A few months ago I recieved a beautiful email from Matt's wife Laura. It was the sort of email that makes me realise that I am not writing into a vacuum and that DSU is achieving what I set out to do, to support new parents, let them see that life with Down's syndrome will go on pretty much the same as it did before, only better, despite the health setbacks. I never share emails or comments that are sent privately, but Matt has penned this piece especially for you dear reader. Meet the Horsnells:
I’m new to
this…
October is Down’s
Syndrome Awareness Month in the US, and many people, some of whom I’ve got to
know remotely over the past 8 or so months, have been penning excellent blogs
focussing on what DS is, and what life is like for children and adults with DS,
and for their friends and families.
One of these people is
Hayley Goleniowska. I’ve not yet had the pleasure of meeting Hayley and her
family, and the chances are that I would not have even heard of Hayley but I
have. I have for two reasons.
The first is because my
daughter, Ada, who was born in February this year, was diagnosed postnatally with
Down’s Syndrome. Like most couples expecting their second child we were
excited, fairly relaxed, and slightly anxious about the onset of life with two
children under two. I was expecting a little less sleep, possibly some jealousy
from our eldest having to share her mum and dad for the first time, and another
couple of months of intense nappy changing.
What I wasn’t expecting
was that our baby would be born with DS. Not that it is relevant, but since
everyone asks (and please do stop asking parents of new babies) we did have the
run-of-the-mill screening, we were considered low risk, and I should imagine
like most people we didn’t think anymore of it.
I didn’t even think
about it when our baby was born. The birth was incredibly smooth, labour seemed
easy enough (from where I was sat!), and Ada was delivered into the world with
her amniotic sack intact, something the midwife instantly told us was good
luck.
Looking back now, I’m
not sure if I started to suspect that something was wrong during the night or during
the next day as we were waiting for the all clear to leave the hospital. Her
hearing was fine and she’d had some basic tests. Then there was some scuffling
by the midwives that they were waiting for someone to listen to Ada’s heart
again, as there was a suspicion of a murmur.
What followed,
predictable though it is as you read this, came as such a shock to us.
We were told that our
daughter in all likelihood had Down’s Syndrome.
I have never and
probably will never feel again the gut wrenching, heart aching flush that took
over me in that moment. I could probably tell you exactly what all the doctors,
nurses and midwives were wearing, who was standing where and what was still
left to pack into our hospital bag such is clarity of the moment when we were
told. I won’t dwell on it here, suffice it to say that we were told it
straight. It even made some sense when they said it, after all our baby had
seemed a little weaker this time, she’d not latched on very well, there was
some concern that her eyes were a little puffy and she became incredibly dry
during the night.
Looking back, I’m not
sure if it was my ignorance to the facts, or that I was suppressing something
that I didn’t want to accept. Either way I have never had the earth pulled from
under me so quickly as I did that day.
In the hours, days and
weeks that followed I did my best to try and understand what Down’s Syndrome
really is and what the realities for my daughter were. We are incredibly lucky
to have a loving family who really rallied around. My sister and her husband in
particular had, to my on-going pride, been very involved with Scope and Mencap
for some years and so instantly knew in which direction to point us. We had
soon located the very aptly named, Cambridge Baby and Children with Down
Syndrome Support Group, and I’d received a second hand copy of Andrew
Merriman’s A Minor Adjustment through the post, sadly it is out of print. [A Minor Adjustment has just been released on Kindle - H]
The other source of
information we had during the early weeks were blogs, which leads me on to the
second and true reason that we have heard of Hayley. Hayley is such a strong
advocate for Down’s Syndrome and it was probably through a google search of
“Down’s Syndrome Support Blog” that we found DownsSideUp.
Although I had been
able to read the literature the hospital had given us, and had managed to read
most of the Down Syndrome Association's website for new parents, it was
Hayley's blog which instantly struck a chord with my wife Laura.
Laura had been unable
to read anything about DS in hospital until I read her Hayley’s posts. Hayley,
like us has two daughters, seemed genuinely nice and was actually getting on
with living. I read many of her posts to Laura and we cried out loud together,
partly through realisation that we were not alone, not unique, and partly
because her blog offered hope, and happy photos and stories as well as facts.
Like Hayley and many,
many parents we had our initial problems. Ada had very dry cracked skin, for
which we were prescribed pure sunflower oil, olive oil brought her out in a rash,
yes we experimented! We had 5 weeks of feeding through a nasal-gastric tube,
which was tricky at the best of times, and incredibly, arm achingly slow, but
Ada was feisty and really didn’t want the tube in. So, despite being desperate
to get out of the hospital after our 8 day marathon just a few days earlier, we
started then what has become regular trips to Addenbrooke’s Hospital.
This an extract from an
email I sent to my family at the time that sums it up well:
“Ada discharged from
neonatal care, as all going well, and had put on another 100g on Wednesday
(@25gms/day) so we’re up to 7.5lbs. Now responsibility of health visitor and
early years support team.
Lots of appointments
arranged... genetic counselling, foetal
medicine counselling, counselling, physiotherapy, speech therapy,
bonding and attachment therapy, portage, ophthalmologist, heart scan, hip scan,
repeat thyroid, baby massage, child development team and last but not least the
standard six week check next week."
Fortunately things have
calmed down since then and Ada is now nearly 9 months old.
She loves going to Yoga
with Mummy, and she started swimming lessons with me a month ago. She is happy
and healthy and is the apple of her sister’s eye, who quite often states with
pride “You is the best friend for me ever!”. Ada was fully breast fed for 6
months and is now enjoying solids too. She is sitting and just this week
started to clap.
We’ve been on a family
holiday and, albeit small-scale to the Norfolk Broad’s this year, we’re
determined to tackle flying abroad next year if we can. We’ve been camping at a
music festival and we’re just about to move house.
I mention all this,
because we nearly lost sight of it all 9 months ago. It just didn’t seem
possible. How very wrong we were.
Matt Horsnell - Ada's Daddy
@maver
on twitter
