Flying under the radar...

We've been enjoying a low profile the past few weeks. Rylee is finally breathing clear, sleeping deep, and grousing whenever she doesn't want bothered. She's also back to being vocal when her feeding is due. We are settling back into her schedule-therapies, programs, appointments. She needs a receptionist just to keep her calendar straight! I peeked in on her over the weekend...long lanky "froggy" legs, massive amounts of blond hair, dark eyelashes dusting those chunky cheeks and hiding bright blue eyes, slow steady breathing...I still cannot get over our "Sleeping Beauty" and what an amazing little girl she is. Those on the outside looking in see only what she can't do, her limitations, her diagnosis. How thankful we are that God allows us to see her as she is-His creation, "fearfully and wonderfully made." A quick check on Ryann, our "Snow White," reminds me again of our blessings-I turn her right side up, brush back massive amounts of brown hair, dark eyelashes dusting checks that have lost their toddler fullness, long lanky legs, slow deep breathing with the occassional snore. I never get used to that mommy fullness of heart. How grateful I am for my girls.
We are fast approaching the date for Rylee's Rally, a resource fair in our community for special needs families. When we took Rylee off the ventilator she was three weeks old. Because of the severity of this disorder the only thing we came home with was Hospice services. Thankfully we had wonderful medical staff, and I have a big mouth and kept asking for more! Because we kept asking and hoping, we learned about Birth to Three, Make A Wish, Kidlink, SSI, Medicaid, Waiver/Title 19, homebound schooling, Family Support Funds, and the list goes on and on. I wanted to make sure other families go home from the hospital, knowing there are programs, funding resources, and people out there willing and ready to help. No other family should go home feeling overwhelmed and alone. I may have been the "instigator" for the fair, but there are two other mom's on the front line, digging in their heels making sure everything goes off without a hitch. It's been great learning from them, working with them, and getting to know them better. It's exciting to see vendors and agencies in the area becoming involved too. While this is our first year, we're all hoping for a great turnout and day for all the families. "Special needs" can cover anything from learning disabilities, ADD, ADHD, dyslexia, to Down's Syndrome, cerebral palsy, pediatric cancers, to chronic and/or life threatening illness, and anything and everything in between. Rylee helped us envision the dream, but each person involved has helped make it happen. Please pray that many families will be helped and that those involved (the vendors and agencies) learn that our children are not defined by their diagnosis.
While writing this and reflecting, it's hard not to hum one of the songs we heard during last year's Disney parade...(cue music) "Just believe and your dreams will come true..."