Christy and Nick Jordan (Mom and Dad)


One pound, twelve ounces. That¹s how much Elias weighed when he
was born. Stuck in the birth canal, breached, he arrived by an emergency
c-section fifteen weeks before his expected due date with an Apgar score of
zero.

³Is he alive?² I asked when I awoke from anesthesia. The doctor
who resuscitated Elias said he was alive but she wasn¹t sure if he would
survive. Then she wheeled me in to the Newborn Intensive Care Unit to meet
my first child. In a morphine haze, I reached my fingers out to touch his
small hand. He grasped my finger with a reassuring grip.

During Elias¹s 94 days in the hospital he suffered a brain
hemorrhage, seizures, chronic lung disease, apnea, and hydrocephalus. He
underwent both heart and brain surgery before he weighed two pounds. A few
days before Elias finally left the hospital, a nutritionist came by his crib
to check his chart. She looked down at her clipboard, up at Elias, then
again at his name written on the wipe board above his bed. ³Is this the same
Elias that used to be in the Level Three room in the corner Isolette?² she
asked me.

³Yes² I replied.

³Wow² she said, ³He looks greatŠ I didn¹t think he was going to
make it.²



How could any of us know how determined one little boy could be?
Elias, now four, doesn¹t let his visual impairment, Chronic Lung Disease, or
Cerebral Palsy define him as he continues to defy expectations and explore
his world. He uses a walker for mobility, navigating the uneven terrain
around our Alaska home. Though he struggles with balance, motor planning,
and trunk control, he¹s determined to in his words, ³Do it by-self.²



We do not have any extensive therapy programs in Alaska and so
we will need to fly to Seattle to participate-- but we know Elias will
flourish with the opportunity. We have researched the TheraSuit and believe
it will offer Elias a sense of body alignment that¹s not possible on his
own. We¹d like to thank the founders of Bright Steps Forward for creating a
venue of support for families who can not afford extensive therapy
opportunities on their own. We¹d also like to thank all of you who choose to
sponsor Elias along his road towards increased mobility and independence.
And, of course, little Elias, who teaches us how to live without knowing
what tomorrow will bring, how to see the extraordinary in the ordinary-- in
the sound of his breath, the curve of his lips.



To read more about Elias and our life in Alaska, please visit my
blog called Following Elias, hosted by the editors of American Baby, Family
Circle, and Parents Magazine at: www.parents.com/followingelias