Special Needs Mom Confession: Sometimes Not Knowing Is Easier
I ran into a friend the other day that I hadn’t seen in years.
She knew us before.
She had absolutely no idea what our life looks these days, had no idea about my son’s diagnosis or any of the realities associated with it – she had no idea at all.
She told a sweet story about my son, I smiled and thanked her for always being so kind, and it was genuinely good to see her.
I left and headed home, back to my son and back to our new normal. I could feel waves of grief starting to wash over me. I pushed them back, determined not to cry in front of my son, determined to get dinner made as planned, determined to shake off the sinking feeling.
I made it to bed time.
As soon as my youngest was in the bath and jabbering to my husband about animals, I rushed into my bedroom and locked the door as the tears started to flow.
I was so, so sad.
Special Needs Mom Confession
The truth is, I miss the little boy my friend described. I miss that he used to be so much more capable, not only socially but also physically. I miss not worrying so much about his future. I miss not worrying so much about his present. But mostly, I miss the little boy who sometimes seems to have just slipped away from me.
I went into the bathroom to wash my face, pray and try to get myself together. For the first time in a long time, I just couldn’t do it. I couldn’t stop the sobs welling up from a place in my heart that carries a dull ache mixed with hope in it all the time. I was completely overtaken and undone.
I curled up into a ball on the floor and just let the pain come. I realized, there on the cold floor, that when the sorrow comes now, it is also always mixed with something else – acceptance. When the hurt is so deep I feel like I can’t breathe, it is also always met with a renewed gratitude – “At least now we know, now we can help, now he can just be the way he is meant to be.”
Sometimes Not Knowing Is Easier
My son is headed to the hospital this week for testing. I am not sure what we will find. I am not sure if I will be told I am over-reacting and too protective (because we know that happens, even when something is really wrong), or if I will be told he has a life altering condition that will further complicate how he lives and how we function (his doctors have already said we are headed for this, but somehow, it feels slippery – without the actual diagnosis, on paper, I just can’t fully bring myself to go there).
There is so much I don’t know.
But what I do know is this – one day, long after this appointment has come and gone, I may look back on this time frame and miss it (just like the longing I felt lying on the bathroom floor the other night). Because although the waiting and the wondering is tough, sometimes not knowing is easier. Not knowing means you can hold the picture in your head about how you want it to be a little longer. Not knowing means you can still imagine all the other possible causes, the easier ones, the ones that won’t potentially cut my child’s life short and create an endless stream of medical interventions.
There is so much I don’t know.
But what I do know is this – God has this child, lovingly in the palm of his hand. I have seen it, felt it, witnessed it, and experienced it over and over again. Whatever is next for my son will not change that. If anything, whatever is next will bring more and more glimpses of radical grace and crazy love. I know this – all the way down to my toes, I know this.
There is so much I don’t know.
But what I do know is this – my son is amazing. He is wicked smart, and so funny. He is affectionate and caring. Nothing the doctors will say, nothing that is prescribed for treatment, nothing that is written down in the chart will change my son’s ability to make his brother laugh, or make my husband smile, or make my heart burst with affection for him. My son is so very precious in His sight, and in my own.
And this knowing, matters more than any diagnosis. This knowing makes up the fabric of our everyday, and gives me the strength to take the next step, and the next, and the next.
This knowing means I can fill out the endless paperwork tonight, and not worry about the amount our insurance will or will not cover.
This knowing means I can go lie down with my son right now, and listen, really listen to all things salt water aquarium. It means I will smile, and genuinely enjoy the time with him.
This knowing means we will be fine this week – no matter what, we will do this and we will do this well.
This knowing is what makes me his mom.
This post originally appeared here on Not The Former Things in February of 2015.
Shawna Wingert is a former training and development professional turned education specialist, and has homeschooled her two children for the last ten years.Shawna has written four books about homeschooling unique learners and has been featured in homeschooling discussions on Today.com, The Mighty, Simple Homeschool, My Little Poppies and Raising Lifelong Leaners.
You can find her online here at DifferentByDesignLearning.com.
Shawna, I am posting for you and your son today and this week as you had to the Dr for tests. From one HFA momma to another, I ache for you to hear you’ve been so broken as to cry so hard. God is there with you, always remember that, He aches with you too, He loves you and Sourdough more than we can comprehend. Remember, the Spirit grieves for us with moanings too deep for words.
So very well said! Thank you so much.
My wish for you is that testing goes well. That you get more information, more answers. That these answers help you. And that you never, ever stop writing about your journey. You WILL do this, and you WILL do it well, because you always have.
Thanks Cait! You’re an awesome cheerleader. 🙂
Ahhh! Sobbing is good for the heart, mind, strength, and soul….is what I see at the second half of your blog. God is good!
Yes! Sometimes, we just need to let go and have a good cry.
God is so very good indeed.
Thank you for sharing. Watching our little one disappear through regressive autism is breaking and feel so alone. It is harder than watching my grandfather with Alzheimer’s.
We had a visiting pastor come once. His sermon was about the saddest cry in the Bible. “Adam, where are you.” Even though it doesn’t stop the pain, it is good to know that the Father of all knows what it is like to miss a child. Everyone says it was God’s love that kept Christ on the Cross through all of the pain. I think it might also be because He already experienced more pain than the cross when his children walked away. So thankful that Little One’s soul is completed through what God does and not what I can or cannot do.
Beautiful. Thank you, Ellen.
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