16 Nov My Kids Make Me Smile

The first thing I do when I wake up in the morning is check if both my kids are breathing. Wyatt is 2-years old and Freya is 7-months. Once I hear their little baby snores, I can start my day.

Both of my children are facing life threatening aliments. I feel like my brain is going to explode.

This past February, Freya was born with bladder exstrophy. (Bladder exstrophy is an abnormality of formation of the bladder and the bony pelvis. The bladder does not form into its normal round shape but instead is flattened and exposed on the abdominal wall. The pelvic bones are also widely separated.) She is now at Oishei Children’s Hospital (OCH) going through yet another series of reconstruction surgeries to correct her condition. There have been complications requiring orthopedic surgeons, general surgeons and metal bars to secure her pelvic bones.

Four months later, in June, Wyatt woke up with a limp. Nothing too unusual for a rambunctious 2-year-old, but by the next week he was unable to walk. He had no reflexes and no feeling. I was a crying, hysterical mess as I drove 45 minutes to our local doctor’s office. Later that night, Wyatt was transferred and admitted to OCH for tests and an assessment. With my medical knowledge, when I saw the test results, I knew without being told that Wyatt had cancer. He was already being prepped for surgery when I found out it was a rare form and Stage 4.

Surgeons removed some tumors including the tumor resting on Wyatt’s spine, but they couldn’t remove them all. He is currently in his third round of chemo. We are hoping for a lasting remission, because if he ever comes out of remission, he is only expected to live for a short time.

We live in the small town of Rixford, Pennsylvania which is about a 2 ½ hour drive from Buffalo. The Ronald McDonald House has been there for us. Our first stay was when Freya was born. Our second stay was when Freya was hospitalized for surgeries and our third stay was when Freya was hospitalized for more surgeries and Wyatt was receiving chemo for his cancer. To date, my husband and I have stayed over 40 nights at the Ronald McDonald House. It is overwhelming.

Having the House to go back to each night provides a sanctuary in my chaotic and stressful life. The House keeps me close to our kids, so I don’t have to worry about not being there. It’s hard to describe the relief this brings me.

The House is so homey and restful. The beautiful stairway reminds me of the grandeur of the old movies I love. It’s my peaceful refuge away from the beeping of hospital monitors. The staff and volunteers are so kind, always offering a helping hand. They provide the transportation back and forth to the hospital so I can see my kids and come back to the house to rest.

I always knew that life was short, but I never realized just how short it can be. We always try to make sure we have fun family time every week. When we are home in Rixford, we have movie nights where we create a home theatre. When we are at the Ronald McDonald House, the playroom gives us plenty of fun time. It’s no surprise that the train set is Wyatt’s favorite!

Wyatt and Freya are very close. Freya lights up with a big smile when she sees him. Wyatt takes care of her, brings her blankets and holds her hand. A life where we won’t be together is unimaginable.

I see things very differently now. Life is about experiencing happiness. You have to choose to overcome the sad things and look for the brighter side.

I am relieved to know there are good people out there to help. The Ronald McDonald House keeps my family together. It gives me a place that feels like a home away from home. Without the Ronald McDonald House, I would probably be sleeping in my car.

– Felecea Heffner