RARE DISEASE DAY 2019
“Therefore, since through God’s mercy we have this ministry, we do not lose heart.
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair… All this is for your benefit so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
2 Corinthians 4, select verses, NIV
What is there to say about a day that honors the child you never dreamed you’d be parenting one day?
Early in my parenting, I remember seeing a family with a special needs child and thinking “I’m so glad that God has not called me to THAT.”
How wrong I was in that moment, both for the dismissive thought and because I had no idea what our future held. And even until he was almost two, when we heard a diagnosis and the words “permanent disability” for the first time…up until then all of his delays were just things we really, REALLY hoped he would outgrow.
Thinking back, I still remember another family I met in college. I was volunteering as a side walker and barn caretaker at a therapeutic riding center in Andover, Kansas, and I remember watching a mom carry her 8-year-old son into the center. And even having been in this environment for several weeks at that time, meeting them still shocked me because of the profundity of his multiple disabilities. I thought I had seen a lot. But this was the first time I had THAT thought. “Please God, if I ever get married and have kids, please don’t ask me to do that.” And you know why I thought that? Because that mom handled her son with so much love and grace and care, that I thought, “I could never do it with so much compassion. I could never make it look that easy. I could never…”
A few years later, sitting with Addy in a restaurant, pregnant with my second baby, was the next time I had a similar interaction, and had much the same thoughts. It was not in a spirit of meanness, or judging, but of already preconceiving my own potential failure and inadequacy for being called to such a level of responsibility.
As it turns out, just one more baby later, I DID find myself standing in shoes much too large for me. I knew from the get-go that I was in over my head. “You shouldn’t have had him anyway,” people said. “We told you not to get pregnant again. You can’t handle the pressure.” (Side note: Don’t ever say those things. We know who’s already thinking it, but don’t need to hear it).
And do you know what I have learned?
I have learned that as a parent of a child with special needs, I am not MEANT to be able to do it. He was not given to me because I COULD do it, but because God knew that I needed an extra large shove into His lap to depend on Him for my every move.
I have learned that GOD is bigger. And that the grace to care for every one of my children, neurotypical and otherwise, only comes from Him. And that the compassion required to care for a child who is physically much older (and heavier) than his mental and developmental age has to be squeezed out of every prayer that leaves my mouth and meets heaven’s ear.
My sweet boy is nearly four, but there are days when I change yet another lactose-intolerant diaper and think, how am I going to do this when he is sixteen? When he is forty? And who is going to do it with so much love when I can no longer? Why am I such a terrible parent that I can’t seem to completely control and eradicate these food exposures that cause such digestive discomfort? Look at all the things I am doing wrong, blah blah blah. What if what if what if?
But in those moments, I have learned that God is not in fear. Fear is a liar. And when I extrapolate my circumstances far into the future to include worry and despair, I feel anxious because GOD IS NOT IN FEAR. When I go there in my mind, I have walked away from my source of peace. Away from the grace of God in my life for the NOW. And lets face it, even knowing better, I still have plenty of those moments and I have to get a really firm handle on those thoughts to take them captive and turn them over to Jesus.
I have learned that the same grace and mercy that is part of my parenting today, will still be there in ten years, in twenty and thirty as I care for an adult child, as long as I am really clinging to the Rock that is higher than I.
Am I mad at God for giving me a special needs child, when I specifically all but special-ordered “normal babies” in my moment of ignorance? NO! I wouldn’t trade him for ALL the “normal kids” in the world!!
Because of Trace, I have learned grace.
Because of Trace, I have learned God’s love for ME. I have learned that He is FOR ME, and not against me.
Because of Trace, I have learned how to take care of my own body to keep up with his needs.
Because of Trace, I have learned how to handle many situations in ways that would have blown my mind a few years ago.
Because of Trace, I have learned to how to encourage other mommas who are just setting out or are on different parts of their journey.
Because of Trace, I have found family around the world in my STXBP1 community on Facebook. (See, social media is not all bad!), and though we are small in numbers (our kids are rare, remember?!), I could meet any one of them at Disney World and know their STXer from a mile off. And they would know mine, and we would be able to collaborate and tag team and know exactly how to care for the other’s child while one of us caught our next attraction.
Because of Trace, I have a family at Hope Landing, our therapy clinic.
Because of Trace, I have formed a good working relationship with his doctor. (Shocker, right, if you know me in real life?)
Because of Trace, I have seen my church family pray and intercede and celebrate miracle after miracle with us – a whole church family who LOVES my boy, calls him by name, includes him in birthday parties and children’s church classes, and teenagers who squabble over who gets to be Trace’s one-on-one person during Children’s Church.
Most importantly, because of Trace, I HAVE SEEN GOD WORK. The last time I posted about him here, he was not yet walking. Today, he goes RUNNING through the halls at church in that walker of his. He’s been on his feet for five months tomorrow, and it still brings a tear to my eye.
I have seen God take notice and care about MY family in the corner of a small town in South Arkansas. I know that I am known by God. I know that Trace is known as well, and that God formed his little brain and body in the secret place exactly as Trace needed to be, all the while knowing what a gift He was going to present to me on May 19, 2015. That this gift was going to catapult me into full and total dependence on Jesus and that I would find myself simultaneously in the hardest, most complicated, and most grace-filled season of my life.
My son is rare. And because of him, I am rare too.