It's in weird places.
So on top of all the other crap I mentioned before about being depressed and all, I am struggling with another issue.
Where is God?
There I said it.
I came out and said that I PATRICIA CALDWELL, woman that everyone thinks has this perfect faith is having major spiritual problems.
I am questioning God like I never have before in my life. Even more so then after Makily was born. I've been doing that for quite a while now....just haven't had the nerve to admit it.
For a long time I kept telling myself all the problems we have had was for a reason.
God was working, he was doing it for the greater good.
Well I am T-I-R-E-D.
I think I have seen too much.
I can't say I don't believe in God anymore, in fact the thought of just uttering those words makes me feel very odd. I just don't think I believe some things I always believed before Makily was born.
Where was God when Makily lay suffering in Shands when she was six months old?
Where was he when I was begging and pleading for the doctors to help her?
Where was God when I nearly had a nervous break down after being in the hospital with her for nearly five weeks? I vividly remember laying in the floor of the shower of Makily's hospital room crying so hard I vomited. I remember feeling catatonic afterwards.
Where was God on the night Makily had her seizure and I was here with her alone and horrified? I can't say I felt his presence that night or the two nights thereafter that she had to be put in a drug induced coma to stop the seizing.
More importantly where has God been for the past five years that I have been praying and begging him to heal Makily? There are actually people that believe if you just pray enough...or the right way (and what is the right way?) that God will answer your prayers. Well I am sure I have prayed many different ways....and my prayers seem to have fallen on deaf ears. I don't even expect her to be "normal", I've just prayed for simple things like Makily to walk, to talk or....gasp....to eat by mouth.
What I am saying here is that I am not praying for God to give us a million dollars.
I am praying for my baby's life to be fuller then it is.
What's sad....is that I'm not the only one. Our family is not the only family that I have witnessed go through some pretty HORRIBLE times.
Look at Andrea (and i hope you don't mind me calling you out here honey, I love you dearly, your life has deeply touched mine). She had sweet Luke with CMS, then has beautiful Hannah whom avoids having CMS but instead has Downs.
REALLY.....REALLY GOD? SERIOUSLY?
I have been following THIS FAMILY.
They had one baby....little Gabe who passed in-utero. Then she joyfully gave birth to little Jonah. Jonah has EB...a condition which basically makes his skin just fall off, and create sores all over his body. The things HE and his family have to endure are RIDICULOUS. They are handling it amazingly well. I can't help but look at Jonah's angel face. He is smiling, his GORGEOUS blue eyes gleaming, with sores all over him. I wonder WHY GOD....WHY!!!
Right now the Osero family also has been on my mind. Danny has been in patient for SEVEN...YES SEVEN WEEKS. One thing after another, after another, after another. His mother reminds me of me and her stay has been MUCH LIKE the one I had with Makily at six months. She's begging for certain things, the doctors ignore, her child suffers....then in the end they do what she said from the get go. I'd be a lunatic....I was.
Why should ANY child suffer?
I think I have seen too much.
When you have watched your child suffer time and time again, it changes you.
When you sit back and realize that no matter how hard you try, how much you do there are just certain things that aren't ever going to get better. That your child will just have to deal with it....and you will have to sit by and watch it...helpless.
I went to Walmart last week to school shop, how depressing it was to stand in the back to school aisle and KNOW that there is NOTHING there Makily can use. I decided to go buy her new clothes instead, I regretted that decision quickly when I found myself standing in front of all the leotards, tutu's and tights. More things Makily won't ever need, things she won't get to do. I'll never get to sit at a recital watching her dance off beat and clumsily in a tutu...and frankly THAT PISSES ME OFF.
I'll say it again, I'm not asking to win the lottery, or be a super star....I just want the simple things for my baby.
I am grateful for one thing though, I am grateful that Makily has no idea she is different. I am happy that she only knows our love for her and LOVES US back. If she knew she was different, if she understood the jokes that will be made about her as she gets older.......I might not be able to bear it.
So there it is, the hard, ugly truth.
I'm not sure where to go from here.