This isn’t’ the life I expected. This isn’t the life I had planned. When I had my two boys just 13 months apart,
I had visions of them growing up to be close friends, playing football in the garden,
having rough and tumble fights. I didn’t
expect things to turn out like this.
I have always read posts by special needs
parents saying ‘I wouldn’t change them
for the world’ with a degree of scepticism.
Really? You wouldn’t change them/your situation? I often thought it was something people
claimed but never really felt. I’m not
quite there yet but I am starting to see the light at the end of this long dark
tunnel, I’ve been dragging myself through for the past two years. I’d take away H’s epilepsy in a heartbeat,
don’t get me wrong. But I’m starting to
count my blessings a bit more. And what’s
enlightening is I do feel happy and overjoyed and blessed and I’m not just
saying it because I think it’s what I
should say or what people want to hear.
This was the post from @tricy_customer that
first got me thinking. And while it
played on my mind all week, I attended an appointment with a consultant of H’s
who said;
“Well, none of us ever expected him to make it this far!”
Sounds a bit harsh I know. But rather than reduce me to tears, I felt immensely
proud of all that H has achieved and against the odds is still here, still
smiling and still making progress. He’s
not and never will be your typical child.
But he’ll be two in a couple of weeks and his Consultants didn’t expect
that, least of all that he’d be so strong and healthy. He gets ill of course; sometimes seriously
so, and yes, his epilepsy is still life threatening, but that comment opened my
eyes to a truth: I have two beautiful, wonderful boys and I am immensely proud
of them both. So proud I could burst.
I am very very lucky. It’s not so long ago I was told I would never
have any children. Would I rather be
here with Little H and all the challenges he presents with us, or back there
with all the invasive tests and treatments, praying each month that it was our
turn at last? Do I really need to answer
that?
I watched some of the other Mums and babies
at Molly Music this week and I realised that they just didn’t appreciate what
they had. Sorry, that sounds quite
scathing and I don’t mean it quite like that.
It’s just I sat there delighted as Little H smiled and felt such joy and
pride that he had responded to the music. Genuine heartfelt joy. You can’t truly appreciate something so
simple if you’ve never realised that it is in fact a huge accomplishment. With Cheeky, I looked towards the next
milestone, wondering when he’d make the move from pulling himself up on the
seat to letting go and walking. Did I
ever truly appreciate the fact that he had managed to pull himself up to
standing in the first place? I took such
achievements for granted. But now, a
smile or a head turned in the direction of a sound, all of these things are
huge achievements and I feel blessed to witness them, I feel proud when H achieves
them. I feel blessed that I really can
and do take pride in the smallest of things.
I feel lucky.
It is a wonderful feeling. I feel released almost from the burden I had
been carrying. It’s not to say I don’t worry about the future or that I won’t feel
sad about the things H won’t be able to do but I feel genuine pleasure in
things he can do. I feel that perhaps
now, I am starting to appreciate my little boy for the wonderful, beautiful amazing,
strong, smiley, happy delightful little child that he is. Finally I can see past the challenges and the
diagnoses and the medical complexities and just appreciate what I have.
Absolutely! They are so wonderful.
ReplyDeleteI know exactly what you mean.
ReplyDeleteThanks Sarah Jane and Nanny Anne. xxx
ReplyDelete