Mothering A Child With A Disability: The Secret Thoughts on Smooth Sailing.

Sometimes, as I lay in bed with my daughter drifting off to sleep beside me I am plagued by an irrational fear that holds me hostage until I too, slip off to sleep. And while I have come to acceptance of this fear often, everytime it rears it’s ugly head my breath catches until I can find the voice of reason pleading with me that there is no use being afraid of things that have not yet happened and may in fact, never happen. And then, I feel silly afterward for entertaining such a fear and yet, I can’t help but wonder if there are other mothers out there that share my debilitating thoughts that even now, grip me.

Ella is doing well. She is doing really well. She always has done well. And despite any grumbling and complaining you may have heard from me (hopefully not much), I fully acknowledge how truly blessed we are. Ella has no heart problems, no bowel problems, to our knowledge no sleep apnea or circulation problems, no autism or ADD, no hearing problems,  and only slight, albeit very common sight problems – basically has a clean bill of health…..

which is why I fear.

It’s too good to be true. I feel like no child with Down Syndrome could be so fortunate and no parent of a child with Down Syndrome could have it so easy. It sounds ridiculous, I know, and yet my mind never stops there but instead there is a constant, flashing neon sign that glows and buzzes with the C-word. 

I fear. I fear almost everyday. I fear as I read on Facebook or a blog of one more child who has to fight a battle they are too young for. I fear when she gets a virus that takes just too long to heal. I fear when I notice little petechiae cluster on her soft clear skin. I fear when everything is just as it should be. Even now, as my baby naps after a very cranky morning, I can’t help but wonder if she is simply tired from her 5am start or if there is a deeper issue that she can’t tell me about but is causing pain inside her fragile little body.

And it would seem that no matter how many times I read the words over,

fear pushes the word of truth aside and yet, as I was reminded last night, as I sat in Churchill Chapel,

Timely, as I have been formulating this post for a couple of days now and these words are all too familiar because while not going into it too deeply, this verse epitomizes so much of the way that I feel as my soul is polluted with lies and misconceptions, bitterness and sin. I fear punishment, I fear spite and I fear the unknown. If only simply hearing these words or reading them over could make me believe them and understand them fully.

Until then, I keep pushing on, striving and hoping for a better understanding of love until I do not fear any longer. And even when storms come, because I know they will, can say, I have no fear for the Lord my God is with me….