Amy Pereira, SMS mom to Joey

Blogs…I read them…I find them helpful…but I’ve never attempted to write one.   I am always in awe of the writers and how honest and real they are.  I tend to find it hard to write about myself, and my son Joey specifically, outside of raising awareness for SMS.  But I’m going to attempt, so here’s my real.

I went to a baby shower this weekend.  Never did I think it would inspire me to write a blog, but as I sat there celebrating this new little person that would soon join our extended family, it reminded me of my journey.

Being the practical person I am, I gave the mom-to-be a Diaper Genie.  When she opened it, my Aunt, sitting next to me said, “Those are great”.  And I simply replied, “Yes, they are!  I have had mine for 10 years and still use it!”  We both laughed, knowing how bittersweet my statement was.  And in that moment it occurred to me, this is my life.

Joey is now 9 years old and still not potty-trained.  And the fact that I can laugh about it with my Aunt, as if it’s normal, has taken me a long time to achieve.

When Joey was diagnosed at 15 months, my world came crashing down.  My precious little baby would now have life-long struggles and my future for him was shattered.  Will he walk?  Will he talk?  Will he be able to read?  Will he have friends?  Will he be happy?  Will he be okay?  Will I be okay?

My husband and I spent months visiting doctors, meeting with specialists, scheduling therapies and talking with the school district.  It was hard.  It was overwhelming.  I’m not going to lie.  I cried…a lot.  But then there would be a day when therapy would be canceled, Joey had slept well and his behavior was manageable and I could “pretend” he didn’t have SMS and that we were a “normal” family.  He was okay.  I was okay.

In his short nine years, I have watched Joey work extra hard to achieve milestones that come so naturally to typical kids.  He has now crushed my fears of not walking or talking.   And after the 100th time of him asking if he has school in the morning, I often reminisce of the days when all he could do was sign the word for “cracker”.  He has worked so hard and he has come so far. I mean, he still goes to a special school and wears his PJs backwards to avoid a mess with his diaper, but he’s doing okay.

I, too, have worked very hard to accept that this is our “normal”.   It’s painful, as a parent, to know that your child doesn’t have “real” friends, doesn’t get invited to birthday parties, or won’t ever live on his own.  But I have come to accept over the years that I cannot change Joey’s diagnosis.  Finding joy in the little things and gratitude for the support we have, has helped me live each day as it comes.  I will never understand “why Joey?”.  But every once in a while I can “forget” that SMS is now a part of our lives and remind myself…we’re doing all right.  And even though I am painfully aware that our normal is bittersweet, I can now laugh at the things that are hard.  Honestly, I never thought I would have a nine-year old in diapers or care about someone else’s poop as much as I do.  But this is my “normal”.

I recently heard a quote that has stuck with me.  “You won’t know until you’re there that you’re okay”.  Well, I am there.  SMS is hard and there will be days when I feel inadequate, damaged, and defeated.  I will have those sleepless nights where my fears play hopscotch — frantically jumping from worry to panic.  But then I know I’ll have those moments — those magnificent perfect occasions that I once thought were impossible.  Those moments that offer me hope and possibility, when I can say to myself, “I am here and I’m okay.”

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