So back into the horror of the unknown we go. It’s been a while, we had a lovely reprieve.
You see once you get a major diagnosis for your child, it’s not always the end of the rollercoaster ride.
As we’ve found there are plenty more corkscrews and loops to come.
After a lengthy initial diagnosis journey of 21 months, we received a number of answers including a chromosome disorder and the big one – quadriplegic dystonic cerebral palsy.
We breathed a sigh of relief after a misdiagnosis of a life limiting disease meant we got to keep our beautiful child.
We readily embraced the alternative of a long life with the many difficulties ahead.
We would get through it all together as a family.
We’ve accepted new twists and turns into our “normal lives such as uncontrolled epilepsy and a gastronomy over the last year and with that the multitude of hospital stays and visits.
We’ve introduced new medicines to try and control seizures and Dystonia, medical equipment such as a SATs machine, suction machine and Oxygen canisters.
It has been a rollercoaster journey filled with adrenaline fuelled periods of no sleep, euphoric highs when you see your precious child recover.
We were in the swing of things. We had some order to our chaos.
A follow up neurology appointment has thrown that all in the air and the familiar fears and anxiety are back. Back with a vengeance because we dared to become, even for a short while, complacent.
A new array of referrals and tests ahead of us. New diagnoses that will potentially be unearthed, new teams of medical professionals overseeing our daughters care. New hospitals and new routines.
The unknown is a scary place to be.
So, if you have loved ones in a similar position, be there to lend an ear, to show them support and love.
It’s the hardest kind of existence, not knowing what the future holds for your medically complex child.
Support networks are so very important, parenting a child with disabilities is often isolating and very lonely.
Reaching out makes the difference between a day filled with heartache and unbearable thoughts and a day brightened by the kindness of others.
A day that had a ray of sunshine in the darkness.