so it’s been a while since I posted, I’ve spent most of my days constantly calling chasing booking and getting angry, and I’ve come to the conclusion that having a disabled son gives people the right to treat people like they don’t matter, I’ve broke my heart on lots of occasions, because as much as we do at home the help we need just isn’t available, makes me wonder why they say we’ve put an OT in place and a Physio, if some one has a sever disability you would think these people would be a constant figure in there life, nope! my little boys a drain on the resources from there behaviour, the fact that caius can do what he does is down to me and his father, good news is we finally got a house and will move in end of feb, this can’t come soon enough, going back to the whole Houdini acts of the NHS, why do families and people like my own, it should be a no brainer but it’s clearly not, my little boy may not do what others do, but the things he can do are amazing, and there also things that we were told he never would, so underneath are up to date pics of him,
they performed the first fetal surgery in the UK this month, let’s hope that 80% termination rate hits a severe downfall,
so its been a while since I poured my heart out,
I have to say, I feel these past few months I’ve been banging my head against a wall, haven’t seen a physio in months, Cais frustration has only got worse, and more harder to bare, these are the things they don’t tell you when having a disabled child, how much it breaks your heart watching your child wanting to move forward, but his body wont let him, I’ve been emailing daily calling writing letters, crying feeling even more down, trying to get what’s right for our family, and it is heart wrenching the fact you have to fight so much to get further, when you know full well others seem to do better,
on the upside the fortication of folic acid into bread is happening now I so hopefully that takes the uk termination rate way below 80 percent, my sons neuro surgeon will be the one performing the foetal surgeries so a lot more children will be walking sooner, kind of feels like a kick in the teeth to me and the others who weren’t suitable for surgery, i think if it wasn’t for my family and friends telling me not to give up I would of had a meltdown, in all this time amazing things have happened though cai getshis very own first boots in November, cai can sit for longer he can also stand up against something for 10 seconds and today he learnt to roll over onto his chest and try to make his way to me this is a humble time for me because with no physios around its down to me and Chris to get cai to where he needs to be. I suppose one thing I can be certain of no ones allowed to give up ..EVER!!!!!! PICS TO FOLLOW OF HIS AMAZING PROGRESS
so I havnt posted on here for a while, there always one thing that always sticks in my head, those words “he will never walk” that one sentence stayed with me through my whole pregnancy, he will never feed himself, that was another not to mention, he will have no quality of life, well again the wonder kid defied the odds, as he has always done, because he’s now able to stand on me for 10 seconds, hes in standing frame and getting power through his legs making them stronger by the day, and as for his quality of life, he’s got a smile on his face always, nothing fazes this kid he is trying to speak again he was and then stopped to focus on other skills, but he’s getting there for any mom’s that are just getting there diagnosis please remember, they give you worst case sinario because they cover there own ass, but they don’t understand the pressure they put on family’s that just find out there baby isn’t the same as others, so here is my little rainbow boy flipping the doctors off
we’re SB strong here
here’s a video of my warrior and all the important people around him including his amazing brothers, daddy, auntie grandparents and cousins this is the reason that every time I look at him I knew he was given to me to make me a better person, I sing this song to caius all the time just not this version,
So i want to address this matter because if i dont i may lose my head, we are waiting to be moved, because the house we live in isnt suitable for our family, nor will it give Caius the independence he needs, he will be in a standing frame shortly and then a K walker after hes mastered the standing frame, and as it stands when he is able to use the walker, he will only have the living room to walk around in, we have been refused a house even though they are fully aware of his conditon they have point blank refused just saying we dont meet criteria!!! (Wtf)! I dont even think they have gone over cais notes, or any information they requested, i have noticed in all things i have to try and get for cai, we have to fight the world to get accepted
That one think i fear for my kids, cai more so is to be and feel accepted, but at the moment the way the goverment deal with disabled familys, they dont really give us much faith to believe in them, im now spending my days hunting info, calling to request letters from anyone who has cared for cai, physios, consultants, GPs, charity help, surely in a better world, they wouldnt continue to constantly put stress onto families who deal with what they have to on a daily basis, Its heavy on the heart and seriously not good for the soul.
To all the newly diagnosed parents out there where ever you are in the world, this is actually quite helpful, give it a look over.