I am so proud to host this beautiful post by my good friend Jane. I had the pleasure of staying with Jane and her family earlier in the year, and was totally entranced by Harry, who is an absolute star.
Her story illustrates that having a baby prematurely is often the start of a long, sometimes frightening, often frustrating journey. Here is their story.
My son Harry was born at 24 weeks and five days weighing
1lb11oz. He was a fighter from day one and although there were days when it was
touch and go, after four months in NICU he came home weighing just short of
7lbs. I was over the moon when he came home and immediately got stuck into
taking Harry to the normal baby groups and meeting other new parents. The only
differences then between Harry and other babies his age was that he was smaller
than them and that he was on oxygen. It sounds naïve now but it never crossed
my mind that he would have long term problems.
However, as time went by it became clear that Harry’s
development was significantly delayed and that he was falling behind other
babies his age. We saw various Paediatricians and Consultants and it became
clear that Harry’s early birth had not left him completely unscathed. In the past 18 months we have been through and
MRI scan and genetic testing to try to determine the cause of Harry’s global
developmental delay. The tests did not lead to a concrete diagnosis for Harry.
In some ways I see this as a good thing as it means Harry is not labelled and
there are no restrictions on what he may achieve. On the other hand, a
diagnosis would have made the future clear. Not having a diagnosis sometimes
feels like we are drowning in a swamp.
So, I have had to adjust to having a child with additional
needs. This article sums up well
how I feel about this. It is isolating having a child with special needs. There
comes a point when it becomes impractical to go to toddler groups as your child
does not fit into any of the normal categories and the questions become very
hard to answer sometimes. It is also hard watching my full term son meeting
milestones much earlier than his brother.
There are good things about having a child with additional
needs though. It does make it all the more special when Harry does meet
milestones. Harry didn’t walk until he was three but it was a very special
moment when he took his first steps. It was also truly amazing hearing him
utter his first words. After everything Harry went through to stay with us, it
has made me treasure him all the more. Having a premature baby and watching him
fight to survive taught me to not give up on things so easily. Having a child
with additional needs has taught me to be more patient. After all life is not a
race. I have learnt that it doesn’t matter how long it takes to get to your
destination, it’s enjoying the journey that counts.
Lovely post, Harry is obviously well loved and looked after, in the end that's all that matters x
ReplyDeleteVery true words about the journey that counts. My daughter was diagnosed with CP this year at 2, and although sometimes it feels hard having a diagnosis ity is sometimes a relief as I have a vague answer to awkward or nosey questions rather than "I don't know"! Our paeds are keen to stress that with or without diagnosises children can achieve all sorts with great treatment and parenting, which is comforting. Doesn't always help on those lonely days, or when you appear to become the local novelty act at toddler groups though! x
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