Accepting the Unacceptable

My thoughts are all over the place these last few days…I have determination, love, family, faith, hope, resilience all at the same time as feeling incredibly frustrated at the fact that no matter how positive I try to be my son is still very sick.  We follow directions.  We pray.  We provide. We chart.  We problem solve.  We celebrate simplicity.  We marvel at the good will of our friends.    Yet, we still have a very sick child.  No matter what we do, his disease continues to persist.  We have very short moments of success only to be faced, yet again, with set-backs.

Each morning, Parker wakes and we assess only to come to the realization that he is not able to go to school.  He wants to be at school more than anything. He really loves his service learning class and art because he says he can be himself in those classes and express himself.  He misses his friends.  It’s breaking my heart over and over.  He is so very far behind and yet, when he is awake enough and able to breathe deeply through his continuous pain, he does what work he can and makes fantastic grades on the work he completes.  There is just so much work.  He has an Individualized Education Plan with an altered schedule and workload for the days he goes to school.  But he also takes two virtual classes and that load is not reduced at all.  It’s just done at his pace…which is s-l-o-w…We have not been given the same options around home schooling that other families around the country have had.  Our one and only option is to take him out of his advanced classes and do all regular ed…and are you ready for this…all classes are at set times and over the phone with a class of many other children who are also on the phone.  Not the best of option for a child who needs to often dictate, needs to sleep lots, and learns best visually (not auditory).  Plus if we do any form of home bound, he loses his spot at his school, because he is in a charter school.  So he would not have his school community nor friends any longer.  Can you tell that school weighs very heavily on our minds?  Parker is a very social child and our fear is that if he didn’t belong to a school community he will lose his drive to fight this disease.

Then there is the medical …where do I start.  Something medical is happening every week and usually more than one event takes place each week, sometimes multiple in a day.  Parker has weekly occupational therapy (OT) and physical therapy (PT).  And If I reflect on just this week and last week…let’s see…multiple shots and meds, blood work, an infusion treatment (every other Fri), gastro appointment, counseling, and oh…we got his new wheelchair!  That is the biggest highlight.  He has also been fighting a toe infection (5 weeks now), parvovirus (2 times in a row), and he wears wrist and ankle splints nightly.  And as draining as all this is, we would do all of it and more to find a cure.

A cure…our constant hope is a cure…today I feel like a cure is far far away.  Today, I feel like we have to accept what feels unacceptable.   Parker’s in 10 pain again…has been for 2 weeks.   And now he has overlapping syndrome…whatever that means because I can’t find any info of use on this.  He has joints swelling and  they arehot again…in fact his neck is so flaring that the temperature on his neck today was 101 degrees…but his forehead was 97 (he is usually 95 or 96).  And his fingers and toes are peeling…yet again…and still don’t know why that happens.  The last 2 times his toes and feet peeled he ended up in the hospital…so yes, we are scared.  We just want to understand this disease…we want to know the connections between all these crazy symptoms and what to expect…but all we seem to be able to expect is the unexpected…there is no predicting.  This disease has not been easy, even his doc says that…and we hear that he is flaring either because he got sick (he gets sick a lot) or because of the weather (whatever) or because of school starting or doing too much (but he doesn’t go much nor does he do much)…Parker is a fighter, but so is this darn systemic JA…it’s one big bully and we don’t like that big bad Arthur!  Parker is scared again.