Today people across southeast Nebraska and as far away as the southern hemisphere will proudly wear baby blue 100 Miles for Jude T-shirts in memory and in celebration of the brief but remarkable life of Jude James Aaron Ruskamp.
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In March, Waverly’s Aaron and Erin Ruskamp learned their unborn son — the third of their three boys — would not survive after his birth. He had a fatal birth defect, called anencephaly — in essence, he was missing much of his brain.
No one knew how long he might live after his birth. Seconds? Minutes? Hours?
And so the family, despite their heartbreak, took to social media, inviting people to live for Jude — experiencing the joy of sunny days, nature walks and raindrops for a little boy who never would.
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Jude Ruskamp arrived two weeks ahead of Erin’s scheduled cesarean section. Born at 3:03 p.m. Aug. 19, weighing 5 pounds, 15 ounces, and measuring 16-inches long.
Erin was with her nurse practitioner when her water broke.
You’re having a baby today, the woman told her.
Erin burst into tears: “I’m not ready. I’m not ready to say goodbye.”
But Jude was ready.
“He definitely chose when to come,” Erin said. “He took it into his hands.”
Despite his prematurity, his anencephaly and a recently discovered life-threatening heart defect — Jude breathed on his own.
In their hospital room, Erin and Aaron savored the moments with their son — ignoring the ticking clock, but always all-too-aware of the passing time.
In an adjacent room, Saint Elizabeth Regional Hospital staff invited family and friends to gather. Happy birthday banners hung from the walls. Party hats were made available.
They sang Happy Birthday at the first hour, and the 23 three that followed.
Family friend and professional photographer Lisa Johnson documented every moment — Jude's introduction to big brothers Kyson, 7, and Gavin, 5; his first bath; diaper changes; footprints stamped; fingers clutching adult fingers; cuddle time with mom and dad; and a fashion parade of tiny knit caps.
“When we hit the second day, we looked at each other and said ‘we have a baby,’” Erin recalled.
When Jude hit 100 hours: family, friends and community members gathered at Waverly High School to pray, to celebrate and launch 100 balloons.
“On day 4, I called the pediatrician in," Erin said. "I said tell me what to do, he is four days old and getting stronger.”
An option, the doctor said, was a feeding tube. It would give Jude the needed nutrients, but it would not alleviate the inevitable. Jude was born with an open wound from where the skull did not form — ultimately infection would set in.
“It was a hard call to make,” Erin said of their decision not to put him on a feeding tube.
Instead, they fed him every hour by dipping a sponge in formula and letting droplets fall on his tongue.
His physical defects left him unable to swallow. The drops eventually slid down his throat.
Hospital staff let Jude break all the rules. He went on walks, enjoyed the ducks and geese in the hospital pond, and receiving more than the allotted number of visitors.
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When the hour mark grew to 140, the Ruskamps were told they could take Jude home.
Fear gripped Erin. Sitting on the edge of her hospital bed she bawled.
It was Johnson who snapped her back to reality. You’re not leaving with an empty blanket. You are leaving with your baby. Smile. What a gift you are getting.
The first night home, neither Erin nor Aaron slept. After that they took alternating shifts — rocking Jude in the Lazyboy, talking baby talk, singing songs, recording every snore and hiccup.
“He would smile … He had this little dimple,” Aaron said.
The only time Jude was not in someone’s arms, was during diaper changes.
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At 9:38 a.m. Monday, Aug. 26 — one week after his arrival — Jude took his last breath. He died in his mother’s arms, his father’s arms encircling the both of them.
Honestly, there was was a lot of anxiety those seven days, Erin admitted.
“I think he was waiting for us to be OK with him,” Erin said.
Added Aaron, “Everybody is here for a purpose and a reason, Jude was hanging on for that purpose.”
And despite the brevity of Jude’s time on earth — his impact was and remains powerful.
People are still logging miles on his 100 Miles for Jude Facebook page — people as far away as Australia and orphans in Uganda.
Letters and gifts continue to arrive on the Ruskamp’s doorstep — most from people they have never met.
Erin opens a book she received from youngsters attending Obasi Ministries summer camp. Accompanied by a fuzzy teddy bear they named Jude, the 5 through 9-year-olds traveled 50 miles around Lincoln by bicycle showing the bear flowers, Bluejays and sculptures; introducing it to firemen and policemen; and enjoying the thrill of sitting on a fire truck, riding the train at the zoo and even getting up close with a wiggling worm at Oak Lake.
Shiloh, a little girl in the group prayed fervently, asking God to let baby Jude live long enough to experience all the love people had for him.
Her prayer was — and continues to be — answered thousands of times over.
“Through God all things are possible,” Aaron said. “But I had no idea.”
Reach Erin Andersen at 402-473-7217 or firstname.lastname@example.org.