Tami’s Blog: Our family stories
By Tami Greenberg
Wow, 2020 has been a roller coaster, hasn’t it? I hope all of you reading this are finding ways to manage the stress and anxiety that’s been a constant companion this year. For me, one of the ways that I stay centered—and keep perspective about the most important things in life—is to ground myself in the stories of families we are serving at Ronald McDonald House Charities of Kansas City. Whether they are examples of triumphantly overcoming illness, or a family fighting for their weakest member, I know that we at RMHC-KC are making a real difference in the lives of these families. By giving them a room at one of our Houses (or a hotel room during this pandemic), we are helping them stay together in the midst of a chaotic and terrifying situation. We have provided over 2,000 stays to families with sick kids this year. And today, in hopes that it will lift your own hearts and whatever burdens you bear, I share with you three families whose lives have been impacted by RMHC-KC during the last six months:
Quisha Reed’s son Ezra was born prematurely in Mulvane, KS (near Wichita) in May 2020, at 30 weeks. When Ezra was born, he was diagnosed with Digeorge Syndrome, a genetic disorder caused when parts of the 22nd chromosome are missing. Shortly thereafter, Ezra’s heart had also started getting bigger, a separate complication unrelated to Digeorge Syndrome. Ezra would need surgery and was transferred in July to Children’s Mercy Hospital.
“It was such a stressful situation. We also had two older kids at home,” Quisha said. “We thought, what are we going to do when we get there? Where are we going to stay? How are we going to pay for food?” said Quisha.
Thankfully, some friends told Quisha and her husband about RMHC-KC. They got in touch with us, and we were able to find them a hotel room before moving them into the Ronald McDonald House.
The precautions due to COVID presented more challenges during their stay. “Our older kids had been so excited to meet their brother but weren’t able to come with us out of precaution,” Quisha said. “You have to be extra careful and safe. Sometimes it’s overwhelming. But you understand.”
Ezra had his heart surgery August 6 and all went well. While their family will go home soon, they’ll still have to make trips back and forth to Kansas City. Quisha says that even though she misses her two older kids and friends while they’re away, “RMHC is like home. It still feels like the comfort of home. They have everything you need. And just knowing things are taken care of—that’s one less thing you have to worry about. So you can just focus on being there for your child.”
Julie Cubillo’s daughter, Katlin, was born in November 2015. At her 21-week ultrasound, Kaitlin’s doctors diagnosed her with hypoplastic left heart syndrome, a congenital heart defect.
After consulting with their specialist in Wichita, Julie decided to travel to Children’s Mercy Hospital for Kaitlin’s birth. It was there that she first learned about RMHC-KC. “When we found out it was right next door to the hospital, we couldn’t have asked for anything else,” said Julie. “I actually moved into the Ronald McDonald House before I had her—she was so high-risk that they wanted me close to the hospital when it was time to deliver. My husband was able to be here with me, too.”
Kaitlin’s journey has had the family staying at RMHC-KC several times, including in 2016 and 2019, for Kaitlin’s open heart surgeries.
Then, in September, just two months ago, Kaitlin was at home when she started to get sick. The family again was sent to Children’s Mercy and after being admitted, Kaitlin tested positive for COVID.
She went into isolation, and after a difficult recovery, is now stable. “She was very, very sick,” said Julie. “With COVID, I hope that people recognize that this is hard for everyone, truly.”
Julie came to RMHC-KC during Kaitlin’s hospital stay. “I was able to do laundry, everything, all while being isolated. They were taking all the precautions,” said Julie. “COVID has been very hard. But the House does everything from a place of love.”
Kaitlin is now awaiting a heart transplant, and the family will continue to make trips to Kansas City for her ongoing treatment.
“Going back and forth, with all these experiences, I could just enter our info on the RMHC website and boom, we had our reservation,” said Julie. “I would explain our circumstances and it was never an issue. They had my back.”
At 31 weeks pregnant, Laura Osborne was diagnosed with preeclampsia and sent from Lawrence to Kansas City via ambulance. “It all happened so fast,” said Laura. “We didn’t have any bags packed!”
Laura delivered a healthy but premature baby boy, Quinn, at 36 weeks and was in-patient for a week—with Quinn in the NICU. With her own hospital room, she and her husband Brad had enough space to sleep. But once Laura was discharged, and they only had Quinn’s tiny NICU room, it was too cramped for both parents to get the rest they needed. That’s when they found out about RMHC-KC. They contacted us and we provided them with a hotel room.
With an RMHC-KC hotel room, they could take turns, each able to get a few solid hours of sleep. It also provided a place to go back for a few hours and decompress. “It was not the hospital, and it was private, and I could pump,” said Laura. “Every time we drove to the hotel, we were like, oh my gosh, what would we do without this hotel?”
And even though they weren’t physically in one of the KC Ronald McDonald Houses, they still felt our support. “We got constant contact from the House, just checking in, seeing if we needed to extend our stay,” said Brad. “We definitely felt like the Ronald McDonald House was on our side the whole time.”
Quinn is now six months old, and he’s doing great.
A Few Final Thoughts
Throughout this pandemic that has rocked all of our lives since March, one thing has remained constant: being together with our families is of the utmost importance during times of stress. I am always so proud of the work we do at Ronald McDonald House Charities of Kansas City, and this year more than ever. We have remained steadfast and have not stopped serving families despite all the challenges of 2020. As these three families have described (and thousands of others have experienced), even though things are different right now, keeping families close to their sick kids is as important as ever.