The Bittersweet Life of a Special Needs Dad

The Bittersweet Life of a Special Needs Dad

The Bittersweet Life of a Special Needs Dad

 

Raising a child is exhausting and stressful.  When that child is disabled, medically complex, or has special needs, everything is exponentially more difficult.  It’s taken me a while to gin up the courage to write this guest post, so I hope it helps friends, family, and others understand what parents of special needs kids go through. 

Like many people, I harbored romantic notions of what raising children would be like.  Sure, there would be the sleepless nights, diaper changes, sick days, temper tantrums.  But I would be able to teach them to read and ride a bike, give them dating advice, play board games with them, and other cliché parenting stuff.  Then, I would send them off into the world and check in with them as they go their own way in the world.  It is crushing to learn that that you probably won’t have most of these experiences with your child.   

Cristina and I knew having a baby would change our lives, and we were prepared for it. We went to a birthing class once a week.  I had frontloaded my fall semester while Tina was still pregnant, and was ready to use my “pass/fail” option for one of my classes in the spring semester, when the baby was scheduled to come. Tina loves to remind me that I didn’t read any of the baby books. But the truth, it wouldn’t have made any difference.  No baby book on the planet could prepare us for what was coming.  At our birthing class, various couples had told us these amazing stories about their birth experiences and how magical it was.  But ours was a nightmare.  

Oscar has struggled to survive since literally the fist second of his life.  He was born five weeks early, requiring emergency C-section surgery for Cristina.  And he was born in “respiratory failure,” so the doctors had to immediately cover his mouth with a mask and pump oxygen into his lungs.  Within a few minutes after he was born, the doctors whisked him away, because they discovered that he was missing his anus and needed to be transferred to Children’s Hospital immediately.  We did get to meet Oscar for about two minutes before he was transferred, but he was locked inside a glass cage, with wires and tubes jutting out of every orifice.  Cristina was so drugged up she barely remembers it, but she held his hand for a bit.  The nurses, at Tina’s request, didn’t let anyone else see Oscar until we saw him.  I would love to say that he was the most beautiful thing I ever saw, but that would be a lie.  I hated seeing him so emaciated, jaundiced, intubated, and barely moving.  He looked like hell. To this day, I can’t stand looking at the pictures of him like that.  (Now, of course, we can’t take Oscar anywhere—the grocery store, a coffee shop, the park—without ten people stopping us and telling us how cute he is.  His adorable curly hair, bubbly brown eyes, and chubby, rosy cheeks melt hearts wherever he goes.)

I wasn’t even able to hold my own baby after he was born because he was connected to so many wires and machines.  And Cristina, because she was recovering from surgery, didn’t even get to see Oscar in person for another three days.  When she did finally make it to Children’s, he was completely anesthetized from the surgery to repair his imperforate anus.  Oscar endured another three surgeries while at the NICU.  It wasn’t until more than six dreadful weeks later that Oscar was discharged, and we finally took him home.

Every week after Oscar got home from the NICU, Cristina would read from ‘The Bump,’ a baby development blog that tells you which milestones your baby should be achieving.  Every post set us up for disappointment, a constant reminder of the things that he was not yet doing.  I wanted him to smile at us, to make eye contact with us, to roll over.  But he wasn’t.  Cristina, the eternal optimist, would say “Well, he’s not doing that yet, but that’s because he was born five weeks early; we need to view him as if he were five weeks younger.”  But even adjusting for his early birth, he was still missing milestones.  Later Cristina would say, “Well, he went through a lot of trauma at the NICU with all his surgeries, so he’s probably just a little behind.”  

At six months old, he was barely any heavier than he was when he left the NICU.  He had stopped breastfeeding and would take only small amounts of milk/formula by bottle.  The doctors implored us to install a feeding tube, connected to a surgically-created hole in his belly.  It was an agonizing decision, but after trying every noninvasive option we could, we finally relented.  This time it was me who became the optimist.  “I think he’s not developing because he’s not getting enough nutrition.  Once he gets this feeding tube, he’ll catch up!” 

But it soon became clear (to me, at least), that he wasn’t going to “catch up.”  Oscar does things on his own time.  Sure, the g-tube was very successful in helping him gain weight.  But in terms of physical and cognitive development, his milestones were still few and far between.  Never was this more obvious than when we went to a play date with friends from our birthing class.  Their son was crawling all over them, drinking from his mother’s breast, and taking an active interest in everything around him, while Oscar just laid down on his back on the floor, barely responding to anything.  

Even with a stable home, excellent health insurance, and assistance from a patchwork of state and nonprofit programs, Oscar is still far, far behind most kids his age.  At two years old, he’s not able to roll over, much less crawl or walk.  The only sounds he makes are “buh” and “duh” and a few other cooing noises.  He can eat a little bit by mouth, but not nearly enough to get the requisite amount of nutrition he needs, so we feed him mostly through his g-tube.  He doesn’t respond to his own name or any other verbal cues.  To be sure, Oscar has achieved many things we were beginning to think would be impossible with the help of his physical, occupational, and speech therapists (who are all heroes), such as sitting up, standing (with assistance), drinking from a sippy cup, and maintaining a crawl position.  But his therapists come only once a week, and he needs therapy every day.  This puts the onus on us to not only be Oscar’s parents, but also his developmental therapists.  So while many parents spend most of their free time reading books to their kids, chasing them around the house, or playing games, we are usually taking Oscar to doctor’s appointments, arguing with insurance companies, trying to find our way through the maze of state programs, and making him do physical therapy.  Since I’m usually at work, the burden falls mostly on Cristina.  Oscar recently started wearing glasses and a hearing aid, but they’ve only marginally improved his development. And, of course, being medically complex means he’s often in the hospital for other ailments.  We spent almost our entire Christmas vacation (my only week off from work this year) at the hospital because Oscar had pneumonia, forcing us to cancel our trip to Miami.  Emergency room visits are becoming routine.  Unfortunately, these sorts of setbacks delay his development even further.  

One of the most difficult parts of being a special needs parent is watching the development of your friends’ and family members’ typically developing children.  Facebook has become a dumping ground parents to post pictures and videos of their children’s milestones, beaming with pride as they learn and grow.  I want so badly to be happy for them, but I’m overwhelmed with resentment.  Every time I see a child Oscar’s age doing just about anything, it’s a reminder of the things he cannot do, and it eats me up inside. And the fact that I can’t feel happy for my friends makes me feel even worse.  The vast majority of children achieve a new milestone every week or two.  For their parents, all the diaper changes and late nights seem like a small price to pay for the joy that comes with each new achievement.   Special needs parents, on the other hand, put in a great deal more work, and are rewarded with far fewer milestones to celebrate. Still, as time goes on, I’ve learned to be content with watching Oscar overcome his own personal challenges.  Oscar may not hit many milestones, but when he does, it’s a hell of a lot more exciting for us than for parents of typically developing children.

Some special needs parents also deal with even deeper struggles.  I often question whether my son even knows who I am.  Cristina says he must, because of the way he looks at me and the way he calms down as soon as I pick him up during one of his tantrums.  Oscar generally has a very easy-going demeanor, and I can always make him laugh, whether by tickling him, clapping, or just smiling at him.  But when I look into his eyes, I can’t tell whether he recognizes my face or my voice.  Does he know who I am?  Or am I just another person making silly noises and faces?  He’s prone to long, inquisitive stares.  People often comment, “Oh look, he’s so focused and curious!”  But I don’t see it quite the same.  I see a boy who, though generally very happy, is lost in his own skin.  He’s missing genetic material and is trying desperately to understand things he never will, things that his brain won’t allow him to. 

And then there is the boredom.  Typically, people believe that there is never a dull moment when you’re raising kids.  But when your child can barely move, doesn’t speak, and responds only to a narrow set of stimuli, the monotony can be overwhelming.  He’s been playing with the same toys for over a year.  “Well, at least we don’t have to run around chasing our baby,” Cristina said to me, always looking for a silver lining.  But I would give anything in the world to be able to chase my son around the house, or at least to know that he recognizes my voice or my face.  That doesn’t mean that I love him any less because he’s not able-bodied and intelligent.  It just sucks.  There’s no more eloquent way to put it.  Any special needs parent will tell you that they just want their children to have all the opportunities that typically-developing children have.  

I’ve learned to live in a netherworld between hope and reality.  If I say something like “one day, when we’re sending Oscar off to college…,” then I’m delusional and setting myself up for grave disappointment.  But if I say “Oscar will never go to college because we will be taking care of him until we die,” then I’m just a pessimist who’s given up on his full potential.  The truth is I have no idea what the future holds, and that’s terrifying.  And once you succumb to this reality, deeper questions emerge.  Why do we assess value in life based on personal achievements?  Is Bill Gates really more important than someone earning minimum wage?  Is a doctor’s life more valuable than that of someone who never graduated from high school?  Is a professional athlete or a NASA scientist better than someone who can’t walk or communicate?  Our society tells us that the answer to these questions is yes.  The “better” you are, the more money and recognition you get.  Our government is certainly programmed by this thinking.  “Work requirements” for Medicaid.  “Merit-based” immigration policies.  Our society revolves around a series of contests: the Super Bowl, the Grammy’s, Top Chef, American Ninja Warrior, college scholarships, class rankings, work promotions, social media follower counts.  The list goes on and on.  This winner-first culture makes the parents of disabled children feel like failures.  Even the ironclad knowledge that such shallow values are meaningless doesn’t inoculate me from these feelings.   

Oscar inspires me every day.  How many two year olds have undergone six surgeries?  Every time I whine inside my own head about the small things—back pain, exhaustion from work, getting up in the morning—I think of how hard Oscar has to work to do the most basic tasks, and it motivates me.  Oscar possesses a kind, joyful spirit, and his laughter is contagious.  I don’t have any interesting words of wisdom for any new special needs parents who may be facing similar challenges.  All I can is that it’s not your fault.  People like to say things like “God has a plan,” but why would God put that burden on you or your child?  What did Oscar do to deserve his genetic lot in life?  No one is going to give you a medal—whether you’re spending half your life in doctors’ offices, changing colostomy bags or catheters, lifting wheelchairs, or operating feeding pumps or tracheostomy tubes—special needs parenting is a thankless job.  Every time you hear other parents complain about mundane problems that you wish you had, you’re expected to be polite and just nod and smile.  All I can say is, just make sure you savor the good moments with your child.  One of my favorite things to do is watch Oscar as he sleeps.  I often wake up in the middle of the night and go in his room to watch him for a while.  He is so peaceful and cute, I can hardly stand it.  I’m filled with butterflies and feel as though I might explode.  In that moment, his physical and cognitive flaws are imperceptible.  He’s just any other two year old boy, dreaming of the wonderful things that two year olds dream about.  

Chris Edmunds 

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