One of my friends and I were talking the other night and she says to me. "What doesn't kill me will make me stronger, right?"
To which I responded "That's what they tell me." But then I had to add the following "But sometimes I feel like I am the walking dead and I'm just too stubborn to give it up and lie down."
It's true. Some days its hard to face the uncertainty of things. But in the end you have to pull up your big girl panties, slap a smile on your face and get on with the day, because you can't just STOP.
When we discovered last year, just how bad things had gotten with Caitlyn's kidney I felt my world crashing. Being told that your child has almost lost their kidney, and will be catheterized multiple times daily for the rest of her life is not sunshine and lollipops and its not something you expect to hear about your 6 year old child.
To later discover that things have gotten so bad because of a doctors neglect? Well it broke this mama's heart. But it also spurned me in the direction of OTHER options. Second opinions. I contacted I don't know how many hospitals, doctors, clinics, foundations, looking for help. Looking for answers. But I couldn't tell you about much of it because I did it all in a blur. I met roadblock after roadblock after roadblock. But you know what? I found a different route. And that brought us to Boston. Which led us to Dr. Retik.
In May, On Mother's Day, I left my baby girls behind and boarded a plane with my husband and oldest daughter. I was gone almost a week. I headed to Boston full of uncertainty, worry, fear and a sadness at leaving my babies on Mother's day. I came home with peace, hope, and the knowledge that even if things did not get better, I was doing everything in my power.
In July, I headed back to Boston with new worries, fears, and sadness at leaving my babies this time for two weeks. When they took Caity back for surgery and I went with and held her hand and watched her fight the gas mask because of her fears, I wanted to break down then and there, but I didn't. I stroked her hand, I kissed her cheek, I spoke soothing words to her and I watched her eventually lose the fight and fall asleep. Then I went out into the hallway, pulled myself together and walked to the surgical waiting room. Where othere parents awaited news of their childs surgery. None of us spoke, but we still all knew. We had something in common, the fear of the unknown. The fear of something going wrong. The fear of losing our babies. But I couldn't let that fear take me down.
After her surgery while in the ICU, we waited. Waited. Waited. Watched all the familys around us, also waiting. Then we got admitted to a private room on the transplant floor. OOH Yippy Skippy! Then DH went back to the home we stayed in (mandatory that someone stay there every night or we lost our room) and I got the pleasure of staying with grouchypants. Grouchypants who wouldn't sleep. EVEN DRUGGED. It was a miserable experience for us both, I think. If you are a facebook friend you'll remember these posts
Rough night , she needs to sleep and try to eat, but right now she won't attempt either.
Having a rough go of it, pray for sleep for her (and me)
But we go through it and she healed and we came home. We have noticed definite changes in her, but do not yet know how well the surgery was.
Am I stronger, I don't know about that. But I do know one thing. I'm not dead yet. I'm too stubborn to give up fighting for better. Better for my girls.
Her kidneys look great and her reflux is all but gone! This is a good sign.
Moving on to Caitlyn!
we got the call last week that her UA was finally Clear of Protein! First time in 4 years! She's off abx completely. Still on the Ditripan 3x daily and Cath 3x weekly. But everything looks great! We'll go back to Boston in June for a checkup with her Uro. If all is well he'll stop cath totally!!!!!!!
