I almost didn’t write this, I don’t know how some things will be taken and I don’t want to upset people either. Sometimes though it’s just a reality that the truth isn’t always pretty and sometimes the truth hurts.
I know I am not the only parent having a hard time coping with my child’s disability and maybe sharing will help someone somewhere for whom life isn’t improving, who has seen and can see their child’s quality of life deteriorating. There’s other’s out there like you, me for one.
During the Paralympics I think I surprised many people around me by not showing any interest in them at all. Especially as I’ve always been in favor of showing that disability doesn’t mean impossibility. It was just to hurtful though, it was better for me not to watch, not to read and not to hear about all the wonderful things people with disability could achieve, when all the years have brought my daughter is less and less ability. It would be easy to feel like I’ve failed her somehow, because she isn’t able to even sit up unsupported anymore, never mind stand up and take a step with a rollator walker.
For some of us our children aren’t a shining example of all that can be achieved in spite of disability, sometimes their disability is so great it can not be overcome, sometimes it worsens greatly with time and just sometimes it get’s harder and harder to hang on to hope, and that is where I find myself now. To explain why, I have to give the most edited version of my daughter’s story as possible.
15 years ago my daughter was born. She looked odd, puffed up and swollen, foamy bubbles around her mouth and full of mucus, she choked a lot and her heart beat was a little to fast. All normal I was told. I took her home and every day I told the midwife I thought there was something wrong with her. When she was 6 day’s old and the midwife was visiting my daughter went in to heart failure. I lived a street away from the doctor’s surgery and I ran with the midwife. All of the Dr’s came running out of their rooms and worked on my daughter behind the desk in reception. A Dr took us to hospital. They told me they suspected a massive hole in the heart. We were rushed to another hospital. At 2am I was taken in to a small room with harsh strip lighting and someone came in carrying a tray of tea chinking tea cups and saucers. A Dr said to me my daughter had been born with a large Aneurysm of the Great Vein Of Galen in the center of her brain, it had formed around 6 weeks in to the pregnancy with no known cause. I was told it is as rare as around 1 in 3 million and that they’d consult with Great Ormond Street Neurologists. The next day I was told there was no hope. She was on oxygen and a few times her levels dropped so low I was told she was ‘leaving’ but she didn’t! She went from her birthweight of 8lb 10z down to 4lb. I bought smaller and smaller babygrows. She was christened by her cotside in hospital. Weeks later she was still with us and I took her home. She was tube fed and on medication. At 3 years old I was still told she was on borrowed time.
The brain damage meant she suffered quadriplegic Cerebral Palsy. Now when people see her they ask has my daughter got CP, well yes she has….but that’s not all, she has the aneurysm, the brain damage, the malformations in her brain. The first neurologist that my daughter had was a lovely lady, a world leading expert on my daughter’s condition. She consulted with the worlds number 1 authority on Paige’s condition and it was agreed that surgery would present more risk to my daughter than do possible good. Several years later her neurologist moved to the private sector and another doctor took over. The first thing the new doctor proposed we do was go for the surgery (he refused that we needed to consult with other Dr’s).
Brain damage that is already done can not be repaired (at least not yet). The surgery was to embolize some blood vessels and fit a shunt to redirect blood flow in my daughters brain. The aim to try and reduce the likelihood of the aneurysm rupturing one day and causing more damage or possibly death. I paid for plates of her last MRI to be sent to her previous neurologist to take a look at. She wrote to us saying she still believed surgery would pose more risk/harm than good. The surgery itself poses risk of causing more brain damage and of course the risk of mortality or complications post surgery. I decided against the surgery, I asked the neurology team if they would monitor my daughter once every 2 to 3yrs with scans and that if there was a change in her condition ( a significant growth of the malformed blood vessels) that I would then reconsider my decision. I was told NO! If I wasn’t going to have the surgery done then they didn’t see the point in putting her under anesthetics for scans. that was that. The end of my communications with any neurologists! I think that was about 8 or 9 years ago now, no one has contacted me since.
I do not know if I did the right thing or not, so far though, neurologically nature has been kind to her. She has only ever had one seizure that did no further damage. With out an MRI scan it’s impossible to say now what the neurological picture is.
Physically however my daughter is not in a good way. This is not due to her neurological condition, this is due to the affects of the cerebral palsy on her body, the surgery would not have changed this. This would have occurred regardless, I do know that for a fact. As a baby she did well, but it was always hard. She overcame a lot, she learnt to talk and she learnt to sit up unsupported for a short time and even learnt to commando crawl.
As a baby she had a tumble form chair (I hated the bright orange plastic thing that smelt like a soft play area) , then a wooden chair that she’d bang her head on so we had to wrap in bubble wrap! Then a thing that looked like a shovel. Eventually she grew to be able to sit with just a pillow behind her, although it was only ever for a short time. Then came the standing frames, the trikes, the walking frames. I don’t know how many years of our lives I spent making my daughter cry and scream fastening her in to different pieces of equipment and telling her and myself that it was for her own good. Living in hope that if she couldn’t ever walk that at least she might be able to do a standing transfer.
Now, today, she’s 15. She can no longer even bear to sit up in bed, never mind be able to sit unsupported ever again. She could never now go in a standing frame, never mind take a step. It’s all gone now, it’s resigned to the past. The day’s of popping my daughter in a lightweight umbrella food Maclaren Major buggy and taking her on the beautiful walk just by our house have gone. She has a huge wheelchair now, the length of her bed and it’s very difficult to push.
What changed, why when a child with CP is making progress do they then start to regress ?. Often the simple answer is growth. As their body grows in height and weight, their muscles start to pull against their bones more, often pulling them in the wrong directions, i.e a foot might be pulled in or outwards. My daughters legs got tighter and tighter the more she grew, despite all the therapies. She had to have her muscles cut ( an adductor release).
It worked in one leg but not the other. This lead to an imbalance. Her hips began to suffer further dysplasia (because she’s never been able to walk her hip sockets had never formed properly). After her muscles were cut she was unable to use her high muscle tone to her advantage to help her sit so she lost this ability. Then came the leg pain, it got worse and worse, until we had no option but for her to try this most recent surgery, having bone removed from the top of her leg.
She has now spent 6 weeks in agonizing pain, despite having to take so many drugs we have to keep charts, every 2 to 4 hours there’s more medication to give. We got her out of the house in her chair the other day ( we have to push her rehabilitation) when she comes home in pain though she say’s things like she doesn’t want her ‘useless legs’ anymore, and that she never wants to leave her bed and in her really bad moments that she doesn’t want to ‘do this’ anymore.
The physio was out yesterday and she said that honestly she doesn’t now know how long or if Paige will ever now recover properly, and she did warn of the possibility that sometime in the future she may require more surgery (she may not also). Our physio was just being honest. I appreciate honesty. I wish I’d had it told to me years ago that that was as good as it was ever going to get for my daughter. I lived in hope though, which in theory is fine, until it’s gone. Then you’re left with not only the pain you feel but grieving for the hope you once had, you’re left with an empty space where hope used to sit. Me and hope have gone our separate way’s recently to be honest I really don’t need it. I’ve heard it said that if you don’t have hope then you don’t have anything to hang on to, but that’s not always true. I’m grateful for the love and support of my family and a few good friends,who have not been who I’d have expected. True friends walk in when other’s walk out. I am grateful for my beautiful family and for the fact my daughter is still here and I can see her face each day and hold her. All I need to do for now is get through each day, make the best of each day, and maybe, who knows in time I might start to hope for more again. Having no hope doesn’t mean I’m giving up, that’s something I would never do, I’d never give up on those I love. I always remember that it’s my daughter that’s suffering and that she needs me to keep my strength.
I wrote this for myself, and I wrote it for other’s too. Those that like me, are having a hard time reading all the wonderful stuff that can be achieved in the face of disability. Our voices are quieter, fewer people want to hear us. The happy stories are the ones people want to hear, but I’ve told mine anyway, in spite of this and minus the sugar coating. I’m raising my mug of tea to today, just because I’m lucky to have it and that will do me for now
I knew someone who had a sister with a life threatening illness once (their sister lived/es ) and they used to listen to this song a lot. I get it now.