It is 6:30pm and I am in the bed. Not because I want to be, but because I have to be. Erik has taken his parents, Jack and Ella to eat fish at a friend's house. Lucy fell asleep as I was doing her dressing change on her central line. So...that means that I am here until she wakes up and then we will see how she feels. She so badly wants to go see her friends but she is just so tired. And because she vomits when she sleeps, I have to be within arms distance in case she were to choke. Someone has to keep a vigil at all times when she sleeps and tonight it's my turn. Don't get me wrong. I don't mind. I know this is what I need to be doing. But the honest angel on my shoulder tells me I have to admit that I am a selfish, selfish person who just wants to go hang out with friends.
I just want my old life back. I want Lucy's old life back, too. I have grown weary of watching my baby vomit herself into exhaustion everyday. I am tired of seeing my baby put to sleep everyday to receive radiation that, while prayerfully eradicating her cancer, also threatens many unwanted side effects. I am tired of doing central line dressing changes as she cringes with the fear that I might hurt her. I am tired of doctor visits, Physical Therapy, CT scans, MRIs and 2 hours drives back and forth to Memphis every day. I hate watching life go by without her in it. Her friends, her school, softball, swimming. The list could go on and on.
(this is the Buzz Lightyear CT machine that we went in Thursday to check for a shunt blockage. Lucy is such a brave girl and just climbed right up on the table. She laid perfectly still, knowing that the treasure chest was the next stop!)
(Lucy woke up and we went to join our family. She slept the whole time we were gone, even though she insisted on going. I bet we've banked another 4 vomit episodes, too. It's 10:15 and I'm finally finishing this post.)
This, however, is our new life and I guess it would serve me well to get used to it and stop complaining. Actually, I don't complain all that often. If I have to say so myself, I think that in general I've been able to keep a pretty good attitude most days. Don't get me wrong. I have my moments EVERY day, but God has filled me with an indescribable peace that gets me through each day. The reality is, even though I am quite pissed off about the whole situation I am learning to give thanks for various aspects of each of the things I listed above as hating. For example, I hate making Lucy suffer through PT but I am so grateful that she is able to walk and will one day be able to run and play like other children. I hate driving to Memphis every day but I am so grateful that I live close to the BEST pediatric cancer hospital in the world and that I get to be home with my family every night.
(Lucy at PT last week)
Let's see...I hate Radiation but without it my Lucy wouldn't have a chance. There would be no hope (baring a miracle of course.) I hate doing dressing changes but I am so grateful that Lucy does not have to get poked and prodded every day with needles. I think you get the picture. All those things that I hate about Lucy's cancer have been windows to a world of thankfulness and gratitude that I am blessed to experience. No one wants to go through anything like this. It rips my heart in a million pieces to see Lucy so sick. It is absolutely heart breaking. But my walk with God will never be the same. Because I am so torn apart, I have no where to look but to Him to get me through this. I should be so angry with God right now, but I've never felt closer to Him than I do right now.
I'd like to ask that you continue to pray for Lucy's vomiting to subside. It seems to be getting worse and I am afraid that if we don't see a quick improvement that Dr. W is going to want to admit her for observation. We are so close to be doing done with this phase of treatment and I would hate to spend it in-patient. God can take away this burden that she is carrying right now. I know he can. I just pray that he will.
Another thanks to everyone who has sent cards, letters, gifts, donations and most importantly prayers to Lucy. We continue to be so humbled by the love that you all have shown. I will forever be indebted to the people who have allowed our family to come into your homes and you all have showered us with prayers on a daily basis. We are all so undeserving (well, Erik and I are. Lucy is pretty amazing.) I will make this promise to each of you reading, just as I have to God. No matter what Lucy's outcome may be, I will never, ever forget the children and families at Le Bonheur and St. Jude. I will spend the rest of my life "paying forward" the good will that has been shown to my family during this time of tragedy in our lives. I don't know how that will manifest, but I will pray that God will open those doors when the times is right.
****Don't forget to sign up for the Go Lucy Go 5K Run/Walk benefiting Le Bonheur Children's Hospital.****
Going to bed now. These other two beauties need me, too.