I'm Not the Person I Was Before I Had a Child With Special Needs

mom smiling next to son in stroller The other day I was reading a post reminding parents not to lose themselves or forget who they were before they became a parent of a child with special needs. The article was telling parents to make time for the things they loved and the friends they laughed with before their world completely changed. I understand the intention of the article, and I truly do get the thought of “losing” yourself. I went to bed thinking of my old self and the person I was before our youngest son came along. 

Our 2 and a half year old has a rare genetic condition, PMM2-CDG. His disorder affects nearly every cell and body system. He fights for every accomplishment, every milestone. He is still unable to sit unassisted, is “failure to thrive,” doesn’t say a word and has the most magical smile you will ever come across. 

I thought of the time when I didn’t know medical terminology, have strong connections with other parents of children with rare disorders, friendships with people across the globe and involvement in advocating for children with extraordinary needs. I never met with specialist after specialist, checked blood sugar, set feeding pumps or drove to daily therapy appointments.

That was not my old self.

My old self was worried about losing 10 pounds, acquiring the latest handbag and making plans for a night out. Don’t get me wrong, a couple of those things are still on my list, but they are nowhere near the top. 

I am most definitely not who I was before, and I’m not going back. This is the best self I have ever been. 

Yes. This new self who is exhausted, barely has time to shower and sheds countless tears because life simply isn’t fair. This new self who never gets a full night’s sleep, feels alone most days and prays for little things others take for granted. This new life is a journey that requires a new me. 

I lost myself and became someone new. The person I am now is a much better version of me. I am not who I was before I had our son and honestly, thank God I’m not. Thank God I did lose myself. I have lost myself in our daily lives. I have lost myself in relishing little smiles and laughter. I have lost myself in celebrations that most parents wouldn’t understand: a purposeful splash in the tub, a giggle that gives you goosebumps, rolling over to reach an object. I have lost myself in appreciating those around us. 

I have lost myself in fighting for our son. 

So I confess. I did lose myself, and I’m completely fine with it.

mom and son smiling

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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