. . . . . . . . SEIZURES . . . . . .
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Fast Sunday is "fast" approaching. If you can add our baby girl to your fast this Sunday, we'd so appreciate it. We need help for the neurologists. They are trying hard to find some combo of seizure meds for Addie. So far no go--they need Heavenly help.
And here's a Thanksgiving message I wrote this week for ThanksgivingHeroes.com. I thought you might lift the gloom from Addie's one-word update. Love you all! --Desi
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I just stepped into home after a 12-hour day spent at the hospital when my son found me and said, "Mom--there's a firetruck outside our house with its lights on. "
"Are you teasing?" He so loves to play practical jokes. I felt too exhausted to "come and see" as he beckoned, but finally I realized he was in earnest.
"They are probably just checking on stuff across the street. Or maybe we have a fire out back and they're coming to tell us." I knew I should've changed the 9-volt batteries in the fire alarms! Sure enough, the blinking fire truck truly was parked outside our house.
"Maybe they're lost!" Then the doorbell rang, and two firemen stood on the porch wearing huge smiles and carrying an overloaded cardboard box.
"Do you have room in your fridge for this?" I laughed and said, "No." They didn't listen and marched right in the door to the delight of the children and the confusion of the teenagers. Setting the box on the counter, they said, "Happy Thanksgiving." We shook their hands in overwhelming surprise and bewilderment. I asked my husband, "Who do we know in the fire department?" and we all laughed again.
After they left, our family gathered around the counter and looked in the box: an entire Thanksgiving feast stared up at us out of that deep box! Instant cheer, a few tears, and a bit of chagrin showed on our faces. "Are we on Random Acts?" my son asked.
We've spent 20 years nurturing self-reliance and getting to a point in our family where we didn't need to rely on anyone. We like to be on the serving end, and it is hard to be in the position of need on any level. We always know of someone worse off--never feel quite deserving. The teens asked, "Surely we don't need this--who could we pass this joy to?" My husband said with tears in his eyes, "This isn't because we're in need as much as it is because people love."
We've spent the last three months nurturing our little baby Addie in the Newborn Intensive Care Unit. We've stared at death twice as she has faced more set-backs than leaps forward. We are so grateful that she is alive and doing very well, especially considering where she's been and how much she has suffered. We do not have a diagnosis; nor will we. She's currently facing seizures that even adult medication cannot control. It is frightening. I cry . . . a lot. We also have great hope that her life is purposeful and that her mission will be fulfilled. We will help her through every challenge now and future. We trust our Heavenly Father in this immense mountain she & we must climb.
We wouldn't wish this on anyone, and yet my teenager said, "I hope when I grow up I have a NICU baby!"
I marveled at the irony of her statement. Built upon the outpouring of love she's experienced from the kindness of friends and strangers, I feel tremendous gratitude. No one wants the accompanying challenges that spark such mercies, but how wonderfully humbling it is to find that in the midst of the mountain trail, you are carried on the wings of God's children. Lifting our spirits, our hearts, our hopes in all the goodness of mankind, you make it easier to ascend the peak.
We love you. Thanks for Giving!
Chris & Desi
All the kids got to hold Addie for the 1st time this week . . .
