Monday, July 25, 2011

Chronic illness....Let me just say I don't like it!!  It's not that I haven't known or that I was suppressing these feelings, but over the past few weeks I've begun processing.  Processing this season in my life, processing where we were 6 months ago, processing where we are today, just processing....quite frankly, all this processing sucks and has put me in a funk!! 

I've begun the transition from being a mother of a micro-preemie to now being the mother of a baby with a chronic illness.  Maybe it stems from the fact that in the back of my mind I thought everything would be "normal" again once we got home.  The g-tube surgery hit me hard.  I'm sure it was the culmination of many things that happened during last weekends events, but in the end it solidified that nothing would ever be "normal" again.  I mean, my baby had a feeding tube surgically placed in her stomach...that's not normal!.  Although, I also KNOW deep down life with a micro-preemie will never be "normal," I still find myself with that desire...And that desire burns and hurts!  I want her to have every opportunity at this life as her sisters have had and have.  I just want life for her to be "normal."  For 189 days I have left my baby in a hospital...that's not normal.  For 189 days she's been plugged and wired up to everything imaginable...that's not normal.  Yes, it has gotten better, we're on the backside, and considering where we started we pretty much have a perfect outcome.  It's far from the Norman Rockwell picture of me lying in the hospital bed proudly holding our precious miracle while her sisters come in to meet her for the first time.  Did Norman Rockwell ever paint the likes!??  Anyways, you get the picture.  I don't have a normal baby, we haven't had the normal first 6 months of life, we're not going to have a normal life from here on out.  Sure she smiles and is trying to coo, but there is nothing about her that is normal.  She has a looooooooooong way to go and a ton of catching up to do and could carry issues from her prematurity throughout her life.  I'm quick to say "could" because I think we haven't seen the last of the miracles divied out on Alli.  By all accounts she is a miracle of grand proportions....over and over again she has defied odds. 

I'm not going to pretend that this has been easy or that our future will be easy.  I know we have a long road full of therapists, specialists, battles for milestones, the first cold and flu season, and soooo much more.  And honestly, I have a long road!!  As one of my favorite sayings states, "There's nothing wrong with me that a margarita and ten years of therapy won't fix!"  I know, I know, it's horrible, but honestly this is hard, it sucks, and the future with chronic illness and the effects of prematurity are going to be an even bigger fight than the last 6 months!  We've got so much ahead of us that I can't even begin to imagine....makes my head spin.  But, I am so thankful for His grace and mercy that have sustained us thus far and that will get us through the next season of roller coasters with our sweet Alli at home.  Our pastor spoke on Sunday about missed opportunities by staying in the comfort zone.  Although this has been the worst time of my life, I think of all the things I would have missed had we had a normal pregnancy and a sweet baby born in April weighing 6 lbs instead of barely 1 lb.  We would have missed a living breathing miracle, I would have missed learning how to REALLY pray, my family would have never been used like this, and we would have never witnessed God move when thousands of people prayed for life and healing of one baby, our baby, not once, not twice, but many times over and over during the past six months!!  And with all that I know that none of this has been in vain and Alli's true purpose in this life has yet to be discovered! 

"He delivered us, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many."
~2 Corinthians 1:10-11

Post a Comment

Copyright © Jackie Belin
Made with Love by The Dutch Lady Designs