Thursday, November 12, 2009

NF has NOTHING on Rachel

Thriving Thursday

I know I said I was taking a break from blogging, but I wanted to share with you a story about Rachel.

Rachel is my 6 yr old daughter who has NF1. Neurofibromatosis has affected our family in many ways. We seem to always have appointments with doctors, or MRI's to go to. It has definitely been a roller coaster ride.

NF1 has affected Rachel's growth in a BIG way....or small way. She has always been tiny. Born at 6 pounds 6 ounces, she has stayed in the 5th percentile her entire life.

Diagnosed with NF1 at 3 months old, Rachel has never let anything stand in her way. She came out of me, quietly, never crying....just taking everything in.

I remember looking over at her, right after she was born. The nurses were trying to get her to cry, but she didn't. Relaxed and breathing fine, she just looked right back, as if to say, "whew, mommy, we did it!"

Today, still in the 5th percentile--weighing barely 35 pounds, she is feisty and doesn't let her size slow her down. While the other kids tower over her, she knows how to stand up to them. It's amazing to watch!

Rachel's school had a Veteran's Day concert....the kids all sang great tribute songs, and little Rachel's voice carried over everyone else's :)

There was a boy standing next to her who was being less than cooperative...So Rachel gave him a shove to get him back in line. The boy just looked down at Rachel and up at him, then put her hands on her hips as if she was scolding him. It was quite a site....and the boy quickly turned around and did what he was supposed to do! That's my girl!

She may be small, and she may have NF....But this girl doesn't let that stop her! I pray she keeps this feisty will help overcome all her obstacles!

So my Thriving Thursday, is my little "Daisy Girl"....She fills my heart with such joy, and she teaches me to never let anything stand in my way, or slow me down.

I love you Rachel Daisy!


  1. Kristi,
    I had no idea Rachel was diagnosed so early. What about the other two? How come I didn't know about this? I'm sure I would have remembered if I had known. I am sorry I was so uninformed.

  2. I can not even tell this child has nf. You can tell on me if you know what to look for the head bump on my face and a small bump on my scalp.