Hand to Hold's Official Blog: Written by Parents for Parents

Redefining a Special Needs Child

Howdy, I’m Bea and I’m a special needs mom.

Doesn’t quite roll off the tongue, perhaps because I, myself, am still coming to terms to being a special needs mom.  For the past five years I have been just a plain ol’ mom, occasionally SuperMom or #1 Mom, but more frequently MOM!, mama, or mommy (repeat a million times while tugging at my skirt).  It all became much more complicated when I had my son last May.

That day I became a NICU mom.  It’s a pretty select group.  The NICU was a place I was familiar with, being an ER nurse we’ve called on them a time or ten for a hard IV stick in a child and I’ve had friends whose babies have been in the NICU.  It’s quite different when it’s your baby in the NICU.  First off, you’re in shock.   I was expecting the usual, had prepared for some hiccups or change in plans, but definitely not anything that would take my quiet little world and shake it up quite like this.  It took awhile to realize that I was a NICU mom.  Amid everything that was happening to my son, I hadn’t stopped to consider myself and my new label.  We were just trying to make it from one minute to the next, trying to sort through the barrage of information we were being given, and just trying to hang on as we suddenly found ourselves on this roller coaster that happened to be going at warp speed.  Not until the social worker came by to check on me and started talking to me about the NICU experience, being a NICU mom, post-partum depression, etc.  What? Who? Me? The reality sank in.  I am a NICU mom.  My baby is in the NICU.  The whole game has changed.  Little did I know how much.

We made it through surgery at 48 hours old, then our NICU stay, which at seven days pales in comparison to many.  We made it home, with our baby, but were still clueless that we were special needs parents.  Our son’s issue was fixable, you see.  This would just be temporary, we thought.  He was born without an anus, a condition called imperforate anus.  At two-days-old, he had surgery to give him a colostomy so he could poop, hence allowing him to eat (what goes in must come out).  He just needed an anus is what we naively believed.  Two weeks is what it took for me to realize the importance of that little hole.  It took months to fully comprehend the significance of having a child with this condition – the other conditions associated with it, the lifelong implications, daily treatments, etc.  To be honest, I am still learning and reconciling myself to what it really means.

I became an IA mom (short for imperforate anus) – I found online support, took the crash course in colostomies, and devoured everything related to IA.  Last month my son had surgery to allow him to poop normally.  Finally, after ten months, we had an anus that worked! Even though it has been repaired, I will always be an IA mom due to the lifetime care it requires.

The last few months it has dawned on me that I am a special needs mom, too.  That label was harder to accept.  It meant accepting that my child would be a special needs child, that he was not normal, that he never will be normal.  It meant accepting that others would see him as special needs and treat him as special needs – which sometimes means being bullied or looked down upon or marginalized. I felt that the label “special needs” would define him.  Define us.

Then I decided the label “special needs” was not going to define me, I was going to define it.  This is a defining period in my life, where I can show not only others but also myself, all the wonderfulness, beauty, and strength that can come out of having a special child with different needs.  Only I can determine the boundaries by which I am limited and fight against those limits unwillingly pushed on me. Only I can clarify what being a special needs mom is.  I can succumb or I can redefine it.  I have a chance to ignite something within my child that tells him that he is so much more than a label.  We all are so much more.  Daughter, sister, wife, nurse, chocoholic, special needs mom – they are only descriptors.  Only I can define myself.

Bea Smith About Bea Smith

As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.

Comments

  1. Thank you Bea for reminding us that we need not be labeled by anyone and that our lives are defined by how we face our challenges…you have done just that with courage & grace!

    Keira Sorrells
    ED, Zoe Rose Memorial Foundation
    OD, Preemie Parent Alliance

  2. Bea- thank you for beautifully sharing your story! Your candidness is an inspiration.
    Jan Gunter
    RMHC Austin

  3. Ayme Christian says:

    Great post, Bea! Thank-you for sharing your life through words. You’re an incredible person and will be in our prayers.

  4. Adriana Canas-Polesel says:

    Hi Bea I love your beautiful story and how you captured so many feelings you, Jay and the girls went through in a year’s time. It is well written and you convey the role of special needs mom so eloquently. I will share your story with my patients who are mommies to be in the occasion that they have a pregnancy complicated by a baby with a birth defect detected premataly.

  5. Bea,

    Hand to Hold and the parents we serve are blessed to have you as a contributor to our blog. Thank you for sharing your story. I look forward to reading more posts about you and your journey.

    Blessings,
    Kelli

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