Thursday, January 12, 2012

Balance: SN kid style!

For anyone who has children with special needs, I know you know what this means.  I have an order from the pulmonologist that Willow is supposed to wear her oxygen whenever she's walking.  She can't carry the tank because it's too heavy and then she can't walk.  She wants to participate in all the things that other kids her age do (to the best of her ability.)  She wants to ride her bike and bounce on the trampoline, take dance classes and "run."  None of those things are possible for her with a back pack oxygen tank.  So what do we do?  We have to find balance.  We have to balance her health with her activity level, her happiness and social and emotional growth and well being with what she is capable of from a lung standpoint. 

Willow's had a lot of surgeries.  In the year and a half we've lived here, she's had 5 procedures requiring anesthesia.  Three were ear surgeries.  One was an MRI to evaluate for hip surgery and now again for her recent foot surgery.  Putting a child under anesthesia is never a good thing.  Again, we have to weigh that against quality of life.  Without the ear surgeries, Willow's world would be muffled and hard to understand.  Her academics would suffer.  When she can't hear, her speech is so slurred that others have a hard time understanding her.  Her foot had gotten so twisted that it was harder for her to do the things she loves like dance and even walking was sometimes painful and difficult.  More time in a wheel chair to avoid anesthesia?  or a foot surgery that can fix the problem and make it easier to walk?

Every specialist sees through a narrow window.  A pulmonologist's priority is lungs.  They don't see muscle weakness so much.  Orthopedic surgeons see bones, and ligaments and how they work together.  A physical therapist sees how weak Willow is and wants to increase her therapy schedule to 2 times per week.  Speech and occupational therapy of course would need equal time.  If I took her to as many appointments as "they" tell me she needs, she would be "truant" from school!  Already, the school is breathing down my neck because she's had too many absences.  Their priority is education.  All of these medical problems are irrelevant to them.

I have to see it all.  I have to make good choices for the care of all of my children, individually and as a whole. . .when there are no perfect priorities.  Somewhere, something suffers, no matter what choices I make.  While everyone has their opinion, at the end of the day, I am the one that has to live with my choices and know that every single one has such an impact on the lives of my children.  There are no right answers.  We can only do our best and then live with the consequences of our actions. 

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