I'm listening to this song daily lately. Who was Savannah? Eleven year old girl with cancer. Strong, determined, fighter, loved the color lime green, loved by so many. She was sent home on hospice and died at her home surrounded by mom, dad, and baby brother Luke. Her 11th Birthday was at the beginning of February sent her a package with her bracelet in it. I'm loving all the work I'm doing for the www.colesfoundation.org . Yes, I keep up with many of these kids and have gotten to know the parents personally of many. Aaron, the founder of cole's have had some discussions lately and he asked me if I would do more work for the foundation. I'm honored just told him let me get through the brunch easter weekend.
Oh yea my family decided the week before Easter would be a good time to go on a family vacation to KY. My little sister, her mother-in-law, my brother-in-law, nephew, mom, and dad decided that since many of the relatives had never met my nephew or brother-in-law it was time to meet the family. At first when I figured out they would be gone for Easter I was sad. The fun things about Easter? Going to church with family and watching the excitement of my nephew on his second Easter. Plus the day before was my sister's birthday. Guess although stressful at times I still enjoy family get togethers. Maybe it isn't as important to the rest of my family because they all have a husband (other lives) and I don't. Maybe once I am married it won't be important. I guess loneliness as something to do with things. When I feel like I matter or can make a difference I will go all out. My idea on how to spend Easter was to give back. I chose the Barbara Bush Children's hospital(where Lyssie was treated.) I organized a brunch for the families. Lot's of work and a few hundred dollars later it was worth it. For these families going through so much to enjoy a brunch and time with their kids was wonderful. I learned a bit in the process too. Like Not only do I have trouble asking for my needs but asking for donations was very hard for me to do. Growing up I had no problem selling cookies, subs, fund raising etc but for some reason I was afraid of rejection. Something to investigate. I'm losing my voice for others. Why is it so hard to ask people to help others or help me? I even feel bad about my therapist sliding scale for me. Feel like I shouldn't take up her time. Feel like I should just be greatful enough that she sees me once a week. I think this is what happened with my drs. I guess I felt like it really didn't matter that I wasn't receiving quality of care because at least they were seeing me. Get it? I really hate being a charity case. Grrr If I could just get a full time job with benefits I wouldn't feel so bad. Anyways so the week before Easter was my vacation week and spent the day with my Lyssie, and then the days with Abby and company, drs apts etc. We did have a big Easter egg hunt lunch on Saturday. Four babies under two. How are we gonna top this? Over 200 hundred eggs. lol. I had made "baskets" for each kids. I did sand buckets with fun stuff in it. Rule was do not put anything in them that Abby could eat. After the brunch I headed up to Maine to get all the food donations and spent the night in the hotel. After the brunch was done came home feeling really yucky because it seemed after the brunch I was a sickie. Grrr Later went into sinus infection, lungs oh so fun!!! Still on exhaust.
I wish I could figure out a way to share some of my Lyssie pictures on here or some of the videos that have been made but not on youtube. Last weekend at this time I was very worried about my Lyssie. She wasn't doing well at all. Was showing signs of more pain. I know how tough Lyssie is so when she starts to talk about her owie you know it's bad. I started to worry that I wouldn't get to say goodbye when the end came. People can't see her when her anc is zero because it means she has no immunity and if she gets sick it could spell death. I want to ask Cindy if she can make sure I get to say goodbye. My thoughts ugh once she's dead the body isn't Lyssie anyway. They are going to cremate her. My thoughts sitting there holding Lyssie. Can't we just stop time? I wouldn't want a piece of her once she is dead. I just wanted the feeling of holding her in my arms to last forever. The above song reminds me that heaven is a wonderful place and all the other children ahead of Lyssie will be there for her.
I won't say I've had my doubts about the whole question of prayer and weather it works or not. At one point I questioned it. You know why pray if God already has everything written out in his plan book? He is the one that ultimately decides our time to go. We are placed on this earth for reasons and when we have accomplished our job then we are to go. Lyssie, like many children that have gone through childhood illness, tramua etc have much to teach those around. Everytime I get into my car I am constantly thinking of all the things people teach me. I am a teacher and in that role it is my job to teach my kids but really sometimes the kids teach us. Truth is Lyssie is a miracle! In September the Dr.s gave her six weeks to three months. I'm in AWE!!!! Thanking God for each day he gives this precious little girl. Thing is everybody's days could be up tomorrow. They just have advanced warning. They can give her the last wish, say their goodbyes etc. We never know when our time comes but when it does I want my life to have purpose and meaning. Giving like there is no tomorrow, spending precious memories with the ones I love, believing in hope and miracles, being taught and feeling the presence of GOD in my life. It is Lyssie and many others that teach me. I've been working on a living lyssie blog in my head it just hasn't hit the screen. Well some of it is saved but everyday I think of more. I want to live Lyssie's lessons.
Grey is for Brain tumor Awareness at this is the month of May!!!!
Lyssie Passover weekend!!! My Earthly Angel!!!!
I want to give her the World and show her what it means to be loved!
Because I can't take it all away. I can show her love!!! Thank you God for allowing Lyssie in my life.
