For Christmas Michael received the gift of life, old label neocate jr unflavored cans. Hw has received so much support that its amazing. I feel that everyone who has reached out has impacted my life. Hearing the words “I am proud of you, for what you are doing.” Really mean alot to me.
It has been brought to my attention that i never really filled people in on Michael being so ill. And I believe most of that was becuase we were able to get buy, giving up things that most people would have to feed our son. And we were okay with that. But when this (our nightmare of the new label cans) happened, there was no way we could find and buy all the cans we needed to keep him alive through this fight. We needed the support of family, friends, angels.
I think I was most afraid of being judged. Becuase we are judged all the time. My son is three years old, and if you bring him buy food he says “Mommy me eat it.” I have to explain to him how it really hurts his tummy, and that maybe someday you will be able to eat it. People look at me like I’m lying to my son because I don’t want to feed him. Or when someone offeres us a lollipop I have to tell them, I greatly appreciate it if he could have one I would let him have 100. But that my son is allergic to them. Then I get comments “You just don’t want to feed your son candy.” When people comment how my son is 3 years old and still on a bottle. I then explain to them how my son is on a medical food, and he refuses to drink it from a sippy cup or a cup, and the only alternative when he stops drinking it from a bottle is a tube. I have to get the horrible mom looks when Michael is reacting and he pinches me, and I am sitting there gently telling him I love him and his pain will pass. He’s not pinching me to act out, or be a horrible kid. He is pinching me because that is his way of telling me how much pain he is in. He’s three years old, I can’t imagine the pain he has felt since birth.
We have been so lucky to have the great people in our lives now that take those feelings of being judged into feelings of people standing behind us. This is amazing. You are all amazing and make my life feel warm and fuzzy instead of cold and judgemental.
We still need huge help as we need some testing done to see if there could be some type of treatment, but being that michael reacts to medication and food, I really don’t know what else there is to do.
Except also get people to pass this on so we can get the 30+ families affected that we need in the United States. I know of 8 but only 5 are willing to come forward. As this is scary, but we need other families so that they can see it’s affecting more. Becuase at this point I feel that the company could care less about losing a handful of children. I feel that they know they did something and they don’t want to fix it.
Can someone help with this? Reccommendations? Please.
Does anyone know how to get this to The Ellen Show? Or on Oprah? Someone big who has a heart and can help these children. Please help.