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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 ‚Äúlosing‚ÄĚ 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 ‚Äúfailure to thrive,‚ÄĚ 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.