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.

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!

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.

Finding time...

The biggest problem I'm having with training is time. There just isn't enough time for everything everyday. The training itself isn't that bad because I'm doing the run/walk program. I'm not in bad shape, I'm also not pushing myself too hard- after this marathon I still have 4 kids to take care of so I don't care how long it takes to run/walk this as long as I finish in one piece! I'm up to 7 miles for a long run/ walk and I'm doing a 15 minute mile. I've been consistently keeping that pace since I started training in June. I'm pretty impressed with that time since I'm just a beginner. On the "off" days I've been doing wii fit with my kids. I work out for an hour or 2 and it's a family activity that they LOVE. It sounds like it's not a work out but it is and if you put yourself into it you really sweat it up. My favorite is the step and super step. It is so funny to watch the "mii's" work out with you! I've also been swimming and walking on "off" days- always with my kids.

On the run days I have to figure out how to pry myself out of this house. There's no great time to leave a house with 4 kids! There's no "off" time that works for everyone. I've been running at 5 or 6 in the evening. I cook dinner and simultaneously bathe and pajama the kids, eat then clean up a little then out the door. The kids and Anthony finish the clean up and then they ride bikes or play until I get back- yes in their pj's. I love running at this time in the evening. The sun is setting- it's beautiful to watch from my journey around Glen Cove. I don't have an I-Pod and I don't want me- I like to think while I'm running and walking. It's the only time my thoughts are uninterrupted. I've only been street running, since that's where the marathon is I need to know I can do it. Even thought I'm drenched in sweat when I'm done I feel fresher than when I started. Running definitely burns some of my NF anxiety away. I take a quick shower when I get home. Then I'm ready for reading and tuck-ins. It's not easy and truthfully I won't be making running a regular part of my life. I hate missing things with the kids and when you have 4 kids it's impossible to be everything to everyone every minute anyway forget about if your trying to do something like this. It's just too hard to fit running into my life at least 4 times a week. The mornings are rough because Anthony leaves at 5:30- that's just too early, I'd have to run at 4a.m.- no way! My days are filled with dropping of and picking up kids, Dr. appt's, library trips and my daily trek to at least 2 places to try to get a raffle donation or a business sponsor for whatever fund raiser I have coming up- it's endless. It's really been tough fitting in the miles, especially as they add on and take up more time.

I'm not sure how I'll keep it up when school starts, but like NF I'll take it one day at a time, I'll live only the day I'm in and I'll change things up as they come up. When I cross the finish line it will be worth it, all the adjusting and juggling the schedules around. I hate wishing away days or time- but I am looking forward to November 2nd- the day after the marathon!!!

Oh how far we've come...

A year ago our life was so different. We just had our fourth baby, Alexander. We had just taken Julia for an MRI and not too many people knew Julia had NF, she didn't even know. It was just too painful to talk about and still is, but we had a bad scare and that changed everything. Julia had an MRI of her brain and spinal cord. She was having some issues that any kid could have but if you have NF could indicate problems.

I had all 4 kids ready to go. The 3 big kids were at the back door and I was strapping the baby in his car seat in the hall, we were going to meet Anthony for dinner. Anyway the phone rang- I saw 212 and that's the Dr.'s area code so I picked it up. Julia's Doctor explained they saw a "spot" near her bladder area. It could be nothing, could be something, but with Julia's history of bladder issues we had to follow up and get a scan of her entire abdomen. This meant another MRI under anesthesia. It meant we could be entering a God awful time with Julia. NF tumors are hard to get rid of. If they can be surgically removed but they usually grow back. If they can't and the tumor is growing or effecting your life, they try chemo or radiation. I hung up the phone. I felt volcanic. I picked up a winnie the pooh bus that was sitting in front of me and I threw it. I threw it so hard it smashed into the wall behind me and left a large hole. I know I shouldn't have done that. AJ is the only one that moved everyone else froze. He came over to me because I was crying and my 9 year old hugged me and said "Mom, are you ok?" Then Julia and Jacqueline walked over and Julia, in her ladybug style asked if we could go eat right now.

I just started laughing and crying and we met Anthony for dinner. I wanted to cancel our life right then. I told Anthony about the call while we ate. Alex's christening was the next weekend, the day before the next MRI, but Anthony took over. I just went through the motions during the next 2 weeks. I cooked, changed diapers, cleaned up, hardly slept and I cried. I cried through days and nights and sometimes tears would roll down my cheeks on automatic and I wouldn't even realize I was crying until one of the kids would ask if I was ok. I was in a daze and I was finally admitting something was very wrong with my daughter. My head was heavy, my heart was broken.

Anthony took over. He wouldn't let me cancel our life, he organized the Christening, and kept us moving through days and nights. I have such a wonderful husband because when he noticed the hole in the wall which was the next week (I didn't bother to tell on myself). He asked " Who did this" I said "Me, the dr. had just called." I didn't apologize and I never will. He just looked and said "OK" got spackle and fixed it. We got lucky. The spot was discovered to be a shadow after a complete abdominal study. This event launched us into action. We came too close that time and I felt guilty everyday thinking how could I do nothing to help my daughter? I thought a lot during those days about Julia's future. I decided it would be much easier for her later if everyone was educated about NF now. If they learned about it now, she would have less to explain later. I didn't want NF to be a secret we were keeping. I wanted it to be the way our family lived, I wanted to teach my children how to manage this in a positive way. I spoke to a lot of people that have NF and asked them what made a difference for them as they were growing up. I called The Children's Tumor Foundation and signed up for The Staten Island Walk and they asked Julia to be an NF Hero. I still carry that helpless feeling, but the fundraising, the running, everything we do helps fight that. It gives us the only control we can have. A.J. turned to me the other day and said "I love planning this carnival, making the decisions. It makes me feel better." I agree A.J. -it's the only choice I see.

This is the reason I'm training for this marathon, the reason I'll run, walk, I'll do anything. I have to know I did everything I could to help my ladybug girl. I'm a really lucky girl because everything I want to do my family calls and asks to help, my husband never says I can't- he always says "Tell me where to go and what to do and I'm there!". Really there's nothing better in all of this world than working on something that's much bigger than just you, knowing that we're helping so many people and children- I'm proud of us this year!

It's all Priceless...

Julia feels better! She slept all night and woke up, ate 2 pancakes and was off to celebrate her little sister's birthday. Thank you, God! I really hate when Julia wakes up feeling sick in the middle of the night. It really means she's not feeling well. I was really getting worried. Julia kept up her regular schedule, she went to math camp this week, but she was laying lay at home. My deadline to call the Dr. was this morning because tomorrow all I can get is the service and I hate calling Dr's on Sundays. I also despise taking Julia to a walk- in med center or really anywhere where the doctors don't know her medical history. NF is such a little known medical problem that it's just not worth the stress. Her regular Doctors and NF specialists are the only people I trust with her, it's annoying when other doctors tell you something that's not a fact about NF. It becomes much scarier and then I really get worried. I also tend to drive myself and Anthony crazy- I'll ask him the same question like he's a Dr. and can tell me the answer. A few months ago I told him it would be really helpful if he could go back to medical school! I'm nuts!

It's amazing how much we have to trust Julia's doctors. We are literally trusting them with her life. We have to trust everything they say with a faith that equates to the faith people have in God. If your in this situation you know exactly what I'm talking about. When we had Julia's first MRI due to her continuous headaches we found out that Julia had suspicious areas in her brain stem. We have to trust that these experts know exactly what their doing. We have to have faith in their expertise in their care of our ladybug. Easy to say or write about but very hard to follow on a daily basis. We love Julia's neurologist- he came on The Today Show and gave Julia an award. He's so great because after we leave his office we think of a questions, probably one he answered for us already, and he always calls me right back or e mails me the answer. I prefer to e mail him and then we can re-read his answer over and over. It's difficult to digest all this information. I feel like a person whose faith is shattered. I have faith when I'm in church, which is rare, or in the doctor's office and I walk out and it disappears. I spend days searching, trying to get it back. I read about other people's very strong faith and I pray mine returns. I'm thinking a good first step would be getting myself and the kids back to church. Wish me luck!

In other news this summer my large family is really becoming a meshed 6 pack. That first year after a baby is born is such a magical, crazy, wondrous adventure, one where every person has to find their new spot in the family. My fantastic four are falling into nice little spots! Anthony has been home a lot this summer, I only worked one week of a camp and we've just been enjoying each other. Planning the carnival together has helped that. The kids feel like their helping Julia in the only way they can. A.J. and Julia planned all the games for the carnival. The kids and Anthony built a bunch of them together- wait until you see the potty toss! My very fabulous friends and family have volunteered tons of other things. I am floored everyday by people's generosity. Melik Studios in Florida (thank you Cynthia!) e- mailed me and offered to make all the signs for the carnival, it's been amazing how many people have called or e-mailed me and offered to do things. The teachers in my school who volunteered to run the NYC Marathon, my friends who put together and drop of baskets for me to raffle off, Glen Cove Beer Distributor- he loaded my car full of soda and water for free, just everything from so many people. Thank you doesn't seem like enough, but Thank you! Fundraising is difficult because it's very hard not to take it personally. It is personal- it's our baby girl. It's hard to hear a no and try not to be angry, we're only human and we feel like we are literally racing for research, a race against time. So thank you all very much for not making me have to ask you, thank you for just calling and asking me how you can help there really aren't words enough I can say for what it means to us. I print out the e-mails, the facebook comments and I save a flyer from each thing we do or go to and put them in a box that I'm saving for my ladybug. Someday when she's old enough to understand I will give her her ladybug love box and she will know how many people have been rooting for her. That's priceless.

It's all in your perspective...

This vacation from NF I though I would be having isn't really happening at all. Julia has frequent headaches, stomach aches and sleep issues. I have to watch the frequency of all of these things. I think with an adult you are more aware of what's normal for your body, so a different more painful headache or stomach ache would be a signal that something's going wrong. For a child it's basically a watch and wait situation. We're very careful not to give too much attention to Julia's complaints because she complains all the time. I track the times she has such bad headaches that she falls asleep, asks for Tylenol or puts a cold cloth on her head and lays down. The stomach I watch and see if she stops eating, has to go in the bathroom a lot, and sometimes she'll lay with a bucket. NF is associated with pain, especially headaches and stomach aches. What we're watching for is a change in frequency or severity. New pain can mean a tumor growing on a nerve and it could cause the pain. That's a little tough with a very dramatic almost 7 year old. I always say "Your fine, what are you playing now? School? How nice. Whose the teacher?" I try to deflect her attention. If she stops playing, lays down and wants company I'll ask where it hurts, get her a drink of water and tell her she should take a nap. If she's ok enough she'll get up, she hates napping. If she's really feeling sick she goes to sleep. Julia is entering day 3 of a bad stomach ache. She says it hurts in the middle of her stomach and she keeps pointing and saying "Right here mom, right here!" She's also eating less. I'm going to give it until Saturday morning. If it still hurts I'll go to our pediatrician first- hopefully it's a virus.

The sleep issue is another problem because not enough sleep or a bad nights sleep can cause headaches, stomach aches and behavior problems- all of which Julia has. Julia will wake up a very grouchy ladybug after 10 to 12 hours of sleep. Julia falls asleep on car rides that are more than 2 minutes. She wakes up and jumps into my bed at 2 or 3 p.m. 2 or 3 times a week, complaining of bad dreams. Her dreams are awful and I pray daily their not some sort of premonition she's having about herself. Her nightmares are the same over and over. We've kicked around doing a sleep study. If we could solve her sleep issues it could solve her other issues.

Every time I hug Julia or she curls up on my lap I feel a tidal wave inside me, my stomach just twists and turns. I want to take the NF out of her, take away the pain she feels, I want to remove any chance of danger from her little tiny life. I want to hold her all day and protect her. When I look at her, listen to hear, hear the way her whole body laughs tears fill my eyes. This grief will never ever go away. I miss her and she's sitting right in front of me- but what I miss is the way our life was before NF. The carefree way it used to be. I miss thinking that a stomach ache was just a virus, that a headache was just a cold. No more small worries in my world.

I hear other parents chatting in stores, at birthday parties or at parks and I'm so jealous of their complaints. I hate that jealous feeling. I listen and cringe and bite my tongue. I smile and nod and I wish my world was all about the ear tubes, the virus, the bed wetting. To us that seems so simple. I usually walk away my eyes of course filled with tears but there aren't too many days their not tearing up. Then I think there are so many parents, many parents that I now call friends, and they would give anything to hold their children. They would want my life because I am very, very lucky to have all four of my children to hold. I never for a minute of any day take that for granted. From their perspective this stress I have is by far better than the longing they feel. I think of those parents everyday. My heart truly goes out to them for the loss they feel is what I fear the most, it's what fuels all my actions and decisions. It changes how I think, feel and live, it makes our good days sweeter.I think of them and remember it's all about perspective.