When I was 18, I got a job as a home health care worker. I loved my job. I loved that I got to work with people with special needs. It made me fell good that I was helping someone live independently and happy. Little did I know that God was preparing me for my future.
Cameron was born November 26, 2008. He was a stubborn little guy. After 26 hours of labor, he was delivered by emergency c-section. Other than a little jaundice, he was a very healthy 7lb 14oz little boy. He refused to breastfeed. This was just the beginning.
When he was 3 months old, I noticed that he would break out in a rash shortly after eating. I asked my pediatrician about it and he just brushed it off. I went back three times about it and finally got a smartelic response that I could change his formula. Did that. Went to soy and the rash went away, but he was still projectile vomiting all the time. "It's just reflux." Bull. When he was 6 months old, he kept gagging and choking on baby food. "He probably just doesn't like that kind. Try another." Went back three times about him choking on purees. the last time his ped was behind so we saw his partner. He ordered a swallow study and low and behold, Cameron has moderate dysphagia. Go figure!!
Cameron was referred to a Gastroenterologist. We found out through her that he had Eosinophilic Esophagitis. She sent us to an allergist, who found that Cameron was allergic to nearly EVERYTHING he was eating. We started a new formula and started avoiding food. The only approved food was sweet potatoes and pears. He started having trouble loosing weight. I took him to his Ped who then had the you know whats to tell me to just feed him the foods he's allergic to because, "I've never heard of someone being allergic to some of these things." As if just because he never saw it it doesn't exist. That was the last time he ever saw my son. We switched to a ped who was a friend of mine. She took me seriously and believed me when i felt something was wrong. So far I've been right 99.9% of the time.
Cameron is now eating through a G-tube. He has bulked up and is no longer the sack of bones he once was. He has a Moderate speech delay, fine motor delay, and some left side weakness. He sees an Occupational therapist, speech therapist, nutritionist, and soon a developmental therapist once a week. He sees a Gastroenterologist, Neurologist, Allergist, and soon a Developmental Ped.
I am asked all the time how I do it. I have two under two, one of which is a special needs child. I do it because I have to. God gave me my special boy and blessed me with my daughter. I am my sons voice. I fight for him tooth and nail. That's my job as his mother. Everyone always asks how I'm doing emotionally with all the stress. Truthfully, I have days where I want to cry and ask God why my son can't be normal, but what good will that do? There is no point is constantly dwelling on the negative. If I do that, I will loose my will to fight for him. I choose to be strong and a fighter because if I'm not, he looses. Not me. I used to be one of those people who hated conflict. I've definitely changed that. I'm not afraid to question his doctors and fight for the test he needs at the inconvenience of those involved. I think that's why his doctors respect me like they do.
I saddens me sometimes to see mothers of normal, healthy children taking it for granted. Don't get me wrong, everyone is entitled to the occasional "this is hard", etc. Those of you that complain EVERY day about the small things should thank your lucky stars that that is all you have to complain about.
I didn't choose to be a special needs momma. It chose me and I am embracing it. Who knows. This special little boy who will grow up stronger due to the obstacles he has overcome may just turn out to be the next president, find the cure for cancer, He may just change the world. I can't wait to see.
No comments:
Post a Comment