Long Two Months

Another two months have passed. Time is just going so fast. I started writing this in mid-April. It seems like each day blends with the next and nothing really changes, but then I look back and realize we are definitely in a different space.

Izzy has spent most of the last two months in bed. The recovery time for her birthday was long and hard. Izzy ended up with an ear infection, but I can't even remember that now. It was in the post I had started so long ago. She does have another ear infection now as well.

In my last post, Izzy had celebrated her birthday. She went out to eat, Build-A-Bear, then came home to a party. These days, listening to a story on Audible tires her out so much, she needs to nap afterward. While Izzy dreams of adventures and going out to eat, we're lucky if she eats food we bring home.

Izzy's pain was getting bad again, but it seems to be controlled now by changing things up--adjusting medications and taking it slower. We take everything very slow these days. As you can tell from the picture, the dogs are okay with the slow pace of life.

It is all so unreal. Izzy is so very, very tired all of the time. Tired is not the correct word. I'm not even sure that exhausted, weary, or depleted capture Izzy's life now. She does have moments where we see our Dancing Queen, but not very often. Worst of all, she is depressed about what this exhaustion is causing her to leave behind or forgo. Izzy is missing her old life. Perhaps, it is better stated that Izzy is grieving the life she has lost and the life that cannot be. She mourns the loss of attending school and seeing friends daily. She longs for adventures. She finds the commercials for Universal Studios and The World of Harry Potter or Disney World especially cruel as she knows she cannot go there, but she wants to go . . . desperately. But she even dreams of simple things like picnics and swimming and she feels the pangs of jealousy and sadness when she cannot get out or play for very long.

Izzy makes us promise her that we will take her places when she gets older. She wants to see New York City on her 21st birthday, Las Vegas the next, and Paris after that, but she knows she is stuck in our house and that she is unlikely to see those birthdays. It is very sad for her. We try to help her enjoy what she has, but there is so little these days. It's not even likely that Izzy will be able to attend her elementary school graduation in a couple of weeks because she has to be there by 8:15 am and waking up that early is almost impossible, let alone leaving the house by then.

I've been asked if we will have a sign up to visit Izzy again this summer. I don't have the energy to go through that again. Besides, many people who signed up cancelled last minute or didn't bother to even tell me they weren't coming, leaving Izzy expecting people who didn't show. It was hard for her to face that rejection almost weekly and hard for Dale and I to explain over and over that people made plans, but didn't take them seriously enough to follow through.The frequent rejection from people cancelling on Izzy last minute or simply standing her up, adds to her despair. Visits from friends and family give Izzy something to look forward to--excitement in her monotonous life. And when those moments are pulled away from her, it hurts all the more.

If you'd actually like to spend time with Izzy, email or text me. Izzy is always home and desperate for connections to the outside world and we can generally accommodate people on short notice. We do ask that you actually follow through if you say you are going to come. It doesn't have to be elaborate. You need not spend money to visit.

Izzy loves to watch movies with people or read stories and we have tons and tons of both.

Izzy can play some games, but only those that don't take a lot of thought as thinking takes a lot out of her (we have her favorite games). Even if you play her favorite game, Izzy may not be able to complete it as exhaustion takes its toll.

Izzy loves crafts, but she really likes watching others make things for her (we have lots of craft supplies). Izzy's hands shake too much to make anything herself and she doesn't have the concentration or patience to usually see a craft through on her own, but she'll watch and guide and talk with you as it is completed.

Izzy really loves to talk and share her stories of magic. So, if you are ready for an open-minded conversation, she'll be overjoyed to talk with you. If you'd like to hold that conversation with a tea party, she be down for that too (we have tea and flowered tea cups).

You don't have to plan an entire day with Izzy. If you find yourself with an extra hour or two, shoot me a quick text that you want to stop by. I'll make sure Izzy is up for visitors and you will make her week.

Contact me at five eight six four one nine six nine zero zero or meloniestothers (at) gmail (dot) com.

I've also been asked about Izzy's Ice Cream Social. We are not doing that this year. It is too hard and Izzy couldn't go anyway. We are still doing Izzy's Ice Cream Challenge, where you eat ice cream for Izzy while raising funds for CHD research. I'll post more on that later.

Until next time, enjoy a pic of Izzy and Lady, mugging for the camera.