Update

Izzy at the Congenital Heart Walk on September 28, 2019

It's now been about eleven weeks since I updated here. And I started writing this post over six weeks ago. These are the pictures that were between the last update and six weeks ago.

There were a lot more pictures taken in that time-frame than in the last six weeks.

In the original start to this post, I wrote that it had only been five weeks since I last updated, but it seems like so much has changed. That feeling has remained constant. Every time I look back even just a week, it seems like Izzy has declined a little bit more. It is so hard to describe though. I'm not sure if it really hard to describe or just that everything melts together and life is so much harder such that putting words together takes a lot out of me.

 Six weeks ago, I talked about Izzy having more days where she cannot get out of bed. Her pain was consuming on many days. Thankfully, we worked closely with the hospice team and were able to  get the pain under control. It was a challenge and she still has breakthrough pain, but not like it was six weeks ago.
 

Izzy has been suffering from arm and leg pains. She was waking screaming in the night in pain almost every night. She couldn't put weight on her leg. And her emotions were tender because of the energy required to deal with pain and living in pain. The pains are coming less now and we've learned a heating pad can ease the pain fairly quickly. That and making sure Izzy wears her oxygen. She rips it off in her sleep and with less oxygen going to the extremities, she has pain.

Now, Izzy spends most days in bed. Climbing up and down the stairs is very difficult, even though there are only 6. Thankfully, she's small, so we can carry her up and down. She is sleeping more. She can't stay awake as late as she used to. She's typically lights out around 7:00 pm, instead of going up at 7:00 pm. More often than not, we have to read short, light stories at bedtime, rather than a chapter or two of the novel we're reading as a family, because she can't concentrate. Thankfully, we kept all our favorite Dr. Suess, Mo Willems, and similar-aged books in the house.
  

Flipping through the Amazon catalog for wish list ideas!

 

Attendant with the decline, Izzy is more sad. She knows time is limited and she knows she can't do what she wants to do. She is desperate to travel. She has so many places that she wants to see, but the idea of riding in the car to her Ma's house to see new furniture had her in tears because she knew her body couldn't handle it. Places farther away are completely out of the question. She knows she'll never see New York City, Broadway, Paris, the World of Harry Potter, Las Vegas, Disney World (again), but she wants to.

Izzy wants to have a wedding. She dreams of being a bride (thanks, Hallmark Channel) and wearing the big dress with all of the fancy food and dancing. But she knows she's not going to live long enough to even reach the legal marriage age, let alone find someone to marry. That makes her grieve the life she'll never get the opportunity to have.She did dress as a bride for Halloween, so at least she got the oohs and ahhs of being a bride.

Ma and Izzy (Ma dressed as Dumbledore for the Halloween party.)

Izzy weeps a lot. She is overcome with emotions whenever she gets run down or tired. Since she is tired so much more often, she is emotional all the more. She lashes out a lot. Then she feels bad for lashing out and she cries. We feel like we have to walk on tightropes often or maybe a better analogy is walking through a mine field. 

Each day we help Izzy manage these emotions while battling her pain and exhaustion and the nightmares that come with it all. I know I've said it here dozens and dozens of times, but we are all exhausted, but moreso than before. Who knew that was even possible! We are not okay. I know if you ask us how we're doing, we'll say "okay", but we're not. There is nothing okay about any of this.

Izzy is missing the world and being part of it. She misses talking to others. She doesn't have a lot of energy to engage in conversation. But, we've tried to keep her connected and build beautiful memories.

Family game night!

Sleeping Beauty ready for the new Maleficent movie!

New unicorn jammies!

Izzy bought herself this doll because it looks just like her!

We also started monthly mini-celebrations we call "Operation Make Memories" and those help give Izzy a connection, but she is missing out. She cries because even at these events, she can't do everything and trying to be part of the group is so exhausting. We had Izzy's Hallmark Christmas Movie Marathon last weekend. Izzy stayed on the couch the entire time, but it caused her pain, more exhaustion than normal, and a miserable night sleep. She loved every minute though and having people enjoying movies with her.

 
Next month, we're going to have Carols and Cookies. The hope is to have carolers come to our house around 2:00 in the afternoon either Saturday, December 14 or 21. Izzy will hear the caroling and answer the door to a group signing her favorite holiday songs, just like they always do in the movies. We'll invite everyone in, sing more carols together and eat cookies. It's one Izzy's dreams.

It's those moments we live for now. Bringing the smiles to Izzy's face and to Phin's. Through all of this, Phin is still here and still trying to figure out how to soak up Izzy without going crazy from the sheer quantity of Hallmark movies she watches (they don't require a lot of energy to understand, yet are varied because one takes place at a Reindeer Ranch and another a Christmas Tree Farm). Phin does so well with Izzy. He is the best big brother and he deals with so much. I'd tell you to give him hug if you see him about, but I'm pretty sure that end badly for everyone involved. Instead, if you see Phin, say: "Hi. See any good Star Wars shows recently?"

Mel