A Boy Named Keith

Once upon a time there was a boy named Keith. He was born just a few months before me, in July 1981. When he was still young he was diagnosed with Duchenne Muscular Dystrophy & his parents were told that he wouldn't have a long life-expectancy. But that didn't stop Keith. He started using a wheelchair, got an electric chair, went to grade school, went to Jr High, & then went on to high school.

It was in high school that I became friends with this boy named Keith. There were actually 2 kids in our class who were in wheelchairs, Keith being one of them. Of course I had seen him around a lot in Jr High but high school is when we started being friends. What a time in my life that I'm thankful for...I'm thankful that we became friends.

I was fortunate enough to have a last name very close to Keith's in the alphabet. His: Bursheim; Mine: Cauffman. So at graduation we got to sit next to each other. I remember the roar of cheers as they said his name. He wheeled himself across the stage to get his diploma & have his tassle moved from one side to the other. And the smile he had!!! You could tell that everyone was so proud of him. But that's another thing amazing about Keith. He always had such a good attitude. He was down to earth, funny, & kind...simply kind. So it came the time to throw our hats but because of Keith's DMD he couldn't take his off his head & throw it. I threw mine & then looked at him, when he demanded that I take his off his head & throw it in the air! So that I did.

Keith & his sister, Holly

That summer after graduation I worked for Home Health as a PCA (personal care attendant) & they assigned me to help Keith out. Oh boy was I excited about that. Seriously...I couldn't have been happier. Nothing against the elderly, but I was super excited about helping Keith, a peer, a friend, someone MY AGE, instead of helping an old lady who would never remember my name.

It was that summer that we became great friends. I wasn't a person taking care of Keith. I was a friend coming to his house to hang out with him. On the occasional day that I was assigned to take care of Eric, the other boy in our class in a wheelchair, I'd pack Eric up in my car (not an easy task, mind you) & we'd still go over to Keith's house to hang out.

Keith was SO into movies that I can't even begin to describe. We watched tons of movies that summer of 2000. Keith was home-bound, pretty much, but that was fine with me. We were able to get to know each other more because of that. We talked, laughed, played games, & watched movies. Honestly...you could mention ANY movie & Keith had seen it. It was pretty amazing.

Keith & I shared a slightly twisted fascination of Christina Aguilera. Ironically enough, she was coming to Billings, MT that summer so Keith was trying to score some tickets. He wrote her a letter & her assistant ended up calling Keith's mom shortly after they got it!!! They offered Keith 2 tickets to her upcoming concert! He asked his sister to go with him but she couldn't make it so I was the runner up!!! :o)  So Keith's parents, Keith, & I packed in their van & drove down to Billings for the concert. Not only did we get to go to the concert but we were able to see Christina for a meet-&-greet before the concert started...AND we had a free lunch with her backup dancers.

So the cool thing about meeting Christina Aguilera....she's shorter than me. Yup. Seriously. We got a picture of us & I know I have it somewhere around here...I just have no idea where to look for it. It's times like these I wish I was more picture-organized.

Keith & I kept in contact after I went to college & then moved to MT. I'd go visit him occasionally, but not nearly as much as I should have. Keith's health started taking a toll on him & he started losing weight, got put on a vent, & was completely home-bound. When I was in nursing school I was lucky enough to get to take care of him in my clinicals. He would occasionally go in the nursing home on respite care & I would ALWAYS beg my teacher to let me have Keith. She knew that we were good friends so thankfully she'd always say yes. Probably a bad idea on her part though cause I hardly ever left his room....

These past couple years I knew his health wasn't the best, but he was still fighting. He was always on Facebook, writing emails, watching movies, & of course being interviewed by local news crews! He was even writing an autobiography.

To go along with Keith's love of music & movies, he planned "Keithstock"...a 30th birthday party in July of this year. Everyone went dressed up as their favorite movie character & we had a potluck & drinks at his house. It was awesome. Of course I wasn't there as long as I'd like but I'm so glad I was able to go...because unbeknownst to me....it was the last time I got to see Keith alive.

Keith passed away on November 19, 2011, at 30 years old.

So many emotions went through my head when I found out he died. I was sad because I'd lost a great friend; mad at myself for not seeing him more; happy & blessed for knowing him; excited that we had such a great relationship; devistated for his wonderful family; & empty because there was no more Keith.

His funeral was a week later & of course it wasn't something I looked forward to, but it was good to get to celebrate the life of someone so awesome. I was able to catch up with 3 amazingly wonderful ladies, who were also super close with Keith over the years, so that was nice.

Me, Jamie Gill Cataraha, Sonja Gates Durr, & Bethany Smith Davies --- all dressed as the colors of a rainbow

Keith,
Simply put...you were amazing. You were a great friend, a funny character, a warm heart, a gentle spirit, a movie buff, & have outlived your life expectancy by years & years. This world was a better place because you were in it & I'm so blessed to have known you & even more blessed that I could call you my friend.
I love you, dear friend, & miss the heck out of you!!!
~Love,
Merilee

Keith & his nephew

Nevus Outreach

I have a special request... The company, Chase, is giving away $3 million dollars, divided up between 100 charities. Nevus Outreach is one of the charities that could get a portion of the money. But they need your vote. Simply go here: http://apps.facebook.com/chasecommunitygiving/charities/593455128-nevus-outreach?src=charity_share Log in to Facebook, "like" the page, then vote for Nevus Outreach. Nevus Outreach could potentially win a lot of money, and boy do they deserve it. Nevus Outreach has been the single biggest factor in our lives with Brooklyn & her congenital Nevus. It's where I met all my lifelong nevus friends, where I found Dr. Bauer, and where I turn to for support. All they need to do is get in the top 100 to win a portion of millions of dollars!!! Will you PLEASE vote for them? Without them who knows how lost I would be...still...in the search for Nevus-related info. Please help them out, for me, & for the many future Nevus families who will have nowhere else to turn. Thank you.

2011 Christmas pictures

UGH...it's Christmas picture time again. Click HERE and HERE to refresh your mind on our 2010 Christmas picture experience.

We went to Sears in Great Falls again (NOT Billings) because the lady here in Lewistown isn't doing them anymore. :(  So we went to Great Falls yesterday for them. It was horrible. But not bad enough that I won't go back go Sears in Great Falls. I think it wasn't as bad as before, just cause I'd been through bad picture experiences. But this was close to it.

We got there & needed to get them Christmas dresses for the pictures. We found a cute one & Cali loved it...so that was a plus. We got to the room where they were going to take pictures & the girl didn't even say hi to us. Just pointed us to the room. Ummmm, ok. She didn't tell Cali or Brooke where to sit, how to sit, what to do, or anything. She was horrible! So my mom & I had to try to pose them in positions & try to get them to move. Cali would smile but Brooke wouldn't. Then when Brooke smiled the girl wouldn't take the picture! It was very frustrating. She was flat horrible.

So we told her we wanted to take a break for a few minutes. Thankfully she had to leave!!! LOL Yeah, she told us she had to go right smack dab in the middle of our picture session. No crying on my part. Another lady, Victoria, came in & she was a little better than the first person, who didn't even introduce herself. But still, Brooklyn looked like a deer in the headlights. She would get up & move around, not stay seated at all, & then Cali kept putting her hands in her mouth!

We got 1 or 2 "good" ones that will hopefully work for us, but they're nothing like the really good ones we've had in the past. Oh well...it's a good story we'll have for them someday! Here's a few of them:

And we're home...

Our drive home was pretty uneventful...thank goodness. The first night we actually made it to Grand Island, NE...which was a good 10 hour drive from Chicago. The girls were doing so well that we just kept driving. The 2nd night we stayed with my best friend, which was very nice catching up, even if it was for 12 hours! We finally made it home Saturday night around 7pm. Here are some pictures from our trip:

Brookie asleep in the car... This travelling thing is pretty boring!!

No, folks, I promise you we did NOT put that DVD there. Cali fell asleep like this!!!

Jennifer with Cali & Brooke

That night Cali turned into not such a nice little girl. She had had a long day & she was SO tired that absolutely nothing made her happy. She was simply P-O'd. She wanted to sleep in the bed with mommy...so daddy & Brooke layed on the air mattress. Well then Cali decided she wanted to sleep there. While she was throwing her fit, she sat on the air mattress, against the bed & fell asleep!!! She cried herself to sleep, literally. It's blurry b/c the room was almost completely dark so my camera wouldn't focus, but you get the point! :o)

Maybe 4 now?! Dr. Bauer's "plan"!!

Thursday AM we went in for Brooke's 1 week post-op check & to get our release that it was ok to go home. They said Brooke looked amazing & that she was healing nicely. :o) Good news all around.

But probably the BEST news was that we MAY not need the 5th surgery! What?! What a total shocker to us! Dr. Bauer said that we can postponne our March 1st surgery until possibly the fall. Here's the plan:

Waiting 4 months for her to heal is not enough time. We need longer to see how she's going to heal up from her 4 surgeries this year. 9 months is a better time frame. It just so happens that 9 months from our surgery will be right around the same time as the next Nevus Outreach conference!! Last year at the conference I won a family registration (about a $600 value) so we were planning on going to the conference anyways next year. Dr. Bauer is a speaker at the conference & his wonderful staff is there also. So we'll meet with Dr. Bauer the first week of July 2012.

At the conference Dr. Bauer will decide if Brooklyn does or does not need that 5th & final surgery. He's thinking she will, but if she heals properly then she may not!! The 5th surgery will be making her forehead smaller, making her eyebrows even, & generally just making her face symmetrical. So if she heals up & doesn't need that stuff then we're done with surgeries! But if she doesn't heal as good as he wanted, then we'll need that last surgery, which he wants to do in the fall.

So...long story short. We MAY just be done with surgeries! But we'll find out in July if we do need that last one. If we do, it'll be in the Fall of 2012. :o) Simple as that!

Here's a picture of Dr. Bauer's amazing nurses...with Brooklyn & me. Gosh we already miss them!

Susan, Merilee, Brooklyn, & Mim

Last Night in Chicago...

Our past couple of days have been non-eventful...just passing the time before we go in to the office tomorrow AM for Brooklyn's 1-week post-op check. It's kind of crazy that it's already been a week since her 4th surgery. Tomorrow AM (Thursday - 11/3/11) we'll be heading in to the office to have Brooke checked out, make sure she's doing ok, & then we'll be on the road. I'll explain our past couple days with a few pictures...

Just a cute picture of Cali B playing with her little dollies instead of going to bed!!

Tuesday we went to the Field Museum. It was the only "big" museum that we haven't been to in Chicago yet. They have different exibits going on for a few months at a time. In January when we were here it was something that I really wanted to see but we never made it. In March & August it was "The Horse". This time it was "Chocolate Around the World" (oh yippie) & "Whales". I guess it should be pointed out that I'm definitely NOT the museum type. I'm more of the amusement park person. I just don't appreciate stuff in musems like I should. Plus, it's kind of hard getting in to things with both girls running around. Anyways, it was still nice going to the museum for something new to do. Here it is:

They have a full-size dinosaur inside...

...as well as 2 awesome elephants...

...and 2 awesome kidlets!

Cali liked the bison!

After the Field Museum we walked across the grass to see Dora at the Shedd Aquarium. Our annual pass is almost up so we needed to do something free today! We went to the aquarium, went to the Dora theater & the lady let us in for free! (It's usually $3/person but b/c it was late in the day she let us in for nothing. :o)) Then we just walked around for about an hour before they closed at 5pm. Here's a real penguin...

And here's a real penguin person!

...and another penguin person!

They had a blast dressed up as penguins, doing things penguins do... Like slide down the ice...



...and slide some more!

After the penguin dress-up was the submarine.

Today we went to the BIG mall, 12 miles away, so Dustin could get another pair of mail carrying shoes. We had lunch at the Rainforest Cafe so the girls could be "entertained" while eating. Here's Cali with the dolphins that we got to sit next to:

And of course a little bribery goes a LONG way! If Cali was a good girl & sat in the stroller (which she hardly ever does) then she'd get to go play in "Play Land" (as she calls it). So she was a good girl & she got to play. She had a ball & we let her play for a while...& even let Brooke have a good time playing too.

Then it was time to come back to the hotel & pack up so we can leave tomorrow. :(  We ate our complimentary dinner at the hotel in the lobby, said our goodbyes to our favorite hotel staff, & packed up the car so we can get up bright & early...

Soldier Field

To go to the Field Museum & The Shedd Aquarium you have to park in the Soldier Field parking lot which is under Soldier Field, a.k.a. where the Chicago Bears play. I haven't had the fortune of ever going to a professional football game so whenever I see one I'm like a kid in a candy store......in total awe!

This field was "dedicated to the men & women of the armed forces" so it was extra special to Dustin. Here are a few pictures that I took yesterday on our way to/from the museum & aquarium.

Cali saluting!!

There are also 8 plaques (one for each branch of the service plus a few extra) that Dustin had me take pictures of. Here's the Marine Corps one...

If you're ever in Chicago make sure to take a trip to Soldier Field & check out the tribute they have created for our armed forces!!

Finally sorta better

Well I'm better...kinda sorta...kind of better I guess...sorta...

Every single Chicago trip either starts out or ends up with a cold. I have no idea what is up with me. Stress I suppose, but COME ON!!!

In January I got sick towards the end of our trip, but it was a doozy of a cold. March's cold happened before we left for Chicago. It made the flight absolutely horrible & miserable...BOTH the To AND From flights. August was pretty bad too. I was sick just a few days before we left so I remember having to pack & travel in complete & utter misery.

And of course this trip was no exception. I've been trying to pin it on anything & everything, but I know it just has to be stress. The funny thing about this trip though was that I felt more calm & at ease than any other trip. I was excited for this trip. I was excited that my baby would finally be nevus-free! But apparently my body doesn't care cause I still got sick. It came on ON MY BIRTHDAY of all days (which was 2 weeks ago tomorrow) & it came with a vengance. It made travel to Chicago completely horrible, miserable, long, & MISERABLE (if I haven't said that already).

But I'm finally on the downward slope...I'm hoping anyways!!