Wednesday, March 24, 2010

Ryan House

This Saturday we will be attending an open house for Ryan House.  I first heard about Ryan House about six years ago - although I can't remember how I heard about it.  I contacted Ryan House because of the similar missions the Ryan House and The Willow Tree Foundation shared  ----  Respite.  The Willow Tree Foundation provides respite opportunities for parents by financing respite activities.  Ryan House provides respite opportunities by providing a place for children to stay so that parents can have some respite.  When I first heard about Ryan House, it didn't occur to me that it might be a place for Jack, me and our family.

I talked with Ryan's dad (the founder, along with his wife, of Ryan House) about how the idea for the Ryan House came about.  His son, Ryan, has spinal muscular atrophy and they were living in England when Ryan was born.  Apparently (and my friend Julie can let me know for sure), respite facilities are quite common in England.  When they moved to Arizona, they brought their vision and commitment to establish the same type of facility they saw in England with them.

I believe Ryan House originally hoped to open sometime in 2006.  However, 2006 came and went, as did 2007.  Ryan House's ability to become a reality was one hundred precent dependent on contributions and donations and the process was a slow one.  In an effort to get the "show on the road", Ryan House partnered with Hospice of the Valley.  The mission of Ryan House was expanded to provide not only a place for respite but also a place for end of life care.  In 2009 construction of the Ryan House finally commenced and the Ryan House will officially open its doors for respite on Monday, March 29, 2010.

2009 was also the year it occurred to me that Ryan House might be a place that I could take advantage of.  Six years after I first learned of Ryan House .... six exhausting years of caring for a medically fragile child ... I finally conceded that I might actually, maybe, possibly could leave Jack in a "facility" and in the care of strangers for several days.  But, the guilt ... oh, the guilt (for just thinking it, let alone actually doing it.)

Ironically, my brother-in-law was recently hired by Hospice as the Facilities Director and he's been spending a lot of time at Ryan House the last month as it was getting ready to open.  He tells me Ryan House is "amazing".  There is no question that it's a state of the art, class act all the way around. I'm excited and scared at the same time.  No, I'm not ready to drop Jack off and head to the Bahamas for a week.  But, I am willing to go to the open house on Saturday and then ease into the possibility of leaving Jack there for a weekend here and there.  I was told that they want the parents to stay the first time the child stays at Ryan House so that they are available if needed.  Ryan House has sleeping rooms for  those parents who want some rest, but who don't want to leave their child.  They can sleep knowing that their child is down the hall if they want to check on them.

I feel very fortunate to have a place like Ryan House here in Arizona (especially considering how behind the times we are when in comes to pediatric healthcare).  It's a unique opportunity and I'm looking forward to giving it a try.  

Ryan House did a story on Jack in their most recent newsletter.  Most of you all know Jack's "story", but if you want to check it out, here is a link to the Newsletter:


All qualifying families receive 28 days per year, free of charge, to spend at the Ryan House.


Anonymous said...

A very cool idea and concept. It would be great to get something like that going in the US. Respite is so necessary but so often associated with guilt. I hope the open house is wonderful and that you feel comfortable letting Jack stay sometime.

I hope Jack is on the mend from his latest illness.


worthy said...

Yes, Ann, we have lots of respite care homes in the uk. some are amazing (those tend to be Hospices though), some are ok and some are not too good. Sam has a weekend per month in a local one. It has a lovely sensory garden and swings with tumbleform seats for the children in wheelchairs, they have a soft play room, tv, dvd, wii and computer for the children, plus loads of toys. I still hate leaving Sam there and he doesn't help by turning on the waterworks as I leave (though they tell me he stops as soon as I've left). He always signs 'good' when he goes there so I think he has fun. Hope you can make use of Ryan House for Jack in the future, it's a great idea for giving you the chance to spend quality time with the rest of the family. Hope Jack is much better soon. xxx

Susan said...

That is SO INCREDIBLY AWESOME! Bless the people who started this. I hope it is a huge success. You'd better do it Ann!!! You can't form the Willow Tree, preach the value of respite and not try it yourself. You of all people deserve it!!!

Tatia Strang said...

Sounds like a wonderful place to provide a bit of respite to you, Jack and your family!

Gretch said...

Oh Ann that sounds incredible!!!! I have never even hear of such a thing!!! I hope that one day you do get to take advantage of it as you certainly deserve a break!!! I hope you can take pics when you go to the open house!! How awesome that you and Mr.Jack are on the wall!!!!!!!!!!!!!!

Alicia said...

Ryan House sounds amazing! I hope you are able to leave Jack there soon.

Have a great weekend!

John and Jenna Gensic said...

I understand your initial mixed feelings about respite. When Mikan was in the hospital, we were informed of a respite home opening up near our house. I felt the same way-How could I just leave his complicated care to a complete stranger? Although we haven't needed to use it due to our home nursing care, I've grown to understand its importance. I hope you can find a special fit for Jack there every once in awhile.