Life with a disabled child.

We have been attending appointments for Frankie from day one, it was made clear he would need therapies, appointments, meetings, back then i never really knew it would be as much as it is now. All of which are still in place today, he is a busy bee, he hardly stops, which means we hardly stop, but anything to help him and ease any pain he has is most certainly worth it. To any mothers reading this you will know you do everything to help you child, to make sure they are happy, healthy and safe, for some parents this is easier than others. I will admit, i do find it hard to understand some peoples concerns, i know we all love out children dearly, but a cough, cold isn't going to kill them.
When Frankie gets a cough, its not easily sorted, as many of you know Frankie is fed via a gastrostomy tube, a tube operated into his stomach, of which he is fed milk 4 hourly on, so when a cough appears Frankie is often sick, he coughs so hard using stomach muscles strangely, i now that sounds a little crazy, but give it a go, a cough u feel in your throat is alot different to a cough you heave from you stomach, our benefit, knowing the difference and when each one is relevant, Frankies misfortune, not knowing.
So there is the sick, oh those four letters, that small four letter word, i would have to say i am relieved of a day when i don't have to spend it cleaning up sick off my sofa, a bed, my carpets.
A lot of my friends who have children i notice will write on facebook of course :) that their children are poorly, that they are up in the middle of the night washing/cleaning their child and their bed, i feel for them, maybe it harder this only happening every once in a while, but let me let you in on a secret, i do this, many times a week, week in, week out, but hey if i informed you all of that you may find me a little boring right, or maybe i would be seen as attention seeking, who knows, peoples opinions are all different!
So picture this you are half asleep, you child starts vomitting, you run to him, well not all that far, Frankie sleeps right next to our bed, its lovely to wake up to his little face but his snooring, jeez, now that i could do without :) but anyway, out comes the suction machine, now i am not sure how many of you have heard of one of these, my description, a large, noisy, machine that saves you life, well in this case Frankies. Frankie has no gag/swallow reflex, so when sick comes up, sick can not go down, not does he have the capability of aiming it anywhere, so out comes the suction machine, lovely name it has *devilbliss* really, who thinks of these names?
Now suctioning a child who has not body movement/head control/understanding of the situation is hard, to how a child still and stick a tube in their mouth and up their nose isn't something we want to do on a daily basis, but if it saves them from choking and worse things happening then you would do it right? This suction machine and i have a love hate relationship, i love how it have saved Frankie from aspirating, swallowing anything into his lungs, but i hate how he fears it still, after three years. So with all this going on you find yourself having to change bed sheets, normally the ones you have only just got dry and put onto their bed just before bedtime. Changing Frankie, as most of you also know Frankie had Cerebal Palsy, the down side of this when changing is mainly the fact he is stiff, but also the fact he had no motor skills, he cant pop out his arms to help me out, he can't raise them above him head to help me get him dressed faster, he is my "very large newborn" making dressing/undressing a lengthy process.
The list goes on with Frankie, but i have given you a little insight into Frankie and his ways. When you think you tired when you child is sick, next time think, at least i know its not likely to happen again for a few months, enjoy you sleep for those next few months because i, along with other parents of disabled children will be saying to ourselves, thats over for tonight now, no more sick/problems until tomorrow.
He is a brave boy, he goes through all this yet still has a smile on his face and fights every day to everything that is thrown his way. I couldn't be more proud. He will never know how proud i am of him, or even what proud is, but thats ok, i can deal with that, as long as he continues to do what he is doing. On this note i leave you, i can hear Frankies snoring and he is due for a feed, so off to get his medication, milk and suction machine and hope for a good night, before the madness tomorrow! Night night. X

P.s I added a few photos of Frankie in bed on happier days, one is at the hospital, yes he did take his toy story blanket and toys, thats just how he rolls, but i thought you would appreciate these more than pictures of sick, haha.