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."
Saturday, August 6, 2011
Support is Everything.
There are so many good things that happen everyday, but telling you the little things of a 2yr.olds normal development isn't exciting is it? It is exciting to me, when he says "more please" and "knock knock" (for the joke), and when he picked up 3 dice and turned and played with them and turned them all to the 5's- and then put 2 more beside them to match, when he looks at the number 2 and says "2!", and puts a puzzle together. These are all things a normal 2yr.old is doing....but they mean, and say, so much to me.
Little man looks good, the compliment we have been getting so much of lately. And it IS a compliment, because he DOES look good- since his transfusion, he isn't pasty or pale and he even has a suntan from our week at the lake. And he handled our trips well and he's coping with our schedule....but it is because we work so hard at it. But, if I don't tell you how hard it is- will that make it easier? Does it make it easier to not know how hard it is to assure your chronically ill child is thriving, to assure your other children get the love and attention, time and training they need to become fine young men. It is good for others to see how good Little Man looks, how well he is thriving....it speaks volumes to how hard we work -- even if the one giving the compliment doesn't know that is what they are saying. So, thank you. Thank you for your compliment and your continued prayers, a thank you to all our family and friends who have supported us through all of this.
There are different stages we go through, and we continue to cycle through them; each time getting somewhat easier. But, some things get more difficult....I sat with my little man while he received 2 iron iv infusions, after trying to tell ourselves that we were holding because he "looked" so good and that his other symptoms were so chronic....he fell severely anemic and I sat with him while they poked him 3 x and finally found a heel vein to put blood in him, more blood exposure....to pink and perk and tank him up - so that we could enjoy our vacation time with him and our boys, so that he would not be dangerously sick. I share a lot here on this blog, but we also do a lot privately. I am not looking for your sympathy, in fact I am asking you to please not give it. People who know us, know we do not like/want pity. Our Faith is too strong for pity. Empathy and support, and most of all prayers go a long way. I read something today...."we'll pray and then stand back and see God at work". So profound.
Another very profound reading is a blog about a family with a special needs child. Her post: Amsterdam International highlights the famous "Welcome to Holland" poem written for parents of special needs children. It was a very inspiring and worthwhile read for the thoughts, and stages, that a parent goes through. No sympathy, no pity, never regrets. Unconditional Love (and way too much momma guilt!)