Thursday, November 12, 2009

A Whole New World

My initial urge, after phone calls were made and prescriptions dropped off and kids settled was to sit down and write about everything that went on yesterday afternoon.

I'm 24 hours into this now and I feel like I've gained a bit more perspective but not much. And now, maybe, I can write about it in a better way.

Yesterday I took my almost five year old son to see a specialist. He had to have his eczema re-evaluated and we needed to find a new course of treatment to try and help his skin and allergies. Plus, my husband was convinced that our son had Cystic Fibrosis and he wanted it explored.

He does not have CF- Thank GOD.

But the appointment that I had assumed would be simple and quick was far from either of those things.

I walked in expecting to get a new antihistamine and some new steroid creams. I left with 4 prescriptions, orders for bloodwork, and an appointment for a month from now for more tests.

And I walked out into a whole new world.

My son has severe tree nut allergies and an apple allergy, as well as moderate to severe asthma.

I have been trying to keep this in perspective.

My child does not have cancer.

My child is not dying.

My child is not suffering in pain.

But I cannot get away from the idea that if my child happens to eat something wrong he could die.

I cannot walk away from the pile of medications that is currently sitting on my dining room table.

I cannot throw away the allergy action plans that I've filled out for his school and my purse and my parents.

I'm 24 hours into this and I'm lost. I'm upset. I'm scared for my son.

My son is innocent to all of this and part of me is ok with that. The other part recognizes that I need to make him an active and responsible participant in his choices now.

I know that two weeks or a month from now this will all be routine. Supermarket trips will only take a little bit longer than they did last week instead of 4 times as long.

I know that I will have a list of foods and juices that he can eat freely and enjoy without worry.

I know that we will get into a groove with his medicine at night and the treatment for his skin.

I know all of this. But right now, I am having a hard time.

I worry about school, even though they have already placed a BRIGHT YELLOW sign with all of Nicholas' restrictions in his classroom.

I worry about eating out and what might have nuts or have been prepared on a machine that has traces of nuts.

I worry about him being different.

Could he outgrow this? Sure, but it doesn't appear likely.

Could it be that we never have to use his epi-pens? Of course, but I'm in the process of training everyone who will come into contact with him on how to use the pen.

Could I carry around his rescue inhaler forever and never have to give it to him? Yes, but I've still ordered all the necessary medical supplies needed to make sure he gets all the medicine he needs.

I'm 24 hours into this and our world has been flipped around and I worry for my little guy and how this is affecting him.

And I worry that a bite of a cupcake or an accidental sip of juice could turn our world upside down all over again.

And I'm trying to gain and keep my perspective because a few weeks from now this world won't be so new anymore. And hopefully not as scary.


Miss K said...

Best of luck to you. I know that you will get a handle on this. It's so much better now than it used to be. Schools and restaurants and much more aware of allergies and that makes it easier. I know that it will still be a big adjustment, though.

Anonymous said...

You are going to be his advocate as always, it's just that now there's a little more to keep in mind. You're going to tackle this like you seem to tackle everything else- head on!!! I will say prayers that before long you will be able to breeze through the supermarket and that it will be old habit to ask the waiter/waitress what exactly goes into their house specialty macaroni and cheese. :) lots of love, Rachel
Kisses for the boy. :)

Mommy X said...

I feel for you and I can so relate! My son was diagnosed with eczema and egg allergy when he was six months old. Only to be followed a few months ago with severe tree nut allergies and asthma. Now just this weekend we are dealing with seizures. I totally understand the feeling of helplessness and I'm so sorry all of you have to go through this. I would like to recommend the Food Allergy and Anaphylaxis Network to you ( Lots of great info that you will find really valuable. Hang in there. If you ever want to talk about it, please email me at Your little guy can still be normal, even with the bright yellow sign. Hugs.

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