written on JANUARY 20, 2015
Life after NICU life… that’s normal now. That’s what my life is all about. My family and taking care of my son.
One year ago… normal was wake up around 8 or 9am. Made my coffee and some breakfast for me and all my kids. Then we did some light chores around the house. We hung out together as a family grilled some burgers in the backyard. We watched a movie together and then slowly got ready for bed. The end to a good relaxing day. THAT was normal.
Normal NOW… a lot busier. lol. I have twins babys!!! A girl and a boy, six months old… and our son has end stage renal disease and is on dialysis. So our “normal” is pretty much everything a year ago… but add a baby girl that is learning to crawl and a son with a critical medical condition that requires medication through a tube every 3-4 hours.. feedings through that tube every 3 hours, and being set up to a dialysis machine every night for 16 hours. THAT is our normal… THAT is a long day.
There are nights when my son is on his dialysis and every hour, on the hour, he throws up. He gets real sick. He gets cranky and just can’t stop gagging. That leaves me with a very long night of no sleep, worry and stress. With what he has, I can’t do anything to make him feel better. I can’t take his yuckiness away. There aren’t any medications that I can give him to make him feel better. There’s nothing I can do but pick him up and hold him. Nothing I can do but clean him up all night. Nothing I can do but try to get him comfortable again and again.
He awakes, he throws up, I clean him up, he lays back down to sleep. I go back to bed and try to sleep. Then within an hour, he coughs, throws up, I clean him up, he lays back down to sleep… then I lay back down to TRY to sleep… it’s just a vicious cycle. Vicious.
There are times when all I can do… is just cry. Cry, pray, cry and pray. Crying because I am so frustrated and sleep deprived. Praying because God is the only one that can take his pain and discomfort away. There are many nights where I am on my knees, next to my sons crib, begging, BEGGING, God to just make him feel better. I beg for God to just make him comfortable enough where he can sleep a couple hours.. just a couple, so and I can rest. Just for a little while.
This life… this “NORMAL” life… I wonder sometimes if I can really do it. I wonder if I am really made for this. But then the next day… I am up… I am blessed. We, as a family, are all home together. WE are blessed!!
And although it’s hard… I would live OUR normal life… over and over again.