Monday, May 13, 2013

My Heart

(serenity garden at Ryan House)

Jack and I spent this last weekend at Ryan House.  The last time we were there was November and it was time for a return visit.  Although I have the option of leaving Jack at Ryan House, I prefer to stay with him because he is so unpredictable and I wouldn't be able to relax if I was away from him for too long.  I like Ryan House because it's a change of scenery not only for Jack, but for me as well.  I find most weekends to be rather depressing because I feel "stuck" at home.  When I'm at Ryan House, I don't worry about all the things I could or should be doing around the house, nor do I feel guilty or like I need to hurry back when I do get away for a few hours.  It truly is respite for me, even though I stay there with Jack. 

One of my favorite volunteers at Ryan House is Grandma Bev.  She formed a special bond with Jack from the very beginning and really enjoys her time with him.  She spent Saturday afternoon entertaining Jack and after she left, I found this card she had written and left in his room:

My heart smiled.  What a remarkable woman Grandma Bev is to look beyond the barriers of silence and technology to see Jack for who he is.  All of the staff and volunteers at Ryan House are incredibly special people, but Grandma Bev - well, she has my heart after sharing such precious words about my Jack.

I went back through my pictures of Jack's first time staying at Ryan House, over three years ago, and found pictures that captured those very events that Grandma Bev was referring to in her note

Grandma Bev reading to Jack (March 2010)

dancing with her favorite dance partner (March 2010)

In addition to being a respite facility, Ryan House is also a hospice facility for children.  This weekend there was a child who passed away at Ryan House.  Being in the house and seeing the grieving family was tough.  But, it was also the kick in the pants that I needed to get me out of my funk.  It made me appreciate the fact that Jack was able to leave Ryan House at the end of the weekend and he and I were both able to enjoy our time there.  Ours was a weekend of joy, not profound sadness like the other family.  It was a reminder that I need to just take one day at a time, appreciate the day and not look too far into the future or worry about what is looming on the horizon.  I didn't book a weekend at Ryan House with the intention of being enlightened. However, the message was conveyed and I'm going to do my best to take heed. 

We'll be making a trip to Phoenix Children's this week for lab work. I made sure they included in the order that the IV team is to be called because I don't want a repeat of the last blood draw where the blood hemolized and skewed the results because Jack was such a difficult draw.  I'm just hoping we aren't there all day waiting for the IV team to show up.  Send positive thoughts our way on Wednesday morning, okay?



Susan said...

Oh my gosh that letter made me cry. What an amazing lady to write such special words for you and Jack. I'm glad for the serendipitous events of the weekend. It's always good to receive the message to enjoy what you have while you have it. I hope the blood draw goes well. XOXO.

Anonymous said...

I am having a hard time seeing the screen through my tears. Grandma Bev is a true angel on earth. I love that the Ryan House is there for you and for Jack! Take care!

Hope in NC