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."
Thursday, October 28, 2010
Mother's are meant to nurture, and fathers to protect....
More words from other FPIES moms. We all echo the same thing in one form or another...the moms going through the same mind games of not being able to play our role.
We, moms want to nurture - we need to nuture, our babies. Our babies wouldn't be here if we didn't have this drive. The drive to stay up all night with a crying baby, to find them nourishment for their body- whether that be a formula that can tolerate, or an elimination diet to nurse them, to push through when we're told we're over-reacting or crazy, or seeking attention, or first-time moms, or not coping 4th time moms. To push through all of this, to push our own pride to the side and continue on for our children. Or, to leave all of that behind and go it alone....neither the easy choice. Tough decisions to make for the health of our children.
Dad's constant mind games because they only want to protect, protect from this being real, from facing the reality of a chronic illness and what that does to a family structure, to protect both mother and child from unlistening specialists who tell you that you are malnourishing your child, when all you've done is protect them, sacrifice so much for them, and fight for their health and well being.
The reality is dad's can't fix this and mom's can't love it out. FPIES robs the natural order of things. But, to accept that this is where God wants us, that is peace. Our Little man is our gift...well, he's our gift #4, from God. Each of our gifts have continued to give us treasures beyond measure. Right now, we're in a gold mine of treasures with little man....if only we can continue to hold on to our Faith and trust that He knows our inner strength, that He only gives us what we can handle, and that He has his plans for us.
Plans to make me stronger when this was so very hard for so many months to listen to my baby in pain, day and night -- with little to do for him. So that when I was handed something to do- I now can't do enough. I want other moms to know they are not alone, I want to help, I want to provide hope to other families, mostly I want to empower other mom's the way I was empowered when I found FPIES and it FIT what my little man was going through. Empowered when I watched the YouTube video of Jack that could've been a video in my house of Little man, to show me that I was not alone. Empower me when I found a speciality children's hospital to take Little man to get his diagnosis so we could develop an action plan for treatment on this long and windy journey....
Plans to teach me what it really means to advocate for someone, someone who can not speak for themselves. To live outside of your comfort zone, to only think about your baby and nothing else and how to get his voice heard....
Our nuturing isn't being robbed from us, but the rules of the game have changed. Our instincts, our research into our children's illness, our advocacy for best care, our involvement in their every aspect of care. Our monitoring of diapers, and foods, and reactions, and caloric intakes IS nuturing an FPIES child.
Dad's protection hasn't been stolen, but the rules changed on what he is protecting from. Protection from crumbs, from trigger ingestions, from unlistening specialists, protecting the nuturing effects of the mother is probably the best gift he can give his child.
Many days, Little man takes much coaxing to eat. Today was one of those days. A lot of holding, and offering the bottle- hoping this time he will take it, and take a good amount. A lot of time from my day just to make sure I'm taking the time to assure he has taken the caloric intakes he needs to. He doesn't "ask" for his bottle -- I don't think he ever has. But, he has always taken a bottle best from me, he trusts me that way....maybe because he knows I will persist until he takes some, maybe he just enjoys the cuddle time. Today it took a lot of persistance....and nuturing.