Saturday, November 24, 2012

Cerebral Palsy: Moving on from WHEN and accepting WHAT

For a long time on my blog, I've been using one of several awkward phrases in describing what is going on with Max including 'neurological condition', 'brain damage' or 'motor issues'.  I haven't really known what to call it.  I felt we had no real closure on what really happened or what it was, I felt we were still in this search to find a label and as such I couldn't think of any easy way to sum it up.  You may have noticed this past week I have started using the term 'cerebral palsy' more and from now on I will be using that term in place of the other awkward ones because after our meeting in California, we feel quite confident that we know what Max has.  It wasn't a particularly surprising diagnosis for me, nor an especially upsetting one.  There have been plenty of worse things we have thought it could be and tested for and cerebral palsy is a fairly broad term and one I have had in the back of my mind for a year now.  It still feels a bit strange to just openly write that my son has cerebral palsy... but writing it is part of accepting it so I wanted to write a post and introduce you to that term.

If you do not know what cerebral palsy is, it is basically any motor disorder that is caused by some epsiode of cortical or brain damage, usually from oxygen deprivation.  It is really an umbrella term with tons of subtypes and people with cerebral palsy can have the wide range of functioning from walking independently and just having some problems with hand writing and motor skills, to being entirely dependent and wheelchair bound.  So the term itself does not surprise me or mean very much.  Once we eliminiated a separate condition, we knew we were looking at the label cerebral palsy.  What is sadder or more difficult, I suppose, is that Max has been diagnosed with the most severe sub-type of cerebral palsy.  He has what is called 'Spastic Quadriplegic Cerebral Palsy' which actually sounds worse due to the emotive value of those words.  But basically quadriplegic in this context just means that all four limbs are affected.  He is not quadriplegic in the cannot move, cannot sense meaning of the word.  But all four of his limbs are affected by his condition.  And his movements when he does make them are not smooth and purposeful but rather spastic meaning jerky and not well controlled.  Hence the label. 

It is a severe form of cerebral palsy generally associated with wheelchair dependency and communication difficulties.  In terms of what it means about his cognitive or intellectual ability, it is harder to say.  Although his CP makes him more likely to have an intellectual disability and he does currently have cognitive delays, he could also have a pretty high level of cognitive functioning if we make sure to maximise his experiences and exposures and if we find a way to help him communicate with us.

Having this diagnosis has been good, I think.  I am glad to be done with the search for what is really wrong and feel at peace that we have reached this point.  And CP is not degenerative and people can live to adulthood with it so it's a lot less upsetting than some of the things we have had to consider this year.  The only thing I think that I initially struggled with is that we still do not know when it happened (when he suffered from oxygen deprivation).  The team at Stanford did not know and do not think we'll ever know.  From looking at features of his brain, it seems that he suffered damage around the week he was born.  It very well could have been in utero and in fact have been what prompted their premature birth.   It could have been during birth.  It could have been 3 days after birth when he had his lung bleed.  We don't think we can really pin point it, even though in reality there would have been an exact moment.  And for a while now I have felt a strong pull or need to know when.

But then the other day I was thinking about 'anniversaries' if you will.  I have noticed I often think this time last year etcetera about key events.  Even coming up on the one year after Addie's PICU stay, I find I'm thinking more about it.  And I read a lot of blogs of parents whose children suffered brain damage from choking or drowning and they know the day it happened and when that day rolls around, so do a lot of emotions.   And I realized it may be good I don't really know.  Because most likely options were either their birthday or Christmas and I don't want either of those days to be the anniversary of when Max went without oxygen.  Those are two extremely happy days for me.  And they get to stay that way because I don't know when it happened.  And I don't have to think too much about the moment it happened and what I was doing or how he felt.  By it staying as 'at some point in that week or so' it stays that little bit more removed.  And it's enough to know that.  I am ok with not knowing when and actually starting to feel glad i don't.

Especially when at the end of the day, when just doesn't matter.  Dr C, our transplant surgeon said that what happened to Max has happened.  It is not still happening and it's not going to happen again.  So all we can do now is make the absolute best for him of what is.  And that is where transplant becomes so important.  It is the next step.  So I am letting go of when it happened and accepting what it is- my son has a severe form of cerebral palsy.  He has serious motor issues.  But he is here with us.  Whatever happened changed him but it did not take him and for that we are forever grateful.  And what is more it did not take his smile, his resilience, his gentle spirit, his happiness or his ability to feel loved.  And it will not take his future.  We won't let it.  His future is going to be different and it will involve challenges I wish he did not have to face.  BUT it will involve love and happiness and we are going to be grateful every day for his future.  So I am okay with Cerebral Palsy.  I am at peace with using the term and explaining to people that Max has CP.  It's been a year long journey to get the label and for us to feel that acceptance but we are thankful to be there.  With the answers we need to know and the closure and peace we needed to have.

No comments: