths. It was every man for himself.  And while it is a familiar scene in any theme park I have ever been to, it never ceases to make me sick to my stomach and wonder why we decided to put ourselves through the experience one. More. time. And yet even in our everyday experiences in life, I’m not sure they all fall so far from that of a theme park where everyone is so concerned for themselves. How else do you explain all of the ridiculous toilet paper hoarding during a viral pandemic? A popular toilet paper company is describing it in the news as “uncharted.” An “uncharted” toilet paper crisis?! Are they buying 2,700 rolls of toilet paper so that they can share with their neighbors? I doubt it. Because in these moments, our society as a whole is focused on themselves, not others. Although I still struggle to understand why the hoarding of toilet paper specifically is somehow helpful during a viral pandemic…… but I digress…..

I’ve been recently reading a book entitled Suffer Strong. In it, they discuss physical wheelchairs, but also the idea that everyone has their own ‘invisible wheelchair’ of sorts:

“None of us have unlimited access to whatever we want or whatever we planned for our lives to look like. We are constrained by our marriages or our singleness, by our children or our childlessness, by our obligations or our debts, by obstacles real or imagined. No one enters life or leaves it without feeling bound by something. Some of us have physical wheelchairs, but we all have invisible wheelchairs inside us. None of us can do life all by ourselves. We need God, and we need each other.” -Suffer Strong pg 23

“We all need each other.” Personal priorities often dictate the majority of our decisions as a society. We are an entitled group of people, concerned mostly with ourselves and what will affect only ourselves. Mark 12 gives us a very direct and clear instruction when it comes to figuring out which of the commandments Jesus considered most important. And while many Christians quote and refer to it often, I can’t help but observe that it doesn’t seem like we actually live it out often. Verses 30-31 read, “And you shall love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. The second is this: ‘You shall love your neighbor as yourself.’ There is no other commandment greater than this.” Period. Notice there are no, “except whens,” or “only ifs.’ There is a period. Like, boom. Mic drop. And if it were appropriate to add current day examples to scripture, the newest version might say, “Like hoarding toilet paper. Buying ALL the toilet paper is not loving your neighbor. If you are primarily concerned with the absurd volume of toilet paper that is existing in your own home, this is an example of not loving your neighbor. Buying normal amounts of toilet paper and offering to pick up some toilet paper for your friend- that is loving your neighbor.” Thinking of their needs and situations as well. And it may even mean sacrificing your very last roll of toilet paper in extreme circumstances. But that would be an example of loving your neighbor ‘as yourself.’ And while we may laugh at this scenario, it really could be a very simplistic example of how to love your neighbor. (albeit weird)

You guys! We have a unique opportunity where most of us are being forced into somewhat of a sabbath and basically canceling of normal life. It is difficult? Yes. Annoying? Yes. Are you going to need extra toilet paper? I really don’t think so… Is it constraining? YES. which is why I believe it is a unique opportunity to take advantage of the space and quiet and stillness, and look deep into our hearts and souls and find out what parts could use some work. The parts that can get so often ignored or excused because we just don’t have time or energy. The really uncomfortable ones that we never want to go near because it is just that – uncomfortable. We have a chance to allow this to directly impact humanity in how we take care of each other without fear, and serve one another selflessly. We can practice now, so that when the pandemic does calm, and we all slowly adapt back to our typical scheduled lives, that we do so with more of an awareness of the needs and sheer existence of those around us. That as we consider our own needs, perhaps we are also considering the needs of those around us. Perhaps this is a gift of giving us ample time to reflect and re-prioritize the things in our lives that perhaps aren’t that important after all. (ie. extra toilet paper, etc) I’m not suggesting that you recklessly abandon the guidelines our government has given us. But I am suggesting that you creatively find a way to love people anyway and without fear. I am suggesting that you consider others as you find your way through this quarantine not in a sense of fearing that people could be infected, but in your awareness that we are all experiencing this together. This is affecting our entire nation. And much of the world. And I think it could serve as a great awakening if more were willing to shift their mindsets outside of ourselves a little more, and look to how others are being impacted. And in doing so, we can begin to shift our mindsets as a whole, post-pandemic, in growing our awareness and compassion for others, and finding creative ways to love and serve them well.

I want to encourage you: Keep texting. Keep calling. Keep checking in on your elders and those who are more immunocompromised. But also don’t be afraid to act and serve and love them in tangible ways. And when this is all said and done, when the last medical mask is incinerated and the last person released from the hospital who was infected – when seemingly normal life seems to come back around, and we can all freely eat in public places, check out library books again, and for the love – we can stop trying to feebly school our children in our homes, then I hope we keep that momentum and incorporate all of that compassion and empathy and tangibly love each other well. I also hope we gain a new appreciation for stillness and quiet, and how powerful those things can be in our growth as people, and in meditating more on the more important things.

In an age of constant distraction, Mr Rogers maybe said it best, “Our society is much more interested in information than wonder, in noise rather than silence…And I feel that we need a lot more wonder and a lot more silence in our lives.”

I wonder how a little more forced silence in our lives could greatly impact our personal growth? If we allow it…

And speaking of wonder, Wonder Woman once asked,

“If the prospect of living in a world where trying to respect the basic rights of those around you and valuing each other simply because we exist are such daunting, impossible tasks……. then what sort of world are we left with? And what sort of world do you want to live in?”

Let’s suffer strong. Thrive under constraint. Increase our wonder in forced silence. Let’s choose to see and love everyone always. And let’s ask ourselves:

“What sort of world do we want to live in?”…..

I don’t know what to say.

Fewer statements cause me more grief than when people say: “I don’t know what to say.” I have heard it multiple times either directly to me or have known people to say it in reference to me. I’ve concluded there are generally two reasons this statement is made: Apathy or fear. One or the other, or both. Apathy, in that they simply have no interest in my life circumstance and it is not their problem anyway, and nothing they say could possibly change anything so why bother? Fear, in that if they “say the wrong thing” or “don’t say the right thing” they may offend me and/or present an even more uncomfortable circumstance than the already existing one in my life and so they conclude that saying nothing and avoiding the situation entirely is much better than possibly saying the wrong thing.

When your response to someone is that you do not know what to say, that in itself actually communicates more than any amount of words ever could.

When did speaking, talking, or saying the things become the only way we communicate with each other?

I have learned a lot about communication in the last decade. My daughter has had speech therapy every week of her life for over 10 years. I can school you on everything from oral motor exercises (have you heard of such a thing?) to computers that track your eyes for those who have challenges with their mouth and hands when communicating. There are low tech devices and books that require the help of another person to flip through when helping another communicate their thoughts, and there are a variety of high tech communication devices to accommodate a variety of abilities (or disabilities as many would say). I have learned in the last 15 years of my daughter’s life that she has so much to say, and while she does not always have the physical ability to get her mouth to cooperate, she has found her own unique ways to communicate her wants and needs and general conversation because she craves human connection. In fact, she has recently preferred using a flip book to help her practice communication in therapy which requires the help of a person to flip through the book. She is preferring this over using her $15,000 high tech computer that will track her eyes to help her communicate and I have concluded that one of the main reasons she prefers the book is simply because it involves more interaction with another person! She loves people! When we are at home and having a difficult time understanding her words, she will often strain to move her eyes and head to the direction of something she is talking about. And occasionally extreme circumstances, if she is feeling fearful or pain and is unable to articulate, she will just begin to scream and cry and stiffen her body as a defense because she has no other way to tell us in that moment what is hurting or frightening her. She finds a way to communicate with or without her words, but even with her limited physical and cognitive ability, even she realizes there is more than one way to communicate!

When we moved to Cleveland 5 years ago, we instantly became aware at the number of refugees residing here and because of some amazing relationships we had with some locals when we first moved here, we were able to become well educated on refugees and their stories. We were able to make connections with some families, many of whom did not speak much English. I found myself drawn in and longing to spend more time with these families as there is a kind of raw humanity that seems to uniquely exist within someone who is a refugee. (Refugee: a person who has been forced to leave their country in order to escape war, persecution, or natural disaster) It is a quiet strength and a passionate, determined spirit like I have never seen. And never have I felt more welcomed in a home, than that of a refugee. I feel like we have so much to learn from those who have lived through the experiences that have now given them this “refugee” label. The thing about those who have found themselves under this label is that I have walked into countless homes and across the board – no matter what country they are originally from- they never cease to amaze me in their hospitality counterbalanced with a hunger, for human interaction and connection. I have sat in a house with a family for hours, without either of us being able to communicate in a common language other than basically greeting each other, and when I begin to head towards the door they look at me in such surprise and at times distress because I have to leave. You see because even though we could not communicate verbally, we used body language and pointing and a little Google translate to get by. At the end of the day, we called each other friend in our own native language, even though we couldn’t say the word, our hearts knew it, and when we would see each other again it is with the same warm, familiar feeling you have when you see any of your native language speaking friends.

You see, because words are not the binder of all things – love is. We all crave human interaction and love.

Maybe you have noticed that Jesus was not a very wordy man in the Bible. He was pretty direct and concise whenever he spoke. And yet it wasn’t always his words that spoke the loudest. One of my favorite passages of scripture is in John 11 when Lazarus dies. No, I do not love that Lazarus dies but I do love Jesus’ raw, human reaction to his death. Actually, I feel like when I read it that it is more of a reaction to Mary in her grief. Jesus had already known for a bit that Lazarus was dead long before he ever got to his tomb. However, what broke him emotionally wasn’t until after he “saw her weeping.” Then it says ‘Jesus wept.’ It did not say that Jesus proceeded to tell her that He was good, and all things will work together, or give her a mountaintop sermon on life and death. He actually did not say much of anything. He wept. I love this example because it is Jesus showing us how we can be compassionate with one another without having to know the ‘right thing to say.’ Because sometimes I think saying something isn’t the language we should be speaking at all. Because sometimes saying nothing is more powerful than saying anything at all in a deeply empathetic way. Sometimes just being present means more than any well articulated amount of words could ever mean. Just like Jesus was not too prideful to sit with them in their emotion and feel what they were feeling in that moment. He was simply present. And he wept and felt with them.

God created us as complex beings with multiple ways to communicate. And while verbally will always be the most common, it is most certainly not the only way we can communicate love to each other. If you have ever heard of the book ‘Love Languages’ you know that there are five main ways we communicate love to other people. (words of affirmation, quality time, acts of service, physical touch, and receiving gifts) Only one of those actually requires words!

I’ve read a couple of books by Bob Goff lately and it is easily one of the most quotable books I have ever read. In fact I could probably have just posted this blog post and in place of all of my own words I could have said “see Bob Goff book.” Because I feel like he totally gets it. One of his books titled Love Does pretty much sums it up don’t you think? If he thought that saying things was the most important thing we could do then I imagine his book would be titled Love Says. Of course many of our interactions with people could and should be words, but I think Bob would agree with me when I say not knowing what to say is not an excuse to withhold love or interaction with other people.

“That’s one of those things about love. It always assumes it can find a way to express itself.” – Bob Goff, Love Does

Love sits. Love waits. Love gives. Love sees. Love weeps. Love smiles. Love hugs. Love is present. Love doesn’t always know what to say, but love does.

“I learned that faith isn’t about knowing all of the right stuff or obeying a list of rules. It’s something more, something more costly because it being present and making a sacrifice. Perhaps that’s why Jesus is sometimes called Immanuel – “God with us.” I think that’s what God had in mind, for Jesus to be present, to just be with us. It’s also what He has in mind for us when it comes to other people.” – Bob Goff, Love Does