Broken hearts

I’ve wanted to write a post about Tilly’s open heart surgery for a while now – mainly to remind me, and those close to us, how far Tilly has come since the time she was a poorly little baby and in heart failure.

My memories of that time are pretty vague.  It was 7 years ago – in fact, her ‘heart day’ is coming up as she had her surgery on Tuesday 29 September 2009.  But even though it was the scariest period of my life, I just can’t remember how I felt during that time.

I’ve found emails I sent to my husband, or to friends in the time leading up to her going into hospital which I hoped would trigger some memories of how I felt.  But even those are actually quite devoid of emotion – matter of fact and explanatory but with the absence of the feeling of fear and dread I would have expected from a new mother whose 3 month old baby girl was in heart failure and requiring life-saving open heart surgery.

I think I was in a bubble – perhaps it was the hormones of being a new mum, and one who was faced with many fears from the moment her daughter was born, but I wasn’t aware of the reality of the situation we were about to face.  I always said that it was because I knew she needed the surgery to fix her, that without it she would die.  But if I think back to how I was at that time, I don’t actually believe that the prospect of us losing our daughter had registered with me.

In the main, I put on a brave face in the hospital – I was the parent who carried her into the little room for her anaesthetic and watched her go to sleep before 9 hours of surgery because my husband  broke down on the walk to the operating theatre and couldn’t do it.  I was the one who strode into ICU after her surgery, didn’t shed a tear when I saw her lying there hooked up to what felt like hundreds of machines that made different beeps every few seconds and asked the nurses a whole of questions.  In fact, other than the few tears I do remember shedding when I walked away from the operating theatre, I don’t remember crying.  I don’t remember how I felt.

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My coping mechanism was to put up a very thick wall to protect myself from the emotions that would have been thrown at me during such a traumatic and scary time.  That wall didn’t get ripped down until a good couple of years ago and it’s only now I can sit and look at these photos of my little girl and feel a little of how I was probably feeling then but was too scared to express to anyone, including myself.

I feel an immense amount of sadness that my daughter had such a difficult start to her life; that in those early months, she spent so much time at hospital getting test after test; and that her little heart was struggling to keep her alive.  I feel desperate to hold and protect the little baby in the photos and make everything OK for her, to take the pain and suffering away.

I feel the fear of walking into that operating theatre and laying my crying baby girl on the bed. Of watching her being put to sleep by the anaesthetist, knowing that her heart would be stopped and her rib cage opened up so that the surgeon could get to work on a meticulous 9 hour operation to mend her broken heart.

I feel the desperation of walking aimlessly through Kelvingrove Park and Kelvingrove Museum with my husband, unable to find a distraction for the anxiety and agitation caused by the helplessness we felt during those 9 hours.  I feel the eery silence of our room in the parent accommodation at Ronald McDonald House during the final hour of waiting for news that the surgery was over.

I feel the urgency of answering the phone when it rang, the anticipation of listening to the nurse give her quick update, and the immense relief on hearing the news that the surgery was successful and she was stable in ICU.

I feel the nervousness of walking into the ICU and the uneasiness and heartache of seeing all of the severely ill children in the unit, some who had been there for months and some who were not expected to leave.

I feel the shock of seeing my daughter lying there on a life support machine  with cables and lines protruding from all different parts of her body.  I feel thankful and incredibly lucky that such a wonderful surgeon and team of doctors and nurses saved my child.

I feel love, sadness and happiness all at the same time.

The story of Tilly’s recovery from her surgery has been told before – in short, she lived up to the meaning of her name Tilly, Mighty Battler, to be moved from ICU to high dependency after less than 48 hours and to be sent home after another week.

Her scar, a little heart defect that hopefully won’t require such major surgery in the future, and these photos are the only remnants of that time of our lives.  And, hopefully, when I try to remember how I felt this post will tick that box.

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My favourite picture of Tilly just after she got home from life-saving open heart surgery.
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Inclusion

We’re now into week 3 of a new year at Primary School – and Primary 2 is suiting Tilly well so far.  She’s adapting to a new classroom, new pupils and 2 new teachers.  Its obvious from how happy she is going into school that she’s pleased to be back, as am I!!

This year, the school are planning to challenge her more, push her to try new things (using a paint brush for longer than a quick dab, for example) and they will create a bespoke development plan with individual targets for her to aim to meet.  I’m fully supportive and keen to take a role in helping them create her development plan – we don’t know how long mainstream school is going to suit her, but while it does, and while she continues to be happy, we’re going to push her as much as we can.  She’s made big strides in many areas of her development over the last year so we all feel she’s ready to continue down that path.

One of the changes for this year is to get her involved in after school activities.  It’s something I’ve avoided in the last year for several reasons – firstly was her stamina.  The wee thing collapsed in her bed for a chill most afternoons in the first few months of Primary 1 so she couldn’t have coped with an extra activity after school.  The second reason was accessibility.  Despite asking about after school activities, I never felt it was met with an open mind from the activities co-ordinator, or other class instructors.   And thirdly was fear.  Sadly, I felt scared and nervous (and still do to an extent) to take Tilly to an activity/class/party/event where I knew that her inability to follow instructions or to communicate, her sensory issues (the lights she could look at, the speakers she could hug, the blinds on the windows she could rattle etc), in fact all of her ‘differences’ , would be glaringly obvious to everyone and be met with stares and whispering.  I worried she’d get in the way.

But her stamina has now improved and most days when she gets home from school, she has a bath (she demands it!!) then is full of beans either playing in her bedroom or in the garden.  There has also been a shift in the instructors’ way of thinking, as a couple of classes have been suggested that we hope will interest Tilly.  And I also think its about time we tried her in these classes – why should she miss out?

Her first class, Hip Hop, was tonight and she loved it!  Admittedly she didn’t do any of the dance moves, she tried to climb onto the dance teacher’s knees whenever he was on the floor (she loves a cuddle), and she dragged him to the iPod whenever there was a pause in his music.  But her face was beaming throughout and she loved watching the other children almost as much as she loved watching herself in the wall of mirrors!

As they are with school, Tilly’s learning objectives in the dance class aren’t the same as they are for her class mates.  She’s not there to learn the dance moves and to do everything the teacher asks.  She’s there to have fun, enjoy the music and movement (in her own way), and to watch and learn from her peers.  She may not show it yet but she’s observing all the movements the other kids are making and who knows, one day she might do a jump or side step.  But in the meantime, she’s being included in an activity that her neuro-typical classmates have automatic access to.

Just because she has a learning disability, I don’t think it’s fair that she misses out on an activity she clearly enjoys.  Inclusion is such an important part of her development and I hope that other classes/instructors/teachers will also open up whats on offer to more kids with disabilities.  They may not think those kids are learning but trust me, in their own way, they are.  And, at the end of the day, if that child is happy and having fun, surely thats the most important thing?

Next up this week is Cheerleading.  More music, dancing and….poms poms.  A dream come true for a girl with a strong sensory passion for tactile toys!!