Our Story

a family's journey of faith

Have you ever met someone who you knew would change the world just by being here?  Someone that radiated excitement; that drew you in with just a smile; and had a soul so pure that you understood you were in the presence of someone glorious?  Well, I have, and that ‘someone’ was a heavenly gift in the form of a baby girl named Kenadi Jean.  At the time, little did we know that her existence would revolutionize our entire perception on life.

Our little June bug blessed us when she arrived on June 27, 2008.  She was highly anticipated as the first child for us, and first grandchild to Grandma Jean and Randpa (Grandpa Randy).  Although she was delivered on a Friday at 4:45 p.m. it would be several days before she took her first unassisted breath.  Due to a traumatic birth experience she suffered a severe and life-threatening anoxic brain injury.  Our family prayed, hoped, and waited together as we eventually realized that the dream for her life had been transformed.

Her early evaluations were brief and inconclusive, and eventually we were told that ‘only time will tell’ the severity of the trauma.  She was sent home on a high dose of Phenobarbital, weaned, then switched to Valproic Acid to control her initial convulsions.

In September of 2008 she began having strange twitches immediately upon waking that were initially thought to be break-through seizures due to the medication change.  She regressed in previously achieved skills with the worst loss being her big, expressive, toothless grin that communicated pure love.  Soon we documented eyes rolling up and to the right; lip smacking; arms and legs flexing straight out in front of her; and her back arching.  These distressing characteristics became more severe as time went on.  After several medical appointments, we pleaded with the local specialists to figure out what was happening to Kenadi and to fix it.  Her Pediatric Neurologist concluded that it was acid reflux but, we were not convinced.

Our many prayers were answered when The Cleveland Clinic Children’s Hospital was revealed to us as the ultimate solution.  Just before our first scheduled trip to Ohio in December of 2008, Kenadi was baptized into Christ, surrounded by a church full of God’s people, and His holy love.  It was the most beautiful day of her life.

Our initial visit was with Dr. Elaine Wyllie, a leading Pediatric Neurologist Epileptologist with the hospital, who had great posture, because of her ballroom dance instruction.  She simply asked us what our story was.  She listened intently as we detailed the last six months of this precious angel’s life.  We explained that through our own extensive home research we believed that it was Infantile Spasms, an age-dependent form of epilepsy often associated with an anoxic brain injury at birth.  Dr. Wyllie simply stated, ‘I truly believe you are correct, so let’s get started’.

After a week-long EEG monitoring session and numerous grueling tests, we were headed back home with the accurate diagnosis of Infantile Spasms.  We began the expensive treatment plan of the Adrenocorticotropic Hormone (ACTH), a painful and heartbreaking intramuscular injection given in her thigh every day for four weeks and then every other day for another six months.  I’ll never forget how her little lip quivered when she cried, as Gramma Jean held her arms and sang You Are My Sunshine softly in her ear, while I administered the life-saving drug.

People on steroids have been said to be ‘wired and tired’ and this was evident in how Kenadi required round-the-clock care, as she literally never slept.  Gramma Jean, her Daddy and I took shifts throughout the night so that she constantly had someone walking, bouncing or rocking her.  We could have fallen asleep standing up and looking back we wonder how we ever survived those days.Kenadi ballooned out like a marshmallow, and the excessive hair growth gave her an attractive unibrow.

Although the spasms dissipated almost immediately, which we were immensely grateful for, her smile remained absent.  Sometimes, you don’t appreciate what you’ve got, until you haven’t got it anymore and I really missed her smile.  One night, I got down on my knees and with tears streaming down my face begged God to please let her smile again, so that I knew by her expression if she was happy, or not.  About a month later, when we were browsing at Target, Kenadi cooed and grinned at a random lady who was shopping in our aisle.  My mother looked up and proclaimed, ‘Thank you, Jesus!’ while I laughed uncontrollably.  I’m pretty sure that sweet lady thought we were truly crazy!

Because of Kenadi’s weakened immune system we basically had her on lock down.  We posted a sign on the front door discouraging any unnecessary visitors; family members with even a suspected illness were forced to wear a mask; and repetitive hand-washing became the norm.  For her weekly blood pressure and blood level checks we were escorted through the back door of the clinic to eliminate her exposure to germs.  Despite our best efforts, in April of 2009 she contracted influenza and pneumonia.  She was ambulanced to Rapid City Regional Hospital where her fever-induced spasms briefly returned.  In July of that same year we were able to wean her off of all anti-seizure medications, allowing the true Kenadi to emerge.

We spent the next two years simply loving life.  Kenadi was growing and enjoyed swimming; stroller rides; watching Dora the Explorer and Caillou; swinging in the porch hammock; DQ ice cream; reading books at the library; Pottery2Paint; playing the piano; naps with Gramma Jean; homemade smoothies; bubble baths; giving hugs; and playing on the iPad.

She did not like the wind; you singing the happy birthday song; the phone ringing; loud laughter; wearing a hat; yucky medicine; Sun Catcher’s Riding Therapy; and crowds.

She continued to receive Physical, Occupational and Speech Therapy through the Birth to Three Program twice a week.  She liked to blow spit bubbles; make consonant sounds; show you her tongue when you asked to see it; make choices with her eye gaze; and could recognize shapes and colors.

There were dreadful road trips to Rapid City Children’s Care to get casted for orthotics, fitted for a stander and gait trainer, and attend a seating and positioning clinic; to the pediatric dentist for a check-up; the orthopedic surgeon to eliminate scoliosis risk; to the Denver Children’s Hospital to see the spasticity specialist and local Doctor appointments for general illnesses; tests and x-rays.

Realtors for Kids asked Kenadi to be their poster child; we launched a successful campaign to get a shopping cart with an infant seat at Safeway; all of us helped out with clean-up day at the Spirit of the Hills Wildlife Sanctuary; Songs of Love Foundation recorded a song especially for Kenadi; the family was interviewed for ABC’s ‘Extreme Makeover Home Edition’ television show; Little Me Boutique custom-made bigger bibs for Kenadi; the family encouraged West Elementary to install a hands-free handicap access door at the front entrance; Pediped children’s footwear founder created two pair of exclusive soft-soled shoes just for Kenadi; and Make-A-Wish granted Kenadi’s wish!

I continued with my studies at SDSU West River Nursing School while my mother cared for Kenadi.  I graduated in May of 2010 and accepted a nursing position at our local hospital.

As the days turned into weeks; weeks into months; and months into years it became apparent just how many physical obstacles we were facing as Kenadi grew.  She struggled between hypo- and hypertonia.  She could not maintain neck control; lacked trunk support; had oral texture aversion; sensory overload; and the list goes on.  But, when you take away the list and look at this amazing, hard-working, determined, lovable little girl- the charts, graphs and statistics disappear.  It was when I stopped caring about what the growth and milestone charts said; about other mother’s grocery store advice; and about the doctors’ grim prognosis that I started seeing my child as an individual who was phenomenal.  None of that other stuff even mattered.

Kenadi started school and continued her therapies there.  I had constant anxiety about this- Will they be kind to her?  What if she cries?  Will she get enough to eat?  The fears that every parent has about letting go for the first time.

Her Papa KC played a crucial role in expanding Kenadi’s boundaries by taking her swimming at the crowded outdoor Aquatic Center pool; shopping in her Kid Kart at the grocery store; bowling at the noisy Lucky Strike Lanes; and to play basketball at the Rec Center’s indoor court.  I believe it was I that needed that push more than Kenadi but in the end, we were all astonished at how well she could cope in these situations, given her past struggles.

The arrival of Kenadi’s baby sister, Kannan Marie, rocked her world on January 22, 2013.  Always having been known as a ‘momma’s girl’, Kenadi did not like sharing her mother very well.   Despite the occasional fit for attention, she loved her little sister dearly and Kannan loved her back.  They shared playdates at the park; backyard picnics; story time; side-by-side Jenny Jump-Up moments; and professional photos by Lindsey Rose, which I will always treasure.  Those memories of the two of them together will be engrained in my heart forever.

On a sunny Monday afternoon in March of 2014, I came home from work and Kenadi was lying down for her one-hour rest.  She rarely ever fell asleep but it was an opportunity for her to have some quiet time alone after school and lunch.  I caught a glimpse of the news on television while I changed my clothes and KC went to get her up.  Suddenly I heard him scream my name.  The horrified sound of his voice shook me to the core, a sound that is now a nightmare.  I rushed into her bedroom to find her lying in her own vomit, blue and not breathing.  I cried her name, told KC to call 911, and began CPR.  The police and ambulance sirens were within ear shot in a matter of minutes, a sound that brought relief- knowing that help was near.  Now, a sound that causes fear and anxiety.  They loaded Kenadi into the ambulance as I jumped into the van and raced the three blocks to the hospital.  I burst through the doors and yelled for them to call an emergency code blue.  Here are my friends and co-workers about to witness my baby girl trying to be revived.  Dr. Bailey; Dr. Anderson, our Pediatrician and family friend who was not even on call; and our crew at Spearfish Regional Hospital were amazing.

I knew that she was gone after they got her into the ER, but my heart held on to a shred of hope.  They let me sit up at the head of the bed while they tried everything in their power to save her.  I leaned in, gave her a kiss on her cheek and whispered in her ear, ‘If this is your time to go, honey, then you go and I’ll meet you at the beach with your hair in pigtails.’  … and, all at once I had to say goodbye.

The entire next month is nothing but a blur to me and I had to constantly remind my heart to just keep beating.  I do remember that Mary from Fidler-Isburg Funeral Chapel let me hold Kenadi after her autopsy.  I wrapped her in a quilt and rocked with her in the wooden rocking chair.  I remember the butterfly stickers blanketing her casket made the sunshine dance off of it as we drove away from the cemetery.  And, I understood that family and real friendship is shown in times of despair.

Kenadi was a sweet five-year-old girl who had a loving spirit, understood more than you realized, and possessed great determination.  She was non-verbal yet communicated effectively with body language, sounds and eye gaze.  She could not sit or stand without assistance yet longed for her independence.

Kenadi like Team Umizoomi and had the best crazy shake; reading Dora books, especially turning the pages; paying Paint Sparkles on the iPad; splashing in the pool; having her back scratched; the color pink; Jack Johnson music; butterflies; strawberry-banana smoothies; popping bubbles; playing the board game, Trouble; going to school; brushing her own teeth; and hugs and kisses.

Kenadi enjoyed six-wheeler rides; jumping on the trampoline; digging her toes in the sand; playing with her little sister and cousins; learning new things; backyard picnics; finger painting; swinging at the park; rocking in Randpa’s papa bear chair; playing basketball; riding in the motorized Walmart scooter; long walks on the bike path; and eating Funyans while bowling.

She is remembered for her beautiful, long eyelashes; her adorable Pediped shoes; being a silly little girl; her flirtatious smile; how hard she tried her happy ‘dolphin squeal’; giving fives and doing the fist bump; how truly sweet she was; and being a great snuggler.

She was looking forward to seeing her Make-A-Wish come true; receiving her Rifton Adaptive Tricycle, a summer camp out with her family; her sixth birthday; and another school year with Miss Betty.

Growth is endless with a special needs child and her life changed us beyond anticipation.  We have learned more from Kenadi’s journey than any other time in our lives.  We learned patience, and we got to witness miracles that you otherwise would have been too busy to notice.  We learned acceptance and realized that we are wrong to judge, and we learned that there is a thing called unconditional love.

I miss her crooked little smile.  A smile that said everything she couldn’t.  I miss the dip in her chest.  I used to joke that you could eat a bowl of cereal out of it.  I miss her little feet and her funny big toe.  I miss getting her out of the tub and playing games in the mirror.  I miss putting lotion on her back while singing The Roll Over Song.  I miss stroking her soft hair and cuddling up for her favorite books.  I miss seeing her face light up when she saw me coming to pick her up from school.  I miss taking care of her.  I miss her breath, it smelled like sweet rice.  I miss my Kenadi.  I was looking forward to our future together… me eighty and her sixty, just us two girls watching the world go by.

Our daughter passed away unexpectedly from asymptomatic pneumonia and a probable seizure on March 24, 2014.  During her brief visit on earth she touched many lives.  As we grieve our enormous loss, we take comfort in creating this foundation to carry on with her amazing spirit.  We will spend the rest of our lives trying to create a better world for other special needs children and their families.

Our love to you all,

The family of Kenadi Jean Weis