All About Kids was Incredibly Special for My Daughter
Posted by Cathy McCann
I was honored to speak at JourneyCare’s Decades Dance on Saturday, March 10. In addition to the fun ’60s theme, music and auctions, the event raised money for JourneyCare’s All About Kids pediatric program – a program close to my heart.
Our daughter, Sadie Elizabeth, was born on April 29, 2010, after an uneventful pregnancy. I say “uneventful,” because I experienced the typical pregnancy symptoms – tiredness, discomfort, slight nausea, cravings, etc. But nothing could have prepared me for her diagnosis.
At six weeks of age, Sadie was diagnosed with Aicardi Syndrome, a rare genetic disorder affecting only girls. There are only about 1,000 diagnosed cases of Aicardi Syndrome in the United States and, like many other rare diseases, it comes with pretty terrible prognosis. Those affected typically experience multiple seizures daily, severe developmental delays and low muscle tone. Most girls with Aicardi Syndrome are non-verbal and unable to walk.
I was shattered. It was as if someone had taken all my dreams and expectations for what my child could be and threw them out the window. I remember telling my family that I wasn’t strong enough for this life.
But, as shattered as I was, I also knew that I needed to find the strength to give Sadie the best life possible. Her diagnosis had taken us down a different path, and we were determined to do everything in our power to make sure she was given every opportunity to thrive on that path.
It was our pediatrician who provided a referral to JourneyCare. I wish I could convey to you the full extent to which the All About Kids program helped – but you’d be reading this blog post for the next two days.
Our nurses, Michelle and Heidi, were amazing. Their periodic home visits gave me peace of mind knowing that Sadie’s health was being monitored. Not only would they check her vital signs, pulse, oxygen, and listen to her lungs – they’d also talk to us about her care and answer any questions we had about upcoming procedures, issues with doctors, etc. The steroids Sadie was prescribed for her seizures suppressed her immune system but, because of Michelle and Heidi’s visits, Sadie was kept out of hospitals and pediatric office waiting rooms. This ensured protection for her fragile immune system.
In addition to the basic nursing duties provided by Michelle and Heidi, they often went above and beyond their core job descriptions. For example, my husband was out of town once when Sadie was struggling to breathe. I immediately called Heidi, who dropped everything to accompany me downtown, monitoring Sadie’s oxygen levels in the back seat while I drove her to Lurie Children’s Hospital’s emergency room.
Michelle attended Sadie’s first Individual Education Plan (IEP) meeting with her school district. She was one of about 30 people in the room – perhaps the largest IEP meeting ever! We had almost no idea where to start or how to handle this process, but Michelle’s participation and input were extremely helpful to ensure that Sadie’s IEP was structured the right way. Michelle also attended an appeal meeting with a representative from the Illinois Department of Rehabilitative Services as they evaluated Sadie for overnight care. And this was just days after a surgery of her own! And, if that wasn’t enough, Heidi agreed to keep our dog, Baxter, while Sadie was in the hospital for one of her many Pediatric Intensive Care Unit visits.
And finally, when we knew it was time to let Sadie go, Michelle was one of the first people we called. She was with us at the hospital during her last minutes and she helped guide us through tough decisions in the days following.
Both Michelle and Heidi are our friends to this day – and will be throughout our lives.
I would be remiss if I didn’t mention the rest of the JourneyCare team, including Beth and Dana, Sadie’s music and massage therapists, and Sue, our respite volunteer turned Certified Nursing Assistant. The entire team was so incredibly amazing. They amplified the strength I didn’t think I had and helped us navigate a very difficult path. I don’t know what we would have done without them!
I hope to see you at the event on March 10, as we help other families navigate this path and receive the support and strength provided by this incredibly special program.
Help support compassionate, exceptional care for young hospice patients and their families! Make a gift at journeycare.org/donate.