Obituary of June Kaitlin Lewis

First of all I would like to thank everyone for coming here today. Kait would be honoured. We have quite a family here today: my parents and family, Cathy's Mom and family. We have support worker family. We have hospital family. We have Holy Cross High School family. We have Scotiabank family. We have Casco family, plus a family of friends and supporters. Welcome to my family. Our beautiful daughter Kaitlin passed away at 18 years of age. Although that sounds far too young, for her condition her body was much older. It was a huge effort to keep Kait with us this long. From Doctors, nurses, lab tech's, respirologists,x-ray tech's, therapists, pharmacists, para-medics, firemen, and many many more. Our daughter Megan once remarked that an advantage to having a special needs child like Kait was all the new friends we had and new people we had met. Of all the different groups of family we have here today some deserve special mention. Kait needed 24 hour care and Cathy & I both have jobs. We needed people to care for Kait when we couldn't. There are several organizations and people that helped co-ordinate care and funding: CCAC Case Manager Heidi Patterson School Health Support Manager Helen Lemay Paramed Co-ordinator Lisa Dewolfe Community Living Support Workers Marita Emminger, Barb Bosma and Joanne Caldwell Dietician Debra Baker We had personal support workers come directly into our home to care for Kait. Some were nurses, some not. I'm sure all were underpaid and overworked but not underappreciated, not by us, not here today. Many of them did it all, feeds, meds, diapers, baths. Singled out here today-Beth Angle, Lynn Hilberdink, MaryAnn Holder, Wendy McDonald, Lizabeth Aube, Luz Makimkim, Aleith Allen,Isabella, Roxanne, Alex, Nancy Bauman, Rachel Chevalier and Kelly Habel, who was like a big sister to Kait. Many of these people got to see Kait at her best, not always, but much of the time. One caregiver stands out above the rest, Kait's # 1 caregiver, after us, was Lynn Thompson. She was with Kait for 9 years, half of Kait's life. When it became painfully clear that Kait was fatally ill and would not recover, we asked Lynn to be with us when we let Kait go. Kait seemed to have quite a love affair with Hospitals. Wherever Kait went, she had to sample the care at the local ER. She overnighted, or at least appeared, in Emergency Rooms in London, Hamilton, Toronto, Brockville, Woodstock, Port Colborne and or course her favourite, St Catharines. Local pediatrician, Dr Zapatta, once remarked that Kait was on a first name basis with every on call pediatrician including Dr's Zapatta, McMain, Samson, Ramsey, Szpejda, Brar, Chrysler and of course Dr Burger who was Kait's regular pediatrician. Once Kait was admitted to hospital and left emergency the girls of Children's 6th floor or C6 took over. They will always be the C6 girls although they are now on the 2nd floor. Some of Kait's nurses included Cathy, Gina, Karen, Linda, Mary, Sheila, Cynthia, Vicki, Virginia, Lexa, Rosemary. There were others but these were Kait's favourites. They saw Kait at her worst. They never saw her at her best. But they knew Kait's strength and her resiliency. They saw her with pnuemonia in both lungs, fever of 104, 20 plus seizures. They kept their composure, even in the worst times, but we could see the worry in their eyes. Come on Kait, you can do it, we're behind you, you'll show'em all. And sure enough, she'd pull through. Kait was like a hard rubber ball. The harder it hit the ground, the faster and higher the rebound. She was a tough customer. One definition of friendship is someone who is there when times are tough. And we had some tough times. These caregivers, doctors and nurses were there for us during the toughest of those times. These people are true friends and are welcome additions to our family. Between hospital stays she went to school. Her first year of school was at the Children's Centre. They had a special needs class that was headed by Kathy Mayo. It was just morning, 9-11 am. It was there that Kait first met Ryan Leaman and Jennifer Barkley. They were special needs students that Kait went to school with at NPCC, Port Weller Public School, Holy Cross as well as the respite program in Beamsville at the CD Hopkins Centre and a week at the Easter Seals camp near Wainfleet. Two years ago, about this time, Ryan passed away but Jenny is still with us and doing great. Kait then went to the Rosalind Bauer Centre for Children at Brock University. That team was lead by Leah Lautenbach and she was the only special needs child there. She loved the interaction with the "regular" kids and they loved her also. Kait went to Port Weller special ed class for 8 years. She had several teachers, the best of them being Jen Crowther, who is here today. She fought for the kids and truly loved them. Her high school years were spent at Holy Cross, an excellent program led by Karen Van Ophem. Kim Davis was her one on one EA and she also helped us with Kait's home care during the summer break. Kait travelled to and from school on bus. Kait was on Sharion's bus while at Port Weller, then Ron and Mary took over for her high school years. Ron drove and Mary was the rider who got Kait in and out. I will really miss our brief chats and hearing them sing with the students. When our 1st daughter Megan was born, she was diagnosed with a seizure disorder. We met with Dr Simon Levin at McMaster Children's Hospital. Phenobarbital was prescribed for a year and she was weaned off and, touch wood, will never seizure again. So when Kait was born and seizured at 4 days old we were not nearly as concerned as we were with Megan. We thought, Oh Crap, not this again, what an inconvenience. Little did we know what an ordeal Kait was in for. The aforementioined Dr Levin is a pediatric neurologist, a specialist in children's neurological disorders. He had left McMaster and joined the staff at the brand new London Hospital for Sick Children. Thus began our odyssey of trips back and forth for appointments, MRI's, EEG's, blood tests, operations, spinal taps, dental work plus several other specialists. We tried every family of anti convulsant drug known plus a couple of experimental drugs. Nothing eliminated the seizures. We knew our daughter had suffered brain damage. When Kait was about 2 we asked Dr Levin what the future would hold for Kait. We were saddened to learn that Kait would probably never walk, talk or stop wearing a diaper."Enjoy your time with her because you won't have her long." 50% of the children with Kait's disablities pass away by age 2. We had already passed the 1st milestone and didn't even know it. 50% of the remainder pass by age 5, 50% of that remainder by age 10. Age 20/21 would be her last milestone. We were going to do everything needed to give her every milestone. Come on Kait, you can do it...we're rooting for you...you can do it.. Her seizure meds had side effects. She would be drowsy and have relaxed muscles which would be contributing factors in vomitting, aspirations and pneumonia. Kait seizured almost every day and had many pneumonias, maybe 50, maybe more. Throughout all of this, Kait never complained. Her calm demeanor was inspiring. Once when I was taking Kait to London she had to vomit before we left St Catharines. I was driving down Linwell Rd and realized she was going to puke. I pulled into a church parking lot and raced around the van to get her out and tipped over to vomit on the ground. When she finished, she turned up to me and gave me the sweetest smile. I realized then just how stressed I was and how carefree Kait was. Kait never cried. All kids cry, every special needs kids cry. But not Kait. Kait never cried. We loved Kait. We hated her seizures, we hated her vomitting, we hated her pneumonias. We weren't too crazy about her stinky diapers either, but we loved Kait, warts and all. Kait made you work to love her. Everyone she touched loved her. That's all it took, one touch and you were hooked. Through all her struggles and drama's I can honestly say that I would do it again, Kait was worth it. I don't begrudge a second of the time I spent with Kait. It never seemed like a sacrifice to us. It was our necessary routine. I realize now just how precious my time was with her. On school days she would get home about 2:10. About 10 to 2, I would start getting things ready, get her feed ready, get out some clean clothes and a diaper. I was like a puppy waiting for it's master to get home. Last Monday morning at Mac, Chaplain Victoria asked us what keeps us together as a family...well, of course, it's Kait. Kait was like our Sun in the sky and we were like her planets who orbited around her. She brought us light, warmth and direction. Right now we are dark, cold and aimless. On Saturday August 22, two weeks ago today, Kait was admitted to hospital with another pneumonia. On Sunday it became clear that is was no ordinary pneumonia, but Kait is no ordiary patient. Come on Kait, you can do it, we're rootin' for you. That rubber ball was going to bounce again. But Kait's breathing was much more laboured than any of us had seen before. Sunday, Monday, Tuesday, Kait's exray's and breathing were not improving. We were warned a breathing tube may be necessary to help prevent respiratory failure. Wednesday morning, Kait was awake and alert..all day long. She had been sleeping for three days. She made great eye contact and followed us everywhere we went. I'm sure she wanted to go home. That's the last time we would look into her eyes and her into ours. On Thursday, blood gases tests showed Kait's respiratory system was tiring and a breathing tube installed. This was a temporary measure to give Kait a rest. It was supposed to let Kait recuperate and let her build up energy to take a run at this illness. Come on Kait, you can do it. That rubber ball was going to bounce even higher this time. On Friday afternoon, Kait began to get worse-blood tests, exrays, deep suctioning, frantic looks from the staff. At 6 pm, her doctor took me aside and told me Kait was gravley ill. The equipment at St Catharines was at it's limit and they were losing ground. There was a longshot machine available at McMaster. Did we want to try? Yes, of course. The transport team from Mac arrived and assessed her. She had no chance in St Catharines and a slim chance at Mac. The transport to Hamilton itself might kill her...please do your best.. Cathy, Megan and I went to a waiting room while the staff readied her for transport. What was happening here? How could this be? They don't know Kait, how tough and resilient she is...they have to be wrong. Come on Kait, you can do it...bounce that ball. She survived the trip to Mac, which was encouraging, and was stable for 24 hours and even briefly showed a little improvement. By Sunday morning Kait had not improved and by Sunday night she was starting to slip again. On Monday, a cosultation with the 2 ICU doctors confirmed our worst fears...Kait was dying and it could not be stopped. Years of pneumonia had permanently damaged her lungs. That hard rubber ball didn't bounce this time...it was rolling away from us and we couldn't reach it. We've all been told at one time or another that no one is guaranteed tomorrow or even today. Every day is a miracle. On Tuesday morning, myself, Cathy, Megan and Lynn Thompson gathered in Kait's room to say good-bye. Tuesday, September 1, 2009 at 10:45 a.m., Kait ran out of miracles. Some of the greatest writers and speakers have written and spoken volumes trying to define what love is. Some of the greates minds in the world have tried to explain love. Our Miss Kait never spoke a word, never wrote a word, never read a word, but Kait understands more about love than anyone. Kaitlin would give and receive love with her eyes and a soft smile. She is compassion, forgiveness, commitment and dedication. She is a student and teacher of love. To help us get through this ordeal, we have to believe in heaven, in God, in re-incarnation. If anyone deserves another chance at life, it's her. Maybe it has already happened. Maybe she is already re-incarnated. Maybe Kait's miracles have started anew. Right now, she's in the arms of a loving Mother who is being taught about love by a great teacher. Maybe 25 or 30 years from now, God willing, Cathy and I will be in a crowded restaurant and Cathy will tap me on the shoulder and gently point to a young family. A handsome young man, a beautiful young Mom, two mischievious young boys. The Mom will look at us and wonder why we look familiar. She can't place our names but knows us just the same. With a glint in her eye, her broad smile will warm our hearts and we will know.... I have to believe.. Thank you.