Saturday, May 30, 2009

Out of the Shadows


I wasn't sure what to expect when I got the letter about a gathering of NF families.   Part of me was afraid to meet others with this disease.  I don't really know what I was afraid of, but as the date approach, I began to feel like perhaps I shouldn't go.

My family cleared the calendar and I decided that me and Rachel would attend the meeting.  I was one of the first to arrive, and Rachel and I ducked behind the corner, so that she could finish her breakfast.

We were soon met by a wonderful woman, Cheri Stewart who  invited us into the room, and offered a bunch of "freebies".   I was excited to see so much information!  Rachel and I grabbed up some stuff and went to sit down.

I immediately noticed one gentleman who was affected by NF...I wasn't sure how to introduce myself..."Hi, I'm Kristi, I have NF too, nice to meet you..."?  That sound a bit weird to me, so instead, I smiled and half waved.  That seems weird too now that I look back on it.

A few other families trickled in, while Dr. Judith Martin began speaking.  Rachel met her a couple months ago at her clinic and Dr. Martin 'officially' gave the NF diagnoses.  Dr. Martin was pleasant and very likable.  I was quite impressed and I will forget ALL about her using the word "ass-hole" to describe the way some doctors can be.  ( my daughter who is SIX, looked over at me and said "Mommy she said a naughty word")   I will also try to forget that she compared having NF to living with freckles, or a bump on the nose.   I supposed it is truly difficult for someone without NF to know what it is like.  Unless you walk a mile in my shoes, you won't get it.   I'd like Dr. Martin to live life as  Reggi Bibbs for a day, then see what she has to say.

I had asked a few questions .... which I did not get very clear answers, but, she did try.   I asked about the type of mass Rachel has, Gleevac, and Vitamin D ....She doesn't seem to feel NFers require yearly MRI's....which I totally disagree with.  If WE didn't have a yearly MRI....we wouldn't have found out Rachel had something going on in her brain.....To her, I guess unless something is hurting....there is no need for medical intervention....Hmm, what about PREvention?  What about things like mamagrams?  A woman with breast cancer, doesn't usually know they have it, unless they get checked out.

After the key note...we had a meet and greet.  I went over to a very nice couple and introduced myself.  They have a little girl, who Rachel just loved!  We talked about our stories of NF, and seemed to have the same beliefs as far as bringing children into the world.  

We shared some pizza for lunch and visited the rest of the time.   I met a few very nice people, and got their email addresses.  I know how it is, to be living with a disease, no one knows about, or understands....So any way we can stay in contact, I am all for!

I am glad we went to the symposium....I am glad to know that I am not alone.  It's a very big world, and NF makes it feel even bigger.    Maybe, one by one....we can make it a little smaller and make a difference.

Tuesday, May 26, 2009

What...? Me....worry?

“Do not be anxious [do not worry] about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6
Knowledge is power, in most cases. So, I have been gathering information about Rachel's issues...sometimes, however, when you gather TOO much information, it can send you into a whirlwind of stress and worry.
It's all about choice though. If I look at the whole picture, and take on ALL of this on my own, I will go crazy.
So, I am making a very conscious effort to stay in the moment. Live for today. Spend all of my effort making TODAY a good day. Easier said than done.
My whole life I have been surrounded by such negativity, that I am amazed I can still think for myself. I grew up with a Mother, who was biplolar and had severe depression. The divorce and raising two children did not help. I watched my mother transform, from a vibrant woman whos smile would light up a an anorexic, very angry monster.
I was removed from her care, when I was 10. But the damage was already done. I had already fallen into the trap of misery and blame. Transitioning into a new home, was tough. I remember my step-mother would always ask me...."Why can't you just be happy?" It wasn't until I became an adult that I realized, your attitude was like a habit....and just like habits, some are good, some are bad.
It's been very hard adopting my "good" attitude, and I do fail. But what is important, is that I am aware of my attitude, and when I feel myself losing control....I ask for help. I take a break.
I am breaking the cycle right here and now.
I choose to take my own path and focus on the time I do have with my kids. I don't want to look back on my life, and have a bunch of "I wish I had....." Life is NOW.....I have been so blessed and I want to enjoy it.
My mother is now in her 60's, and has spent 30 + years being angry and negative. I see that as such a waste. Her spirit is broken. It's very sad.

Monday, May 25, 2009


Waiting for results on any medical procedure drives me insane. I even find it difficult waiting for the
little post card in the mail, telling me my pap smear was 'normal'. Ugh
I guess waiting in general, drives me nuts. I'm the type of person who wants results NOW! Don't tell me it will take 2-4 wks to find out.
Rachel's MRI results took 3 days to come back.
I kept my mind busy, with other things during this wait, but in the back of my mind, I knew we were going to get bad news.
Now I tried to push that belief away, and think positively, but you know how it goes, reality of this disease is that its most likely going to be 'something' rather than 'nothing'.
Our pediatrician, doesnt know much about NF...hell, when we first went to him and I told him about it, he got his lap top -- opened it up and googled the disease.
I told him that I knew more about this disease than any internet site, and if he had questions, he should just ask me. LOL
So anyway, this young Dr calls me up while I was on a play date at the local mall. He stumbles through the chart notes and cleared his throat. "Umm Ms Hopkins, there seems to be a mass that was found. Umm, yea a mass, and we need you to follow up with a neurologist."
Yeah right, he wasnt getting off THAT easy! "how big? on the optic nerve? what will this mean? Side affects? things I should look for?---TELL ME TELL ME TELL ME!"
He had no answers. Jerk.
He wanted to review them more in depth and call me back. He never did. Double jerk!
After hearing this news, I wanted to go pick my baby (6 yr old) up from school and just hug her.
Squeeze her, and let her know how amazingly important she is to me.
Damn this NF.
As I hung up the phone, emotions flooded me. But I was on a play date....with women who don't
understand. THEY have perfectly healthy children. They saw my eyes filled with tears and asked me
about the phone call.
All I said was that they found a mass in Rachels brain....of course to THEM....the mass meant cancer. I told them about NF, and how this isnt cancer......and one of the mothers reply was "Ohhh well thats good then".
I wanted to take her to the floor with a sucker punch! "THATS GOOD?" WTF.
Yeah - Im glad its not cancer....but its FAR from GOOD. just goes to show you, how ignorant people are. They need to be educated. People need to know about NF and how greatly it affects lives.
I plan on calling back the DR today and get some answers.
Just more waiting.....have I said how much I HATE HATE HATE waiting?

Sunday, May 24, 2009

A serious update...And MRIs & Purple popsicles

So there went March and April, and now May is almost over....Howd THAT happen?

I 'm a bit overwhelmed and frustrated with the way things are going...but I do know that God's plan is there, even when the road seems a bit dark.

2 weeks ago, Rachel went for her MRI. We spent the day together, and really connected.
MRI's and Purple posicles

As she closed her eyes, and drifted off to a place where she is free from being scared, I kissed her
forehead gently and walked away. "I love you", I whispered, as I walked out of the room. Walking down the long hallway, my mind flooded with thoughts and now, I was the one who was scared.
stopped half way down the narrow walkway and leaned against the cold white wall. I slid down and
put my face in my knees, my hands clasping the back neck as I prayed. "Bless her, and keep her safe".
My prayers then changed to questions, "Why? If God is powerful enough to separate oceans, and make
blind man see again....then why does He not cure this disease, that will ravage my child?"
My questions, suddenly filled me with anger....I was so mad at this disease. My baby didn't deserve this! My body was hot, and my jaw was clenched. My hands were still gripped tightly on the back of my neck.
My emotions were quickly interrupted when my shoulder was touched by beautiful woman wearing hospital scrubs. "Mrs. Hopkins?" she asked. I looked up at her, my eyes red and teary, "Yes?" I replied.
We're all done, she's just waking up in recovery, follow me". I slid up the wall and followed the nurse to the recovery area, where my baby girl was waiting. We smiled at each other, from across the room.
I have to tell you something really funny" the nurse said
“When your little girl woke up, from anesthesia she was laughing so hard....she made the Doctor and all the nurses laugh too.” The tension I was feeling in that moment left my body, and I smiled.
I made my way, across the room and took my baby in my arms. I hugged her for what seemed like an eternity. She asked for a purple Popsicle and we just sat in the moment. She had no real clue about the tests she just had, or any of the possible outcomes.
I am trying to take my little girls lead and just live the life I have been so blessed to have. Live in each of the moments I have been gifted.
You never know what can happen...It could be Cancer, loss of limbs, or any incurable disease. Life is fragile and precious. That's how I plan to treat it.
We sat in recovery for an hour and when given the okay to leave, we decided to skip the wheelchair taxi, and use the mommy piggy back instead! She climbed onto my back, and we galloped out of there! I didn't mind the lack of oxygen, from her little arms, wrapped around my neck...I was just enjoying my time with my little girl.
On the way home, we stopped for a bite to eat. Instead of going through the drive-thru, we decided to dine-in. I cherished the simplicity of our conversation; butterflies, rainbows, and how her favorite color used to be purple and now it's blue.
looked into her beautiful eyes, through her funny glasses and smiled. She looked back at me and told me that this was her “most favortest day ever.” I told her that it was mine too.
We took our time, eating our lunch. We pretended the french fries were people, and gave them ketchup lipstick. We laughed when two french fries would kiss.
THIS was why I became a Mother. Times like these, I hold very close to my heart. I want my kids to look back on their childhood and remember me being the type of Mother that would stop the world for them.
The bills can wait, the laundry can pile up; as long as I take the time to laugh with my kids, I can say I have had a great day.