Sometimes I wish I could put certain people in my shoes just so they can see how they act. I truly believe if some people were in my shoes they would view life completely differently than they do now. I'm starting to loathe closed minded people who believe that they are better than anyone. You brag about your healthy child like they are better than my sick, helpless, but loved child. If you had to be in my shoes you would know.
Every night I sleep very lightly, because I am afraid this will be another time he stops breathing. Will he choke on his own vomit or saliva and aspirtate? Will this be the time that they are going to put him on oxygen again. Will this be the time that we will need to do another surgery. What is best for my son? Your fears are more than ever when you have a child with so many disabilities. So many medical issues. You are scared to death of sleeping because what if you don't wake up when he's struggling? I got to suction his mouth out since he cannot handle his own saliva at least 20 times a day. He vomits any where from 2 - 20 times a day. His seizures are about 20 a day. His infantile spasms are about 40 a day.
Do you know what that means? That means that his brain is not healing. That he will contiunue to have seizures since we cannot stay out of the hospital long enough to keep them under control. Do you know every day I got to find a fine balance between making sure I do my house chores and take care of him. Than make sure I spend time with my husband and my other son. Every minute of the day I got to worry to go the bathroom. If I go to the bathroom and leave him will something happen to him when I'm going pee? Things like this every day.
Making sure we go to appointments each and every month. What new thing will they tell me about this time? Talks of wheel chairs already, he's 9 months old. Talks of his eye sight we will find out in October. I'm so scared that he will not be able to truly see things. Will he not know what we look like? Does he not truly know who I am. I'm so blessed that his hearing is good. He can hear us perfectly fine. So that's one thing we are blessed with. I have 3 homes right now, my house, my car and the hospital. We have people constantly coming out to see him. OT, PT, Pallative Care, Help me Grow, Bearu of Children with Medical Handicap. These people are in the struggle to make his life as good as it gets.
Soon we will have 2 more people we need to go with and actually 3. We got to go to a cardiologist because he has a heart condition that is 'mild' right now since it tends to be normal in children with his condition. But we got to go to complex care AND Cerebral Palsy Clinic. Than soon the seating clinic. We go through so many Xrays, Ultrasounds and tests it's not funny. Most couples couldn't handle this and those who are going through this have to have a wonderful bond to get through this. I'm so blessed to have my understanding, strong and loving husband. Because without him here I do not know what I would do.
Not only that but we have a 2 year old we got to think of too. Who is so smart, intelligent and only has one medical issue. We are always teaching him how to be a good brother, help take care of his brother and to be open minded in this close minded world. Taking him away from the people that would laugh at his brother for his disability when they themselves have known someone with a disiability. Not as bad as Austin's but you'd think they be a bit more open minded. Or get him away from another child his age who would laugh as Austin would cry out in pain. It's sa to see what this world is coming to sometimes. When it's OK to someone to make someone feel so bad about themselves and their children. My 9 month old cannot help that he was born this way. But than again you cannot help that you were born the way you were either.
I get so angry when I see someone talking crap about a disabled child.. Or someone different than them. Why do parents not teach their children these things. I know my parents taught me to keep an open minded to everyone. I do not care of your race. I do not care about your past and what you've been through. I do not care what your medical issues. I will love you the same. I will love you for who you are not what other people think you should be. I will not be one of those closed minded people. I will not stare or gauk at a child with a wheelchair.
I will stop and say hi to the parents. Ask questions about the child's walker as they walk the halls. COMPLIMENT the parent on how well they are doing with their child. COMPLIMENT how beautiful that special child is. When I see a mother at children's crying I HUG her, hold her, and pray for her. I do not care if I do not know this woman but I know we have something in common. We are this hospital together, crying because we do not know what will come next for our child and praying that someone, any one could help make our child's life better.
I should not judge these close minded people. I should pray for them but it's so darn hard to pray for people who have lost their way. To pray for people who only make fun of an innocent child. Who brag that they have healthy children where there are so many people in this world would only hope that their child could be healthy for one day. For us parents who have put their child through surgery after surgery. Drug after drug so they do not feel pain. Trusting someone you barely know with your child's life. But in reality I think they might need more prayer than Austin. Because one it's their judgement day I know where they will be. God knows what they have done. God knows the pain they have caused not only for us but for our child. He might be only 9 months old but he knows what's going on and he will for the rest of his life.