January 2, 2009
- Our Sense Of Humor Is Special Too…
When you're dealing with special needs as a family, there comes a point where you must either:
a) laugh,
b) cry, or
c) go completely, utterly, irreversibly mad…
In our family we laugh. (…)
December 26, 2008
- Can I Get There By Candlelight?
This post was originally written in December of 2007 and posted at In The Life of a Child.
"How many miles to Babylon?
Threescore miles and ten.
Can I get there by candlelight? (…)
December 19, 2008
- Adjusting Holiday Expectations
There is a saying around our house. (…)
December 5, 2008
- Choosing To See Beauty…
Parenthood. It all started out so simply. A blank canvas of wonderful plans, hopes and dreams. (…)
November 28, 2008
- Thankful…
Ken and I stood, each with an arm around the others' waist. We watched as our two children ran tumbling, tripping, giggling through the enormous field of tangled vines and cumbrous golden gourds. (…)
November 21, 2008
- For Ruby…
She was here such a short time. Not nearly enough time to say hello. Not even enough time to say goodbye. Not really.
Ninety minutes.
Ninety minutes for a mother to hold her child. (…)
November 14, 2008
- Me Time — The Sanity Pact
How? How do you survive when all of the plans you once had for a family are sent into a heart-lurching tailspin with the words no parents ever want to hear about their child? (…)
November 7, 2008
- A Beyond Ordinary Moment…
I suppose it could be argued that for my family, life has become much more "ordinary" over the past year than it has ever been. (…)
October 31, 2008
- Remembering October…
October 2002. I stood in the NICU of a specialty childrens' hospital, watching the ventilator-driven rise and fall of our daughter's tiny chest. (…)
October 24, 2008
- The Things People Have Said…
We've all had them. Thoughtless, insensitive and sometimes, the downright rude comment or question. (…)
September 26, 2008
- The Realities of Reflux…
My husband always jokes that he can tell what kind of a day it has been by peeking out onto the back deck to see what has been hosed down during the day…
However, some weeks are too much for even humor to salvage. (…)
September 19, 2008
- Even When We're Sick… The Challenges of Discipline With A Medically Fragile Child
We sat at my dining room table, reviewing Jacqui's care plan for the next three months as Jacqui lay curled up nearby on the couch in an uncomfortable knot. (…)
September 12, 2008
- But What Can Just One Person Do?
Have you ever wanted to help someone but didn't know how? Ever found yourself wishing that there was something you could do, but the problem just seemed way too big? (…)
September 5, 2008
- My Secret For An "Ouch-Free" G-Tube
Once upon a time we had a wonderful NICU nurse that let us in on a little secret before we took Jacqui home with her brand new G-Tube — a secret that would keep Jacqui's skin around her G-Tube protected and help to prevent granulation tissue from forming. (…)
August 29, 2008
- Top Ten Things I've Learned About Reflux…
10. Pediatricians often say that babies with reflux will "grow out of it" by age one. They're lying. The pukes just get bigger and more colorful.
9. (…)
August 22, 2008
- Life On The Edge…
"How do you do it?" I asked her. (…)
August 15, 2008
- Bedside Manner — Right or Privilege?
I hear it all the time. You have too. (…)
August 8, 2008
- All Smiles!
We hear it surprisingly often from medical staff … "Jacqui does so well at doctor appointments! Not at all what we would expect from a kid who has spent so much time in hospitals. (…)
August 1, 2008
- Oh, How I Wish … Thoughts Before Surgery
Even when you strive to be an optimist, there are times when life just gets you down. (…)
July 25, 2008
- Taking The Plunge … Out-Of-State Surgery And How We Did It
The words no parent ever wants to hear: "Your child needs surgery."
These four little words become even more frightening when the surgery that your child needs is so specialized that there is no one where you live who is able to provide it. (…)
