Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Saturday, May 14, 2011
Just A Kid...
As we near Little Man's 2nd birthday, I am reminded of this more and more daily. He is leaving his baby years, full toddler now, and before we blink will be a preschooler. As another FPIES mom recently reminded me, "the days are long but the years are short" (Thanks Heather).
The days ARE long, some days so much longer than others but one day bleeds into the next and before we know it, the year has passed. We are approaching a year since Little Man's diagnosis and yes, we are still trapped in FPIES but I guess that shouldn't be a surprise- no one said he'd outgrow it by 2yrs. Studies do show that around age 3 the body matures and becomes less reactive. We can hope. The years ARE short. And in a few years, hopefully we can look back on this as a time of growing.
It seems I am getting a lot of reminders lately about the coping realities of a chronic illness....often by other people giving some piece of welcomed empathic advice; but now more and more by Little Man himself. How he bounces back as soon as he finally feels better post illness/reaction- how he chatters and chatters all day- as if making up for lost time when he is so silent when not feeling well. "Thank you", "sorry", "excuse me", "what?..Ooh", and lets not forget "No!" are words he added just in the last few days. Once he finds a reason to say them, he will repeat and repeat. His oldest brother, W. plays the counting game...W. will say "1", Little man will follow with "2", W. "3", Little Man, "4"- they go to 10 like that.
Just when we think he's been too sick to learn something new, he "wakes up" after a relapse reaction and "shines"- reminding us all that he is "just a kid".....
This week has been Food Allergy Awareness week. FAAN (Food Alllergy & Anaphylaxis Network, a major food allergy foundation in the US) put out some educational and informational pieces. This one: "Ten things children with food allergies want you to know" is a great reminder that our kids just want to be kids....despite their allergy and chronic illness.
Ten Things Children with Food Allergies Want You to Know
©2011 Gina Clowes
1. I long to be included.
I would like to look, act and eat like everyone else. I’d like to buy my lunch and sit wherever I want. I know I can’t, but I’m happy when someone cares enough to provide a safe potato chip, cookie, or Popsicle® for me. It’s nice when I can have something similar to what the other kids are eating and I love it when I can eat the same thing as everyone else. Whenever it’s possible, please think to include me!
2. I’m scared I could die from my food allergies.
I’ve heard my parents and teachers mention “life-threatening” food allergies and I remember having some reactions where I felt very sick and really scared. I saw how frightened my parents were too. Sometimes, I could use a little reassurance that I will be okay.
3. I feel like I’m the only one sometimes.
If you have a support group or know another way for me to meet other children who have food allergies, I would really like that. It would be nice to know that I’m not the only kid who has food allergies. Having another friend with food allergies in my classroom or to eat with me at lunch would help me too.
4. I get confused when grown-ups offer me food.
I know I’m supposed to be polite and listen to grown-ups, but my parents have told me I should only take food from them. When you offer food to me (especially candy), I’d like to take it but I’m unsure and don’t know what I should do.
5. If grown-ups kiss me, right after they’ve eaten something I’m allergic to, I’ll get itchy spots.
If your dog licks me, I’ll get itchy spots too. I don’t feel quite brave enough or know how to tell you this, but I’m hoping you will remember; if you’ve just eaten something that I’m allergic to and then kiss me, I may get hives. So please don’t kiss me right after you’ve eaten that particular food
6. I’m embarrassed when people fuss over what I’m eating.
I know I have to eat my own safe food, but it’s easier for me when I’m not singled out. Sometimes, I feel very embarrassed when grown-ups ask me a lot of questions. More than anything, I just want to fit in.
7. I hear all adult conversations about my food allergies.
My ears perk up when I hear grown-ups mention my name or my food allergies. Please don’t pity me or act terrified because that will cause me to feel frightened. Food allergies are just one part of me. Instead, let me overhear you list all the wonderful things about me!
8. Sometimes I’m sad about having food allergies.
It’s hard to be the only kid in the class not having a birthday cupcake and having to eat something different from my box of “safe treats.” What makes it worse is knowing this will happen a lot throughout the year because there are 20 or more other birthdays in my class. I know it’s not the end of the world, but from my perspective, it’s pretty tough at times.
9. I’m watching you! You may think that I’m too little to notice, but I know when you forget my epinephrine auto-injector and return home to get it.
I watch you every time, when you’re reading the list of ingredients on my bag of candy. You are my role model and I’m learning how to manage my food allergies from you!
10. I will do about as well as you do.
My parents and other grown-ups “can-do” attitude will help me cope with the challenges of living with allergies and ensure that food allergies don’t stop me from being everything I was meant to be!
Adapted from the eBook Ten Things Children with Food Allergies Want You to Know.
©2011 Gina Clowes http://www.allergymoms.com/