Tuesday

Today is Tuesday! It's our long night/day together. I'm sure as weeks go on and she is sleeping more through the night that these days will get easier and easier. Today was 50/50. She cried 50% of the time and didn't cry the other 50%. :) It seemed she was having a growth spurt day because all she wanted to do was eat!! Every day is an adventure!
It's funny how when you're pregnant, everyone shares their pregnancy stories with you and offers their insight and advice. And when you bring your newborn home and try to deal with all of the changes...the stories, insight and advice keep coming. I imagine this continues as children grow as long as mothers, sisters, aunts, and friends have stories and knowledge and advice to pass on. It's a common bond we all share, whether we have children yet or not, and I find it incredibly comforting. Especially comforting to hear that you are not crazy and definitely comforting to know you are not alone. The first thing every woman says to me since her birth is "Kim, you're not crazy, you know that right?!" :) Funny thing is, no matter how many times I hear that, it's always a relief!
It's certainly exciting but overwhelming to deal with the newness of being a first time mom and dealing with the "normal" stuff associated with newborns. However, I never would've imagined I would have gotten the news on her first day of life that there was a genetic issue with her skin, that she would spend her first two weeks of life in the NICU and the future of her condition would remain unknown for some time. As scary, overwhelming, tiring and sad as the whole ordeal was in the hospital, we somehow had to kick it into gear to take care of her throughout her stay in the NICU. Now that she is home and out of immediate danger, we are like any other parents learning how to care for this little one...but there is something more. The waiting, the not knowing, the overwhelming desire to know that she is going to be fine. This "something more" is the hardest for me to accept and I admit that it hasn't been very easy for me. Also, I somehow felt, that because of our circumstances, that I was placed in another category of parenthood. I felt that my experience was different from most people I know and I was angry about it, still am I guess. I have actually felt grief. I grieved for normalcy and grieved for the expectations not met. Somehow the sense of normalcy was snatched away that very first day and I found myself asking why. Why?
Now I am faced with the next big question...what's next? With this question comes fear and anxiety.
I am told, however, that this questioning exists in the hearts and minds of every parent, even if their child doesn't have a genetic skin condition, or any other genetic disorder, or autism, or cancer... when we make the decision to become parents, and God blesses us with a pregnancy, we are still given no guarantees. I found that out on day one. Because we love our children so much, it is easy to forget sometimes that ultimately, they belong to Him.
But when we do make that decision to become parents, we also make the decision to be caregivers, to guide and teach, to wipe tears and share in laughter, to take a step back and ultimately let go...and we make the decision to love unconditionally, just as He loves us.