I didn’t know what to name this post, as I really am at a loss.
I knew that things would become more difficult for Grayson as he got older, I knew medically more problems would probably occur, it is common with children with such profound disabilities, but we have been very lucky. He has not had many nasty medical issues, well not in comparison to children we know.
But it would seem that time has come, I feel shaky and frightened, but that will pass, it has to as I am the Mummy and we cannot show fear.
Grayson in the past 2 months has had some nasty problems, since starting to eat real food (WHICH IS HUGE – WHOOP WHOOP) he vomits a lot, mainly at night and he doesn’t even wake, thankfully as I sleep very little most times I have heard a little cough noise, I then know he is probably covered in sick. Thankfully he doesn’t seem to have aspirated any, thank god for him getting that bit stronger, if it had happened a year ago, well it doesn’t bear thinking about.
He has had some invasive tests this past month, which are a story in themselves, but it is looking positive that there are no major stomach problems, they have to culture some biopsies they took from inside his stomach (gross) to check for a superbug but they hope that shall be clear. So it points to very severe reflux, not the standard babies have, not like Deacon’s but on a really nasty scale, it could mean stopping him eating, oh how I hope not. Grayson, Ashley and I have worked tirelessly to get to this point, a point we never thought possible, I just pray we don’t have to stop him.
My little superhero works so hard and something gets thrown into making it hard, he really fights through, you can see he is struggling and in pain, but he says screw you I will enjoy my choc spread sandwich.
Now if only this was it, this is the easy bit, this is the bit I can cope with, can say ok, we shall fight as we have over and over.
But after years of me arguing, years of me seeing my little sociable/happy baby change overnight into a child so hidden from the world, years of saying something isn’t right, have come back to bite me in the arse. I had always prayed I was wrong, this just can’t happen to my little boy, he has had too much already.
I was wrong and right all at the same time.
Grayson during a sleep study to see how his apnea episodes were progressing (he has a rare nasty type, he stops breathing up to hundred times a night) it also became apparent that my fears were true and that our little boy has a very serious type of epilepsy, I really did not want to hear this, the phone call from his Neurologists stopped my breath, you think I would get used to it wouldn’t you but nope. Ashley stared at me, not sure what I was being told, I couldn’t listen to his doctor I just wanted to get off the phone and speak to Ashley, he always knows what to say to me to keep me sane.
It was decided meds needed to be started straight away, they are strong ones too, he would send a letter to our GP, there of course were side effects, ones that could be nasty, I know friends whose children take the meds and they hate it, it changes their whole personality, but most concerning for Grayson’s is a lack of appetite. We have fought that feeding tube for 3 years, please do not tell me this will be what breaks us.
As I told Ash his face sunk, we knew, but we didn’t, I am not sure that makes sense, Grayson mentally has changed so much, but we had always hoped we were wrong. They had told us we were wrong but now we aren’t. Now this is our new life, our new reality.
A reality were we have gone from 1 medication a day to over 10, they are for the better but what impact will they have on our little Superhero’s system.
We have been told this past 6 months that he could stop breathing at any time at night, we knew he would not tolerate the breathing equipment, but we have had to make the decision to try, to put him through more of what can only be described to him as hell, we know seizure could take him, we know that a chest infection could quickly now become Pneumonia again and that he can only go through that so many times without….
But we are not going to let any of those things happen, it won’t, I am his Mummy and I will not let it – screw you you evil diseases, you will not hurt my son, he is a GOD DAMN MIRACLE!
Grayson, I promise I shall make every day the best day you live, every day will be fun filled, shall have new adventures, we will fight together, Mummy shall cradle you every day, I shall be your everything, I will find a way to take you on new adventures, to visit fun places, no matter what, I will work every waking minute to provide these things for you, I will find a house where you can go out in the garden like you long for, I will find a car seat you fit in, I will feed you chocolate everyday even if that tube has to go in and when another of those seizures come I will stop whatever I am doing and cuddle your little body better.
You are my hero.
This post was written for me, for me to understand the news that has been given to me, reading a post over and over is my therapy, I am not sure why but it works, but I write this for all that love my baby, Grayson you are loved by so many, this year we are going to travel the country and meet the lovely people who send us love and support.
Most importantly I cannot say thanks enough to the team at Raising For Grayson, in less than a month some of them are completing a seriously scary task and are climbing Snowdon – please please please if you can help to support them in any way I would appreciate it, I have never been one to ask for money for Grayson, all our funday’s and events have always only donated a small amount to my Superhero and mainly went to other charities, I am not asking for your support to help Grayson but because these amazing ladies are doing this just because they are true angels, because Grayson touched their hearts without even being involved in their daily lives.
Thank you to all who love my Superhero, honestly it is with your support and that of a few select family members that as a family we keep going, our life is ours, we do not know any different, but we do know it isn’t the easiest.