Thursday, March 31, 2016

Stealing words from a wise friend, we just "keep on going" thank you Emily Crabtree

Above, my sweet boy, Raphael,  helping his little sister down the stairs.  He is always kind to her, always.  It melts my heart.  He is only 6, but, he is a man (he's been thru more than I have in my 41 years so its no surprise), I gush none the less...

Many have asked me to update the blog.  Things are kinda steady, kinda not so here the update.  I tend to only write when things are in upheaval but to be perfectly honest living with a son with a very  rare and unpredictable disorder, I'm not sure that I ever feel truly unhinged.  I will say though, that being a mother in general before nf-2, I kind of felt the same (but less intensely).  We bring these beautiful humans into the world and all of a sudden, life seems beyond precious.  And, it really is.   I want to teach my kids this lesson.  How though?  I know they are happy and I know I am happier since seeing the world through their eyes so my hope is I'm doing my job.  In my heart, I just want them to feel safe, loved and mentally satiated.  I wonder though, how is that possible when I am so scared.  Thus is our journey.

So Raphael is doing amazing (to my knowledge).  He brings so much joy into my life every day.  He is like a 70  year old living in a 6 year old body.  He's patient, thoughtful and just about up for anything any time.  He also trusts me for the time being which is a gift.  I cry myself to sleep often with guilt over what this sweet little boy goes through.  But, and my friends can attest, he's truly a happy kid and I say that while holding my breath because my wish is that he continues to be so unhinged while facing such unfair circumstances.  We can all learn a lot from Raphael.  I could not be more proud to be his Mama.

I'm taking Raphael to children's hospital in Boston in 2 weeks which I mentioned in my previous post, after that, he is having his first slumber birthday party followed promptly with a MRI under sedation and a neuro appointment where we will hear - who knows what?...  To say I am holding my breath is a gigantic under statement.  I hate it.  I don't think I'll ever know what it feels like to not be frightened again.  Knowing that, makes me want to protect my children from being scared even more.  Ugh...

Lastly my tri training is still going strong and it's hilarious and so incredible.  I am truly loving it.  I'm 1 of the oldest and definitely the slowest but who cares, it's fun and in the grand scheme of things, it makes me feel like I am fighting for my son even though in reality how is me running a race helping his disorder but I'll take it.  I'd rather train and raise money then sit on my butt and cry.  I'm doing the best I can.

Once again, my fundraising link

Please consider donating to The Childrens Tumor Foundation.  My family would be incredibly grateful. We are scared but determined to find a solution and we really need help.

Thank you for reading.

Much love,


Wednesday, February 24, 2016

If Raphael can do what he does, Ron and I can do a triathlon

It's been a while since my last update.  We have been busy living our lives and getting back to a normal routine in the aftermath of last summer when Raphael received 30 rounds of radiation behind his eye for a tumor which was growing.  It seems like that was years ago and I have completely detached myself from those memories.

Right now, I am hunkered down with Raphael and Charlie.  Charlie has a fever and a cold and Raphael is recovering from a neck surgery that will hopefully give his voice some more volume after a tumor on his brain stem paralized 1 of his vocal chords.
The thing with nf-2 is, whenever things seem calm, there is always something lurking in the corner to take us off of our tracks...  This is him recovering from 3 hours of surgery.  I love that face.

We anticipate some down time these next few months before his 3 monthly mri and I plan to take that time to meet with a few more specialists in Boston in the hopes that no more big surprises come my way.  Or at the very least to get a few more nf literate specialists eyes on Raphael and hopefully put some of  my worries at bay.

Additionally, Ron and I are taking our middle aged butts and getting geared up for training season for the NYC triathlon.  Our team is called Team Raphael and we are raising money in honor of my tough lil guy for The Childrens Tumor foundation.  They are working really hard on better treatments for NF and we MUST help them.  Time is of the essence.
I will attach the link to make donations at the bottom of this post and Ron and I would be so incredibly grateful if you could make a donation big or small...  We need CTF to get enough funding so 1 day I can stop fund raising.

Lastly, we want to invite all of our friends and Raphael's friends to join us in Central park on July 24th to party with Raphael after the triathlon.  Mark your calendars.  It will be a wonderful afternoon and we'll have big plans for kids and grown ups.

Here is the link for our race donations.

Thank you so much.