We had no idea what this tiny thing (okay, not so tiny- almost 9 lbs) had in store for us. Soon we went from all that baby bliss you see above to a whole new ballgame of hospitals, transfusions, unknowns, incredibly uncomfortable sleeping arrangements, disgusting showers, learning a new language, one income, lots of tears, lots more prayers than tears, fear, faith, anger, gratitude, education, advocation (that isn't a word i don't think...). The "baby" times were sort of stolen away from us. Oh don't get me wrong, I'm soaking them up now, little boy, even if you are two years old. You still get to sleep in bed with me, and sometimes I hold you through your entire nap just so I can smell your hair. I know. Because you scared us there for a while, baby boy. We didn't know if we'd see you turn 6 months old...but you did.
And after that, you still had some scary days. And we still lived in the hospital. You got to come home for your first Christmas, if only for a couple days before having to head back to the hospital for awhile.
You were still on a lot of meds then. A lot. Continuous IV infusion of Octreotide, oral steroids, oral carafate, oral prevacid, oral liquid vitamins, oral liquid vit D, oral amicar. A lot.
Time drew closer to your first birthday, which you spent in the hospital.
You didn't care. You didn't really know your house as "home" yet anyway. So you were plenty happy there. And sick as a dog. I never want to go back to those days-- I appreciate them for what they were, and for the lessons God has taught me, but I don't want to ever have to go through them again. That is a place that I will walk through again only if I must...and only by the grace of God. After you turned one, just as we were told by the doctors you would, you did start to get some better. By the time you were 18 mos old, we were starting to be home quite a bit more. You did spend Halloween in the hospital, but only for a few days before and a little of the day of. We got to be home to Trick or Treat.
You got to learn to brush your own teeth, at home...you got to spend your second Christmas, the entire Christmas break!, at home...
you looked like this five days ago:
Splashing in the tub, pool, sprinkler with your brother is just around the corner. That stupid line is out, and while it will kill me inside to hold you down if you need an IV for blood, I have a feeling your blood transfusions in the future are not many. I am not God, and I do not know all things, so if a huge bleed befalls us in the future, we will do what we need to do to save your life. But for now, you are doing excellently. You are the bravest soul I know. You are full of life, life we didn't know if we'd get to see. Life we will forever be grateful for. You are a living, breathing example of the grace of God...the hand of God in our lives. You are a reminder that He watches over us, protects us, and gives us miracles, even today. Yes, medicine (of which you are on very little now) has helped to save your life. Blood transfusion after blood transfusion has, too. But even with all of that going in your body, there were times we didn't know what to do. I have seen you, literally, at the door of death more than once- and once is one more time than any parent should live through. But today, you are here. You are happy. You are growing. You are full of joy.