Dear Parent of a Child with Special Needs,
I see you. I see you waking up yet another morning, looking at your calendar to check and see which therapy or doctor’s appointments the day holds. I see you picking up, feeding, changing, holding, helping, sitting up, pushing around, positioning, carrying, cleaning up, take care of your child in ways you never thought possible. I see your blood pressure rise when you first notice your child has a stuffy nose, remembering the last time and how it ended up. I see you doing all you can for preventative care, with suctions, syringes, nebulizers, and more. I see you waking up in the middle of the night to do the very same thing; checking to make sure your child is still breathing at a decently comfortable rate. I see you recording every last ounce of fluid taken in or vomited up; sighing in relief each time a wet diaper appears.
I see you. I see you patiently attempting to get your child to drink and eat enough. I see you try method after method, day after day, to get your baby to hold their bottle or sip out of a sippy cup. I see you wipe away tears as your little one vomits during a meal, while patiently cleaning up and comforting your child all the more. I see you anxiously watching the scale at the doctor appointment, waiting to see a higher number than last time to appear; and feeling defeated if it does not.
I see you. I see you going to therapy after therapy appointment in which they each tell you five different things to work on at home in your spare time. I see you smile, nod, and make a mental note of what point you will try and do this throughout the day. I see you cheer your child on as they attempt to do the very same thing they have been trying to do for months. I see you wonder if they will ever reach another milestone; while continuing to make sure your little one knows you believe they can. I see you blink back tears as your child screams while the therapist places them in a new contraption or therapeutic suit, all the while assuring you it isn’t hurting your child, it’s just uncomfortable. You agree, but deep down inside, you wonder how they know that to be true. You wonder if it is all worth it. You think about whether or not, at the end of the day, you should just let your child be himself/herself, instead of pushing them over and over again. But, you continue, because if you don’t, what then?
I see you in the waiting room at one of many doctor appointments. I see you walk in nervously, wondering what news will be given at this one. I see you hold your child tightly as they poke, prod, examine, and analyze. I see you determined to not cry in the doctor’s office as they tell you yet another discouraging part of your child’s diagnosis or lack thereof. I see you jump each time the phone rings, hoping that the results are in from the most recent blood test. I see you checking the calendar to think back on when the test was actually given and when you should receive the news.
I see you. I see you in the grocery store, pushing your child around, hoping no one will stop you to ask his/her age. I see you watching the typically developing child across the aisle, munching on a cookie, pushing things off of the shelves, and running to and fro. The momma looks frustrated, and keeps asking him to stop. “No!” You think to yourself. “Don’t tell him to stop. Tell him to keep going!” I see you looking in amazement at all the milestones flippantly being reached around you; and as you do this, wishing for just a second that your child would pick up a cookie, push things off of shelves, run away from you. I see you feeling guilty for even thinking this way. I see you, because I am you.
Being a mom of children with special needs is isolating in many ways. It is hard to find your place in a sense, because in ways, it feels as if your life does not have much in common with anyone. Going to playdates with typically developing children feels awkward (and for those of us who have immune-compromised children, germy); but people without children can be hard to relate to as well. Because the girls do not have a diagnosis, I have not found a support group or fundraising group just yet; but I am members of many online groups in which I get to interact and bounce off day to day normals with other people. I have found that many of them, many of us, become bitter and stuck in our own stuff; and if you took a poll (and people were honest), I believe that most would say their faith has worn thin on this journey. I get it. But, I am here to tell you that it was never intended to be that way. In fact, I am here to encourage you that not only is God with you on this journey; He is the One that is writing it.
I know, I know. This journey has been tough. It has included a lot of suffering and struggle, and many of you might say that a good God would not allow these moments to have happened. A good God would save His children from any and all suffering, right? Here’s the thing friend: He did. My faith in Christ has been strengthened through this journey with our girls. Now, if you have suddenly become turned off by those couple sentences, please stick with me. I am not writing this from a place of ignorance. Far from it. I not only have one child with special needs, I have two. I know I am not the only one in this boat, and I am not asking for a medal, but I just want to make sure it is clear that if anyone has reason to get discouraged in all this, it could be me. After all, the medical community has been perplexed by our situation. Fraternal twins with the same undiagnosed, quite debilitating, disease? I was once told there was only a 6% chance this would happen, and that obviously whatever they have is rare, therefore it’s a super rare 6%. Many of them chalk it up as “unfortunate” or “bad luck”. But God.
First off, to be blunt, I do not want to serve a God that I can predict and understand. If I can fathom His doings in my mere humanity, then how is He God? If I could understand His ways, then where would the faith part come in? Secondly, here is where Christianity is different from all other religions: Christianity is about what God did for me, not what I can do for God. What makes this true is that God sent His only perfect Son to suffer so that our sins could be nailed to the cross and death would be no more. Without that perfect sacrifice, we would be stuck in our sin and imperfection forever. And, clearly, God knows more than we do about watching a child suffer. If He thought that making His Son suffer, making this His primary mission on earth, was important and was the best thing for Jesus, then we must know that He’s up to something in our pain. Yes, being a parent of a child/children with special needs is hard. Yes, there are layers of challenges that build up every day, but we must never think that there is not a God that controls it all. I do not want to serve a God that isn’t fully sovereign. I want to serve a God that chooses to bring that which is best into our lives, even if we cannot understand it at the time. Faith. Friends, when we view our children, regardless of their needs, as little ones made in the image of God, not by chance, but by His sovereign plans and power, it’s a game-changer. When I view my day to day tasks as worship to the Creator over all rather than mundane activities of survival, I can find joy. Beyond that, when I remember that, while our bodies are wasting away, (all of us), He is renewing my spirit each and every day, I can find joy even in the hardest moments. Hope. This did not happen by chance. He chose it all in His perfect wisdom, and He did it out of sheer love. A good, good, God. Worthy of our trust and our confidence. Able to carry our loads when it’s just too much. Making all of our ashes into something beautiful. Displaying His strength through our weakness as His megaphone to a bitter, hopeless world. Purposeful. This is why, instead of shaking my fists at the sky in our reality, I can lift my hands in praise. This is not mere positivity. You and I both know that no matter how many times we repeat, “I will be grateful today. I will lean in to happiness and lean away from hurt”, blah, blah, blah, it doesn’t help. Dead, futile words to a hurting heart. The power of God-the living God- now that is life. Only experienced when lived out in faith. I can guarantee you this: if you hand this journey over to Him, He will make His goodness known to you. He will take the day to days and produce hope in you that you never thought could exist. If you will choose to take Christ’s death for you on the cross as the substitute for all your junk, and allow Him to live out His ways through your body, He will give you joy in your family’s story. You take one step, and He promises to take the 99. Will it be easy? No. Will it take away the hard parts? Not at all. But, you will have the privilege of walking through each and every moment with the One who is writing the story with His own merciful pen. Assurance. Better, not bitter.
What I want to make it clear that I am not saying is that whatever is going on with our children is a result of sin. Sure, there are consequences for things that have gone on in pregnancy or there after, but here I am talking about those things that were absolutely out of our control. When I say sin, I do not mean that the disability itself is the result of anyone’s sin. Far from it. What I mean is that you don’t have to look far to see that we live in a broken world in which, while Jesus has received ultimate victory over it all, the remnants of it still remain. But here is the beautiful part, and where Christ comes in: Any and all brokenness that remains has already been overcome. His love, His glorious, all-giving, love, did whatever it took to assure you that while this world still is full of struggle, this world is not our home. The trials are real on this side of heaven, but He has promised that He already took those on for our sake; and that our home in heaven will not include any of it. Eternal hope beyond anything this temporary place could offer.
Parent of a child with special needs: I see you. I am you. And, I know it’s hard. You are walking through the unimaginable at all times, many of you with loads much heavier than mine. I cannot compare our journeys, but this I am sure: My God can meet the needs of both of us. He wants to use this, and He is in control. If He chose this for your child, it is absolutely His best. Allow Him to mold that into your heart. He does not promise healing on this side of heaven, but rest assured that He has already healed, for all eternity, on the other. Because of what He did on the cross, one day, we can enter into a place where there is no need of a doctor or therapist because He will bring ultimate wholeness through Himself. No more sickness. No more worry. No more disability. Him. And, when I get there, I have a feeling I won’t be asking the “why’s” anymore. They won’t matter. Light and momentary afflictions in comparison to the eternity of joy that awaits. True freedom. My prayer for you today is that you could see Him the center of your story. No matter what appointment just happened. No matter where the day leads. His loving hand, guiding you through the very things He’s already earned victory over. Parent of a child with special needs: you are so very loved. You are seen. You are cared for; and what you are doing matters. There is purpose in it all, and you are never, ever alone.