Handling Your Child’s Diagnosis

Dear mama,

If you’re here because your sweet baby has received a medical diagnosis I want you to know that you’re not alone. Here are four things that helped me through the first day we learned of our baby’s upcoming difficulties.

First, you probably jumped right into the world of research and skipped one of the most important steps to accepting your new life — grief. Sweet friend, please give yourself permission to cry. We tend to think I need to be strong now so we hold in the tears that bring us so much healing.  I know because I’ve been in your place. 

 In counting, my son has received at least 10 different diagnosis’ (some were incorrect). The first one we were given was Hydrocephalus. I had gone into my 22 week check up thinking all was well until I saw the ultrasound tech wipe tears from her eyes. Everything changed that day.

I left the office and called my husband’s work and asked him to come home early. Before leaving, I tried to eat a banana but it got all muddied and soggy from my weeping. I drove home weeping wondering what our sweet child’s life would be like. Of course, I imagined the worse (and so will you). 

Once home, my hubby held me close while I explained the issues. Our landlord showed up for some maintenance and Dalton kindly asked him to leave so we could have some privacy. We just received bad news about the baby, was his words. 

We called our parents, snuggled on the couch, and ate a gallon of ice cream together and watched tv. Such ordinary moments in an extraordinary day. 

And that’s what I want you to do first, mama. I want you to give yourself the permission and space to cry a little (or a lot). Weep into your husband’s arms. Weep over the phone to your mom. Weep on your bed while you beg God for answers. It’s okay to grieve the loss of normalcy. 

Then, I want you get yourself some ice cream or chocolates or a steamy bowl of macaroni and cheese. Whatever it is that brings you comfort (even a nap if that’s your thing) I want you to give yourself permission to enjoy. You’re life has just been flipped upside down and a little chocolate cake will help it feel a little more upright.

If you’ve taken the time to acknowledge your grief and find some small source of comfort now you can get on the internet. 

But don’t Google. Not now (and maybe not ever). Google displays the worst of the worst possible scenarios. When I researched Hydrocephalus for the first time I saw sweet children so distorted by their condition I became nauseous. Googling your child’s diagnosis will only lead to anxiety. 

Instead of Googling, I want you to go to Facebook and search for different support groups specific to your child’s anomalies. For me, I found an amazing group for parents with children who have Hydrocephalus. Later, when my water broke at 24 weeks, I found a support group meant to encourage and inform women who are dealing with PPROM. It was because of these support groups that I knew Uriah’s original doctors did not have his best interest at heart and we transferred to a new hospital and found the best treatment for him. 

Join these groups and ask all the questions. These amazing parents will welcome you with open arms because they have all been in your shoes! Ask parents how their children are doing developmentally and they’ll most likely surprise you with adorable pictures, milestone praises, and real life advice. 

Sweet mama, now that you’ve taken the time to cry a little cry, comfort your soul, and connect with real families I want you to read this amazing post by Jenna. She shares a story that perfectly sums up this amazing journey of medical complexities. 

I know you wish you weren’t on this journey. I understand because I’ve been there too. And I’m not promising everything will perfect; in fact, there will be more hard moments than you ever imagined possible. 

But, sweet friend, this challenge isn’t the end. It’s just the beginning of a beautiful new journey. And once you accept that (and give yourself a lot of grace along the way) I promise you’ll smile again. 

Until then, grieve, comfort, and reach out. And know that God is with you, sweet friend. He hasn’t forsaken you or walked away — He’s right there ready to walk you through this time. He loves you and your sweet family beyond words. 

Have you just received a diagnosis for your child? Mama, I am here for you if you need a listening ear or prayer request. Leave me a comment and I’ll do my best to connect!

Love, blessings, and coffee, 

Frannie

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