Wednesday, December 19, 2012


Oliver's birth has been such a blessing for my psyche.  Most parents of young children probably wouldn't agree with me ... but I think raising two small kids is far easier than raising one.

I think that's because I have a unique perspective.

You see, Oliver has provided me with a very welcomed distraction from constantly reviewing my responsibilities as Jackson's mother ... and often feeling like a failure.

When Jackson was diagnosed with Progressive Infantile Scoliosis at age 4 months, my entire "new mommy" world was turned upside down.  As if little sleep, a painful hoohoo, bleeding nipples, and raging hormones hadn't been enough ... I was slammed with the reality that my cookie-cutter idea of motherhood was about to radically change.  Suddenly, I was thrown into a world of specialist appointments, hospital stays, invasive medical procedures, expensive travel, endless phone calls and paperwork, an altered lifestyle, and mounds upon mounds of worry.  In an instant, I had no choice but to remove that "new mother grin" from my face and put on my "big girl panties."

The exciting new club I thought I'd joined kicked me out ... and I found solace in a single friend who understood my unique position (xoxo LB).

As Jackson's scoliosis journey continues to unfold, I am faced with new challenges.  His condition is one that requires a constant ability to "take it one day at a time."  I am learning to accept the fact that I am a "black and white" woman living in a very "gray" world.  Progressive Infantile Scoliosis follows no treatment plans, timelines, averages, or promises.  And, no matter how many times you ask me "So, how much longer will he have to wear his cast?" ... the answer will always be "Until his back is straight."  Trust me ... I find my answer to be just as elusive and frustrating as you do!

Jackson's PIS also landed me (from a mother's perspective) in a odd, limbo-like place where I often feel alone.  As amazingly neat as he is, Jackson cannot be labeled a "normal" child.  He isn't allowed to play in water or take baths.  He cannot play in sand or dirt.  He cannot get overheated.  He still must wear a bib to eat or drink anything although he is over 2.5 years old.  He cannot climb stairs, play on a playground, or run without one-on-one assistance.  I also have to be extremely carful about illnesses ... because his lungs cannot fully expand (respiratory illnesses), his cast cannot be removed or washed (GI illnesses), and he must undergo intubation and artificial respiration for his surgical procedure every 8 weeks (any illness).  Sometimes I feel that the germophobic aspect is the most limiting for our family.

I doubt many would argue that this isn't a "normal" scene every 8 weeks:

However, I likewise struggle labeling Jackson a "special needs" child.  It isn't that I am afraid of the term.  Rather, it is that I am afraid of offending another extraordinary parent of a child with profound medical needs.  Daily I am thankful that my son, for the most part, enjoys life to the fullest.  He is an incredibly brave spirit who rarely thinks twice about his deformity or its treatment.  Often, he proclaimes that he "loves his cast."  Therefore, as much as I feel an outsider in the "normal kids" club ... I also feel like an intruder in the "special needs" world.

I doubt many parents of a severely profoundly disabled child would argue with this picture:

So, what's to be done?

There isn't a simple answer, I'm afraid.  I count my blessings daily that Jackson is a happy toddler who responds to me with love and learning.  I hope and pray that never ever changes.  However, sometimes this mommy gets a little lonely in "limbo."  Just like it was in middle school, not "fitting in" anywhere is difficult.  

I do my best to find respite in and contribute to both the "normal" club and the "special needs" heros.  And, my purpose in writing this post in simply to say that I'm doing my best.  So, if I have ever made you "normal" moms feel awkward or uncomfortable by talking about Jackson's condition ... I am sorry.  No questions are ever stupid, and I thoroughly enjoy educating others on PIS.  And, if I have ever made you "special needs" moms want to roll your eyes at my seemingly simple burdens ... I am also sorry.  Much like you, I am traveling a road less traveled.  Most every day brings at least one small pot hole that I must navigate around.

Just sharing my heart.

Any thoughts from either side would be infinitely appreciated in the comments section.

1 comment:

Susanne said...

Hi Jen,

In the wee hours of the morning, having been up all night watching my daughter, I stumbled across your blog (I'm not sure how!)

I am familiar with your feeling of limbo. My daughter, Ellie, has a genetic disorder called Prader-Willi syndrome. In the two years since her birth, we've spent seven months in hospital in and out, in and out, trying to figure out her sleep apnea. In our time at the hospital, I've been blessed to meet some incredibly courageous, incredibly inspiring mothers of children with complex special needs. Ellie is genetically different from "typical" kids, and that causes some issues. But what is so confusing for me, at least in terms of figuring out where I fit in, is that in the same breath a doctor will say "we've never seen a kid with these strange breathing patterns", and then go on to say "if you put her in a room with a group of typical kids, you wouldn't be able to point out that she is different". Much like your boy and his serial casting until the problem is fixed, Ellie has non-invasive breathing support until her breathing is fixed. I have a very hard time claiming the Special Needs Parent label, for exactly the same reasons as you.
Ah, rambling to a stranger in the middle of the night :)
I don't know that we need to label ourselves as anything other than what we are. So, "Jackson's Mom", I'm on the fence with you!

"Ellie's Mom", Susie