Archives for the month of: January, 2012

In just about half an hour Grace will officially be six! (When I originally wrote this post.)  I’m looking forward to six – in year six Grace will go to kindergarten, dance, ride horses, work on her walking, get a wheelchair, work on eating, probably undergo a major epilepsy therapy overhaul, and I’m sure many other things.

As I look back year 5 went fast – with small gains and losses happening frequently – and major things coming along every now and then just to keep things interesting.  This was the year I really felt like Grace was integrated at school – where she’s had the opportunity to interact with kids who have different skills than she does -and I think she’s blossomed from that.  Five has been the year where Grace has been more active..she walks with us in the grocery store and at Target,  she’s trotted on a horse- rides backwards, sideways, and on her knees, she’s shown excitement about dancing.  She’s lost three teeth and the tooth fairy came each time.  She’s shown an interest in eating this year….actually wanting to chew on something besides her own hands or a bib!  This was the year she got quick enough with her communication switch work – that we will get to use them with her in a more meaningful way.  This was the year she got to go to the Civic Center to see plays on a regular basis.  This was the year when I felt so solid that we had an excellent team Grace in place.  The doctors we needed, therapists who were passionate, a realtor, Su to help her with horseback riding, Hannah to cut her hair, Jacque, Chloe, and Jill to dance with – Monika and Ann to inspire them to do so, my parents who drive 2 1/2 hours to help out for 1/2 a day, Julie and Jessica to fill in the gaps and make our lives easier, the Stone family to appreciate us, Aunt Heather to coach us on IEP speak, the women at church who are with Grace in the nursery that allow us to refuel and Grace to experience the love of others, teachers and assistants she could charm but will not let her escape work, and a new house to live in where she would be free to live as easily as possible.

I look forward to more………

Joy

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This is Grace the day after Christmas – totally exhausted.  We all are to be honest.  It was four weeks ago today that Graham joined our family.  I can’t say that things have been particularly smooth – but not horrible either.  I’ve been reading about kids with siblings who have special needs – that’s how I prepare for things- I read books.  Reading a book did not prepare me for the first time I was alone with the two of them – and Graham was all out crying and Grace was all out seizing,  and to help them both to the extent I wanted was impossible – I could only keep Grace safe, hold Graham and talk to them both – but not do what I would have done for each of them separately –  for the feeling of gratitude and guilt  I felt when my sister-in -law pulled Grace up to the table when we were eating Christmas dinner –  I’d left her outside the circle in my worry that Graham would wake up screaming of hunger at the wrong time.  Grace had to go to the ER to get checked out by a doc – I couldn’t go with her – I had to stay home with Graham – we divided and conquered – but it didn’t feel great.  For the way my heart sank after Kevin said – “we will only have one set of grandkids – there will be no cousins to play with someday when we have Christmas”.  Grace’s epilepsy has such long and broad reaching consequences – its not just me and Kevin our families and friends anymore – its Graham’s too – his friends, his wife, his children- and its a choice we made for him, for them – us.  Knowing it when he was abstract was one thing – knowing it now that I know him is another.

I do think it will get easier in some ways – harder in others.  Our family is so much like “normal” families – and so much not like them.  We’ll have to find our own way – as we have been…but on a different level.  Graham will have to suffer first child and only child mistakes without the benefit of an older sibling leading the way, breaking us in, or being the other person in the house you can roll your eyes at when your parents are doing whatever it is they do that drives you nuts – and without the benefit of having your parents all to yourself.

I watched my nephews and nieces at Christmas.  My nephew didn’t want to sit at Grace’s princess table – another dropped a plate, because all we have is adult plates…Grace hasn’t needed anything plastic or lightweight.  My nieces although younger than Grace have already outgrown some of her toys.  They all talk – and make requests.  They know things about Star Wars, and ask questions, and run.

Meeting both of their needs seems daunting.  I find myself asking…are we strong enough?   And when I do there is a song in my head (Strong Enough) that comes on to say…”I don’t have to be strong enough” – I just have to be real, honest, smart, brave, love them – and have faith.

Joy