Thursday, August 27, 2009

Birthday Wish

Tomorrow ladybug turns 7. It's unbelievable what these 7 whole years have held. So much happiness and so much sorrow. I keep remembering the 9 months that led up to her birth. I took a pregnancy test on December 31st, 2001. I couldn't believe it was positive! I had a feeling but I kept thinking something was going wrong. I felt fine and I had been so sick when I was pregnant with A. J. it just didn't seem right. We used to go to church back then and that morning I prayed that I would get to know this baby, I asked God if I could have her for an hour. I was also convinced it was a girl. I remember I felt like I was making a deal with God. I kept thinking your not supposed to ask God for anything, but I did anyway.

The months rolled by and I never shook that feeling that something wasn't right. I was shocked when she was born and she breathed. She was beautiful all pink, red and she stared up at me. Julia didn't cry she just looked like " Oh, mom there you are." I held her for a long time on my stomach. She had just slid into the world and it was unbelievable. She was so quiet and just laid there looking up with her wide brown eyes, my sweet little ladybug girl. After a few days I just figured I must have been wrong, she was fine, born, breathing and here with us at home. We noticed the cafe au lait right away. It was on her left arm from the moment she arrived. For a few years our doctor would count her "polka dots" every time we went for a check. He kept telling me not to worry, until there were too many.

Now it's 7 years later. Lucky 7, I hope. I hope this year there's a breakthrough. I hope this is the year they figure out a drug that stops tumors from growing. That's my wish for this year for my girl, may she get the only thing we all need, a cure.

Wednesday, August 19, 2009

Equality...or lack of...

There's just no way to have a house full of children and treat each one exactly equal. I'm finding it impossible. Especially since Julia has NF and I suspect every house with a child with any special need, its impossible. I certainly love them equally! It just seems that Julia and Julia's needs far exceed the other 3 kids 90% of the time. That's just how the chips fall around here. I keep thinking that A.J. probably has the hardest time adjusting. He had a whole life before she was diagnosed just like us. A.J. was 7 when NF entered our world. Our lives completely changed after she was diagnosed. It's like we were all reborn with NF. My little 2 will never know what it was like not to have Julia having NF, there is no before for them. Jacqueline was 11 months old when Julia was diagnosed and Alex was born the year after.
I will always wonder what they would have been like if Julia was healthy. I will always grieve this diagnosis and what it has done to us. I do know that because of NF my children all have an acceptance of people that some adults don't have. I hope 3 siblings is enough support for Julia as she grows up. I hope my fantastic 4 can deal with all that this life brings them. Anthony has been home all summer and will be working much less than he ever has in his life. It's been a really great family summer for us. The kids have had the benefit of 2 stay at home parents for 10 weeks and during this time we really tried to give them all the attention they deserve. We went to the beach, swam in the pool, rode bikes, ate ice cream and made smores. It felt like we were living in another decade for this summer, a slower time for us. We all talked a lot! I'm so grateful for this past summer, a season where we regrouped and became a stronger six pack. It was just what we needed- thank you recession!

Wednesday, August 12, 2009

Fund Raising Success!

Our carnival fund raiser was a huge, huge success- $5846.00 en counting.. It was also a ton of fun! The best part was the turnout- there were over 300 people that came to support our ladybug girl. A very unexpected, wonderful thing that's been happening for days is people keep knocking on our door with checks made out to The Children's Tumor Foundation- one was for $400.00! We don't even know who the people are, it's amazing. The local paper The Record Pilot did a front page story about us 2 days before our charity carnival. I think that helped, people have no idea what NF is. I try to stick to the definition of NF when I'm talking to people, it's so confusing because it manifests itself differently person to person. It's very difficult to find 2 people with the same complication of NF. I try to also keep a lot of the issues Julia has private- I don't want her to feel embarrassed later. I talk about her growth and her brain because those are 2 of the complications she has I worry the most about. At least 20 people volunteered at our carnival- half of whom I'd never met before. They stayed all day and interacted with the kids- they were just fantastic! Thank you!

Another really fantastic thing that's happened is the amount of people we see walking around Glen Cove with Team Ladybug shirts! My kids get so excited! They scream and jump up and down "look. look- its our team shirt!" It's been so much fun to run into people wearing them and Julia just beams when she sees it.

I'm starting to feel like we're making an impact. At least in the awareness we've raised. The best part of this is as Julia grows up she won't need to define NF to every person she ever meets. It's out there, accept her for what she is or walk away from us. It is what it is and my ladybug is one very lucky little girl- so many people care about her, so many people love her.

Our Team Julia Ladybug has raised 35 thousand dollars this year for research to find treatments and a cure for NF. I sometimes feel like we're racing against time. I feel like I'm trying to outrun NF before it has a chance to hurt my little girl.