Here We Go Again

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I have a problem.

I cannot stop spoiling my son.

Sometimes I rationalize it by imagining how unfair his life is.

During a conversation last night, I pointed out that Brian doesn’t know what ice cream, chocolate, or cake really are and has no idea what they taste like.  He cannot have a hamburger or hot dog, on top of many other amazing foods.  In fact, he may never know how these things taste.  Whenever I enjoy a meal and explain to Brian that he cannot have any, I feel guilty, which leads to finding something he can enjoy.

Today, the enjoyment comes from Bob.

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While this rationalization is crazy enough, I also cannot help but think of changing him this morning as I pay the cashier.  My poor baby is having another reaction, has been for the past few days, and he is in pain.

But he is a trooper.  When I go to change him, he says, “Mommy, hurts.”  As I finish and I am closing up his diaper, he says, “It’s better.”  Hearing his sweet, little voice telling me everything is better just breaks my heart.

During the last couple days, Brian has not been introduced to any new foods.  In fact, he has not shown much of an appetite for anything but water.  Yet, his body is turning on him.

Now my only choice is to reexamine his “safe foods” and try to determine which is to blame.  This is not the first time we have had to sort through his food diary and try to identify a cause.  I am starting to think there are no safe foods.

This sometimes seems to be the way with EoE patients.  Foods that appeared safe in the beginning suddenly are not, and one day items we know are not safe may be.

Every day I write down everything Brian eats and drinks.  I make notations regarding his diapers and whether he said his stomach hurt.  I include rashes and when he cries out in pain.  Even with all my record keeping, I cannot stop him from reactions.  Sometimes it feels like I am on a merry-go-round that will not stop.  We just keep dealing with the same things over and over, no matter how hard we try to keep him safe.

I pray over and over that the doctors will be able to help him.  When that day comes, I will be the one to tell him it is all better.



SIDE NOTE: 

Today I want to thank my husband.

While Brian and I are dealing with life away from home, he is keeping things running and providing stable ground for Addison. I am beyond lucky to be blessed with an amazing husband and father to our children.  Things are not always easy, which is cliche to say, but even with the struggles we face, we come out on top.

This has to be the biggest challenge we have faced yet.

Ten years ago we spent six weeks apart while we were dating, but this is different.  Now we are married and have children.  Life is different.

I hope he knows how grateful I am to him for everything he does and everything he is doing for Addi.

I miss him and I wish I could throw my arms around him and wish him a very happy anniversary.

Thank you for saying “I do” eight years ago and every day since.  I love you.

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2 thoughts on “Here We Go Again

  1. Keep your head up. You are doing amazing! I know first hand it may not seem like it. …but you are. I too did the spoiling thing, and catch myself tending to do it now. Even though my daughter is doing better, it’s in my mind how unfair she has to deal with this at her age. There is no right or wrong way, just the way to get you and your family through the struggle….and hopefully find some laughter and joy in between.

    Liked by 1 person

  2. I think you are a great mom! And Matt is lucky to have you as well!
    This may not have anything to do with EoE but, I have Celiac disease, and I have to be careful of not only food but anything I put on my skin. If you put soap, lotion, or shampoo on his head…he might be getting some in his mouth by accident. It sounds like is is extremely sensitive, it wouldn’t take much. They do make soaps, lotions and shampoo’s that are free of a lot of different “allergens”. But I have a friend that has gone to making her own. It is a pain, but it is the only way she is completely reaction free. My brother and nephew also have Celiac disease, and my nephew is 11. I know it is hard for him sometimes when his friends are eating something he can’t. But I asked him a few weeks ago about it and he said “It’s okay, I don’t mind that much. I would rather feel good and eat something my mom sent for me than to have a bad reaction and feel horrible.” So don’t give up, with time Brian will come to understand and will feel the same way. He is just a little young to understand the whole scope of things.

    Liked by 1 person

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