Whacky Wednesday

Ahhh the Duggars are at it again. The family gathered around to announce to the world, that baby number 19 is due sometime after their first grandchild.

I'm happy for them, I really am.....But one has to wonder, when enough is enough?

With having a genetic disorder, where the odds of passing it on to your children is 50%, I wavered with my choice to have children. And to keep having them. My feelings were that NF was not going to rob me of being a mommy.

Risks are made, with each and every pregnancy. One could be totally and completely "healthy", and give birth to a child with severe medical needs. So who decides?

Michelle Duggar is very obviously blessed with 18 very beautiful, very healthy children, I hope and pray her 19th baby is just as healthy. But I also know, that if she were met with the challenges of having a child with special needs....the Lord would take care of her and the family.

I would have 50 more babies, if fate so saw it that way. I don't see my NF children as "disabled"....they have special needs...and have a special mommy to take care of those special needs. I am so blessed and I am reminded of this every single day.

Don't worry.....no more babies are on their way. I get reminded all the time, that Bailey only has about 5 yrs to go, before becoming a mother, if she follows in my footsteps....~~~cringe~~~ LOL

Bless this baby, and the siblings ---

***RIP POP....I know you are in a better place now! I'm so glad I got to hug you one last time. I love you so much!

Turn it around Tuesday

Many cultures throughout the world, share a common, coming of age ritual, known simply as a Vision Quest.......While we often think of this in terms of altering the perception of what we see around us, in truth it has nothing to do with the physical act of seeing at all.

This rite of passage, marks the transition, from child—to adult. A turning point, meant to find ones self and their intended purpose in life. Who am I? Why am I here? A time of internal transformation and renewal.

As I sat and watched my daughter struggle to read the letters reflected on the wall...I closed my eyes, only to encounter my own 'Vision Quest'. The road that lay before us was that of a mystery. “Her vision has gotten worse in the 3 months since our last visit Ms. Hopkins”.....The Ophthalmologist looked up at me over her glasses, that were slid down to the tip of her nose. The doctor spent another half an hour with Rachel, adjusting the settings and fiddling with that and that, only to come to the same conclusion.

The nurse jotted down some notes, while the doctor wheeled her chair over to me and put her hand on my knee. “Just give it to me straight”, I told her. I kept my eyes closed, and took in a deep breath.....perhaps anticipating, the darkness that my daughter could be facing.

I was told that the vision loss was worrisome, in that if it continues at this rate, by the time Rachel is 10, she could be “legally blind”. I opened my eyes, and looked over at my daughter....she was playing with her shoes and giggling, when they kept falling off. I gave her our special wink- wink-kiss and told her I loved her.

We got a prescription for some eye drops, that will keep Rachel's eyes in a dilated state, to relax her eye muscles, so that perhaps, her glasses that she is wearing now, will help her see better. We were told to schedule our appointment with our Neurologist as soon as possible.

Rachel's last MRI was in MAY and we are on a every 6 month basis, but may have to bump it up a bit, just in case her tumor is growing.

I take Rachel's hand and make sure to get her a sticker, as we make a return appointment for 3 wks from today. As we walk out of the Drs office, I kneel down to Rachel....and I look into her sweet hazel/blue eyes....I tell her how much I love her. She smiles and tells me that this was the best day ever!

I came of age many years ago....but today was a Vision Quest nonetheless. I now have a deep understanding, of why God put me here. I know exactly what my purpose is.

Who am I? Why am I here? Those questions were answered at that very moment. If my daughter loses her physical vision, it is my job, to help her, so she never loses her spiritual vision. Poor site or no site....this will never alter her direction in life. (with 5 other kids, one can only imagine the 'Vision Quests' to come (: )

Motivational Monday

Ode to Summer

Laying on our back

and watching the trees

running thru the grass

and feeling the breeze

Feet in the creek,

water on our toes

Sand in my shoes

and the sun on my nose

the days went on

like fireworks in the sky

Blasting so quickly

and passing us by

now its time

to settle back down

catching the bus

as the school bell sounds

I will miss my summer days

but carry the memories

in so many ways-

*Kristianne

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School starts tomorrow...

What to do....What to do?!

I remember the first day of school, when I was a kid. The new clothes, backpack, shoes....everything felt fresh! I was so excited to begin a new year...it was a new opportunity to invent myself, all over again.

I could be anyone I wanted.

A new school year for me, usually meant a new school. I remember the year I decided I would be the really friendly, really out-going girl, who joined all the clubs. This was totally against my quiet/shy nature, but ended up being my most favorite year.

I was busy, had a boyfriend and made many great memories. Sometimes stepping out of your comfort zone, can reap you tons of rewards! :)

As my kids go off on the first day of a new year.....I wonder who they will choose to be. A new year --- a new opportunity to do anything...to be anything!

Every choice we make is a new opportunity to start new. We don't have to wait for the first day of school, or the first day of a new job, or a Monday to start a diet......every second, every minute is your chance to reinvent yourself!!

Pictures will be on FaceBook :)

Happy Monday

COUNTDOWN.....

Freaky Friday

It's been on the calendar for months and basically forgotten. When the day finally came, I wasn't nervous. I didn't expect to hear anything I didn't already know. The Neurologist would say, "Neurofibromatosis"...I know, I know...”bright spots in the brain” Blah blah blah. But that's not what the she said. The 4mm mass is in a spot where the neuropathways connect the vision. If it grows, “we're in trouble” she told me.

TROUBLE? It seems if the tumor grows, it could greatly impact my vision. Not having anyone there with me at this doctors appointment, is now something I regret. I wanted to hold someones hand. I wanted someone to put the arm around me. The walls of the small room, closed in on me.

“You also have extra fluid and very swollen ventricles”. **Note this MRI was taken in MAY....It's now AUGUST!

I explained my painful headaches, and other strange symptoms.....one quite weird one.....very recently, while working on the computer, or writing, my index finger will suddenly feel “wet”. I pull my hand close, and wipe it with my thumb....but the finger isn't wet. The Dr. explained this is symptoms of seizure.

After doing a full neurological exam, she told me about the tests that I would need to have. She wants to test the fluid flow in my brain...to see if there is a blockage. I will also, have a spinal tap. A full visual field will be done on a every 6 month basis.

Before the appointment, I printed out some NF fact sheets. I showed the sheets to the DR. and she loved them. I told her about my websites, t-shirts and blog. She was very impressed.

I kept thinking, that there was no better time, to show how I am Thriving with NF!

On the drive home, I felt a peace over me. Although I do worry about what is to come...I am not worried about getting through it.

Neurofibromatosis, won't scare me. I won't let it win. I will fight this with everything I have.

Thank you Lord...for my family

for my children--

who give me the will

to keep pushing foward.

Watch over me--and them

Amen