“Tashawna teaches me over and over the power of a positive attitude, no matter what life brings.””
“From the moment we arrived, we felt that George Mark had our best interests at heart.”
– Reggie, Jabari’s dad
When Jabari was 7 months old, Kristalle and Reggie noticed that he wasn’t reaching his developmental milestones. They learned that he had a genetic condition called spinal muscular atrophy (SMA). Soon after, they were told that Jabari had Type 1 SMA which would probably end his life before he turned two years old.
After learning about his son’s condition, Reggie says, “We didn’t want to do things that would make Jabari suffer unnecessarily just to prolong his life. We made decisions along the way to keep up his spirits and make sure he was happy.” Jabari was a smiling baby who loved being held and cuddling with his parents.
The Cooks first learned of George Mark from their social worker at the local children’s hospital. Jabari had trouble swallowing and breathing and he was scheduled to undergo an operation to insert a feeding tube. Reggie says: “We wanted to bring Jabari home after the surgery, but we were planning to bring him to George Mark first for transitional care to learn how to take care of him.”
After Jabari had his surgery, Kristalle and Reggie received the devastating news that their son’s condition was declining, and he had only a very short time to live. Having already toured George Mark and met the skilled nurses who would care for their son, Kristalle and Reggie put their trust in George Mark for end of life care for Jabari.
Reggie says, “From the moment we arrived, we felt that George Mark had our best interests at heart.” Kristalle and Reggie immediately felt the difference between the hospital and George Mark, and the influence of George Mark’s warmth on their family.
While Kristalle was very satisfied with the medical care Jabari received from the hospital, she says, “A hospital isn’t a place for a baby. It’s cold and sterile. Jabari had a beautiful smile. His light was dimmed at the hospital. George Mark was the exact opposite for us…at George Mark, Jabari was the baby that we knew all that time.
At George Mark, Reggie was able to sleep in the bed with Jabari and to hold him. Reggie says, “The breathing tube is a huge deal, and the beds at the hospital are small. I’m a big guy, 6 feet and 5 inches tall.” George Mark provided the Cooks the setting to give Jabari, and themselves, what they needed: to be close together and to make Jabari feel safe and loved.
Kristalle, Reggie, and Jabari had three days together at George Mark. The day Jabari died, in their midst of their loss and pain, Reggie remembers that the nurse supported him in bathing his son. Bathing Jabari was, in its own way, an act of grace. Reggie says, “I was able to bathe him, dress him, and brush his hair, and we could grieve and pray in a respectful way.”
Reggie and Kristalle reflect on their experience as Jabari’s parents: “You don’t want to look back with regrets. It’s hard enough. When we look back – we look at happy times and positive times. We have a lifetime of memories.”
“George Mark was a haven for Ukiah and our whole family.”
– Tylia, Ukiah’s mom
By Tylia Gardner
Like expectant moms everywhere, I cherished thinking of the special times I would have with my baby, the new family my husband and I would create, and my baby’s healthy development. When I learned from an ultrasound that Ukiah had a cleft palate, I knew that he would need to undergo surgery eventually. I was enormously relieved to learn from my doctor that Ukiah’s heart, which could be compromised by his condition, was healthy.
Our hope for our baby’s gentle entry into the world was upended when we discovered, after his delivery, that Ukiah had a severe form of a terrifying breathing condition called laryngomalacia; in simple terms, he had a narrow airway. The first two and a half months, we lived with Ukiah in the neonatal intensive care unit: it was touch and go whether he would survive.
While we didn’t yet know about George Mark during this sensitive time, we came to learn about the House from our social worker at the hospital. When we needed George Mark’s care, it was a haven for Ukiah and our whole family. I thank you for your past support and encourage you to consider contributing to George Mark to help other families, like us, who turn to George Mark at a time of profound challenge.
After finally settling in at home with Ukiah and a home nurse who could help us monitor and treat his breathing, life became almost normal. Then, Ukiah experienced the traumatic event we had desperately sought to prevent: as my husband and Ukiah’s nurse drove down the freeway to a medical appointment, our precious seven month old son suddenly ceased breathing. After a frantic stop at a gas station, an off duty firefighter performed CPR, which saved his life.
Ukiah wasn’t the same baby after he lost consciousness, however. He had been through a medical ordeal, and had frequent muscle tensing and seizures. Ukiah was readmitted to the hospital, and we went back and forth between home and hospital again. When he was one year and seven months old, Ukiah developed a severe bacterial infection and his physician informed us that we could stay in the hospital for two months, or be admitted to George Mark, which could aid his recovery and our well-being.
George Mark came to be our bastion, but we didn’t initially recognize it as one. Before we visited George Mark, my husband and I had imagined that the House would be sterile, grey, and institutional. We worried that there would be no life within the doors. When we visited George Mark, we discovered that, contrary to our mental image, the House was lovely and inviting. We immediately felt at home. For the first time, during the emotional ups and downs of caring for Ukiah, we felt we could breathe. It was not until we had the support we experienced at George Mark that we realized how much we needed it. We stayed at George Mark with Ukiah for a month and a half in a comfortable suite and we got to live our lives. Ukiah stayed in the colorful Train Room and the nurses helped us vigilantly watch over him, giving us confidence that, at least in this moment, we would all be okay.
Ukiah’s infection was gone, and we were given the green light to go home. We had seven more months with our sweet baby. After Ukiah’s health declined, he died peacefully at home in our arms.
As we began absorbing Ukiah’s loss amidst our shock and grief, we learned that George Mark’s staff would help us fulfill our deeply-held wish to hold Ukiah’s Celebration of Life ceremony at George Mark. We wanted Chaplain Mary to officiate, and the staff arranged for her to do so. They took on all of the guesswork and tasks such as arranging the viewing, cremation, and let us grieve. It’s been nine years ago since Ukiah died and George Mark has been a source of comfort to me and my family ever since.
On Ukiah’s birthday and the anniversary of his death, my husband, our daughter, and I come to George Mark, the special place where we remember Ukiah, and feel even closer to him.
“Caring for Robert provided a new way of thinking about what is important in life…”
– Elisabeth, Robert’s mom
Elisabeth and Kevin were happily expecting their first child after a full-term and uneventful pregnancy. When their baby was born, they were devastated to learn that there had been an insult, or injury, to his brain caused by a lack of nutrients and blood flow to his brain in utero.
Each month after Robert was born triggered a realization that he would not meet developmental milestones. When he was nine months, Elisabeth and Kevin learned that Robert would never walk or sit up. Ultimately, they were told that Robert had cerebral palsy and epilepsy. He also had cortical visual impairment and global developmental delays. Elisabeth says, “It was very hard and overwhelming for us…The first year we spent trying to figure out what life was going to be like.”
Yet, Elisabeth came to understand her baby’s life, and his role in hers, in a different way. “When Robert was a baby, I told my mom that he was not going to have the quality of life I wanted him to have. She said, ‘He’s going to have a wonderful quality of life. He has a loving family, good medical care, and everything he needs.’ Caring for Robert provided a new way of thinking about what is important in life, and it changed my perspective on what a good quality of life means.”
The Lamberts welcomed four more children into their family. As they grew up, the siblings gravitated toward Robert to read to him and do their homework by his side. Living far from their own parents and siblings, Elisabeth and Kevin needed to travel to attend family reunions and events. Initially, they were able to take Robert with them, but as he entered his teen years, he grew more fragile and could not safely travel. The Lamberts turned to George Mark for respite care for Robert, and were greatly relieved to discover a warm, lovely home-like setting where the caring staff skillfully cared for him.
Last year, Robert’s doctors discovered an intestinal blockage that disrupted his ability to absorb nutrients. They advised the Lamberts that he would not survive surgery to remove the blockage, and they recommended compassionate end of life care. Initially, Elisabeth wanted to keep Robert at home. She felt capable of caring for him, and her family valued their closeness and privacy. Yet, after consulting with Robert’s physician, Elisabeth, who exudes a quiet confidence and resolve, felt that the quality of the time she would have with her son would be greater at GMCH. She also valued the medical attention of George Mark’s talented clinical staff who could prepare her and Kevin for what to expect every step of the way.
Elisabeth and Kevin cherish the memory of being able to focus love and attention on their beloved son during the last weeks of his life, and feel that their time at George Mark Children’s House was a unique gift. Elisabeth remembers that Robert stayed in a room at George Mark with a cowboy theme, called the “O.K. Corral.” When Elisabeth saw that he had been assigned this room, she smiled, and said, “Everything is going to be okay.”
Elisabeth and Robert loved going out for walks in George Mark’s spacious gardens where they enjoyed the hummingbirds and butterflies. On a cool morning, she was amazed to see a doe feeding her young offspring. Kevin spent special time with Robert in the spa. Younger siblings, Nathan and Caroline, felt especially at home at George Mark and loved the attention and activities planned just for them by our Child Life Specialist and Social Worker.
As Robert came to the end of his life, his whole family spent time with him in his room singing the songs that they loved, and finding sustenance in their faith and close bonds. Elisabeth says, “It’s odd to say, but what was the most heartbreaking time in my life was also a very special time. We are blessed with incredible peace.”
“Kaitlyn can’t wait to come stay at George Mark!”
– Liz, Kaitlyn’s mom
Kaitlyn has uncontrolled epilepsy and gastroparesis, a severe digestive disorder. But in many ways, she’s just like other young teens, with a passion for drawing and learning about art. Kaitlyn needs 24/7 care, and her mom Liz juggles it all—while being a full-time mom to Kaitlyn’s 12-year-old brother Kai, too. Liz is a true hero, and George Mark Children’s House is proud to be her back‐up.
At her first Respite Care stay, Kaitlyn threw herself into art projects, sang with our Music Therapist, and spent some time with our friendly therapy dogs. When we learned Kaitlyn had already set her cell phone to count down the days, hours, and minutes until her next visit—we knew we’d succeeded.
“George Mark Children’s House helped us to truly enjoy our time with George, even in the midst of our despair.”
– Alison, George’s mom
By Alison Eddy
When our baby George was born, we were overjoyed. When we learned about his terminal diagnosis, we were devastated. When George defied all the doctors and we discovered we would have more time, we were bewildered. How could we live in an indefinite state of grief and sadness? How could we be joyful with George and give him a joyful life knowing that he was going to die?
The very fact that George Mark Children’s House exists helped us to truly enjoy our time with George, even in the midst of our despair.
We are privileged to be part of the family at George Mark Children’s House and honored to share with you a bit about our beautiful boy George. Recently, we celebrated what would have been his 10th birthday.
We spent the first six weeks of George’s life at Children’s Hospital in Oakland (CHO). Remarkably, his condition remained stable. We were absolutely terrified to take him home. We were first time parents; we had never changed a diaper, let alone a feeding tube. It was scary knowing he might pass at any moment. Thankfully, our good friends at CHO convinced us to visit George Mark Children’s House, and that tour changed our lives.
We came to George Mark Children’s House for two weeks for the Transitional Care service provided to families who are transitioning from the hospital to caring for their child in their own homes. Those two weeks gave us three things: confidence, comfort, and a sense of normalcy.
We became confident because the team at George Mark Children’s House taught us how to care for our son medically and how to help him develop the gifts and talents that he was given. Had we not been given that confidence, the time we had with George would not have been as enjoyable because we would have been worrying about all the little details of how to care for him.
The George Mark community helped us to be joyful in our grief. They provided a foundation of joy on which we could build George’s life, which is an amazing gift.
Now that George is gone we’re still a George Mark family and we can still come here to remember our little boy with other people who knew him and other families like ours.
George now has two little sisters. We visit George Mark Children’s House regularly with our daughters. This is a way that they can know about their brother and know about the true meaning of the word joy.
George Mark Children’s House is a unique and special place. We would like to thank all of the George Mark team for taking care of us over the years. We would also like to say thank you to all of the donors, supporters and partners that help families like ours in times that feel very dark. You give families like ours joy with our loved ones. Thank you all very much.
From our family to yours, we wish you comfort and joy.
“From the moment we entered our room at George Mark Children’s House, we were finally a family.”
– Amie, Ruthie Lou’s mom
Ruthie Lou was just two weeks old when her parents were told she would not survive. They were beyond devastated.
When they learned about George Mark, they realized they’d found a way for Ruthie Lou to experience life away from the restrictions and beeping machines of the NICU. George Mark gave them a space to bond as a family and celebrate the short time they had with their daughter.
Ongoing counseling at George Mark has also helped Amie and Chris navigate their grief and the fears associated with learning they were expecting Ruthie Lou’s brother, Reid. “The entire staff at George Mark has supported us and held our hands,” Amie says. “They’ve held us during the most devastating time of our life, and celebrated with us during our greatest joys.”
“George Mark Children’s House was our refuge at a tumultuous time.”
– Shekinah and Peter, Lars’s parents
Lars was born at just 32 weeks, and was soon diagnosed with severe polymicrogyria—a rare condition that affects brain development. His parents Shekinah and Peter were told he was unlikely to survive infancy.
When they visited George Mark House and met with our staff, they knew they were in the right place. “We immediately felt safe, protected and at peace with the staff,” says Shekinah. GMCH gave them a safe, supportive space to be with Lars as a family, relaxing in the soothing warm water of our spa, enjoying a picnic, and introducing Lars to close friends and family.
“Thanks to the volunteers, doctors, nurses, and staff, it was the most cherished time we spent with our son. They were like angels, helping us cope and say goodbye to him as he was gradually fading.”
“I was so grateful for George Mark Children’s House. Everyone was sweet, supportive and loving. I didn’t have to fight anymore.”
– Allison, Michael’s mom
Born healthy, Michael developed meningitis at 18 days, and at two months, he developed hydrocephaly that required surgery. Allison heard again and again that her life with Michael would be difficult. But he came out of his surgery smiling, and she realized that even though it would be an uphill battle, they both had the strength to face it.
Michael’s health began declining around his 13th birthday. Allison learned about George Mark and decided to spend Michael’s last days with us.
“For 13 years, I was Michael’s big bulldozer mama tiger trying to make things happen for him,” she says. The George Mark Children’s House gave Allison and Michael a place to be together where they could feel supported and in control. “George Mark’s staff understood and appreciated Michael. It was a wonderful way to honor an amazing kid.”