How My Faith Helps Me Be a Parent to My Children With Special Needs
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, taking care of your child in ways you never thought possible. I see your blood pressure rising 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 same thing — checking to make sure your child is still breathing at a 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 trying method after method, day after day, to get your baby to hold their bottle or sip out of a sippy cup. I see you wiping away tears as your little one vomits during a meal. I see you 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 smiling, nodding and making a mental note of what point you will try and do this throughout the day. I see you cheering your child on as they attempt to do the same thing they’ve been trying to do for months. I see you wondering if they will ever reach another milestone while continuing to make sure your little one knows you believe they can. I see you blinking 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’re agreeing, but deep down inside, you’re wondering how they know that to be true. You’re wondering if it’s all worth it. You’re thinking 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 walking in nervously, wondering what news will be given at this one. I see you holding your child tightly as they’re poked, prodded, examined and analyzed. I see you remaining 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 jumping each time the phone rings, hoping 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 the shelves and running to and fro. The momma looks frustrated, and keeps asking him to stop. “No!” You’re thinking 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 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’s hard to find your place in a sense, because in ways, it feels as if your life doesn’t 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 my girls don’t have a diagnosis, I haven’t found a support group or fundraising group just yet; but I’m members of many online groups in which I get to interact and bounce off day-to-day normals with other people. I’ve 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’m here to tell you it was never intended to be that way. In fact, I’m 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’s 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’ve suddenly become turned off by those couple sentences, please stick with me. I’m 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’m not the only one in this boat, and I’m not asking for a medal, but I just want to make sure it’s 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 percent chance. Many chalk it up as “unfortunate” or “bad luck.” But God.
First off, to be blunt, I don’t want to serve a God 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? I believe Christianity is about what God did for me, not what I can do for God. I believe God knows more than we do about watching a child suffer. 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 I never think 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 my life, even if I cannot understand it at the time. Faith. When I view my 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 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. I believe this did not happen by chance. I believe He chose it all in His perfect wisdom, and He did it out of sheer love. A good, good, God. Worthy of my trust and my confidence. Able to carry my loads when it’s just too much. 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.
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 I believe that my God can meet the needs of both of us. He wants to use this, and He is in control. I believe If He chose this for my child, it is absolutely His best. I allow Him to mold that into my heart.
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.
This post originally appeared on His Hands, His Feet, His Heart.
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