Monday, February 24, 2014

There it is again.


That all too familiar sound.

It's almost deafening....And fills the car and the air around us, with a thick and unbreathable cloud.  Our drives to the hospital are always tense.

We listen to the radio...Make small talk....But we know--

It's coming.

Good News?

Bad News?

Whatever it is...The wait for it is ALWAYS heart wrenching.

Every 3 months we hold our breath...And for the last 9 months, we have been able to breathe in and out, having faith that the next scans will be like the last.....STABLE.

Uncertainty brings fear...No doubt about that.  'Giving it to God' is easy....when it isn't YOUR child.  Having faith that 'everything will be okay'....Is GREAT....But in the end....I know that EVERYTHING is NOT okay.  Far from it.

Bailey is 18 now...She can speak for herself and make her own decisions about her health.  And she knows, NF will ALWAYS be there....An unwelcome stranger...that is eerily creeping in and out of our lives...

When we checked in--SHE was asked all of the questions, that I am so used to answering.  I guess it's a little hard to let go and realize that Bailey IS an adult now....


She is STILL my baby.  Turning 18 doesn't mean I let go...It just means...That maybe I stop squeezing so hard.


She's a pro at these MRI's and has come today well equipped.  (Her favorite fuzzy blanket and a movie that she has seen a zillion times)  Familiarity brings her comfort on days like today.

The waiting room is ALWAYS filled with people.  Families.  Worried parents strung out- here and there.  I constantly scan the room....wondering why THEY are here.  We all have our own stories, most of which are sadder--maybe more complicated than ours...But at the same time...THEY could be looking around - thinking EXACTLY the same thing.

They've changed the waiting room, since we were here last...And I silently thank God for this.  At the same time...I miss our weekly visits to the hospital.

I don't miss watching the weekly injections of chemotherapy...or the violently ill child that would come from these visits...But...I guess I miss the fact that people payed attention to us....Our medical needs and concerns were  important and carefully analyzed.

Now?  It seems we are just another family, that has a child with a brain tumor.  A year ago...these tumors were a big deal...And now...they have remained stable--Which is GREAT...But....The tumors are still there.

I sit waiting for Bailey to come out of the MRI...

"Have they grown?"   "What's next?"  "What if....?"

Then I find myself feeling a horrible sense of guilt.  I DON'T WANT to be the family that is payed  attention to.  I WANT to walk in...and then walk OUT of the hospital without feeling worse.



Going upstairs after the MRI, is probably the toughest part of the whole visit.  The results are THERE...and now we have to wait until our doctor comes in, to give us the results.

I can almost predict what the results will be, within seconds of seeing the faces of those entering our room...But the last time we were here (3 months ago) I was thrown off, by a completely different doctor, who I had never met before...

Molly comes in and slides into the wheeled chair and I look at her face.


She begins to ask Bailey questions about how she has been feeling....

"Oh God." I think *quietly*

I find myself talking over Bailey...trying to remind her to tell the Dr. all of the times she has come to me with headaches....dizziness....nausea etc....How the last 3 months have been WORSE than all of the other months....


Molly tells us that Bailey's MRI showed changes, but no BIG CHANGES.  And gives us the "stable" result.

I feel my lungs FINALLY fill up -- Then release.

One Year of "STABLE".  Thank God!

We now can move our MRI's to 'every six months'...Which is HUGE!

But even while getting "GOOD NEWS"...It feels as though we are just waiting for the inevitable to happen. JUST WAITING until we get comfortable where we are, only to be knocked over--- I do try not to live this way...But I am just a mother....Who knows first hand how cruel NF can be...I'm just a mother, who wants to be able to tell her 'baby', that everything will be okay (and BELIEVE it)

For Now...We'll take our fresh air and our good news and run with it.



  1. Kristi, how do you do this every day? How do you deal with your own NF and your kids' NF? I'm so tired of NF, I'm so tired of worrying. So tired of noticing new spots and worrying about not checking up on my NF. How do you deal with it all the time? I am physically exhausted worrying about it so much. I want to see an expert on nf, but it's taken me over a week to get up the nerve to even EMAIL one. Ugh. Thanks for being so strong and so awesome

    1. By carefully swallowing one day at a time. Trusting that God will carry me through on those days when I am not Thriving...(those days are more than I admit to)

      Thanks Jennifer--I know how exhausting NF is. Knowing you are not alone is probably of little comfort to you...But - I'm here, and I get it....Some days, in all honesty...I have no idea how I manage 'all of this'.

      An on-going joke at my house is that 'every time a mommy NFer gets a new bump'...Good Lord....I hope there is no truth in that. *sigh*

      Hugs to you

  2. YAY! Congratulations on a year of STABLE!! Good job mama for keeping it all together and belated Happy Birthday Bailey!


  3. Every 3 to 6 month I have mri and my mom come with me I am 23 and I have to have my mri done under general anastisia but how can I not be afraid of to get bad news the my brain tumor have grow?I have nf1 well rigth now my brain tumor is stable but every time I go to a mri I think about that