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."
Wednesday, February 9, 2011
Showers of Blessings with a sprinkling of Humility...
Angels disguised as friends who offer to watch Little Man’s brothers for the day, after a particularly hard night of pain and sleeplessness (pre-FPIES diagnosis), a night that had been happening with increased frequency, followed by days that were more of the same. Swallow your pride, accept the help. It was hard to accept the generous offer but I put myself aside and thought of my boys and how much it would mean to them, and I accepted the offer. I began my lessons in humility.
It continued when my sister moved in, to help, and when friends generously gave us their RV for us to take to Philadelphia so we could get Little Man to an appointment with an Allergist for a diagnosis, and a direction. Our blessings continue to flow… so many blessings- I will devote another post to, at a later date. Please know, if you are reading this and you have helped me in any way...it never goes unnoticed (by us or Him).
The blessings others have bestowed on us have been inspiring. The kindness of not only friends and family, but complete strangers.
But strangers we are not.
Common bonds we share.
A few weeks ago, I read a post on a support board from a mom who had taken her daughters to a clinic in New Jersey, The.Pediatric Center for Rare and complex diseases. She reported good success with this Dr. at the clinic in helping guide her through her daughters FPIES and food trials. Another mom saw this post as well and called to check on it herself. She then shared this information in her blog post. They had an appointment for their son lined up. I read it. I began to wonder if it would be something we should do for our Little Man. I was familiar with the research MD, as she wrote this article on Non-IgE food allergy that grabbed my attention a few months ago. I have been dissecting through it and processing through all the information it provides, connecting the dots to what other moms report and what we experience to what all this means- Non-IgE food allergy, Protein Intolerance's, FPIES. SOO much information in one paper, now a chance to MEET this doctor? To have her consult on Little Man? Could it be real?
Another FPIES mom spoke to their son’s doctors about this research MD. They made an appointment for that very week for their son. She shared the information she learned as well and that it might be something for others to look into. We also began to discuss the possibility, the probability of a trip out east again. More information was obtained about the research and the MD and the study’s components and it looks promising, very promising.
Now to get an appointment, an appointment with this very knowledgeable research MD that would also involve being a part of a study she is doing. We make calls and send e-mails with the intentions of our interest for Little Man to obtain an appointment. Other families call as well, other families looking for direction, looking for help on this journey. We get word that they are interested in Little Man but we are unable to reach the scheduler….the spots are filling up fast and it looks like it may be March or even April before we go.
And then an message comes from a fellow FPIES family. A family we’ve never met. A family we share common bonds with- not only a child with FPIES but a family of 4 children (all similar ages). A family that struggles with the everyday weight and strains of this chronic illness just as we do, that needs this appointment for direction just as much…“Will you take our appointment slot?” is her e-mail message. Not because they don’t want to go, or because their little man doesn’t need it. But because there is a connection among the families…..and offer so generous…of course, I can’t imagine accepting such an offer; and we continue to try and get a hold of the scheduler in New Jersey. We get a hold of the scheduler/coordinator with confirmation that they are interested in Little Man but we get disconnected before the appointment can be made. Another message from this family….”can you make a 10am appointment on Feb.17?” is her message; before I could even reply again she has already made the call to the scheduler and requested that our appointments are swapped. A family we've never met, kindness from strangers, blessings from angels.
There simply are no words. No words that I can find to even begin to express my gratitude for this extreme act of kindness, act of thoughtfulness. This family follows our story, and knows our struggles- they share many of those struggles as well, as many other families do. They have sensed my urgency for help as my son is not gaining weight, not tolerating foods, and not moving ahead. They also follow our story enough to know that I am trying to help. Finding answers for my son is my driving force but my passion is in helping others – helping others find their answers, find their baseline. The more I help, the more I learn and the more I learn, the more I share, the more I share, the more I help. We can connect all the dots, we can find answers, we can help one another. We can help our children. We can help future children. We can make a difference.
We are not alone and I am humbled.
Showers of blessings…and my blessings and heartfelt thanks go to the family.
We see Dr.J next Thursday. Stay tuned!!