Sunday, June 27, 2010
It was two weeks yesterday since Allison was diagnosed. Although our attitudes and schedules are adjusting, I still can't help but feel the pit in my stomach. It's the pit of the unknown....the pit of what our future holds. Those of you who know me know that I am mostly optimistic and that I take the lemons thrown at me and make lemonade any day of the week, but this is still one heck of a lemon to squeeze and I know it's going to take nothing but time. Mike is also dealing with this in his own way.
I've had some good conversations with friends this week, old and new. I've enjoyed talking with the mothers who have children living with this disease, and hearing stories similar to mine. In fact, I just got off the phone with a friend who gave me the most candid recap of her experiences. I'm so appreciative because she didn't hide behind the "Oh, it's going to be OK..." type responses. It WILL be OK, I know that. Though the journey to getting to OK is going to be rough. There will be ugly involved, folks, plain and simple. The good news is that the good will outweigh this ugly. But, God please grant me the strength to get through. My new reality: There will be hospitalizations. There will be times when I have to trust people I don't know. There will be times when I have to trust Allison. There will be times when people let me down. And, there will be times when we feel alienated. But the hardest to digest is that all of this affects my child's HEALTH. There is constant unpredictability in the horizon. I guess this is what I'm struggling most with right now. I love roller coasters, but not emotional ones. Any trouble I've had in my past I've been able to work through it quickly, but this is not something that has an expiration date, and not something to be taken lightly.
I've done my best to prepare for this 'unknown', and that's all I can do. Everyone that can work with and for me is...well, most everyone. What I'm still trying to digest is that this is going to be a constant fight, and not one that we can lose. I wonder how others who's babies were in with mine at the hospital and received the same blow we did are handling it?
I want our fun back... Maybe I'm expecting too much? For our first trip out of the house together to do something fun, we were going to go swim at my Grandma and Grandpa's condo pool. Though it wasn't as fun as I remembered of our previous pool trips last summer. Alli now travels with two more bags than she used to--one for supplies and one for snacks. Although I had made sure we were going good to be able to make the outing, Alli's sugar was low when we got there. The scary part was that she didn't show any signs. If I can't read her (and I have been able to, usually), how am I to prevent another calamity? My Aunt wanted us to stop at the pool before going back to Grandma's for lunch...in our old life, NO BIG DEAL, however I knew we needed to get to Grandma's and fill Alli's belly first--then we can play, so I was really in a rush. I didn't get Alli out of the car, which was a good move on my part because when we got to Grandma's Alli's sugar was 64. I don't think anyone can truly understand the urgency that frequently pops up in our new daily activities unless they have been through it. I'm the first to stand in line and say I didn't. Our second trip out was to go to Home Depot. Nothing exciting, but I wanted to buy a water hose so that I can hook her sprinkler up. Alli was in a great mood and enjoyed riding on the lawn mowers. I've been having a lot of anxiety taking Allison out of the house since all of this happened. I really hope that lessens.
My blessings: In two weeks we've been able to get Frank, Eileen (Mike's Mom & Dad) and Ashley trained to take care of Allison. Meal schedules are smoothing out and Allison is more accepting than she was in the beginning. Allison's sugar is a lot lower than it was even a week ago, and she seems to be back to her old self (but not without challenges ;)). And, my boss was able to work some things out for me at work, so that base is covered, too. We're moving in the right direction, and forward is the direction we will continue to go.