Transitions Are Hard

Summer has come to an end. School has started. It has all been so very hard.

Summer was difficult because Izzy was tired and emotional because she can't do what she used to do and she can't do what she wants to do. And the more emotional Izzy became, the more tired she got, the more emotional she became, and so on ad nauseum.

We had wonderful moments this summer. We shared lots of smiles and hugs. But behind every happy moment, was a sadness at the loss and all of the losses to come. While we do try and concentrate on what we have and we are truly grateful for our time together, nothing can take away the pain of plans that simply have no path to fruition.

I've lost track of the times I've had to explain that Izzy is worn out. A nap doesn't help. She is simply always tired and you can't quantify it. It is not something those of us who have never been in heart failure can understand. I don't understand, but I watch her.

Izzy tries so hard to fit in and be "normal". And then she hits a wall and the pain or exhaustion take over. Reading is taxing. (She had to nap today after listening to a book an audible for a couple of hours wiped her out and made her feel miserable. Then again, it may have just been an arrhythmia that wiped her out for hours today.) Watching new movies is taxing (unless they are crazy predictable like Hallmark movies). Izzy requires easy--an easy that goes beyond typical easy--for that is all she can handle physically. Yet, she wants so much more intellectually. She is so angry and scared and sad that she cannot do more physically.

With school starting and Izzy assigned to a new building that she will never know, the loss is being felt all the more acutely. This last week has been one of the hardest I can remember. (That is is saying a lot if I do say so myself.) The emotions. The utter sadness of being left behind while her friends go to middle school and she gets tired from her teacher reading to her and asking questions for an hour. It is all too much.

Izzy was so very excited to get her first official ID card!

First day of school; "Izzy's Class Room"

First day of 8th and 6th grade!

 

Izzy is lost and doesn't know where she belongs any longer or if she belongs anywhere. She is getting so bored with our house. Throw in Phin and Dale traveling to Chicago last weekend for Phin's birthday--a trip Izzy couldn't make even though she wants to travel more than anything--and . . . and I can't put into words the morass of emotions that has been our life. Suffice it say, transitions are hard, especially when there are not a lot of things to look forward to any longer.

Phin enjoyed his trip to Chicago.

 

While Phin traveled, Izzy did get to listen to the new Taylor Swift album!

 

For the more mundane elements of life, Izzy's pain has been well controlled for the most part. She has been eating regularly. Not eating much, but regularly. She had been regularly eating to the point that we thought she was doing well on that front. Then she saw her GI doc and she was down almost 5 pounds--about 10% of her body weight! Izzy now weighs the same as she did in January 2018. Talk about a gut punch. Izzy did gain some of the weight back, but we can see the loss. She is skin and bones (finding fat on her body to give immunoglobulin infusions is a challenge). Izzy gets sad that she can't eat more. She doesn't finish her ice cream any more either. She only eats a couple bites of anything, but she still loves food.

Izzy's cardiologist visited a couple of weeks ago. She heard crackling in Izzy's lungs (fluid). She asked us to get Izzy checked out by the pulmonologist to be sure it wasn't something other than heart failure. After the third set of chest x-rays for Izzy for the year looked exactly the same as the prior two, the pulmonologist told us the fluid is there and has been because of heart failure. We knew this.

Signing "excited" while waiting to get her x-rays. She was excited to get taquitos at Gran Castor after the x-rays.

Waiting in the pulmonologist's office

Izzy's legs are showing the fluid back up now. They have a constant purple twinge. Her belly never seems to get small these days--always full of fluid. Izzy has the persistent heart failure cough. So, we continue to concentrate on lessening Izzy's symptoms, making life as comfortable as possible, and bringing light to this house, where she spends her days.

If you'd like to support Izzy, please join Team Izzy at the Metro Detroit Congenital Heart Walk on Saturday, September 28, 2019, starting at 9:00 am at Boulan Park in Troy. Register to join our team or donate at this link: https://www.walkforchdresearch.org/detroit/TeamIzzy.

If you can't make the Walk, please consider buying a Team Izzy t-shirt and show your support wherever you travel. And if you travel, send Izzy a picture. She'd love to travel vicariously through others. Shirts can be bought at the following link in short and long sleeved, children's through plus sizes, and women's cut: https://www.customink.com/fundraising/team-izzy-2019. Shirt sales close September 4, 2019.