Sunday, March 8, 2015

The Process of Letting Go

When you first learn that your baby suffered a brain injury, it can be pretty devastating.   When we got the results of Joshua's MRI we were told that it was possible for some children to "beat the odds" and to go on and have no lasting problems after suffering a brain injury, but that they wouldn't expect that for Joshua.   When we questioned them about what sort of deficits we might see - Would he have a physical disability?  A Learning Disability?- they said it was impossible to know, and that we would just have to wait and see how he developed.

I told myself that Joshua was going to be fine.    Of course he would be one of those children who beat the odds and go on to have no problems.  Of course.  

Once I started googling Hypoxic Ischemic Encephalopathy, I found the blog of another parent and her child did end up with the full recovery.   Wow, how amazing it was to find that blog and see that it was indeed true that this could be possible for Joshua as well.

From the time he came home at 12 days old, to the time he was 6 weeks old, I lived in blissful ignorance that everything was going fine and Joshua was just like any other baby despite his traumatic start.  But after I took him to his 6 week check up with the GP, things slowly started to unravel.   She was concerned that his head hadn't grown very much and that his coronal sutures were very prominent.   Instantly, that made me worry.  But when we followed up with a Paediatrician the following week, she was reassuring, and I felt better again.   But this was the beginning of the obsessive measuring of Joshua's head circumference.   I cannot even describe how much I willed his head to grow, and how much I worried about what his head size might mean for him in the future.  The frustration I felt watching his head circumference slide down the percentile chart.

When Joshua was 12 weeks old, his Paediatrician diagnosed him with Hypertonia.  High Muscle tone.   I was annoyed.   There was nothing wrong with him.  He was making his muscles tight on purpose, resisting when people tried to move his limbs.   Right?  At this same appointment, Joshua's head circumference was on the 5th percentile, and I was again given hope that it may stay there and continue tracking on that curve.  It did not.  By the time he was 4 months old, his head circumference had dropped to below the 0%.  I still measured it often throughout his first year, wishing it would grow.

Joshua was referred to Physiotherapy, and he had 2 appointments with the hospital physio before being referred to Early Intervention.   They told me at the hospital that they had seen typical babies with muscle tone like that and they had outgrown it, but it would become clearer around 10 months or so.    Again- Hope.  Everything can still be ok even with this little hurdle.

Joshua was 5 months old when he had his intake appointment for Early intervention.  At that time, he was not considered to be developmentally delayed.  There is a fair range of normal when it comes to meeting developmental milestones and although most other babies his age were doing more than him he wasn't yet outside of the normal range for meeting the expected milestones.  They were concerned that his patterns of movement were not normal and that he was having motor difficulties due to his muscle tone, but he was not delayed.  He could hold his head up.  He could smile.  He could roll from his back to his tummy.  He could reach for toys.  He was doing ok.  There was still Hope that everything would be fine.

Once Joshua started Early Intervention, his development was monitored regularly using the Ages and Stages Questionnaire (ASQ).   And so started the fixation on his development.   All these things he was supposed to be doing.   All these things he wasn't doing.   Over the next few months the expectations of him increased, but Joshua's abilities didn't match the expectation.   I downloaded the ASQ, and I would study it to find out what he should be doing and what I should work on with him.   When he couldn't do things, it filled me with dread.  It wasn't supposed to be that way.  Joshua was supposed to make a full recovery.    By the time he was 8 months old, Joshua was delayed in both fine and gross motor skills.  He wasn't sitting up.  He wasn't crawling.  He wasn't rolling both ways.  He had an obvious preference for one side of his body.  (which was first noted when he was 12 weeks old and it hadn't gone away).   I had started reading about Cerebral Palsy, and I knew that the issues Joshua was facing were consistent with Cerebral Palsy.  The abnormal muscle tone.  The preference for one side of the body.  The motor delays.   The dream of a full recovery was slowly slipping away.

Although it is not really a good idea, it is hard not to compare your child.  And everyone has their "bench marks" by which they measure their child.  Looking at typical children, seeing what they can do, and then just wanting more than anything for your child to be able to do that too, because if your child can do that, then maybe, just maybe, a full recovery is possible after all.   I'm sure I had a number of these bench marks, but I was reminded of one recently when I came across a video on my computer of Joshua so I will use that as an example.    The little girl whose Mother's blog I found early on in our journey, who had made a full recovery, owned a soft fabric Ikea book identical to one that we had.   Her mother had posted a video of her at 8 months old, and she was able to point to the spider when asked "Where is the spider".   "Where is the lady bug"  and so on.   And so, for whatever reason, that became a bench mark for me.  If Joshua could do that, then he'd be just fine right?  So I'd show him the book.   I'd try and teach him what the spider was.    I'd try and ask him where the spider was and see if he knew.   He didn't know.   It was months and months and months before Joshua knew, and could identify things in books.   He didn't meet that bench mark for normal development.
It happens all the time...  Parent's clutching desperately at things like that, trying to compare their child to other children because the wait and see is really hard.  Not knowing what your child's future holds is really hard.  Will they walk?  Will they talk?  Maybe if I can find another child who was just like mine, then I will know what to expect from my child.
It doesn't work that way though.  Every child is so unique and individual it is simply impossible to map your child's path based on another child's.    And putting your child up against these impossible bench marks is only going to end badly if your child can't do it.  Why oh why, Why couldn't Joshua just find the spider in the book so we could live happily ever after???

Bit by bit, the dream begins to die.  And yet, I still chased it.  Desperately wanting to catch it.  That is what it is like, trying to catch hold of something really slippery, something that you really want but you just can't quite grab it.  It starts to roll away from you and you run after it.  At first, its only just out of reach and you think you could still grab it.  You just need to try a little bit harder and you will be able to reach it.   But it starts to get away from you.   It keeps on rolling and the distance between you grows.  You keep running after it, but the gap is only widening now.   At some point, you have to make the decision to stop running.   To accept that it has now gotten so far away from you, it just isn't going to be possible for you to catch it.    Sometimes you look around and see other people holding their dreams firmly and it makes you sad.  It makes you angry.   Why couldn't you have caught yours too?  Some people don't even realise that it is something to desire, something to cherish.  For them, it is just something they expected to have and didn't even know it was possible for it to suddenly roll away.  

At 12 months old, Joshua was delayed in all developmental areas.   At 13 months, he received his official Cerebral Palsy Diagnosis.   In the course of a year,   I'd gone from holding a new baby and believing and hoping he was going to be fine - he was going to develop typically and have no long term impact from his brain injury- to knowing that wasn't the case.  To accepting that my child had a life long disability and that there would be things that he would struggle with for his entire life.

Being able to focus on your child and their progress- instead of focusing on where your child "should" be- is like a weight has been lifted from your shoulders.   You are done running after something you can never catch,and instead you can just enjoy the walk and the beauty around you.
It is a process.   A journey that is unique to each parent of a child with a disability.   But each and every one of us are asked to slowly give up on the hopes and dreams that every parent has for their new baby, and to begin accepting the child we have for who they are - not who we thought they would be.    Letting go doesn't mean giving up.   It just means understanding that helping your child be the best they can be, doesn't mean striving for "typical".