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."
Monday, May 23, 2011
I pace myself.....
Years ago, little man's daddy was in the Navy, long before little man or his brother T. were a twinkle in our eyes, but we did have the big boys - who were the ages of the little boys' now when he went on deployment. A 6mo.deployment that we turned into a year long separation because we moved home before deployment to be near family during the separation, as he was leaving the Navy after that deployment. Our two older boys were born in the Navy, it was the only life they knew; and we had come to realize it was not the life we wanted them to know. We rarely saw our extended families, we missed special occasions, weddings, funerals and holidays. We moved every few years and we lived on a poverty-line budget. We were proud to be a Navy family but we felt God was telling us this life would not be the family life we wanted. The separations are hard. There are little words to express how difficult they are. And they are frequent. I hold much respect for the families that continue to do this everyday. The family we created in the Navy is unlike any other. Although we were far from our extended family, we had family to celebrate holidays and birthday's with, to share the joys and the tears, to even share family dinner's with! I am proud of the time we served in the military (any military wife knows what I mean when I say "we" served).
Those separations taught me something, with the responsibilities of a single mom and the struggles of a stay-at-home mom, and the worry of a military wife.....I learned to pace myself. Those lessons are paying off now.
Little man's daddy is no longer in the Navy he so proudly served for 10years but he continues to be in public service as a fireman, gone for a mere 24hours at a time, unless he is picking up a shift like tonight in which case he will be gone for 3days. The best gift I have is the lesson I learned back in those deployment days....to pace myself. The older boys have become all too familiar with my "I'm only one person with two arms and two legs" phrase....which of course can't be complete without the octopus joke and references- just why can't mom's be an octopus? Probably because that would only make it worse- we would try and do it all....and we'd get all tangled up doing it! This is the visual reminder to the boys that I am only one person and can only do so much. I pace myself.
With FPIES, I pace myself even more. I make adjustments to our family, to our lifestyle, to my expectations....all to pace myself. I pace myself in the morning in case it is an afternoon of holding a screaming/crying baby. I pace myself throughout the day in case it is a night of frequent wakings, or holding a crying/screaming baby.
How does that poem go? Cobwebs be quiet, dishes go to sleep....I'm rocking my baby and babies don't keep. It's been a blessing in disguise as I am someone who likes to do it all before I can relax....I'm learning to appreciate the relaxing a bit more. Little Man has taught us so much.....
And, as I write this.....I wanted to write a post on how well his Benefit/Fundraiser did, and share some pictures but I am not finished uploading those pictures because Little Man has had a roller coaster day- re-cooping from the trip and long and exciting weekend. He seems to be coping well and adjusting back into his routine better than I anticipated so I am glad to see that.....and I'm pacing myself....especially since as I am trying to write this- he has awoken 3 times.....last night he was up at least 6 times (with daddy)- so I'd better head to bed and hope it doesn't happen again tonight!