Today my heart burst with adoration, love and pride for my little Amy-Rose.
You see some days are pretty dark.
When the reflux is bad, the tantrums are extreme, my fatigue is debilitating, the phone calls/admin/appointments, adaptation worries, fear of seizures, endless tube feeds and mishaps with the feeding pump, etc are endless.
There are days there are so many obstacles in sight that you count down the minutes until bedtime (and even then you are up every 4 hours to change the feed in the feeding pump over! Who needs sleep anyway)
This morning we attended physio like we do every Friday morning.
Usually she screams and cries and has to be taken to a room away from the other children participating in group physio – we very rarely get any actual physio done.
There are times that I fight back the tears on the walk home thinking about how hard it is.
This week we tried a different technique.
We got there 30 minutes earlier and spent time playing in the sensory room with various toys I had brought from home.
It was still hard work but I was very pleased.
As a reward for working so hard I took her to the park.
Going on the swing in her Firefly GoTo seat is usually guaranteed smiles.
Sadly today it was far too warm out…the brightness makes her eyes stream and makes her thrash around.
So I decided to buy a paddling pool and see how it goes.
Well, it took me about 40 trips to the sink with the bucket, and a good 15 minutes inflating the pool, but it was so worth it.
She floated around with her neck ring on so happy and content that she fell asleep.
I was so pleased at how relaxing it was for her that I could have cried.
I just took hundreds of photographs instead.
I got in with her and floated her around and she looked into my eyes and did the biggest smile.
I get emotional even writing about it.
There was no feeding pump, no tubes, no syringes, no velcro straps, no 5 point harnesses, no prescription shoes, no postural support wedges, nothing clinical/medical looking in sight.
This is us being a family.
This is us doing what we should be doing…for us this is a weird kind of normal!
None of that with the added bonus that I did not feel one ounce of guilt…I wasn’t avoiding therapy…I was relaxing her stiff muscles AND making smiles happen!
Inflatable, less than £10, chuck it on the floor and go magic.
(And do not be that person who mentions that we did need a neck ring… that was from ebay so therefore counts as non clinical!)
Here are just a few of ours from the last month.
If you are in a similar situation to us then I’d really love it if you could sit and take stock of how far you have actually all come lately.
Make a list perhaps.
This time last year I wouldn’t believe you if you said my daughter would be able to hold that posture by herself.
Amy has severe quadriplegic cerebral palsy and a strong extension reflex that forces her to bring her shoulders back tightly.
For us this is huge.
Forget people saying “will she ever walk/sit/play with toys”…my little girl has discovered her own hands and to me this is gigantic.
Every time she does it we have a little laugh and say how she’s scheming to take over the world.
This was something else I feared she may despise but actually she adored it!
She fell asleep at soon as we arrived as she loved the darkness, the lights and the relaxing atmosphere.
She tracked the fish with her eyes and did a big smile.
It makes my heart race.
14 months ago we were told she was blind.
We were then told that if she ever did see she most likely wouldn’t be able to process it.
I get asked all of the time about whether or not Amy will walk etc, but to me, I don’t even worry about it.
Being included, being accepted, being able to enjoy yourself is everything.
I try not to look at big picture stuff like that.
I refuse to attend development checks, I refuse to look at “milestones”, and watch in awe as my amazing little girl makes her own.
When we received amy’s cerebral palsy diagnosis it was one of the most crushing things I have ever experienced.
She certainly has.
I also remember being told “think how proud you’ll be when you see her use a standing frame for the first time”.
How that shocked me.
Until that point I had no idea it was quite this severe and that we would need this kind of equipment.
Now I find myself ogling different models of standing frames online and looking forward to our next upgrade.
Days like today make me realise how much she has taught me about the meaning of life, what all of this is for, why I am here doing what I do.
The special needs journey may not be the path you expected, it may be a turbulent and terrifying ride – but the thrills and nice surprises are too die for.
What I hate the most is pity.
We have learned a capacity to love like we’ve never known before.
The disability, the tube feeds, all of it.
As long as she is happy.
As long as she goes to bed without a care in the world knowing that mummy and daddy have got her back and are planning their next anxious attempt at something new and fun.
There is so much to be happy about out there, try and not let the clouds block your metaphorical sunshine.
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?