Recently we have decided that, other than oats, it appears Zac may have – finally – outgrown FPIES.
Thank you, God!
We are all thrilled with this. Of course, we have discovered other issues that take the place of FPIES, but are eternally grateful that only oats appear to make Zac vomit uncontrollably and experience other unpleasant symptoms now.
Outgrowing FPIES is a blessing; it’s the “get out of jail free” card every FPIES family dreams of. Because, make no mistake: living with FPIES is very like being imprisoned. No aspect of your family life is unaffected. Knowing your child could become so very sick from even the tiniest trace of a food is terrifying, and to avoid that families change everything they do.
They change their diet.
They change their personal care products.
They change their cleaning products.
They change their homes.
They get rid of their pets.
They sometimes change their jobs.
They lose friends.
They lose family members.
They lose themselves.
They all hope and pray for the strength to keep their children safe, for their finances to survive outrageous monthly grocery bills, for their marriages to survive the stress and upheaval, for good medical care, but most of all, they hope and pray for the day when their child outgrows FPIES and can begin living an unrestricted childhood.
They pray for the day their child can eat a slice of cake at a friends Birthday Party.
They also pray that, while still waiting for their “get out of jail free” card, they have understanding “inmates” to share that time with. Friends, family, doctors and nurses who will get it and be helpful and kind. All too often that doesn’t happen, and for that reason FPIES Global Awareness Day was created.
We are basically out of the FPIES world, now (even as we enter several new special needs worlds), but I look back in amazement at what we went through the first three years of Zac’s life and clearly remember what current FPIES parents are going through. I know. I get it. I’m aware.
So I’m asking for help in spreading the story of FPIES, no longer for my own son, but for those families still surviving that life. Help them find understanding “inmates” in their journey by sharing what this disease is, and how it affects children and families.
First, go here to Find Your 14 Tools to Get Involved on Global FPIES Day and see what you can do to spread the word.
Then, read and share some links on social media.
Here are some links you are more than welcome to share today…and always!
Honoring Global FPIES Day (this one has a ton of links to share, too!)
FPIES Awareness (Still) Matters
Blog: Bullfrogs and Butterflies
The FPIES Foundation: Inspiring Family Stories
What Every New FPIES Parent Needs to Know
Blog: F U FPIES
10 Things Other Parents Needs to Know About FPIES
Blog: FPIES & MudPies
Blog: Our Mack Attack
Blog: Our Lives and FPIES
Blog: Trials and Triumphs of Nicole
Blog: My Little Pie with FPIES
VIDEOS TO SHARE:
Our Superhero: Cohen’s Story (Super Cohen’s Crusade for FPIES)
