My Reflective Birthday

Today I turned 36 years old.  It doesn't seem possible as I still feel really young but last night I watched City Slickers and realized that Billy Crystal's midlife crisis happens at the age of 39 and that I am truly not that far from that.

I don't think I'm having a midlife crisis (at least not yet) but it does feel strange to arrive here near the orbit of mid life and be honestly pretty happy about how things are turning out.

Certainly there have been ups and downs in 36 years and loves and losses too but in general there is a lot to be thankful for - even in the messy bits.  Gratitude seem to be the galoshes you step into as you walk around the parts of your life that remind you of all the happiness - both the things that make you happy and the hard things that remind you to be happy.

At the end of every day I ask the kids what the favourite part of their day was.  It's our reminder before falling into dreamland of all the things to be grateful for that day.  On a bigger scale when we have birthdays or anniversaries in our house we remember our happiest part of the previous year.   Sometimes we also dig around in the hardest part too as remembering can sometimes take you in those places as well.  This year my happiest and hardest part of the year were the same part.

Our beautiful son who fills our house and hearts with so much joy has struggled in his six years of life.  We noticed it early as he wasn't particularly interested in talking even though he was a very social kid.  Saliva control and issues with feeding were also early signs that something was going on for him.  He met all his milestones and he was a very social kid and people could tell us what it wasn't (i.e. he didn't have autism) but they weren't really sure what it was.  He started speech and language help by the time he was 2 and things slowly moved forward with speech but it was certainly slow.  He loved preschool and had friends but he needed a little help - communication was hard and often he seemed to be like a german shepherd puppy, a big spirit in a body that hadn't caught up yet.  No one seemed to be able to figure him out, this was particularly disheartening for his doctor mother who has/had the idea that if you work hard enough at something you can always "fix" it.  We took him to doctors, most of whom were terrible, who diagnosed him with "global developmental delay" which I believe is a terrible diagnosis, wasn't true in our case and is wildly unhelpful.  Take note, paediatricians, that terminology should be worked on.  In our case it wasn't true because we knew (and he had been tested so we objectively knew) that cognitively there wasn't a problem but often it was like we were living with someone who had a stroke, he worked so hard to get a word out that we knew and he knew that he already knew.  Because he is such a loving kid and because he met all his milestones, people we knew and the doctors we took him too, reassured us that we were over-reacting about certain things and that further testing wouldn't really be of benefit.  He had a great doctor in Melbourne that said the same thing, someone I highly respect and trust.

We came home from Australia and pushed a little harder.  Part of the workup is an MRI and I hesitated on that front because an MRI for a kid means a general anesthetic which has risks.  We finally decided it was worth the risk.  We all went together and our brave little boy went off to sleep and into the MRI machine.  We didn't hear anything about the MRI for many weeks and everyone told us that it was very likely to be normal (which is another reason we hesitated to do it) so when Keith took him to the geneticist (another part of the workup - his genetic tests are totally normal) and I asked him to get a copy of the MRI report (for completeness) we were shocked. I still feel bad for the geneticist as he had no idea that he was walking into an MRI that he would have to explain when he didn't order it or really completely understand it. Cian had two injuries to his brain - one that likely happened very early in development and one that happened later around the time of delivery.  It was unlikely his actual delivery (which was fine) but could have been as simple as an infection that I didn't have any symptoms of (because I was never unwell in the pregnancy).  The genetics doctor stumbled through the explanation of the MRI report to Keith, mumbled something about "birth asphyxia" and suggested we talk to our paediatrician (who absolutely should have called us with that report).  Keith came home to his post-call wife who subsequently became hysterical about the MRI report.  There were several hours of crying in my room before a sense of calm where I realized we finally had an idea of what was going on for Cian.

Cian has cerebral palsy.

The signs now are everywhere: his right foot turns in when he is tired and is walking or running, his oral motor control, his difficulty with speech is directly related to the motor issues of getting the words out.  He has to work 10 times as hard as the rest of us to say what he wants to say.  That was a hard day but also a day I finally felt things starting to shift - after six years of trying to work through a medical system that I work in that wasn't working for my kid.

I was oddly calm with the fact that I knew he had cerebral palsy but I didn't officially have that diagnosis until it was made by someone other than Cian's non-neurologist/gynecologist mother.  So then I mama warriored everyone in order to get him a diagnosis.  I went to the head of paediatric neurologist in his clinic, introduced myself, told him I thought my son had CP and asked him to read the MRI report.  I was a woman on a mission.  The neurologist talked to me on the phone and explained the MRI while I was in the airport awaiting an international flight, a tremendous professional courtesy.  There was then a 2 year waiting list to get an "official" diagnosis and letter so thank goodness the ward clerk for my clinic and the neuro clinic are the same person and we finally got him in to see a paediatric neurologist.  That was my best day.  Dr. Appendino and his resident spent 2 hours with Cian (as opposed to the 15 minutes he was given before a diagnosis of global developmental delay by other doctors).  They figured out his major areas of difficulty, they figured out the things he liked to do, they asked us our expectations of the visit, they talked about Cian's strengths and they outlined in detail what likely happened to his brain and explained it so a doctor and a non-doctor could understand.  They cared about him.  They could see him as the amazing kid that he is.  They could see that there were things he excelled at - they believed us when we talked about all the physical things that he could do - his amazing low brace in a canoe, his flips on the trapeze, his amazing swimming ability and total domination at video games.  They explained that even though he's never had one he is at lifelong risk of seizures.  I tried to wrap my head around the future do's and don't's for him and Dr Appendino blessed me with a phrase I constantly remind myself of...

"Don't collapse his life."

I can't begin to tell you how much that day meant to our family.  I didn't know what to do so, of course, I baked my feelings - bienenstich is the hardest thing I know how to make and is the biggest labour of love so that is what Dr. Appendino and his staff got.  When medical care is done right it can truly change people's lives.

There have been challenges since then and surely more to come but we now have a better understanding of what is going on for our kid who had no way of telling us what was happening for him because he knew no other way.  I have been immensely blessed by women who have kids with far greater challenges than mine who have extended such kindness and support to me as I try to come to an understanding of what our future looks like as we walk with this gift of a kid.  I see my job in a new way as I live and love everyday the "worst possible outcome of obstetrics".  I am so blessed to have cared for incredible girls and young women with CP so that I have an idea of how wonderful Cian's future could be.

So I sit hear in my "gumboots of gratitude" waist deep in the mud of a midlife "crisis" I wasn't expecting and realizing that I am so thankful this year for greater understanding, for hope in the future, for truly caring doctors, for slow positive progression and for the tremendous gift of being Cian's mom.  Today as he went off to school he whispered to his sister to decorate the hall with balloons for my birthday, he turned to me, flashed that amazing smile and gave me a full-body hug.  "Happy Birthday" he said to me with such sincerity that it caught in my throat and brought tears to my eyes.  The beauty of knowing that it's hard for your kid to talk is that every word counts, nothing is wasted and that's not lost on me.  It is a truly happy birthday.

Dear Morgan

You are loved.

You came into our lives with big eyes and an open heart and we poured all the love into it we had been waiting to give you.

And you smiled.

You are part of our collective family that surrounds you with support, bear hugs and sloppy kisses.

You are loved.

One of my deepest desires in this life was to know you

To see you

To cuddle you and have you giggle

To see how you light up your parents' life

And how that light shines to the rest of us

The road before you may take you on twists and turns

It might take you to dark places and you may have wondered where your light has gone.

But it's there 

You might have to get down on your knees and blow on the coals for a while

Or flap a plate wildly

Or cheat a bit and use some paper to rekindle it

But it's always there inside of you. 

I held a candle for you today 

And I always will

So that you know you always have a safe place to come to

To help you know it's safe to spread your wings

That it's okay to try and fail and try again 

That you can question and wonder and dream.

But the truth is 

The light was inside you all along.

You are loved.

Peace and Love now and always,

Your very honoured Godmother, Auntie Amanda