Present

“Most importantly we want you to know that you have found a partner. We are here with you now on this journey to provide your child with the best possible care. You are not alone. WELCOME to the CCPR!”

I read those words at the bottom of the email from the Center for Colorectal and Pelvic Reconstruction (CCPR) at Nationwide Children’s Hospital, and instantly *tears.* What in the world? Why was I tearing up over a colorectal email?!? And it only took a few short seconds for me to realize that it was because those words at the bottom of the email were so directly compassionate and thoughtful towards me and my daughter. Specifically, the sentence “You are not alone,” stood out to me and anchored me in. I instantly felt excitement, a sense of belonging, confirmation, validation, and ultimately really encouraged as I concluded reading my letter from the “Center for Colorectal and Pelvic Reconstruction.” And then a sense of emptiness and sadness immediately followed, when I recognized that this sense of belonging and validation coming from of all places, the “Center for Colorectal and Pelvic Reconstruction…..”

This world of complex needs, special needs, medically fragile needs, and 24 hour hands on care of another human being is more than words can describe. You cannot adequately depict a ‘typical’ day no matter how hard you try, and no amount of blogging will ever convey the deep ache in my soul I experience because of this emotionally intense life journey I am living. No one can fully relate to my journey. And even those who can relate the most because they are also experiencing what it is like to parent a medically fragile child, can only relate to an extent because each journey is so individual. Although I am beyond grateful for these moms who I have met in person or virtually who don’t worry about what I can give them as a friend but who I could blather for hours about special needs jargon and they will listen and have open conversation about it with me because they ‘get it.’ They get the whole picture and its complexities. They get the unfathomable levels of stress, and the unavoidable anxiety of being a primary caretaker to a child who by all accounts should have 24 hour professional nursing care. And they get the social isolation that goes with all of that. It is a given. I do not have to ask another special needs mom if she feels isolated. We all know that we are. And while there is great encouragement and sense of solidarity felt when we spend time together, there is still nothing that can even come close to filling the gaping hole of isolation from society and those not experiencing the day in and day out of full time care taking and special needs parenting.

Does that sound depressing? I won’t try to excuse that it might, because it should. Which is why the mental health of all special needs moms is probably at catastrophic levels of varying degrees of anxiety and depression, and the majority of them probably go untreated professionally. I would imagine more special needs parents than not struggle with some level of mental illness and probably most of them do not ever vocalize it or even recognize it. I would say this to be true because when you are immersed in the complex care of another human being 24 hours a day, you don’t just take self care days, or make appointments for counseling or therapy. Because you already have enough appointments to take your child to. And if you do have any time or space for ‘self care’ you probably spend it running through your to-do list of medication refills, unanswered medical emails and messages, or wondering whether or not your child had enough wet diapers that day. Your brain is a rolling checklist with a variety of colored mental post-its popping up over and over and over….. Did I make the follow up appointment? What caused the extra bloating today – did I run the tube feeds too close together? Their diaper was dry this morning so did I forget to give them enough fluids? I need to call Medicaid to appeal the equipment they denied…… Was that an adequate bowel movement or should I be concerned about a blockage? The supply company sent me the wrong order, I need to call to figure out how to get the right formula…… And then, there is the statement hanging over our heads above all other thoughts and questions, haunting us relentlessly: “I didn’t do enough today.” Because even if you can mentally do all the things in the checklist and keep your child alive by administering all 9 prescription medications that day at the correct times, and keep their diaper changed, and their tube feeds fed at the right times and adequate calories, there is still always at least that one thing (or 57 things) you did not do. Like the stretches you were supposed to do from therapy, or the practicing of their communication device. You did not work on reading, or have them practice driving their power wheelchair. You did not interact with them as much as you would have liked on a personal level, or read them any books. You did not help them have any assisted “play” time other than turning on Netflix or iTunes, and you did not get them out of their wheelchair enough for other positioning. And when you begin to think of all of the things that you did NOT accomplish that day, you realize there are simply not enough hours to literally accomplish ALL the things whilst doing the necessary things to just keep them alive. In addition to other regular life responsibilities. (Not to mention loving and taking care of their siblings as well!) And yet still, we go to bed at night feeling defeated. Because it is never enough. We struggle with guilt to an unimaginable degree and to others it probably just sounds ridiculous. I think there is “mom guilt” and then there is “special needs mom guilt”……

The thing is, it is a challenge to just enjoy our children. We walk this fine line of caretaker and mom. Wanting to desperately be that fun mom, and yet we are constantly pulled into care taking and the never-ending responsibility of literally keeping our children alive. We have glimpses here and there for sure. And our children never cease to bring us joy in the most unexpected ways. But there comes a time in your journey with your child, when you realize you have lost yourself. You have lost interest in the things or activities that used to bring you joy. You feel you have lost your joy and sense of humor. And you begin to lose faith in humanity as you fall deeper and deeper into the socially isolating hole of parenting a medically complex child. Never-ending care-taking. You cannot clock out, and even if you physically leave for a few hours to run errands or go to the salon, you no longer have the ability for mental respite. It is nonexistent. And as you continue to fall into this bottomless hole of losing yourself and isolation, and try to answer honestly when people occasionally ask how you are really doing, their typical responses usually only cause you to retract your emotions even more, as you realize the vastness of separation from them by their awkward and/or cliche responses. And I guess, who wants to hear me go on for half an hour about all of the ‘mights’ and ‘what-ifs’ of my daughter’s bowel complexities anyway? Or hear how stressful it has been lately because of ALL of the dynamics of her care involving pressure sores, urine retention, and reflux vomiting? But when they aren’t listening, no one is listening. Because “everyone” is “they,” and no one feels near. At least that is what it feels like when you are walking in those extraordinary days of complexities. The seasons where I feel like I cannot keep up with all of the ever-changing diagnoses and med changes? That is when I need to vent the most. When I need to blather all of the medical jargon I have digested from doctors and google. When I am spiraling emotionally and mentally because the responsibilities and care taking is taking its toll, but there is no real respite. It is not attainable. And no matter how many people tell me to take care of myself, I do not know what the crap they mean?! Because no matter what kind of “self care break” I try to take, my mind along with all of its never-ending post-its, is still there even if I can even find a literal hour and money to do those things. Which means I’m still not experiencing true respite. So then what?….

I think if you were to ask me honestly, and all of the other moms out there in similar circumstances, we would probably all give you the same answer. We just want someone to care. We just want someone to listen, and actively ask questions about our child and journey. We just want someone to sit with us. Tangible love is always encouraging as well, but it’s often the most awkward and uncomfortable thing that we actually need most: presence. Because we can sit in the hospital rooms near and far with our children or in our homes with them while care-taking day in and day out, but texts and social media posts only graze the surface of what our hearts crave the most: presence.

Presence can look like more than one thing, but ultimately it means we are being really heard, listened to, validated. Sitting with us when we cannot leave, or coming with us sometimes when we have somewhere we have to go. Asking awkward questions no matter how much you may worry you sound stupid or may offend us, and stopping to really comprehend that maybe no one else is asking us anything other than maybe how they can pray. Which is not necessarily a negative thing, except the people praying with me in person are non existent most times. And saying you are praying for someone is great, and it is not to say they are not really praying, but presence is praying whilst being present. Presence is showing up in your home and sitting with you when you are having an overwhelmingly stressful care-taking day. Presence is having coffee with me and asking me about my day or week. Presence is asking me in person, “What do you need? How can I help? How can I pray?” And even, seemingly ignorant questions like, “What is an enema? Is she pooping better? How does her gastrostomy tube work? What was that appointment for and what did they say?” Because when you are not asking me those questions, it is usually safe to assume that I am likely not discussing them openly with anyone else, and I am left to absorb all of the what-ifs and poop drama on my own. Which leads to isolation because that is what my life is consumed of right now.

Which has also made me realize how I have learned how to adapt and even pretend in social situations. I realize I have to if I want to avoid awkward looking away faces or people literally walking away after I give them a very honest answer. So while I am mentally drowning in the responsibilities and mental post-its, I continually try to adapt to whatever social environment I may be in for the moment. I have learned how to put up the wall and have ‘normal’ conversation when appropriate. It is causing me to feel quite mentally unstable at times, as I continually find myself reassessing every situation I am in, as to what I can and cannot talk about. At least if I want to protect myself from even more uncomfortable responses or lack thereof. It has caused me to grow emotionally hard at times, I admit. And at this point you are probably thinking I really do have some mental illness to be addressed….. but I would say to you it has become more of a survival technique. A survival necessity in a world who has become so non-present because of the ease of technology. In a world that has driven us all to make comfort our ultimate goal, and quick to write checks instead of being present. In a world where I feel like an outsider most times, as my life often seems so vastly different and ultimately ‘too hard’ to enter into on a relational level. And so yes, I do struggle mentally. I often fall between anxiety and depression with the former usually becoming my main filter for my day in and day out. And it has begun to show up in more physical manifestations as well. As one can only deal with so much mentally before the physical body begins to break down as well…

But on days where I am feeling crushed, painfully pruned, and isolated, I’m fighting to know that Jesus is still there. His spirit is still here. And I have to choose to focus on him and allow him to bring me comfort and rest. Because at the end of the day, I will not single-handedly change all of humanity and suddenly experience the relationships and presence I so crave. I have to learn how to shift my cravings to Jesus. The good shepherd. The only one who can give me and my mind true rest. Some days it is easy to believe, and others I have to fight for it. But if I cannot have faith that he can ultimately fill these gaps in my soul, then what am I living for? What am I clinging to? The truth is, it is easier when I have another physical human near, to speak life giving words of encouragement to my soul. Someone who will pray through the hard things with me, and give audible words of affirmation that my soul so desperately longs to hear. But what happens when people fail? And I sink. Where does that place my faith?? While I do not necessarily want to be here emotionally and mentally in the place I am perpetually in, I feel as though Jesus is slowly allowing all of the physical comforts to be stripped away, that I may only have him to cling to. And that he alone is my only provision of presence and peace. Solitude and respite. Of rest. Because oh, how my mind wants to rest……

What can you take away from this post if you are still reading? People need presence. Not just me, or all of my special needs mom friends. Everyone. This is my journey, but everyone has a journey of their own and at the end of the day, everyone needs presence. They need the love of Jesus whether they do or do not know what it means. Even if they do not know if they believe in Jesus, they can experience him physically by the body of Christ being the body of Christ. Which goes beyond just an “I’ll pray for you.” There are people walking through deep pain and hardships in their life. If they don’t think you care, they are not going to automatically tell you everything they are going through. You have to be present. You have to chase them with love and sit with them. People in our city of Cleveland and beyond are going through varying degrees of emotional and physical hardship, more than what we could probably possibly imagine. And while it is easy to throw them some money, or a quick “Hi how are you,” more often they experience the pain of being intentionally overlooked or not worth the extra effort and time to have a meaningful conversation. But they need presence. The more people feel the love of Jesus in a tangible way, especially through presence, the more they will be drawn to crave him and and his perfect love.

Philippians 2:1-5 says, “Is there any encouragement from belonging to Christ? Any comfort from his love? Any fellowship together in the Spirit? Are your hearts tender and compassionate? Then make me truly happy by agreeing wholeheartedly with each other, loving one another, and working together with one mind and purpose. Don’t be selfish; don’t try to impress others. Be humble, thinking of others as better than yourselves. Don’t look out only for your own interests, but take an interest in others, too. You must have the same attitude that Christ Jesus had.”

These are words that remind us to be present with others and love them well. If we are truly looking out for “others and their interests” it means we have to take the time to understand what said interests are to each individual. It is sharing in each others joys and burdens. But in order to effectively share these life experiences with each other, we have to be sacrificially present. This means a life of consistently dying to self and our selfishness and choosing to focus on Christ and others.

 

In this season of “presents,” more than ever people really need “presence.”

 

I don’t really have any other great transition to end this overtly transparent display of my heart. It is where I am though, and where many other special needs moms are like myself. But it is also where all of humanity is today on some level, I believe. If we all were to be entirely honest. Maybe not everyone can relate to g-tubes and medication alarms, but everyone has their own journey. Everyone has their own story and deep waters they are treading through in their own lives. Even the ones you would least expect. Because our world is broken, the curse of sin exists, and by extension has allowed pain and suffering to varying degrees in all of our lives. It is unavoidable until the return of Christ when all will be made right again. The more we try to avoid being uncomfortable, the more pain we cause in the end – both to ourselves and those around us either through ignorance or isolation. As we continue into this season of giving and presents, maybe if we began to practice more presence, more of us would experience more of the heart of Jesus and why we celebrate his birth to begin with. Maybe more people would truly begin to know and feel his love through the extension of our presence. Maybe that would be the best present of all…..

Matthew 1:23
“Behold, the virgin shall conceive and bear a son, and they shall call his name ‘Immanuel’ (which means, God with us).”