I wanted to do a post about my childhood, but I didn't know how to go about it, since I can't remember my very early years and a lot of it was very confusing to me. My boyfriend suggested that I do an interview with my Mum about her experience of being a parent of a child, and young adult with Ehlers-Danlos Syndrome.
When did you first notice there might be something wrong
with me?
When you were first
born. You were a very sicky baby. I had to have you propped up all the time
especially after a feed to stop you from bringing it back up. Had you in a bib
all the time because you were so sick.
Did you think it was anything more at the time?
At the time I just
thought you were just a sickly baby as I was told that by the health visitors.
They said it was common in young babies. When you started on solids it did ease
a bit.
How was I different to other children?
As a toddler you
seemed to be a "fussy eater" took a lot of persuading and distracting
to get you to eat.
Was I picky or reluctant to eat?
Both really. We had
to try you with lots of different foods throughout the day to get you to eat
something. Most days you didn't eat enough so we carried on giving you bottles
of milk to try to ensure you got enough nutrition in the day. I remember you
sitting in your high chair distracting you with toys spooning food in while you
were occupied.
Did I have any other health problems as a child, other than
the sickness and food issues?
When you were 2 I
was helping you up off the floor and your elbow popped out. We took you to A
& E and you had dislocated your elbow. Also as a child you didn't like
being left anywhere. For instance nursery took a long time for you to settle I
had to stay with you for a month or so. You seemed anxious. When I look back I
guess if you weren’t feeling well you didn't want to be left. Also when you
were born you had to have your feet strapped up because they weren't in the
right position.
Do you think my schools handled me well and do you think it
would have been handled better had I had a diagnosis sooner?
Yes absolutely it
would have been handled differently had you been diagnosed. That could also be
said of the way I handled things too had I known. The doctors kept saying it
was down to anxiety and I had to be firm with you. Very difficult as a parent.
You just trust the doctors at the time and take their advice. Primary school
were very firm with you saying you had to stay in class when you said you
weren’t well. Secondary school handled it better. They asked you what they
could do to help. We still didn't have a diagnosis at this stage though and in
the end you became too ill to go to school.
How was I dealt with as a young child when you took me to
doctors with the problems that I had?
Difficult question
because at the time I always thought they knew best so I took their advice.
Looking back I think they were as clueless as we were.
Do you think they did enough?
No, they could have
done so much more. Having being discharged from Blackpool Victoria when they
said you had ME and you would get better and "grow out of it". I
dread to think where we would be today if we had just left it there and not
pushed further for answers and got referrals elsewhere. I have to say though, Wythenshawe hospital have been very supportive, in particular, Professor Whorewell and in recent ears Dr Jones and his team. They have no always had the answers but they have been very caring and supportive. I don't think we would be where we are today without them.
Do you think doctors need to be better educated on Ehlers
Danlos Syndrome?
Most definitely
without a doubt. Even now with us and for you there is no local help or
support. We still have very limited support. It is very difficult to know who
to turn to for the best.
How did you feel when they diagnosed me with Ehlers Danlos Syndrome?
Were you sad because I had something incurable, or were you just relieved to
get a diagnosis?
That day when we
came out from the consultant when they diagnosed you is very clear in my mind.
I burst into tears with being overwhelmed with it. Finally after all the years
of battling for answers we finally had answers but it was also very scary as we
didn't know what it really meant or what the way forward was. I think it was a
relief to think that finally someone cared and believed you and knew what was
wrong. I remember asking him if he was sure as I didn't quite believe it myself
that we had a diagnosis. In my mind now it still doesn't feel like its
incurable we still hope that someday soon they will find a cure. But at least
for now it’s more manageable than it’s ever been and your quality of life is
better than it has been. Every day I look forward to that phone call to hear
the excitement in your voice when you tell me about your good days and what fun
you have had achieving something new that we thought a few years ago might not
happen. These are everyday normal events for parents with healthy children but
for us as a family every good day is treasured and another milestone. But at
the same time I dread the phone call when it’s a "bad day". You’re
feeling too poorly to do anything. Or another issue like right now where your
feeding tube is broken and we are in yet another battle with the hospitals
trying to get it fixed.... a month we have been told! How crazy is that for
Hanna relies on the feeding tube every day!
What was the hardest part about having a sick child?
Seing your child
suffer and wasting away and feeling helpless to make you better.
Did you feel different to other parents because your child
was different?
Yes so much so. It
was heart breaking seeing other children doing the day to day things that
children do but you couldn't do those things.
What sort of things?
Going to school,
having friends, eating normally, playing out and having fun, smiling, the list
is endless. One memory sticks strongly in my mind – end of school proms. You
crawled to the front door to wave your friends off in the limousine that was
taking them to the proms, too ill and weak to join them. Such a sad day.
What was it like, when I was a teenager and I was bedbound
and in hospital all the time?
So very, very sad, I
just can't put into words how I felt. People used to say to me regularly how do
you cope? You just have to. When I look back I don't know how I did. You just
hope that the next day is going to be better than the last.
When I was very poorly as a teenager did you believe I would
get ‘better’ or did you think I would always be disabled and bedbound?
I 100% thought you
would get better. You have to believe that.
Were you worried when I started college after I had been
away from normality for so long?
Yes that was a huge
worry. I watched the clock each day waiting till it was home time to find out
if you had been ok that day. Some days I thought you had gone back too soon
when you had a lapse. But I am pleased to say now that you proved me wrong and
didn't give up.
Do you think you were more of a protective parent because I
was ill?
That’s a massive
yes, you have to be and that feeling doesn't go away. I still feel like that
now even though you have left home and moved away. I know I do your head in
with my texting and phone calls and looking at Facebook to find out how you
are. My first thoughts when I wake up are ‘I wonder what sort of a night you
have had’ and ‘are you going to wake up on a "good day” today’ and ‘are
you getting enough nutrition throughout the day’. Had you been healthy things would
have been different definitely.
How did you find it when I left for University?
Very difficult. I
still do. It’s hard to let go when you have looked after your sick child for so
long and they have been so dependent on you to look after them. Suddenly they
have to look after themselves. It’s a constant worry. I have had to drive over
a few times because you have been so poorly and once was in the middle of the
night.
What are your hopes for me for the future?
Wow so many - the
main one is that they find a cure and you make a complete recovery. To achieve
your dreams, to complete your education and achieve the career you want and to
be happy.
You’re quite a feisty Mum, some doctors have told me that you’re a bit scary. You’ve told a few of them off – any tips for other Mums or sick people who might be battling?
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