Sunday, June 26, 2011

Cloey Adventures week 5

We had a great opportunity through Hopekids to attend the Ringling bros Barnum and Bailey circus! in a box suite no less! The Scottsdale Fire Department really stepped up and covered Ty's shift so we could go as a family and Cloey was so happy to have her Daddy there. We all had a lot of fun. The best part is we got to share the suite with one of Cloey's best friends, these two seem to have a special bond and they had a lot of fun together.

Also this week I came in contact with two families facing trachs for their kiddos. It struck a bruised spot on my heart. These kinds of decisions are so hard to make and only the select few who have had to make life or death decisions for their child can possibly understand the weight of it all. In both cases, all the uncertainty and worry and pain of every decision we have made for Cloey in the last 10 years flooded over me. I know exactly how both these mommy's feel. The pain of watching them suffer mixed with the relief when the intervention works still mixed with the grief over the restrictions it causes. The constant quantity versus quality. I am in no way standing on a pedestal or saying that this kind of medical technology is not worth it, on the contrary I am very grateful for the technology we have today that has allowed Cloey to live years beyond her expectancy, I am just trying to convey the complexity this rare category of parenting goes through on a daily basis. To quote Annie "It's hard knock life for us"

The rest of the week has been filled with packing. When I came across Cloey's baby stuff I started to cry & had to find Ty for a hug, but after the initial tug at my heartstrings, We all really enjoyed talking about when Cloey was a baby. looking at her first pair of glasses, blessing dress, preschool artwork, and a video that was made for a fundraiser when she was 5. All of those sweet memories reminded me that while us "special" parents may have a hard knock life and bruised hearts, we also know a rare breed of Love and Joy That I believe can be found no where else but with these precious souls.

Sunday, June 19, 2011

Saturday, June 18, 2011

Cloey's Adventures Week 2, 3 & 4

  • Ok, so I am lame on this updating thing, but I do have a good excuse. Check facebook or our family blog for details but because of a water leak we have been displaced for the last 2 weeks and now have to move. The good news is we have been busy doing fun things with Cloey as well! Here is the recap~

  • One of the first things we did was a movie in the park. Ty was at work so it was just me and the kids. It was picnic style so we had no wheelchair for Cloey, it was at night & for once we didn't have to rush back to meet a nurse, and Cloey ran around and played with all the kids at the park.

  • Then some of our dearest family friends and one of Cloey's best friends came down from Colorado for a visit! we had a fun filled week, taking our friends to church, going to the zoo, Cerretas Chocolate factory, the splash pad, the movies, and sleep over fun!

  • For her Birthday Cloey got a kit that you can order caterpillars and watch them change to butterflies. I finally ordered them and all the kids had fun watching the metamorphosis, especially cloey who has 9 pet butterflies now.

  • Cloey and I had the opportunity through HopeKids to see Valley Youth Theater production of Annie. Cloey just loves the Theater, going to shows is probably one of her favorite things to do and Annie was one of my faves growing up, so we had A LOT of fun. I really enjoyed my special time with her and I think she did too :)

  • We also had some fun staying at a hotel, and then at Ryan House for a special family visit. It was like a mini vacation and I have to say the logistics were much easier without the vent and such. Cloey has not been in a pool for 5 years, while it is still risky with her trach, we go ahead and let her in. She LOVED it. S0 fun to watch her kick her legs when it was such a new feeling for her. She has shown such joy in her new found freedoms on Hospice and has become, umm shall we say, independant. We love the growth we see in her and it confirms to us that this step is what Cloey needs right now to reach her greatest potential.

  • After leaving Ryan House we went to Lenny's Burgers because everybody said it was the place to go downtown, and it was pretty dang good, but the highlight was Cloey eating an ice cream cone! she has only reluctantly tasted ice cream before, mostly in therapy, but this time she got it! It was like a light bulb went on after 10 years and she was like, "so this is what all the noise is about" it was super cute!

  • We had a small pneumonia scare with Cloey at the hotel and I will admit my heart was caught in my throat. But Hospice worked like it was supposed to and we took care of it quickly and painlessly with no pokeys or hospital stays.

  • Cloey, with Cal as her buddy, has joined an adapted bowling league in Tempe. It will be something fun and air conditioned to do this summer, so far they had fun. Cloey says she got a home run and 100 points! hehe

  • If you noticed the new layout, it is in honor of Cloey's favorite animal and she helped me pick it out! also, Cloey has a facebook page now, look her up if you want to be her "friend"

  • All in all Cloey has been her strong, fun self and we are loving it!