Joel

My family and I have stayed at Ryan House on multiple occasions. I am a single mother and my son, Joel, has Neurofibromatosis Type 1. He has multiple tumors on his spine and brain and wears an orthotic brace to prevent further damage to his spinal cord. His older brother, Carter, loves Joel and would be devastated if anything happened to him. Because of the severe compression on his spinal cord he is unable to stay in traditional day cares.  Ryan House is my only form of respite.

Our first stay at Ryan House coincided with my son’s release from the ICU at Phoenix Children’s Hospital. We spent 5 days in the ICU and I was nervous to go home as I don’t have family nearby for support. Ryan House stepped in and provided emotional and physical support for my family. I was able to sleep well knowing the nursing staff and doctor-on-call were readily available.

The home-like setting, along with the professional and skilled staff, provide a fun and safe environment for my son and I schedule a stay for Joel once a month on average. I am a full-time working mom who is raising my special needs son alone. We average 7 doctor/therapy appointments per week. He has an MRI every 3 months and I am in the midst of getting second and third opinions from experts all over the country. We have narrowly escaped chemotherapy and invasive surgeries on several occasions. This life is more stressful than you can imagine. All the love and joy in your heart can’t refill your physical body when you are exhausted and up all night praying and watching over your child. I pour over medical journals and paperwork from insurance companies and experts in the field nearly every night.

Before Ryan House came along I really struggled. I now depend on Ryan House for mine and my family’s well being.  Without a recharged and energized mom, the whole family suffers. I know that Joel will be active and entertained all weekend. The volunteers and staff love and interact with him throughout the visit and I can rest knowing he is safe and any emergency will be immediately attended to. 

My kids are my life and I am humble enough to know I cannot do this on my own.  I realize the fragile balance required to raise a special child. It is an honor and a huge requirement of the soul. My recharge comes monthly with the help of Ryan House.