When will they walk?
When will they talk…
Two of the biggest questions new parents ask themselves.
But when you have a child with a diagnosis the questions are tinged with fear and unease. It is a question I asked myself a lot. To the point of desperation and anxiety.
I was compelled to write this after seeing many parents in the 18q- community ask and almost look for hope or a steer on the future development of their children.
I remember the early days when G was only a few months old. She could hardly lift her head as she had poor muscle strength. She could not roll over and tummy time was petrifying. She would scream, cry and not be able to move her body at all. I would be left feeling guilty through enforcing this ‘tourture’ on her.
The non-tummy time stages, the non-sitting up by herself stages, non-crawling and non-talking stages lasted an eternity.
I did everything and anything to help her along. I would take her to every play group to see if the different environments would help.
I attended baby massage, baby music and dance…anything I could fit in around the hundreds (it felt like) of hospital appointments. But she was falling behind…day by day. I was starting to see and feel 18q-…
Milestones were no longer a benchmark for ‘normal’ development instead it felt like an accumulation of broken dreams the more she missed them.
Other children, younger than her, were sitting up, rolling, pulling to stand, babbling “dada” all the while she looked on oblivious to the turmoil I was feeling. I constantly asked myself if and when she would be able to do any of those things, as it all looked so bleak.
She had more diagnosis’ than milestones met!
As the time went on G, started seeing a private physio, then NHS physio and eventually very small advancements started being made.
Slowly and steadily she began to get a little stronger…play slightly differently…she started to move a bit more…then she was sitting up…then moving her left side a bit more…then pulling to stand…
Months went by and we would stay at the same milestone…again fear gripped me…would she be able to walk…she was now a year and a half…she could sit unaided but wasn’t crawling…then by Christmas, 3 months before her 2nd birthday she crawled…but decided that she much preferred to bum shuffle instead, so this was her alternative mode of transport!
I was so happy she was moving, it was slow, but it was progress.
We continued with physio, sometimes we had it twice a week.
We went swimming…we went Tumble tots…I did as much as I could physically push into a week for her…yet by the following Christmas she still wasn’t walking.
Again the anxiety was thick…she was getting bigger and heavier.
What if she has to be in a wheelchair?… sadness, fear and helplessness were overwhelming.
My frustration was immense. I wanted to take away all this extra work she had to do.
It wasn’t fair, why did she have to work so hard to achieve something that came so easily to others?
I resented able-bodied children. I got tearful at seeing a child crawl effortlessly from one side of the room to the next. I angered internally at other parents who complained (gloated) about how hard (easy) it was because little Jimmy keeps causing mischief running around.
Just before her 3rd birthday, G began walking. Not a graceful, steady set of movements. Clumpy, trippy, nervous kind of walking. Walking with wide legs (wide gait). She could only manage short distances. She tired easily.
2 or 3 steps and she was done…she much preferred bum shuffling. So the next year entailed encouraging her to walk for longer without her pram or without her walking aide. This again was slow but it was progress.
G is now 5 years old, nearly 6 and as I write this (In the dark on the floor) we have not long got back from private physio. She still needs it but she is walking for longer, running, jumping, climbing and dancing!
I am conscious that I do not want to present a picture that all children with 18q- will follow a similar journey but I wanted to show our journey and how I can reflect on the past few years and breath a sigh of relief that I didn’t let those dark days totally consume me and stop me from believing that things will change for the better.