Rare & Special

It took me years to be able to say the words – “I’m the mother of a special needs child.”

While the words themselves flow easily…it’s the magnitude that they carry that makes them so hard to spit out.  For me, acceptance of even the notion meant coming to terms with a life-changing reality – one that would not only impact my child, but our entire family.

After nearly five years of resistance, I can now confidently say that I am the mother of a special needs child.

Rare Disease Day (2)My son Reid was born with X-linked Creatine Transporter Deficiency which is one of three rare Creatine deficiencies that directly impact his brain and muscle function.  Due to this rare disorder, he will require a lifetime of care.  Reid struggles each day with muscular and movement disorders, global developmental and language delays, autistic behavior, and seizures.

So I guess you could say Reid is rare…and special too.

Not all that long ago, there was a point where I would fall to pieces thinking about the reality of our situation.  I’d worry about the challenges Reid would face and how we’d ever learn to cope with having a rare and special child.

At five year’s old, Reid is still in diapers, gets most of his nutrition from a feeding tube, and he does require constant care.  As a family, we’ve felt the stares and carried the weight as we’ve experienced the many challenges of Reid’s disorder.  In doing so, we have come to understand what it really means to be rare and special.  Being rare and special DOES impact our family, but not in the heartbreaking way that I once thought it would.

Instead, Reid’s special needs have taught us compassion and patience and what unconditional love really means.  He forces us to dig deep within ourselves to find the strength to persevere.  Rare and special has not only shaped our lives, but it has shaped our character.

Rare Disease Day (1)As I celebrate Rare Disease Day, I can’t help but think about all of the other rare and special people out there just like Reid.  They are, without doubt, touching the lives of those around them – in ways that only rare and special can.

They may be different than you and me.  They may face adversity each and every day, but they never judge – even when judged themselves – because that’s what rare and specials do.

Today, I am proud to say that I have a special needs child.  One who infects us with his energy and brings us joy in ways that we never even knew possible.  We live each and every day as it comes, and we are more thankful than ever for life’s simple pleasures.

Reid’s disorder has brought love and joy to our family.  And you know what?  To me – that’s pretty rare and special too.

To learn more about Creatine Deficiencies,
please visit :: www.creatineinfo.org.


Whitnie - BioAbout Whitnie S.

Whitnie is a graduate of the University of Texas with a degree in Public Relations.  She lives in the beautiful Texas Hill Country with her husband, Steve.  They have three children, Rhett {7}, Reid {5}, and Cora {2}.  Reid was diagnosed with CTD at 2 1/2 years old.  Aside from being a busy stay-at-home mom, creative thinker, baker, and occasional blogger, Whitnie is a passionate advocate for CDS.  Whitnie served as a panelist at the FDA Inborn Error of Metabolism public forum and is actively involved in fundraising, marketing, and other initiatives to bring heightened awareness to the CDS community.

Photo Credits :: Momma’s Gonna SNAP Photography

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2 Responses to Rare & Special

  1. Mandi Roach @ All My Happy Endings March 6, 2015 at 3:28 pm #

    What a heartfelt message. Thanks for sharing!

  2. Jacqueline February 29, 2016 at 8:07 pm #

    Thank you for sharing your story and positive vibes! My son was recently diagnosed with a rare genetic disorder called Shwachman Diamond Syndrome. Although it is good to know why he is going through what he is going through, it is still difficult to accept all that it may entail.

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