I'm not one to wallow in self pity. I believe that every minute spent asking, "Why me?" is a minute wasted. There are no victims here and I certainly don't want to raise my son to be one. I believe that things are what they are. I just have to play the hand that I've been dealt to the best of my ability. And I'm really trying to play my hand well here. Having a child with two chronic diseases is a major challenge in life.
When I was initially told that Zane was allergic to all food proteins it was really difficult for me to take in. I cried. I cried a lot. I cried until I reached a point where I am now 'ok' with things. I've adjusted to our new normal - which is essentially a life that is not centered around food. I'm doing my best to come up with creative ways to redefine holidays, birthdays and social gatherings. I hope to teach my son that what makes him different from everyone else is by no means a limitation for him.
My greatest challenge, however, isn't learning how to adjust to our new normal but rather dealing with other people's perceptions and reactions to our normal. That is the major challenge. It's going to someone's house and telling them, "PLEASE. NO FOOD." And yet, they still come out with a bowl of popcorn and chocolates and cookies everywhere. I politely tell them that they aren't being rude by not offering us food. I tell them that this is our normal and we're used to it by now. I tell them that we're fine. And we really are.
When Zane was doing his pork food trial a few people told me that they hoped he failed his food trial. They were my Muslim friends, of course. And they didn't mean it to hurt my feelings but I would be lying if I said that it didn't hurt my feelings. Their kids can eat. They sit at the dinner table together as a family and eat and talk about things. My child can't eat a thing. Every bite of food that he has had thus far in his life has made him ill. The Qur'an does explicitly state that pork would not be forbidden in particular situations, like if there was nothing else for that person to eat and if it was not done maliciously against God's word. Some people, however, don't believe that my son's disease qualifies as such an exception. They can rest assured though that he failed his pork food trial.
While I struggle with feeding my son and giving him all of his medications and making him keep all of his doctor appointments . . . there is the insurance company. This huge beast that exists to make our life easier has become an absolute beauracratic nightmare at times for us. They have denied payments for no particular reason whatsoever - other than just to complicate my life. They denied Zane his medical formula on the basis that he is not tube fed. We battled this out for months until they finally realized doing so was illegal under NY State law.
And then there are the schools . . . . There are still schools that don't want Zane. I actually fill with anxiety over filling out school applications - particularly the medical release forms. They ask: Does your child have any allergies and if so, to what? The forms go on to ask if our child receives regular medical care for any particular medical condition. I know that in the Middle East answering those questions honestly for us will be fatal to Zane's chances of an admittance. I lie. I tell half-truths. I downplay the severity of his odd condition that leaves people scratching their heads wondering out loud, "So, what does he eat??" I usually respond, "He doesn't." He drinks his formula.
And even that hasn't been going so well lately. Zane went from drinking 35 - 40 ounces a day to about 20. I can barely even get him to taste a bite of food. He wants nothing at all. He has already lost a kilo of weight (about 2.2 pounds). For months now I told Zane that it was important for him to drink his formula so that he can be big and strong. I told him that if he didn't that the doctor might have to put a tube in to feed him. Recently, Zane came to me after I asked him to drink his formula and said, "Mommy, let's go to the doctor." I asked him why and he said, "I want the tube because I don't want to drink the formula anymore. I don't like it." I'm trying to prepare myself mentally for the inevitable. I think as Zane gets older it will become more and more difficult for him to drink an increasingly larger amount of the stuff. As for food aversion . . . . I haven't quite figured out how to deal with that obstacle. It seems as if it is both a blessing and a curse. I no longer have to worry about Zane trying to eat and getting sick. At the same time, I really want him to be able to eat. It seems that with this disease there are always new and more impressive challenges ahead.
All in all though, I will say that if I knew what I know now and God came down to me before I had kids and said, "Nancy, here's the deal . . . . I will give you two kids. One will not be able to eat food and will have a chronic condition that will cause numerous health problems . . . blah blah blah. And the second will be at a high risk for the same and could potentially develop the condition at any time in her life. Do you want them?" I would unhesitatingly say yes because both of my kids make me the happiest person in the world. And I am learning so much from my little hero. But, I don't know if that is me being selfish or not. I would rather hope not because I honestly believe with all of my heart that the world is a better place with Zane in it.
A friend of mine from South Africa said to me that, "Parents don't choose their children. The children choose the parents." Thank God Zane chose me.