Multiply by 10's

Our rough week is getting better. Julia has stopped crying and is asking me tons of questions- which is fine. I never could have dreamt up or predicted this was coming and at only 7 years old. I really thought Julia's innocent childhood would go on for a little longer.

Julia asks all sorts of things "Will I need the medicine that makes my hair fall out?" , "Am I going to stay at the hospital?" , "Will I have NF when I get married?" and on and on...

I feel physical pain when she asks each question. It makes my heart twist and my stomach lurch. I'm trying very hard to just be matter of fact- and say things like "I hope not honey- that's why we are working so hard to raise money. That money helps the doctors to fix NF and make medicines." or " We have to focus on everything positive, smile!" or " Julia- you will be fine." I keep trying to smile and stick to the regular routine, not easy.

And then I think that going to all these appointments and doctors- which are a necessity and have been invaluable- have cost my children their carefree days. No matter how much family fun we have or vacations we take- its different. Sloan Kettering is a fabulous, her doctors there are amazing, but taking your child their is awful. Sitting on the 9th floor in the peds play room with her coloring watching all the children that are going through so much more is heartbreaking. Knowing that we are only a fine line away from that is another reality that physically pains us.

I've been struggling with all the "regular" things kids go through- like being left out or not being invited to a favorite friends house or missing a birthday party. I can't escape NF. It is different- through my vision of Julia there is always that edge- It's always there, always gnawing at me. If she didn't have NF how different would her life be or how much would remain the same? Its a strange and useless though. I just can never see it without NF, even though it's stuff every child goes through. I think I partly think Julia and children that have issues should be excused- they have enough. So why aren't they just invited to the party or the play date or whatever it is? It's just awful. I know you can't invite everyone everywhere. I just can't stand Julia to feel upset about anything. I feel like she's upset about enough. With my other children it's different- maybe I think their tougher? Maybe I think they will endure less in their lives- an assumption I'm falsely making? I don't know.

It's a rocky roller coaster ride ups and downs that make your stomach turn, make you scream to get off but round and round we go. I'm so thankful Julia isn't wracked with sobs, but I know that's just for now. Each time we go to see teams of doctors I know she knows more and more.

Tough Stuff

We had a rough week. Julia had her regular check up with her neurologist this week. We were discussing the recent changes of her headaches and itchy skin. Julia all the sudden said "Wait- I'm gonna have NF when I grow up?" I almost threw up- I felt like I got slapped in the face and after the Dr. answered she did too, not because of his approach but because reality can feel like that. Her Dr. was so nice- he started telling her everyone gets something and NF is just a part of who she is. I on the other hand started crying and could hardly speak. I was saying "Its ok, don't worry" which makes no sense looking back. I wasn't expecting Julia to ask this. I thought she understood that NF was a part of who she was. It was like a tsunami crashed through my house over the next 24 hours. Julia sobbed inconsolably. She cried through lunch, the ride home, dinner, her bath, it was just terrible. A.J. was all upset too- he kept saying things to her like "Julia your focusing on one nutty thing- if you didn't have NF you wouldn't be you." I can't remember a time where more people in our house were as upset and crying as much as this.

A.J. is an amazing brother. He is only 10 years old and his answers to Julia were so deep, so though out. Julia kept crying and asking to be "re-born". I was holding her in my lap, crying too and trying to say the right thing, searching for the words that would make her feel better. None worked. A.J. was so kind- he told her that if she was re-born she wouldn't belong to us and we needed her. I never expected A.J. to ever step up to this type of occasion- who would? He's a terrific kid- but these situations really show just how amazing he is. Julia is so lucky to have a big brother and so lucky that it's him.

That night I slept in Julia's bunk bed. I held her while she cried and whispered that I loved every part of her. I told her over and over that each piece of her made Julia Julia. I hardly slept. I kept looking over her little face. I felt like I was in physical pain. As always I wished I could take the NF out of Julia.

Julia kept saying she wanted to be like all the other kids. She wants to be like everyone else. I understand completely what she means. I kept telling her everyone gets something and I tried to find examples, but honestly there aren't (thank God) too many kids with issues- and of course we have been so lucky with Julia's issues. We'll see. She seemed better just very tired the next 2 days. She had to adjust I guess. We have 1 more appointment in this round of checks- then hopefully we'll be "off" for awhile.

Reality can be like that- a slap in the face, a tidal wave, it's awful. Its much worse when your only 7 and 10 years old. I think it's difficult for my children to understand exactly what Julia has. Its harder when there are only questions and no real answers- even from Julia's doctors. Uncertainty is so unsettling- even when your being positive and doing positive things like fundraising.

The White House Visit

We were invited to a White House Holiday Tour! Which was very, very nice. I has written a letter, actually several, to The white House asking President Obama and Michelle to attend my fundraisers. I asked if they couldn't come could they send me something to raffle off- like a set of White House Towels or something. I never heard an answer not even a form letter so I mailed a letter every week for 2 months. They must love me! Finally I get a response letter saying basically sorry- it's against White House policy to send anything to raffle off. We end up getting a phone call inviting us to The White House. They are trying to give children with medical problems or special needs a treat.

The holiday tour was really nice but really it cost a lot to buy all those train tickets and go to DC in one day was a real pain. It was about 12 hours of traveling for a 45 minute walk through 5 rooms. The kids really won't get this until their older so it wasn't such a treat for them. Then the White House screwed up and my mom ends up not getting in, they lost her information. I was so upset. She came all that way to stand outside the gate, it was so disappointing. My kids were all upset, we couldn't believe it. I saved the email with the white house contact confirming our tour for 7 people, not that it makes a difference. They didn't even apologize.

Also they specify no bags and people were going in with bags. Why bother having rules?

So Much Going On...

We've had a lot going on. I guess that's life with 4 kids! Throw in NF or any disability/ health problem its a whole different ball game.

Julia was always a really itchy kid. And by itchy I mean rolling on the rug or walls cream never fixes it itchy. I have tried every kind then Julia cries "Why am I still itchy?" I answer "The cream has to sink in, it takes awhile." I don't want to tell her about neuropathy yet. I told Julia there was a medicine but she won't take it. She told me she doesn't want to drink something everyday. I don't blame her. And even thought she's only 7 years old it's her body and her decision. I told her I'd get the medicine and if she's very itchy she can decide if she needs it.

Julia's headaches have recently escalated to migraines. Julia used to get headaches once in awhile after school. She would come home and cry that her head hurt then go to room hide under her pillow and fall asleep. Now she wakes up at all hours 2, 3, 4 am - she calls out "mom, mom I can't move!" I run in and she holds up her head and says "Mom my head hurts I'm going to throw up" I carry her to the bathroom. After a few minutes she asks for an ice pack and my bed. We crawl under the covers, she holds the ice pack on her head and falls asleep. I lay awake. My mind runs. I can't seem to shut off what progressive is going to mean for Julia. If you have migraines that wake you, itchy skin that drives you to stand against points or lay on rug to scratch yourself, how in the world is this going to be when she's 15? or 20? or 30? I know that I should only deal with today. I know I have no control over tomorrow. I just can't help it. I just sort of lay there and wonder and cry softly. I appreciate every moment with all my children. I know I'm only really borrowing them from God, even though though I'm not very religious right now.

It's very hard for me to watch Julia's pain, which compared to other NF children is mild. We know plenty of kids on chemo. I just will never understand why a little girl whose 7 has to get a migraine headache. Or why she itches until she bleeds and feels like she wants to crawl out of her skin. It fill me with anger, watching and trying to manage this pain. It makes my mind churn and my heart hurt. It makes me question every belief and the faith I used to have growing up. It really makes you wonder when you live with this "WHY?" !!!

Although I'm looking forward to so many things and trying to focus on them, this is really some life. I wake up some mornings and as my feet hit the floor, I think "Really? This is real?" It's a lot to digest.

A Marathon Week!

What a week! We had our annual dinner/ auction benefit for Julia on Thursday, Friday The White House called, Saturday- Halloween and pasta dinner and Sunday- NYC Marathon, which I ran in. It was just wild.

I should start with our auction dinner- we raised somewhere around 25 k!! I feel like we're really getting somewhere- we have raised 80 thousand over the past year. All donated to The Children's Tumor Foundation. That's a lot of money, that will go towards research to make treatments available for NF.

Next, the White House. I invite the President and his family to all my events. I'm hoping to get some national attention brought to NF so everyone will know what it is, instead of saying something like "What's that?" So he can't come, which I get their a busy family, even though they have 2 less kids then me, I get it he's running the country. I also asked him for something from the White House to raffle but it's against their policy. The really very nice lady from the White House asked us to go to a movie with the first family on Thursday, but there's only 3 spots. I have to pick who can go. I can't do it. I can't go to The White House without Anthony, it's too big. We're a team, we're doing this together or not at all. They told me their would be other opportunities and not to worry, we exchanged information so we'll go together soon.

Marathon- Holy Moly- I ran 16 miles of it! In 4 hours! Let me tell you, I never ever though I'd remotely run anywhere. It gives me a headache, it makes me sick and starving all at once, it's my least favorite activity. The whole experience was amazing!! I am now addicted and want to run and run and run. I cried the whole time. It was so emotional crowds cheering, music playing, running for my daughter, racing for a cure, against time, like real life. I knew my family was waiting at mile 16. As I got closer I got slower due to a mile long uphill bridge, hate that bridge. When I saw them I ran and cried and finished. I was too overcome, seeing my ladybug there. I just wanted to go home. Anthony picked me up and gave me a piggybacked me to the car. I was so glad I choose not to do The White House without him. How could I leave him behind?

Next year Anthony and I will both run the marathon and together we will finish.

Ugg...

My little brave ladybug did really well during her unsedated MRI but she was blinking and moving her jaw. This caused motion on each "slice" so we have to try again. We are going to give her a Valium and see if that will make her sleepy. This way she will be still enough to get good pictures. It was so disappointing but we didn't want her to know that. Now we wait for the next appointment. ugggg... This is tough, seeing her tiny girl face in the MRI, she held me hand the whole time. I had to stretch into the machine to reach her. Oh my little girl, if I only I could kiss you and make it all better.

I know this could be so much worse. I know that I shouldn't be so sad that we have to go for another MRI, but I am and that's that.

Our huge fundraiser is coming up. It's so good to focus on that. A few days after that I'm running the NYC marathon for Julia. After that I have no idea what I'll do with all this energy. I'm sure I'll dream up something....

Scan-ziety

Julia's next MRI is on Saturday. It's all I can think about. We're trying this one unsedated. It will be her first without anesthesia. She gets so, so sick from anesthesia I'm really hoping she can do it. We've been practicing laying still- strange right? Then I say loud "BEEEEPPPP" . We also told her she can eat before and choose anything she wants at Toys R Us after. Julia is so excited about Toys R Us. I think I should get a present too- like a Tory Burch bag- but Anthony disagrees. He says it's part of my parenting job! I was going to remind him that there aren't many parents that see, hear, and have to go through what we have too, but I stopped. Anthony can hardly talk about NF without getting teary. I hate the sadness that goes with living this way. I hate the nervous questions AJ asks me. I get tired of trying to always be upbeat and I feel like my answer "Everything will be ok." is a lie my children can see right through.

I'm also so worried about her brain. I just want her to be fine. I want that brain area that's acting like a tumor to disappear. I want the results to be fine so bad it makes my heart hurt and my brain churn all night. I can't even imagine the future. There are so many days when I feel like I can think of nothing else but time and how quickly it passes. There is a strength you feel when you know your living with a progressive disorder- you value all the time you have like it's a treasure. It's very difficult to think ahead. We really live day by day. It's just too painfull to think about our very unknown future.