Fast forward to this past February. Jesse and I attended a workshop put on by a local organization specifically for Catholic couples with special needs children. After the workshop, couples were invited to get up and talk about their experiences. The first couple to introduce themselves had two typical children and an 11 year old daughter with a debilitating genetic disorder. Immediately it hit me! It was the couple I had seen on the news two years prior!
The couple introduced themselves as Board Members for Ryan House.
The opening of Ryan House in March 2010 marks a new chapter in a story that began years ago.
Planning began in 2003 as a community of volunteers rallied around the concept and the cause. Ryan House was incorporated as an Arizona 501(c)(3) non-profit in August 2004, with its formative Board of Directors of community leaders. In February 2006, the first Executive Director was hired and a Professional Services Committee was established to provide input regarding developing operational aspects of Ryan House. In 2007, a unique partnership was formed with Hospice of the Valley to help make this pioneering concept a reality.
Ryan House provides a welcoming, comfortable environment where some of Arizona’s most special children can truly be themselves among other children like them. Parents get a much needed short break, while the kids receive care from an experienced professional nursing staff that lovingly provides care in place of the care received at home. It all adds up to a well-deserved and essential opportunity to focus on being families and living life to its fullest.After the workshop, Jesse and I spoke to them one on one. Though Gwen is only three, the mother told me to think of it like camp. "You would send your typical children off to a supervised camp, so why not your special child? She needs time away from you, just like you need time away to re-group". Two months later, we had an appointment to tour the facility and to see if Gwen qualified. Two weeks ago we had our first two day sleep over!
We checked in on Friday (their busiest day) after Jesse got off work. We got Gwen settled into her fairytale princess room and Jesse and I stayed in one of the parent/family suites (set up just like a hotel room) down the hall.
Because we were in a new environment with new people, new smells, new sounds, etc., Gwen was having a difficult time getting into her nighttime routine. At about 11:30pm, after two hours of Gwen screaming (mind you the only child screaming) and nothing working to soothe her, Jesse was ready to pack up and leave. Luckily the night nurse assistant reassured us that this is very common for most children's first stay and first night. He told us to return to our suite and get some rest. I was utterly embarrassed. We couldn't soothe our own child, how was this guy going to do it? Sure enough, an hour later, it worked. Even though I knew Gwen was being well cared for, on a video monitor, and getting checked every 15 minutes, I still didn't get much sleep!
Saturday we spent the day trying out all the Ryan House had to offer.
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| Indoor Pool |
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| Pet Therapy with Sammy....yes, they are both asleep! |
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| Sensory Room |
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| Music Room with a Player Piano |
Time flew by and we didn't even make it to the Art Room or outside on the wheelchair accessible playground! Confident with Gwen's routine, the staff reassured us Gwen was in good hands and to go to dinner.....baby steps! We were gone for about two hours and when we returned Gwen was ready for bed watching (well listening to) Sesame Street with all of her new friends in the Family Living Room.
Like the previous night, Gwen was not willing to go to bed peacefully. She put up another fight, but this time we let the staff handle it (well, that's what they would do if we weren't there!). Once asleep she slept like a log and we had to wake her up to leave Sunday morning!
Our reason in trying out Ryan House is to give us an option for Brosis' arrival. Rather then toss Gwen around to different family members and friends for a week, Ryan House gives Jesse and I peace of mind knowing that Gwen is in a safe and caring environment.
