Tuesday, August 30, 2011

Love and Determination Wins

I wrote this Nov. 2010 -- It has taken me a while to get this up here.

Shortly after lunch my ex-husband and I had a meeting at the school to go over our son's I.E.P with his teacher and resource room teacher. His IEP (Individualized Education Plan) was put in place upon his return from cancer treatment. It is a plan that has acted as a vehicle to help him with the cognitive problems and deficits resulting from his brain surgery and treatment. Kevin missed most of 2nd grade and the beginning of 3rd grade.

The backstory before Kevin's diagnosis:

Kevin's dad and I started the divorce process when Kevin was 6 months old. We both have had to make compromises to give Kevin the best that we can. We have had to learn to work past hurt feelings and learn to work together in our own ways. It isn't always pretty but we have figured it out. When I married Kevin's stepfather, Mike, he was happy and eager to accept responsibility for sharing in the effort to raise Kevin. We all have our quirks, we all have our strengths and we all have our weaknesses.

So fast-forward to the time shortly after Kevin's diagnosis and brain surgery. I was an emotional wreck, as probably most mom's would be finding out that their child has cancer and requires some pretty scary treatment. I was busy negotiating and learning the hospital system as quickly as possible while trying to still care for an infant and trying to spend each moment I could by Kevin's bedside. Kevin's dad still had work to balance and he did the graveyard shift majority of nights while Kevin was at the Children's Hospital. Kevin's step-dad and I shared daytime duties some overnights when Eric needed a break, typically overlapping. As we fell into our groove, as the shock wore off, one afternoon I watched Kevin's step-dad reading to him and saw how it calmed him down. His aunts read to him when they came to sit by his bedside, his grandmothers, his grandfathers. Kevin starting going through book after book, probably enjoying the familiar voices carry his thoughts far away from a strange nightmare of a situation into whatever make believe world resided in those books.

When we signed the protocol outlining what Kevins treatment would be in 2008, we were also told that the permanent late effects from the cancer and/or treatment could be:
  • loss in IQ,
  • hair loss,
  • growth hormone deficiencies,
  • memory problems,
  • learning disabilities,
  • bladder damage,
  • sterility,
  • lung damage,
  • kidney damage,
  • hearing loss,
  • damage to nerves,
  • damage to brain tissue.

As Kevin went through treatment we tried to continue his education the best we could with weekly visits from a private teacher that St. Jude provided, trying to make it through homework despite his low blood counts, and when the blood counts were high enough and it was safe we went to historical landmarks around Memphis, museums and the zoo. I had a hunch that as we were killing neurons in his brain we could make new connections if we kept his brain active, to continue to challenge him just enough without him feeling pressured and overwhelmed. To Kevin's credit also, he hasn't been a wimp either. He has worked hard to overcome and catch up. He has set backs when his shunt malfunctions and we have to spend more time at the hospital and doctors. His dad and I have spent hours working with him, we've hired tutors. But Kevin also enjoys learning, asks questions, and seems to enjoy having his head in books all the time.

At Kevin's I.E.P. today Kevin's teacher pointed out something I hadn't grasped in my somewhat frantic effort to try to make sure Kevin still had a future – now in 5th grade Kevin is doing grade level work - amazing! The only thing he requires is a trip to the resource room to take some tests, at his discretion. He is allowed extra time for his tests, but from the report today he isn't requiring the extra time as much. The teacher pointed out Kevin basically skipped all of 2nd grade and apart of 3rd and caught up by 5th grade. That took my breath away….. because he has.

In my score sheet for Kevin, love and Kevin's determination gets a million points and cancer gets 1. Take that cancer!

In my Danish-heritage induced tendency toward optimism, I have to think that if a bunch of adults (ex-husbands, ex-in-laws, new in-laws, family, friends, teachers, strangers, etc.), some of who according to society norms are supposed to dislike each other, are able to shun "normal" and work amazingly well together (I think my ex-husbands dad is one of the best peacemakers I know) to take care of one sick child – I ask what could our country do if we only lived up to our capability to look out for one another?

I also can't help but mention, if we can all put our differences aside to help a child (or children) overcome a terrible disease, I know its on a much larger scale, but why can't our country do a better job of coming together for the good of all? How about for those facing cancer without health insurance? For those who lose their health insurance in the midst of a health crisis?

I see such contradictions in some groups where they are the first to volunteer and help; sometimes those groups are the first to vote down legislation that would allow everyone access to health care and help make our country much more economically competitive with majority of developed countries.

I may see the world differently than most; I have seen kids suffer terribly, I've watched parents lose their children in very painful deaths that can take months-- I almost lost mine this way. I also have seen the amazing power of community spirit.

In honor of what those children have to go through, the late effects they have to live with that for previous generations of survivors has made employment difficult. It is these survivors and their fighting spirit I try to keep in mind as I try to conquer Chemistry and Math (my two worst subjects). I'm well aware life isn't always fair, but that doesn't mean we should make it more difficult for those who have already been dealt difficult circumstances. Kevin was given a soft landing spot in the form of St. Jude Children's Hospital. My wish is more people have soft landing spots in the midst of their challenges, a place to support and rise back - as Kevin has with lots of help, support and understanding from others.


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