FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
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."
Sunday, September 5, 2010
Never Alone....
I have 4 brothers and 2 sisters. They mean the world to me, and I know they would move mountains for me if I needed them to. My sister's have been invaluable to me through this last year. My youngest sister A.(almost 14yrs separate us!) came to live with us this winter/spring when things were so very rough with Little Man that I was barely keeping up. The morning she arrived, she did more in 3hrs. than I had been able to do in 3 weeks- laundry, dishes, games with the big boys. Taking care of little man had become a full time job. Right before his first hospital admission, his daddy and I had both been calling in sick to work because it took both of us to care for the boys throughout the day because little man was so sick and in constant pain. A. stayed with us for 3mo. and it was a gift. My other sister K. has been available, almost at the drop of a hat....she lives closer and visits often (never often enough though!) ;)
It is our hope that our boys always have the strong bonds they are forming now and carry with them, for each other, for life. Our eldest struggled with Little Man crying episodes, when the "colic" started at 2 1/2mo. old - he wanted to help so badly; he is a responsible leader. Our second son cringes at the thought of Little Man getting his blood drawn, an IV placed, even a blood pressure check makes him hurt for him- he has a sense for other people like no other, he is a protector. Our third son is too young to fully understand what is going on, and has started feeling the pangs of jealousy as this journey goes on and on and on; but he has been so patient- so loving.
Their bonds will be stronger than they would have been had Little Man not gotten so sick.
With Little Man's illness, we have had to strengthen from deep within, a strength that could only come from Above - to perservere through the many days of crying and crying with nothing to do, nothing to stop his pain, no direction to go in, trapped. It has been a very, very difficult year and I will never forget the long days and nights. But I am not one to dwell on such things for long and choose instead to focus on our blessings.
We celebrate a year, Little Man's 1st year, a year to a diagnosis. We celebrate the gifts Little Man has given us....patience, perseverance, advocacy, empathy, love, knowledge, faith, closeness, trust, blessings, support, strength...
Faith, Family, Friends....
Never Alone....
Your family is beautiful Joy!
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