The Tish

My Mom once told me she was happy I have a stepmom like Tish to help me through the rest of my life I would have to live without her. She knew that the day I got married, Tish would fit my veil and fluff my dress, and that Tish would be at my college graduation, and that I would turn to her for the advice my Mom would be unable to provide. I can't imagine, as a Mother, how painful that would be. Tish is the one who pointed all of this out to me. Tish is the first one in my life to ever give me an ongoing stable source of constructive criticism. She has become the rock in our family, the person who doesn't allow my Dad and I to feel sorry for ourselves or get away with the debauchery of years past. Before Tish, there were no expectations, only a liberal-hippie parallel existence between my Dad and I. She swept in quietly, respectful of her boundaries, and then slowly knocked them all down and slapped a bit of sense into us all. She's brutally honest, and as the saying goes she suffers no fools. She's also really fun to get drunk with and always provides free liquor and food, people love her for that, especially me! She did fluff my dress on my wedding day, the wedding that she planned within a week and people still talk about to this day. She did celebrate my college graduation with me, and bought me pearls while telling me that every woman needs pearls. I do turn to her for advice, and when I don't, she still gives it to me, and I don't know what I would do without it.

Happy Mother's Day Grantish!!

Disattachment Parenting

As a child I was forced to eat the vegetables on my plate, and I don't suffer from allergies or anorexia. I was spanked when I didn't behave, and I am not violent or damaged. My parents would fight and make up in front of me, and I have a perfectly healthy marriage. My mom didn't carry me around all the time and I am completely secure. I was teased, I was made to do chores, and I knew if I ran my mouth I would get smacked. There are way too many bratty whiny crayola named kids running around in Crocs covered head to toe in sun block on a cold winter day with hawkish Moms begging them to please behave. I actually don't blame these Moms, I blame the media for attempting to instill fear in us at every turn. (Know anyone with Swine Flu?) When I turned to the internet to find a remedy for Mica's thumb-sucking I read that if I force her to stop she may suffer from self-esteem issues and to gently discuss with her the ramifications of thumb sucking instead. She is 2. I'm going to put duct tape on her thumb and flick her hand everytime it goes near her mouth. If she calls me stupid (again) I'm going to whack her on the butt. If JT doesn't finish his dinner, and is hungry an hour later, he is going to be hungry. Don't fear for my children, I am pretty sure they will survive.

Continuing Bio30

I have been on Propolis Bio30 for 18 months now. While following the ongoing discussions revolving around the treatment on Trial Talk mailing list, I found that my blog on propolis is listed under the Bio30 publications! I feel so legitimate. I have actually been reconsidering continuing the Bio30 Propolis. In the time I have been taking it I have had no tumor growth, however I am unsure if I believe it is due to the propolis, or simply because I am not pubescent, pregnant, nursing or on birth control for the first time since age 13. Hormones are intricately connected to tumor growth. I spoke with Dr. Adler from Stanford University, who actually created the Cyber Knife, this week. I adore him, he has a wonderful personality and a fierce intelligence. He told me he is skeptical I am "getting anything for my money" with Bio30. So the last few days I have mulled it over, I would hate to stop taking it and then have one of my many tumors try to grow freakishly large and cause irreperable damage. If I did stop, and the tumors then started growing, I would have really good evidence that it does work. Then I can just begin therapy again, and know JT can take it at age 10. I am not sure if that is a risk I should take. My tumors have been stable for longer than they have ever been. Long enough that most of my new friends have no true idea of how sick I get, or why I run. I have rebuilt my life since the last surgery and losing the rest of my hearing. I have a great group of girlfriends, my running, I've gotten more fit and healthy then I thought possible for myself. I think it is best to play it safe, and continue the propolis, and just be grateful I am even able to try anything at all.

Today is the first day of my new weekly training schedule! I have to get my legs a lot stronger if they are going to carry me 26.2 miles in October. Since my next race is several months away, for the next month I am going to focus on weight training as much as I can without injury, weight training is my favorite part of my routine! It goes by fast with obvious reward for my efforts. I've always had chicken legs, to the point that I look ridiculous trying to wear tennis shoes with shorts, but I have gained a bit of muscle over the last year and plan on really defining them over the next 2 months. Since I met my first goal of 2009, to run a 5K in under 30mn, I am on to the next... be in a bikini by summer! Today I woke up and bright sun crept through my blinds, as I realized the weather is warming up it also occured to me that I have 3 months to meet that goal! I refuse to diet, choosing instead to try to eat in moderation, and cook good healthy foods. I really feel that if I don't binge, and stick to this training regimen, I will be shopping far away from the Mommy-One-Pieces I have learned to hide in. Not that my 1 piece isn't cute!!

Don't even ask!

I still have sand allover my house...

I hope at least a few of you noticed there was no post yesterday! I was gone all day at Huntington Beach with the Fabulous Moms of RC. There were a lot of us, over 20 including the kids! As I sat repeatedly rinsing sand off of the apple Mica was devouring, completely paranoid she would ingest some weird strain of bacteria, I remembered how going to the beach used to be... It used to be that I would throw on a tiny bikini, grab a towel and every issue of Cosmopolitan laying around my trashed room, lay out all day, throw on a sundress and go party after. Now I squeeze into my one-piece, pack my entire house into the mini-van, grab my Runner’s World magazine that ends up forgotten in a heap of dirty towels, and drag it all half a mile to a spot, only to drag it all back with a 30 pound toddler on my hip and an extra 10 pounds of sand. While we were at the beach a few of us Mommy’s watched the junior lifeguards running down the beach, overtly coveting their crazy flat tanned abs. As jealous as we may be, we would never trade them for the world. Well of course we would trade the abs, but not for the kids! Well maybe just one of them.... Anyway I am sure just as many of those young ladies were sneaking glances at my adorable kids and just praying, that maybe one day, they will have chubby sandy babies of their own to chase. Or maybe they were wondering why I was following one of them with a bottle of water repeatedly washing an apple? The fact remains that while the grass is always greener on the other side of the fence, I’m perfectly happy with my little patch of dirty sand.

You have to start somewhere....

It’s late in the day and I have most of my Mommy duties handled. Mica is napping and JT is watching TV as I feed my internet addiction. Not that I need another reason to be online but I have an interesting and important story to share, and with the help of one of my BFF’s have come up with the idea of blogging it! Isn’t this what all the hip mommies do now? Blog about their daily battles with random childhood issues. I hate to disappoint you all but this wont be that type of blog!

My entire purpose for beginning this blog is to track my daily journey as a young, Latina, late-deafened mother who was born with NF2. Nf2 is short for Neurofibromatosis Type II, a chromosomal disorder affecting 1 in 40,000 people. It causes tumors to grow anywhere in the body, but always on the nerve bundle controlling hearing, balance, and facial strength. I inherited the disease from my Mother, her and her brother inherited it from my Grandmother. Eventually I was diagnosed as a baby, and my own son JT was diagnosed at a very young age as well. Having NF2 means a shortened lifetime filled with MRIs, surgery, radiation, fear… and hope. Always hope.

I have made a commitment to raise money for the Children’s Tumor Foundation. CTF is dedicated to ending all forms of neurofibromatosis through research. There are other variants of the disease but I will be focusing on my own battle with NF2. You can always visit http://www.ctf.org/ for more precise information about the foundation.

CTF raises money in many ways, one way is the NF Endurance Team, a running team that participates in marathons all over the country building recognition and funds for CTF. I set my first goal this year to run the half-marathon (13.1 miles) on October 12, 2008 at the Long Beach International Citibank Marathon! My fundraising goal was originally $2,500. By email blasts alone I have raised almost the entire amount, and am now looking to raise as much as I can in the coming weeks while training to run safely and without injury. I am 11 weeks away and have been running and working out in preparation for months. As of this week I am buckling down into a strict training program.

Come back for daily updates! Each day I plan to share another piece of my NF2 history as well as my daily training report! Bookmark me and feel free to leave comments with questions or motivational words!

As always, Never Give Up Hope!