Rough week...

We started the weekend getting ready for Megan's sleep study knowing that we may not see my Granny ever again. The four of us went to see her. Megan waved to Granny. It was a very touching moment.

Then, we packed our van and went to Indianapolis for the sleep study. Megan was still fussing quite a bit. We gave her some extra pain medication for the trip so that it would not be unbearable. We checked into our hotel and got ready for her appointment. We had to pack all of her medications, breathing treatments, diapering supplies, etc. (You would think we have about 5 kids if you saw how full our van was.)

I took Megan to the sleep study. I took pictures of her wearing her gear, the mom bed, etc. I was going to write this great post about sleep studies and what you go through during the event. It looked for a while that Megan was going to go to sleep. But, she got agitated. And, more agitated. Annnnd, MORE AGITATED. She NEVER went to sleep. When the time was over in the morning, I was frustrated. I don't want Megan to feel like we are asking too much of her. I have watched my Granny say "enough is enough" most recently.

My Grandpa Brown (Granny's husband) was a 30+ year kidney transplant survivor. He lived every day of his life remembering the gift that he was given, not only from Christ but his brother as well. He asked my parents to get married a month sooner in 1972 because he did not know if he would survive. Not only did I enjoy a wonderful relationship with him and granny, I have pictures of them holding both of my children. He knew what a gift just being able to live every day was. I want my family, and especially Megan, to feel that way too. I wasn't supposed to know my Grandpa. But, God granted us more time to know him. He believed in fighting for each moment to improve life until there were no moments left.

I am torn. While I know that Megan's condition is eventually terminal, I want her to view each day as a gift and not too much to ask of her. I don't want her to think that living is just too hard. It's a fine balance, and I am having a really rough time with my feelings this week.

A couple weeks ago, someone asked me how we deal with Megan's hospitalizations and knowing her physical limitation looming ahead of us every time. I told them, "we prepare for the worst, and then hope for the best." I didn't know how else to describe what we go through.

A few weeks ago I found a message someone left on my post regarding Megan's diagnosis. This statement has stuck with me. It says what I was feeling and what I want to continue living. "First, you have to do what you have to do to prepare for death, you pursue health as well as you can without letting it take over your life, and then you live as though you are going to live." This is so hard. And, it is hitting me hard as I say my earthly goodbye to my Granny any moment.