Time Off

John and I just got back from Kentucky after spending two lovely days with my best friend for her wedding. That is a poignant, sweet, wonderful story in itself (and very heart warming), but not what this post is about. This post is about time off.

Anyone who lives with and/or is raising a person with a severe disability knows the rarity and the value of time away. We are extremely blessed to have a caregiver for Ian who is quite comfortable taking care of him for periods of time in  her own home so that John and I can have a break. It has been a godsend in every sense of that word. When my friend told me she was getting married in a month and wanted me to be the matron of honor, it was not just a simple task of asking for time off of work. It also involved making sure Ian's caregiver was free those days, making the arrangements for his stay with her, and checking the budget to make sure we had the money needed to pay for Ian's care. Medicaid pays for some, but not all of the hours needed.  The payoff is magnificent once we have everything arranged. We are extremely blessed to have a caregiver in whom we have complete faith--so there are no worries at all about the quality of care he will receive while we are gone. The longest we have ever been away from Ian at one time in his 18 years is 6 nights--we went to the Smokey Mountains last October--and I cannot even begin to tell you how rejuvenating this time was for us. Basically, all John and I did was sit, eat, take short walks to look at the beautiful scenery (because we felt guilty sitting so much), sit some more, eat some more, sleep and...eat. Oh, and we turned into prunes lounging for long periods in the hot tub. That's all we really want to do when we get a chance to get away. That, and get to know each other again as the very good friends we are. We talk and talk and talk. I forgot to add we read and read and read also. Throw in a few DVDs and you have our very exciting vacation. But we don't want excitement--we have plenty of that at home. Our stated goal is to do NOTHING.

Anyway--my friend in Kentucky knows all about our trials and tribulations, and after the rehersal we all caravaned to a lovely home on a lake to spend the night (there were about 10 of us from out of town.) After we all trouped in exclaiming at the beauty of the home, she pointed to the enormous master suite saying "John and Katie never get any time alone, and I want them to have THIS room!" It was huge. Everyone else had to make do with small (but very nice) bedrooms while John and I luxuriated in this palatial room complete with a four-poster king-sized bed that was so tall I nearly had to pole vault to get into it. Attached was an equally palatial bathroom with gold accented faucets and a dual head shower. Wow! There are no words to describe the feeling of laying your head on your pillow at night knowing you will probably sleep through the whole night, and most definitely will not have a pterodactyl-imitating, hyperactive night owl leaping into your bed in the middle of the night. Bliss. When I did wake up occasionally, I noticed I had a moment of hyper-awareness before thinking "Oh yeah---no Ian--zzzzzz...."

The next day I could give my full attention to the bride and enjoy every moment of the festivities knowing that we would have yet another full night of uninterrupted sleep after traveling home, and time alone together the following day. I had the time of my life---not only was I thrilled for my friend, I was able to focus on the moment and all the people present without worrying about what Ian was possibly getting into. I was also blessed by having NO headaches or pain! Woot! I was very very thankful indeed.

When Ian did come home today, it was great to see him. He started right in with his yodelling and pterodactyl imitations, bouncing all over the house, but with two days of respite behind us, I just grinned and gave him a big hug. He is always touchingly happy to see us. Sometimes he even gets weepy. You see,we are not really sure if Ian comprehends that we will return when we leave-- although we do try and explain this concept to him in various ways--and this breaks our hearts. But we still need, and I mean NEED the time away, and we are so grateful to have a wonderful caregiver who loves Ian like her own child (many, many, many thanks Kandace!)

Maybe one of these days I'll tell you the story behind my friend's wedding. It really is incredibly cool. Suffice it to say, she deserves all the happiness that has come her way, and I wish her a very blessed, loving and long union with her new husband. Mozeltov!