I sit here wondering when will things come right. I am haunted by so many things the past 5 years with Jason and the troubles we have had trying to help him to eat, trying to lead a normal life. Almost 4 years ago we had to make the decision of whether to do the nissan fundoplication operation and have the g-tube placed. Our options were not the best options a parent could choose - take the risk of the operation, our malnourished, failure to thrive son at a year and a half weighing 5.5kgs going through the risky operation or not doing the operation and risk him aspirating over and over again and catching pnemonia over and over at the risk of losing him.
I am haunted by the fact that almost 2 years ago I started this journey of raising R200,000.00 to get the help that we needed for Jason, to fly to Austria where the only people that could help us to wean our child off of his feeding tube. Only to go through months of raising funds, the pressure of flying to the other side of the world only for Jason to catch rotavirus and norovirus, two terrible bugs that left him totally sick and helpless on the other side of the world. Why did we have to go through that? Why did we have to raise all the funds only to be dissapointed not being able to partake in the one thing that could help our son to eat?
I am haunted by the fact that we have such a long way to go with Jason with regards to his eating, his therapy and his schooling. I am haunted by the fact that I don't know where the funds are going to come from to pay for his future schooling and needs that he requires.
I have done everything in my power to help Jason and the situation we have been given. I just don't know where we are going. How long is this going to take? How much more do we have to endure? It's such a simple thing as eating, how crazy is that? Something we are all born with the will and the instinct to eat yet my son doesn't have it!!! The endless hospital admissions, the endless therapy, the future for my son. So vulnerable, so unaware of everything going on, so innocent.
I am following a blog of a father in the same position as us who is in Graz for the second time for more treatment and therapy to help his little 5 year old son. They are doing so well over there in Graz. Little Daniel has autism and has had feeding difficulties his whole life. There those parents are back in Graz with little Daniel and Hanna getting the help they need and they are from the UK. It's crazy how us parents with children that don't eat have to fly from all over the world to land in Graz, this little Austrian town and get the help that we need for our kids. And that's exactly what it is, you go there and magic happens, you watch your child that has never touched food or drinks take their first sip of water, even to hold the water bottle was an absolute miracle. There are so many South African families that still need to get there, that still need the help for their special needs children. There is nothing, no-one in South Africa that can help these little kids and these parents are desparate like us to get the help that they need to have their children eat, something that we all take granted every day of our lives!
I know Jason will eat in time, I know that we will eventually get rid of this feeding tube that has kept him alive and that has consumed our lives the past 4 years. I just don't know how long it's going to take? I know that once Jason starts eating properly his speech will definitely improve. The problem is every day is crucial, every day that he has this feeding tube and doesn't eat is more time in therapy. Eating and speech go hand in hand. Yes Jason has other problems that we can't solve like his immune system, him being so many years behind, the lack of tears, the strong pain threshold etc. but if only we could get rid of this dam feeding tube, if only he could eat.
A trigger like his tube almost comming out tonight brought all these thoughts to my head. Had that tube come out, that would be us back in theatre. Just as well it didn't. I don't know what God has planned for Jason and for us, all I know is he has brought us through so many obsticles in life. Raising a special needs child as a lot of you are aware is not for the faint hearted!! No we are not special, no we do not have any better gifts than any parent with a "normal" child. We have no choice, we have to deal with whatever is thrown our way. Some parents are dealing with a lot more than what Bruce and I go through on a daily basis. My friends I am with you all in spirit and I am here for you if you need me. I wish I could wave a magic wand and sort out all our big problems for our little kiddies but I can't. All I can do is encourage you and do what I say to myself. Just keep swimming, keep the faith, tomorrow is another day and things will get better!!
We have along road with Jason but it's one road that I will not give up. No matter how bumpy or windey the road is, I am going to tacke it with all my might, put my heart and soul into it and I will NOT give up until my little man is eating and healthy. I have amazing strength that God gives me, he is with me every step of the way and when I feel I can't go on I know I can because he is always by my side! Yes I do question why he hasn't healed Jason yet and why he can't just touch Jason and give him the gift of eating but that's not up to me, that is up to him. Jason will eat not only in Jason time but in God's timing.
So I guess I should try and go back to bed and get some shut eye. I do have work tomorrow after all! Everyone concerned and reading this, don't worry about me, I am absolutely fine. The reason for this post was not to get any sympathy or "shame Jill's", it was merely to post what it's like rasising a special needs child!!