Tuesday, April 16, 2013

A Little Bit Crazy

Ok...Now that is has been 24 hours - I think I can safely write about our day....

I was looking forward to this day.  It was one of those BIG days, where 5 out of the 6 kids had a doctor appointment.  More importantly, this was our yearly NF check in/up for the 3 NF kids.  The Multi-Disciplinary Clinic where we get the privilege to meet with several different doctors and spill our guts about anything and everything.

These appointments are different than a regular doctors appointment- where you may get a referral for another doctor--then have to wait several weeks or months to see them.


Anyways....Our first appointments were non-NF related Urology visits...That went smoothly enough.

We had an hour and a half before the next set of appointments, so we headed to McDonalds for lunch.  When we got there....We were lucky enough to witness a drug bust and arrest...With not ONE...But TWO police cars!

I just LOVE Aurora.

When we got back to the hospital, Rachel was waving 'HELLO' to a fellow NFer, who just so happens to go to the same school as the younger kids.  

It's always neat to see someone you know, in a place you least expect to see them....And the fact that this little girl has NF just like my clan...Made the meeting, somewhat magical! 

Our appointment started off great, with a meeting with Molly ( I just LOVE her )  And a Neuro Doc, who did VERY thorough exams on all 3 kiddos.  

I felt listened to. Not something I always get, when visiting the DR...

More DRs filtered in and out....and I was beginning to feel very overwhelmed....But at the same time, it was comforting knowing that I was talking with Drs who genuinely cared AND wanted to help. 

We had a few breaks, where I was able to look out the window....The snow had started to fall.

Normally- This wouldn't be a big deal...But we still had a few doctors to see, and it was already 3pm.

The kids were growing increasingly restless....And we were saved a few times by some wonderful folks, who allowed my kids into a room with a computer, and some coloring supplies.

Our last stop was to get a blood draw for Rachel.  The drs were concerned about her complaints of leg pain, along with the fact that Rachel has very low muscle tone and delayed motor development/coordination...The Dr very lightly mentioned that these are symptoms of Cerebral Palsy.

I felt a huge lump in my throat, and the tears began to fall.  

I cried a LOT during this appointment...and THIS was just something so far in left field, that when I heard it, it just about knocked me over.

"We are ruling it OUT, not in...Ok?"  Those words were nice...But NOW I have these thoughts rolling around in my head.

Rachel is scared of needles....But bravely extended her arm to the doctor, as 3 vials of blood were taken.

My mind kept chanting....That everything was going to come back "normal"...And that life will be okay...

As we headed out, I was handed a bunch of papers, that summarized EACH child and the details from the doctors we had seen.  THANK GOD!  My mind was a mess with those details, and I was wondering how on Earth I was going to make sense of it all.

These papers were THE BEST part of my day!  I grabbed them up and THANKED the Drs, for spending so much time with us...And for treating us so well!

The weather had turned from snowy...to REALLY SNOWY, and it was beginning to get dark.  As we got into the car, each of us said a prayer, that we would get home safely.

What normally takes us 30/45 minutes, took us THREE HOURS!  
Snow and slide offs, and general parking lot conditions.....

I white knuckled the entire drive and stopped at McDonalds to get the kids dinner....It was about 8pm when we finally got home, and I was totally spent.

I didn't even know how to begin to download our day to my hubby...But managed to, after a hot bath, and some time to just relax.

If there was a day to THRIVE, this was it.

Sunday, April 7, 2013

NF Connections

Sometimes...You connect with someone in the most unlikely of places.

I typically don't respond to things on Freecycle, or Craigslist....Because as my hubby would say "We have ENOUGH STUFF!"  But there are times I just can't help myself. :)

Something came up on Freecycle, and I responded, hoping that the item was still available....It was.

I responded with a pick up time using my personal e-mail address, which happens to say "Thriving with Neurofibromatosis" and gives a link to this blog....

The woman wrote me back, with a time to meet....but the e-mail continued, with a lengthy response about how she clicked on my link and was led here.

Her son was JUST diagnosed with NF last week and as she explained, she was overwhelmed, devastated and heartbroken.  That is until she read blog post after blog post that proved to her, that this diagnosis is NOT the end.

Like a few weeks ago, when a letter was left on my van, from a mother distraught from this diagnosis, I have made a new friend.  (Read that post HERE)


Tuesday, April 2, 2013

Out With The Old

I have never been considered a "fit" person....I've lost a lot, gained a lot...and yo-yo'd around the scale my entire life.  "Sturdy"-"Chubby"-"Fat"....None have been easy.

I went to the gym today...My husband and I try to get there as much as our busy life will allow us to...And as I was running/walking on the treadmill (trying to get my 30 minutes in) I flashed back to my 14 year old self.  

The 150 pound 8th grader, who could barely run a lap around the baseball field.

That shy, troubled girl--She had given the adult me, so many reasons to want to give up.  

As my work-out music filled my ears, and I pumped up the speed...I remembered when I first walked into this gym a year ago...It was intimidating and scary.  Just like in 8th grade, trying to keep up with my peers, running that stupid timed mile.

I was well over 200 pounds when I walked into this gym a year ago and I wondered how on Earth I was ever going to accomplish my goals.  The first few times in the gym were truly like an episode of 'The Biggest Loser'...(without the screaming or vomiting)

I had so far to go.  THAT ALONE was reason enough for me to run walk the other direction.  Not to mention that I was SURE someone in that gym would comment on my tumors.

At least being fat, my tumors were somewhat hidden...

As STYX played another favorite song, cheering me on, I looked at my reflection in the mirror beside me...(I honestly never EVER look in the mirror while I am at the gym...I feel I looked ridiculous)  I almost didn't recognize myself. 80 pounds lost.  80 POUNDS!

I increased the speed a bit more and began to jog....I smiled and realized that, the 8th grade girl I have always related to, was no longer there.  I had hung onto that girl...who was filled with so many excuses and so much dread...So much hurt....In a way...all that pain, made me feel safe- Justified even.

But seeing who I am becoming without all of the "STUFF" dragging me down, has turned me into a much more confident person.  Tumors and all!

And IF someone happens to comment on my tumors, while I am working out....Let them!  THRIVING isn't just writing a blog that has a cool ending...It's LIVING--BREATHING a positive life, no matter what you are dealing with.


Monday, April 1, 2013

Neurofibromatosis Awareness Bracelets

I am so excited about the new bracelets that I created!  They are a BIG change from my blue/green swirly 'Thriving with Neurofibromatosis' bracelets....And REALLY cool!

1 Inch Black Silicone, EMBOSSED with Green lettering!
Trendy-And High Quality!

One side says THRIVE ON!
the other side says Neurofibromatosis

Now everyone can see what the bracelets say!!! 

Order Today by clicking the link to the left
USA Orders only!