Iceberg

There has been alot going on around here in the past few months.  Actually alot of medical stuff.  It hasn't been like this in a while.  I'll be honest.  I am tired - mentally much more than physically.  In the past when more medical 'stuff' mounted we were already in up to our nose, so a little more was no big deal.Now we have been in a place with a slower place and just shifted from our momentary deep breath - back toward medical mania.  New stuff.  Always something new it seems, which should not be a suprise.  We have always known there would be new stuff - do you like that I keep calling it 'stuff'?

Just when I thought I had this whole Ivey thing figured out she threw out a new plan straight from right field.  It's time to head up to the attic, dig around in a dusty box of college textbooks and reread what little there is about the tip of this iceberg we are about to encounter.  Google get ready.

Recently someone unknowingly said something very hurtful to me about my relationship with Ivey.  And for a brief moment in time I actually let those words in.  I doubted my role in Ivey's life.  I wondered if they were true.  But in the past weeks since the wheels have started grinding again, the fear that never subsides from having a daughter like Ivey has began to well up again.  A fear that I would never wish on anyone.  It reminds me of the roads that are less traveled that we have walked - sometimes crawled on- most times alone- making our own path through weeds and briars - sometimes coming out scraped and battered, but we come out alive.  And that is the key word that brought me back to center. 

Today as I sat in a new physicians office I was pulled back to reality.  OUR reality.  He was in mid-sentence - referring Ivey to anther physician - when he stopped talking and just looked at me with a grin.  Apparently I had the 'giggle so I don't cry' grin on my face because he said 'Your doing a great job with her.  You are doing an excellent job.'

I'll admit it.  I needed to hear that.  Because he is right. I, like all other parents with medically fragile special needs children, am critiqued on a daily basis.  No other parents are viewed under the magnifying glass like we are.  Our children's progress, or lack there of, is our check mark for success - their success.  I think other adults involved sometimes forget, especially with kids like Ivey, that our kids have more in their resumes than whomever is working with them at the moment, whether it be medical or educational arenas.  Most of those same people who have the best of intentions with our children, would never want the life that they expect us to create for our children - working all the time - sometimes our family emploding - never having enough hours in the day.  They would never want to be judged in the same manner.  Ivey has 15 doctors, therapists (OT, PT, O/M, VI, HI, SLP), teachers, home health nurses, countless appointments and life inbetween.  Top it off that she is 1 out of 7 known kids with her genetic abnormality.  She is a not so common deafblind kid.

He was right.  My daughter is here, she is alive and honestly did you know that she wasn't supposed to be? Despite my faultering with confidence at times, Ivey is thriving.  Amidst the medical complications that her life entails, she has managed to be a very happy smart little girl.  She may not be typical, nor does she follow some curve on a chart, or conform to be like some paragraph in a textbook on special needs  - She is much more than that. 

She is my daughter.  And she is amazing. No matter what, that is enough for me.

I have an appointment to confirm tomorrow then we'll talk.  All and all this next move should prove to be very good for Ivey.  It's just me kicking and pounding my fist for a moment.  I sit beside Ivey and make decisions for her everyday on every aspect of Ivey's life.  Every aspect.  Those decisions are not easy. I just hope this blog can help those who are in the lives of children with medical and educational special needs see that all of these decisions are woven together.  Unlike those who work with Ivey individually on focal areas of need, I only see her as a whole.

And all and all over the years decisions have been made that were/are the prominant decision to be made at the moment.  When she sat in a hospital for weeks after being trached unfortunately proper techniques for teaching her were not our focus and after the trach we didn't linger on it...my girl had things to learn.  My point.  Ivey has both mental, motor and physical delays that are naturally built into her body.  She spends time battling seizures and illnesses. She undergoes more than her share of procedures. She has at time- missed- valuable time. 

So if you read this in blogland go back to the medically driven special needs child in your life - and take a long look at the tenacity of that child.  Praise the accomplishments they have made.  Even though you can read background about the child, those words in black and white do not entail the true history or what they have endured and SURVIVED when you were not part of their life.  You can't imagine the choices that have been made for that child, nor would their parent want you to.   Don't piece mill the child.  Take them whole and service them as a whole.  And know that child is standing before you because they had parents who were with them every step - making decisions - loving them - cheering them on -

Whether it be this blog, a therapy session, a few hours in school, a doctor's appointment or weeks in the hospital, those moments are only TIPS OF THE ICEBERG.  What lies beneath the surface...well you know what I mean.