Searching for Grace

Dear Momma,

 I see you.

I see the smile you plaster on your face when behind the scenes you are weeping. 

I see the time and effort you put into each and every day while you are in much need of rest. 

I see the worry and anxiety build behind your eyes while you pretend you have it all under control. I see you. 

We are the same. 

We are the mothers to medically fragile children, and the world is often not kind to us. While other parents remark about their child’s milestones and first words, we accept that inchstones are just as important, and we celebrate those tiny moments: 

The moment when your child held your gaze for even a few seconds because that is understanding 

The moment your child cried when you turned on the wrong cartoon, because that is a form of communication 

The moment your child crossed their hands to midline because that is progress 

All of those moments are celebratory, and they deserve billboards and banners and facebook posts.

While other mothers show off their child’s report card full of As and Bs, we read through the progress notes regarding how child being able to maintain a grasp for ten seconds. 

Our worlds are not the same. 

And we often feel alone and forgotten. 

But, sweet momma, you are not forgotten. You are loved. You are cared for. You are prayed over. 

When you come into the world of special needs parenting, you are often given the poem “Welcome to Holland.” It illustrates the beauty of navigating an unknown place and finding the hidden world full of wonder. It is beautifully written. It is remarkable. It is needed. 

But it is also a “Welcome to Holland” moment every single day. In the world of special needs parenting, no two days look alike. One day may be full of meeting small inchstone (we use inchstones as a measuring stick in our home, because milestones do not come so easily). The next you may be simply trying to survive on little caffeine and even less sleep. 

So, we Welcome to Holland ourselves every day. 

Today, my son held his head up. He is eight years old. But some days, as his body grows weaker, he cannot hold his head up. So today, we celebrate neck strength. Tomorrow maybe he will grasp an object or maintain eye gaze for several seconds. Those are tomorrow’s wonders, and they will be celebrated tomorrow. 

Exhausted momma, I understand you. I see how tired you are. Yes, you are tired because so often you get little sleep, and the sleep you do get is full of unconscious thoughts about doctor appointments, therapies, and referrals. But, you are also tired because your entire being goes in to doing the very best you can for your littles every moment of every day. It is exhausting, but your hard work does not go unnoticed. I see you. 

Frustrated momma, I feel you. I know how difficult it is when professionals do not understand a diagnosis or lack of growth from a goal. I know how hard it is to hear how your child fails in comparison to checklists that are designed for typically developing children. I know how hard you try to not allow those opinions to cloud your perspective, and yet, you still feel a tinge of guilt for being jealous of other parents. 

Sad momma, I get you. I know how lonely this world is. I know that even when you are brimming with joy over the smallest of growth, you are grieving for the loss of the dreams you once had for your child. I know you try your absolute best to only let your children see you smile and tell them over and over again how proud you are of them while secretly wishing you had done one more therapy session, made one more phone call, worked harder on getting one more referral to go through. 

But, sweet momma, you are enough. You have always been enough, and you will continue to be enough. You are made for this. I do not, nor have I ever, believed that God only gives special needs children to special people. We are not special. We are not somehow different or better than any other parent. And the only goal for all of us is to do our best and love our children. However, I do believe that parents of special needs children are equipped with more patience, more understanding, and more compassion- not because we deserve it but because we notice how little those attributes are provided for our children, so we strive that much harder to accommodate for others.

And today I give you permission to give yourself some grace. You are doing it all, but a car cannot run on an empty tank. 

Loved momma, take a nap. Binge a show. Paint your nails. Read that book you bought that you have been wanting to pick up for months. Bake those cookies full of calories because you deserve them. Tomorrow will bring so many more things for us to worry and fret about. 

But today, dear momma, you are enough.