Saturday, December 19, 2009

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?

Thursday, December 17, 2009

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.

Thursday, November 5, 2009

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.

Thursday, October 22, 2009


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....

Thursday, October 15, 2009


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. 

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.

Friday, July 31, 2009

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!!!

Monday, July 27, 2009

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!

Saturday, July 25, 2009

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.

Thursday, July 23, 2009

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.

Tuesday, July 21, 2009

A new time for us....

Julia's last appointment for the time being was her eye dr. Everything was totally fine. She needed a stronger prescription for her left eye but other than that everything was great! Julia sat still, listened and really did a great job. I was so proud of my ladybug. On the other hand if she wasn't always a patient she wouldn't be so good at sitting still with lights pointed at her eyes.

I have to admit that I'm so used to watching something, worrying over something that I asked the dr 3x the same question. Are you sure she's ok? I almost expected that since every other appointment was fine, this one would be bad. It's terrible but true. We have been watching so many parts of Julia we've become accustomed to this way of life, living in this state of flux. I basically crashed after that appointment. I went to bed and slept for about 15 hours. I was just physically and emotionally exhausted. I haven't slept well in the 3 years since Julia was diagnosed. The first year was grief sleep- I call it that. I tossed and turned and wondered if this was really happening to me. As I woke up I'd think this cannot be the truth. Then I'd have an awful feeling and realize it was. The second and third year were anxiety sleeps. I would sit straight up at some point very anxious, my mind racing. I would check on the kids, kiss their sleepy heads, go on the computer, try to fall asleep, I wouldn't be able to so I'd plan a new fundraiser. That was also a great distraction. It consumes free time and keeps your mind busy with productive thoughts.

I'm entering a new time, one called live, sleep, watch and try not to wait. A time where I can breath a little easier, not like a regular mom but I'll take it. I hope its not asking too much to stay this way forever.

Saturday, July 18, 2009

Just So Thankful!

We've had all of Julia's appointments in the past 10 days. Not intentionally it just worked out that way. So we've been in and out and all over New York City. Every appointment is stressful, even if we think Julia is fine sometimes something comes up that's very unexpected and throws you for a giant loop. We were the most worried about her growth recently. It added a new layer of questions and concerns. NF children can grow too much or too little. Most NF people tend to have small stature. Of course no one knows why. Julia's Dr. was concerned because she had dropped off the growth chart for awhile. She had hardly grown over 2 years. So the curve you normally see was a flat line across in her case. This could have meant tons of things. Things that caused my mind to run on overdrive for the last three months. Thank God she grew while we waited for this appointment. The endocrinologist we saw was really nice. He was on time, didn't scare us with the many varied and unusual things that could happen to Julia and was patient with our ladybug girl.

Julia is so comfortable with Doctors she chats with them like their friends. It's good in some ways because she's never scared and when they ask her if she has any questions she just talks away. On the other hand Julia can be a little fresh. We're working on that- but I think her firecracker personality is going to be what helps her endure NF and all it brings.

I'm always amazed by the ease with which Julia reacts to her appointments. She always asks "Whats next? The sleeping Doctor?, The check me Doctor?, the spray my eyes Dr?" She asks me several questions each time- boy Dr. or girl Dr.? Do we need to get up early? What's everyone else doing while I'm there? Once she knows the answers she's fine.

Her latest series of questions is sadder for us. Julia keeps asking if she'll have NF when she grows up. Each time I answer yes honey my head wants to blow up. She told AJ she didn't want to have NF when she has a baby of her own. I feel like this innocent part of their lives is going to end. All to soon my babies are going to know the full cruel meaning of what NF is. It's been a heavy load for Anthony and I to carry I can't imagine how my children will do it. It's so sad that my children will never have the freedom I had as a child. They will never know a life without NF.

We are so, so thankful Julia grew. So thankful for more time that's closer to a normal childhood. The relief we feel is unexplainable. We slept tight that night because for now, for today she's ok. People always say "Tomorrow will be better." In the land of NF today may be your best day, tomorrow who knows? That's what progressive means.

Saturday, July 11, 2009


I never was a runner. I never had a great desire to run anywhere, much less a marathon. In fact my favorite activity is drinking diet coke and eating chips by my pool! The upside of training for the NYC marathon is I'm really toning up. I'm getting to look like I'm in good shape.

As you train you build speed, endurance and strength, until race day where you give it your all and get through it. You should be in your best shape by the race. As you live with NF you lose your speed, your health but never your endurance. NF people and their families seem to have an unlimited quantity of endurance. We seem to be able to ride wave after wave of what NF brings. What an NF person's body lacks their mind and their spirits make up for. What NF can never take is your will to overcome, your enduring spirit. I know I can endure this race, I can run these 26 miles for my tiny ladybug girl because I have watched her endure so much more.

The much more important part is someday my four children will know I have done everything in my power to help Julia. They will know how hard I fought for a cure and treatments. Because someday they are also going to know the awful truth of what NF is. They will understand NF as adults, not as children. I'm really not looking forward to that day.

Now they know that Julia needs extra appointments, extra checks to keep her healthy. They know Julia's body works differently than other children. It's been very difficult to explain NF in terms that are truthful yet not stressful and scary. It's a fine line we walk. They know that we worry and that NF sometimes makes us sad, that is impossible to hide from them. They have no idea that the cells in her body are programmed to make tumors grow.

I wish everyday that as Julia grows we would watch her get better and better. Instead we are going to watch our baby get progressively worse. At what rate or time no one can predict. I keep wishing that this would go away and we would see progress, we would watch our baby girl bloom into a healthy woman. It's not that kind of thing, it will be a lifelong battle. Our little girl will grow to be a beautiful woman, she will be the strong firecracker she's been since she was born, but healthy? Healthy is a word I hate, one that makes my stomach turn. Health in my house is for the day, one we can never count on for tomorrow.

Wednesday, July 8, 2009

Tuesday, July 7, 2009

Crayola, Crayola, Crayola...

So we just came back from the Dr. to $1000.00 worth of Crayola materials that we won on The Today Show! So exciting! It was so much fun for the kids to sort through and play with so many new things. We have so much we put together little packages for Julia's NF friends we've met around the country. They'll love a new treat when they have a doctor appointment. We also put aside a bunch of things for Julia's upcoming appointment's. Thank you Crayola! Thank you The Today Show!
As usual I'm worried. I'm worried that Julia has a bump on her big toe. The Doctor said it might be a neurofibroma or might be from her shoe. hmmmmmmmmm... life with NF, always a big question. I'm worried because kids that have neurofibromas end up being adults with lots of neurofibromas. The reality is that adults aren't usually very nice to different looking people. All I want is for my daughter to have a healthy, happy, long life. I want her to laugh, have loads of friends and fall in love.
I'm also worried about Julia growing or her lack of growth. That's next weeks appointment. We are seeing an endocrinologist/ pediatric oncologist who will hopefully have an answer as to why Miss Ladybug isn't growing.
Today's appointment was actually fun because a photographer came and took a million pictures of us. Julia had a great time, she loves the camera! They are using the pictures for their website and pamphlets. That was also good for Julia, it took away the serious side of this. Her new favorite question is "Is NF bad to have?" Oh my ladybug girl if I could just kiss this and make it all better.
Training for the NYC marathon has been a great thing. Running somehow makes me feel better. It gets the anxiety out. I think it's the feeling that something is in my control in this out of control situation. I can do this, I can run.
I'm tired of NF. I'm tired of worrying. I want to be like the other moms I know. They worry over strep throat, ear infections and homework. They dream sweet dreams. They live so carefree next to us. I wonder what will happen as Julia grows up. The headaches, stomach aches, bumps... NF is progressive and it makes my head and heart hurt to think that my little girl will live a life that is full of pain.