My First Blog – Caring for “Her” Special Needs Child

I had bolused (g-tube-fed) my son prior to taking him to school with his brother.  It was a typical morning, in that we rushed around the house, finding socks in the clean laundry pile and the occasional pair of jeans in the dirty laundry pile.  We tend to run late for school more often than not.  Between finding clothes and begging our youngest special needs son to consider eating his breakfast volitionally (by mouth), mornings are quite a feat.   Today was a special day.  I was on my way to a friend’s home to care of her son while she interviewed for a potential job position. 

When I arrived, my friend proceeded to explain the typical babysitting duties; nap times, favorite toys, and change of clothes in the event he started an episode of refluxing – which ultimately resulted in profuse vomiting sessions.    Her son, as mine, happens to have special needs.  He is continuously tube-fed, which means he is fed through his g-tube – or gastric feeding where a tube is placed in the abdomen for feedings.    He has difficulties in swallowing and has consistent reflux and nasal mucus causing difficulties in breathing.   He is 18 mos old and looks like a 10 month old – which, when strangers or passerbys see him walking – they become confused because of his small stature.  Although he does not have the same rare syndrome as my son – he does have a genetic abnormality which causes many gastrological and possible future mental anomalies.  His future is still unknown.  A familiarity that is somewhat comforting yet poignant at the same time. 

I’ve become accustomed to the idea that my own son will always face scrutiny from peers and ongoing medical obscurity.  But, to be a part of another child’s ambiguous medical – yet familiar protocols is somewhat humbling.  I take great pride though that my friend possesses confidence in me to manage her son’s needs while she is gone.  Those who have never cared for a special needs child, will ever be able to comprehend the amount of time, effort, and stress that goes with maintaining the health of children such as my friend and I.  So, as this sweet, dear child and I wave goodbye to his mommy as she drives away, I begin the rituals that I have developed – knowing what it takes to manage a medically dependent child.

At first, everything goes as planned.  We play peek-a-boo behind the chair, chase and tickle around the room….and then he starts to cough.  I’m disappointed in myself for agitating his unusual gastric symptoms.  I sweep him off his feet and encourage a pacifier to calm the gagging reflex.  And it brings back memories of my son.  The unknowing fear of what comes next.  Wondering how I will manage the symptom and how long the occurrence will last.  But, the fear doesn’t remain but for a moment or two.  It’s amazing how my immediate crisis mode kicks in and that determination to manage the situation and utter feeling of calm takes over.  Obviously, reactions obtained from my own familial medical adventures.  After a brief period of coughing and small amount of spit-up – we manage together to abstain from an all-out vomiting episode. 

I carry this sweet little boy in my arms, as he nuzzles his head in my shoulder.  The love I feel for this child is overwhelming.  His ability to feel so at ease and comfortable with me – is a confirmation of his knowing that I feel content with myself to care for him.  I just want to protect him as I have tried to protect my son from those painful endoscopic episodes.  After giving him a brief 20 minute break from his feeding to help settle his stomach, I add the required Neocate Formula to his feeding bag – of which he carries himself in a backpack behind his back.  After a fair amount of play time – it’s time for a nap.  I am personally disappointed that I no longer can enjoy his sweet little smiles and resolute spirit he exhibits during play.  I take great pride in knowing I am a part of his life and am able to care for him above and beyond what is normal required care.

As he sleeps, I continually check on him – to make sure his feeding tube isn’t wrapped around his neck – like so many times his mother and I have been accustomed to finding during our children’s slumber.  And after I pick up his toys and straighten the house from our exuberant play….I reflect on how mentally exhausting it is to manage a child with duties above and beyond the standard – but, also the confidence that ensues as mother’s of special needs children encounter due to our exceptional ability to manage such significant challenges.

Mom came home from a successful interview after picking up her little girl from preschool.  As I arrange to make Macaroni and Cheese for her daughter, we hear vomiting from the little guy in his crib.  He has proceeded to emit his gastric contents all over his crib and clothing – and begins to wail at the top of his lungs.  Within a second, I’m ready to tend to his needs – and realize mom has already made it half-way up the stairs.  I continue to focus on lunch and smile.  Our children, our special needs children – are truly blessed.

{Russell-Silver Syndrome}

Copyright 2010 – Heather J. Earley

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