I recently went to a genetics appointment for my 7-month-old little boy. When
he was having his new born check, the doctor started asking me lots of
questions which I assumed was the normal thing they did - apparently not!
To cut a long story short they weren't massively happy with some of my
symptoms not matching my current diagnosis and asked if Samuel could be
referred to the genetics team for him but also for myself and obviously, I said
This appointment was one of the best I'd ever experienced in my life. Lots of
things were discussed and I'm actually now getting tested for a couple of
different things which is incredible, I'd finally been seen and heard and it
means that in the future I won't be the crazy mother trying to force a health
problem on her son, as we've all agreed that although he may be too young
for a diagnosis, he's not too young for us to be proactive with his care as he
is already displaying symptoms.
The main take away from the appointment though was when we got chatting
about how I volunteer for the HMSA. The doctor was so pleased and smiled
and nodded as I told him how we were more like a family and that we could
bounce ideas, worries and stresses off each other and we all instantly knew
what we were talking about and how we were feeling. He said 'your team will
be more valuable than medicine' and it's completely true! They've given me
the confidence to trust my gut when other parents of 'typical' children have
given me doubts and when sometimes all I needed was to vent or just be
heard, they are always there. They are the support system that is so
important when the medical profession don't really know what to do with you
and a support system that really understands and is there for you, that's
worth more than its weight in gold.
So yes, it's amazing what we as a family have gotten from this appointment,
but what's even better is that my HMSA family are and will be the ones to
keep me going as I navigate these next steps over the next few months and
as a bendy mother, I will continue to raise a potentially bendy baby and for
the first time in my life even though some of us are a couple hundred miles
apart, I don't feel completely alone.