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You’re a Good Mom, Even When You Don’t Feel Like It

To my former self, on the day we received one of Caiden’s first (and scariest) diagnoses:

Not every parent can say they have their pediatrician’s personal contact information, but then again, Caiden isn’t the typical patient. You should be proud of yourself for deciding to stick with this doctor. She’s going to be an essential part of the diagnostic process, and your biggest professional supporter.

IMG_20150112_111920 She’s going to call on her own time from her personal number so you can talk about the first diagnosis. Remember to save her number like she tells you to; you’ll need it later. You’ll spend a good half hour on the phone scribbling down notes as she explains three words that should never be put together when talking about an otherwise healthy child.

Global Cerebral Atrophy.

It’s only by chance that we stumbled upon it, and it won’t be the last unexpected diagnosis in his ever expanding medical file. That one routine MRI to rule out cerebral palsy, a possible result of his prematurity, will be the catalyst that turns your life upside down and catapults you into unknown territory.

Don’t waste your time Googling it; you won’t find much and most of it doesn’t pertain to him. Your best source of information will be the neurologist. I know you’re scared. You thought we were just dealing with autism, something I promise will finally be diagnosed in a few more months. But now you’re suddenly faced with the real possibility that his brain is dying, and that’s terrifying.

Go ahead and cry. Just remember, you’re not to blame for this.

Make sure you take notes when the doctor calls, even if they’re a mess. The other doctors you’re referred to will want to see them. It’s difficult keeping all of his doctors on the same page, so notes and appointment summaries are  important. Don’t forget to bring his records to every appointment.

You’re going to hear words like “cancer,” “deformity,” “trisomy” and “biopsy,” but six months, three additional doctors and a dozen tests later, most will come back normal, and you still won’t know much more than you did that day.

That’s good. It means most of the really bad stuff has been ruled out. You aren’t in the clear yet, but you’ll handle each bit of information the best way you know how, and you should be proud of that.

Remember that to find out the answer, you need to pace yourself. If you schedule too many things too close together, you’re going to get burnt out. You can’t be his voice if you’re hospitalized for exhaustion.

Lastly, and most important, try to remember you’re a good mom, even when you don’t feel like one. Despite the mountains of self doubt and mommy guilt, I want you to know that he loves you, even if he can’t tell you for himself.

Follow this journey on Narrating Caiden.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

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