When Things Go Wrong, As They Sometimes Will.....

Today we drove to the Children's Hospital for the 3rd time this week. (Is it REALLY only Tuesday?)

 Today's visit was for Rachel, and a check-up with the Ophthalmology department.  My frustrated mood from the morning, plummeted even further when I watched as Rachel was unable to read the letters that reflected on the wall 10 feet away.

She tried so hard.  Squinting...and squirming in the over-sized chair.  She started reciting letters.  

E?---F?---S?---L?...But those weren't the letters on the wall.  Another set of letters.  "You're doing great Rachel!" the Dr. turns her swivel chair towards my brave girl  (who seems to think she guessed all the letters on the wall right!  And a sneaky sense of "wow-ment" fills her eyes)

The Dr. walks her swivel chair close to me and asks me if Rachel could be overly tired today.  "No...I don't think so." I responded....In my head I was thinking that I just wanted to tell her "YES!", in hopes of giving a reason for the sudden decline in Rachel's vision.

But THAT reason would be too simple.

The doctor told me that Rachel's eye exam has left them stumped.  In the Winter of 2009, we were told that Rachel would be "legally blind" by the time she was 10.....A year later, we got THIS NEWS .  An amazing and wonderful thing for our family to hear.

The scans since have shown "stability"!  

A simple word...But one that causes joyous excitement in our world.

But today...We didn't hear "stable".  

We heard our doctor tell us that Rachel's vision has worsened since the last visit. 

This visit was like witnessing a car wreck...And I felt that helpless feeling that is all-too-familiar.

I wanted to scream.  I wanted to fight against the reality that Rachel may face blindness one day.  There is no "jaws of life" that can free us from this possibility...And as angry and helpless this makes me...I have to remember who is control of this situation.

Rachel tells me as we skip down the hall, after the appointment ..."Did you know that people can see things with their hearts?"  "How do you know?" I ask her...."'Cuz Mama, when I close my eyes and it's all black....I can still see how much you love me!"

My God.  

How can I possibly be angry?  How can I question?  How can I ever doubt?

THRIVE ON!

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

One Step Forward...Two Steps Back

Disappointment. It happens to everyone. Having Neurofibromatosis, I  have learned to prepare myself for disappointment. It's a horrible way to live, and I do try as much as possible to believe that good things are bound to happen, but the roller coaster life of having this disorder continues to break my heart, over and over.

The last time my daughter received chemotherapy was on July 6th.  Her doctors reduced the dose from 6 ml, to 4 ml and we were sure that Bailey would do well.

She left for camp the next day and things were good.

Until I got the call 2 days later.  Bailey spiraled.  Her blood count was hovering just above 1, and her fever was high....VERY high.

She spent 4 long days in the hospital and her blood count rose, but she has never completely recovered.  I never thought 4 mL of anything could be so damaging.

We were to get back on track last Wednesday....An MRI and this time 2 mL of chemo...But after Bailey's blood draw, everything was cancelled.  One step forward, two steps back, is the dance we are doing when it comes to Bailey.

No answers, just disappointment.

My mind is whirling...Wouldn't the MRI be necessary, EVEN more now, since she has been OFF chemo for a month?  Bailey's doctor assures me, that if SHE felt it was necessary, we would be doing chemo and MRI's.....NECESSARY?   I think a tumor that DOUBLES in size while ON chemo, qualifies as "necessary".

Leaving your child's fate in the hands of someone else is hard.   Trusting that THEY know what is best and going with that is not something I am good at.  

We left the hospital last week feeling uneasy.  Part of me wanted to run back in there and demand an MRI...demand some answers!  The other part of me wanted to leave the hospital and never return., because the pain of doing nothing, felt worse than the pain that therapy brings.

We have to continue to trust.  Trust in the Lord, and trust the hands of the doctors who really are giving Bailey the best.  We have to focus of Thriving....Because that's the only way Bailey is going to come out of this.

Thrive On!

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

Turn it Around Tuesday

Do positive people bug you?  Being married to public speaking coach, I have heard it all.  I think we own every self-help, motivational book out there.  The "Rah-Rah Whoopla" that spews out of the mouths of these multi-millionaires just rubs me the wrong way.

But in the last few years...Especially in the years since my diagnosis of Neurofibromatosis, I have begun to hear what these guys have to say, in a very different way.

I grew up in a very toxic and negative environment, and learned from the best, how to always look at the dark side of things....and assume the worst.

God was a monster, who cursed our family with a dreaded and debilitating "disease" and deserved nothing but blame for inflicting us.  I was taught to hate...and brought up to hide and be ashamed of who I was.

When I would ask questions about what was happening to my older brother, Mike who is severely affected by NF, the response was anger-filled.  My mother didn't want to accept or deal with what was happening to Mike...or to herself.

For me, it felt wrong to always be angry and hateful.  I tried so hard to separate myself from the sewage I was living in.  But being a kid...It didn't work so well for me.

I was wrapped so tightly, and held my anger inside.  Not many know this, but in 8th grade (after a cruel dose of puberty) I swallowed a small handful of sleeping pills, just to make the cruelty of others end.  When I woke up the next morning, I was disappointed....and extremely tired.

I knew something had to change...I just didn't know how to change it....and I was afraid that if I tried to change, and it failed...it would be just another thing in my life that sucked.

I pretended really well...and got through the rest of my childhood relatively unscathed.  It wouldn't be until adulthood, after my diagnosis, that it would all catch up to me.

Everyone has a choice with how they live their life.  Like my brilliant 15 yr old daughter says, "bad things happen everyday, it's up to you, to pick out the good in the bad, even if you have to use tweezers".

The "Rah-Rah Whoopla" now makes more sense to me than ever.  You don't have to be famous, or a billionaire to have a positive attitude.  You don't need to write a book and have 2 thousand friends.  All you need is the will to look at things in a different way...then make the effort to change.

Thrive On!