2016 has been another difficult year, perhaps the hardest so
far. Or maybe not, maybe it’s just the last few years are piling up on us…. Our
lives have changed so much in the last 2 years. But, on this New Years Eve I
want to try and remember the good things:
The Congenital Myotonic Dystrophy Fight Fund. The charity I
set up with 3 other families in the UK, and with the wonderful support of MDUK.
All to raise awareness of Dregans condition, and to raise funds for research.
Well, I think we can call that a success. Over £41,000 in just over 12 months!
Multiple newspaper reports, support from wonderful friends, old and new. And we
held a charity Ball in Blackpool, which not only helped us raise money, but
also gave us an opportunity to spend time with friends and family in a nice
environment, with good food and music. We are already planning the next one for
July 2017 in Blackpool (contact me for tickets, hehe). By the end of 2017 I
would be over the moon if we can hit £75,000! I am so so proud of how much we,
as a family, have put into this. Yes, it has taken a lot of work, and time, and
energy, but this is one thing that is only ever good. The money we raise WILL
help people. I know that research takes time, years and years, but the little
we are doing is going to help a lot. And, ignoring the money side of things, I
really hope we are helping other families dealing with the same issues that we
are. It definitely helps me deal with things.
Friends. We have spent time with new friends at conferences,
and also at ‘Families in Action’ meet ups. We have met some amazing children
with CDM and also made some very good friends. Its not been a great year for
socialising, unfortunately things always seem to happen when we make plans, everything
gets rushed and its difficult to enjoy the moment, but hopefully in 2017 we
will be able to spend more time with our friends and family. I know we have at
least one big birthday coming up!
Dregan. Has had a difficult year. Having his feeding button
fitted has been a life changer for him, but he has amazed us all at how well he
has adapted. He is currently still in bed (at 1pm), but when he gets up and
about he should have enough energy for the day. It has made a huge difference
to his health, and we are hopeful that 2017 will see hospital admissions only
on a routine basis, and no illnesses or emergencies. 2017 is going to be a year
of building Dregans independence, we are hoping to employ a personal assistant
to help him with this, and also, HE TURNS 18! Watch this space for plan on
that! His access to the Childrens Hospice has been a wonderful thing for him,
and also, starting college. Difficult for us sorting all his healthcare needs,
but he doesn’t see that side of things, and loves it. He has made at least 2
new friends via The FIA group, who have the same condition as himself, and even
though we live so far apart, when they get together it is lovely to see him so
comfortable. He is deteriorating, there is no doubt about that, but we are rolling
with the punches. I’m hopeful the punches will stop for a little while though…
Xander. Has coped extremely well with the changes, especially
since he has his own difficulties. He has matured well, although is struggling
a little with some aspects of work. I am going to try and spend a bit more time
supporting him with this in the upcoming year. Also, spend more time with
Xander doing things Xander likes. He has done a lot for the charity this year,
been on an outdoors trip with school, worked well at school, gaining top grades.
Joined Musical Theatre Drama class, Duke of Edinburgh and also continues with
his Taiko – performing in multiple shows. He is simply wonderful with his baby
brother, although needs to work a bit on how he interacts with Dregan (and me) sometimes.
River. Continues to amaze us every day. He is learning so
much, developing wonderfully, and keeps our house smiling with practically
everything he does. He has been a gift!
Reading all that we can see how far things have come, but it
hasn’t been an easy ride. We seem to have had constant illnesses and meetings,
and it has been hard. Every week in the calendar shows appointments 3/4/5 times
a week. It has been non-stop and we need to try and be firmer on scheduling. I’m
not sure how to do it, but we can’t continue like this. In 2017 we will make a
change. More time for family and making memories – good ones!
Its been a sad year for losses, both from lifelong icons
such as David Bowie, Alan Rickman and George Michael, but also for closer to
home. No sadness is 2017 please.
I have a lot of New Year resolutions, but the gist of it is –
A HAPPY HEALTHY 2017!
I wish this for all of you too.
x
Me and Dregan before we went to the Theatre in London to see Aladdin, Aug 2016
My baby boy is all grown up!
