All these feeding tube awareness posts and updates have taken me back, have reminded me how far we have come and how unfortunately far we still have to go.
Having a child with special needs, a child with a feeding tube, a child with immunodeficiency, a child with a rare disease has been one of the toughest battles Bruce and I have had to endure. We were given this amazing special little boy named Jason that came into our lives and totally turned it upside down. He didn't come with a manual, he was not your standard "what to expect when you're expecting baby". We have had to create our own manual. We have had to do the impossible, a lot of things most parents would never cope with. Why? Because we are super human? No because we have no option but to be. Because we will do anything and everything in our power to help our little man grow and thrive.
We have been exposed to many hospital stays, many situations where we have almost lost Jason. Many decisions we have had to make for Jason's survival. In order for Jason to survive, Bruce and I have had to go into survival mode. Some days where we have literally felt like we are just surviving ourselves.
We have had to learn things that most parents don't need to know. Learn medical terminology that most nurses don't know themselves. In order to get to the bottom of Jason's difficulties we have had to become his doctor, his advocate, his voice. To get to a treatment plan, to get to a diagnosis we have had to investigate and push. At the end of the day we are the ones living with the rare disease, living through our child’s pains and discomforts.
I have learnt through our situation that no-one can do it for us; no-one can come and rescue us. If you are thrown into a situation like this you just have to cope. You cannot expect others to do things for you. You cannot expect family and friends to understand what you are going through because they are not the ones in the situation. You have to pick up the pieces and keep going as no-one can do it for you. You have to be strong, you have to have a tough attitude, and you have to keep going no matter what. Sometimes go into robot mode. Yes there are days when you think you cannot do this but hey there's no option to give up! It's not a possibility. This is reality and reality is tough.
Most days are a challenge for me. I have sleepless nights waking up 3 sometimes 4 times a night to see to Jason, to change his nappies as he has chronic diarrhoea and with the volumes of fluid he gets he wees so much. The beeping pump at normally 2:30am. Up every two to three hours for coming on 9 years. I am exhausted yes. I have to wake up the next day sleep deprived with the standard headache and go to work and do my job to earn money to pay for our huge monthly expenses. It's hard, it really is. If I didn't have to work I wouldn't but finances don't allow me that luxury of having some time out, of having that break.
We have a child with a feeding tube; we have a child with immunodeficiency and a rare disease. We have a child that that doesn't eat. Something that is the most natural thing that almost everyone is born with that instinct. Not our little man. He doesn't want to eat. He was so traumatized as a baby that he associates food with pain; he associates food as a bad thing. He wasn't given the luxury of enjoying nice tasting food, of enjoying a sweetie or a chocolate. He doesn't know how to eat and he is so afraid of food that he will not eat. Unfortunately neurologically somewhere in there his brain is not wired the same as us. Will he one day eat? I certainly hope so!! I have learnt that this is going to take time, a lot of hard work, a lot of patience, therapy and money. A lot of speech therapy, a lot of occupational therapy. Something we have been doing right from the beginning and will continue to do so for as long as needed.
Going through the processes of these illnesses is not easy at all. Living with it every day. Living with a lot of useless meaning well advice from people that have no idea what they are talking about but they only mean well. They don't mean any harm in their advice or opinions; they are only trying to help. You lose friends but you also gain so many more.
Your marriage is pushed to the limits because you are both only trying to keep sane and survive in a situation that you are thrown into. A situation that unfortunately is out of your control. You go into survival mode, into robot mode. Time for each other isn't something you have. We don't have the luxury of time out. We don't have the luxury of going away, alone, just the two of us to just be together, to be alone, to have time for just each other. We don't have the finances for some us time anyway.
We are not super human. We are only humans trying the best that we can in a real difficult situation. We have learnt to go into survival mode, learnt how to cope in difficult situations because we have to. Anyone would if it was their child that was sickly. You become super human and you have to do superhuman things because you have to. No-one can do it for you!!
So if you're one of those super human mommies or daddies', husband or wife. Just remember that only you can keep going forward. Only you can push through. No-one is going to do it for you and no-one is going to rescue you. Pull yourself together and just keep swimming!! If you have a sick child, a sick husband or wife or if you are sick yourself. You're the one that has to deal with it and only you can do it. You can't rely on other people and you can't fall apart in the process either! Keep going you're doing the best that only you can do.
I'm not super human I'm just a mommy with an extra special child. A child that relies on me 24/7. Luckily I am given the strength and determination to keep going and to be the best mommy that I can be for my two children. The best wife that I can be.
Ok its 2:43am I think I got that off my chest. One little beeping pump set off all these thoughts and emotions in my head and I had to write them down. Time to get some shut eye before work.