Desperation

P.S. (pre script) I want to apologize to anyone who got my May 3, 2018 post sent to them again via email earlier this week. My phone upgraded to Android Pie (9.0) and then blogger went crazy. Anyway, I think that explains it. Not particularly sure that was the cause, but I don't have the energy to find out.

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First, I would like to thank everyone who has helped us this summer. From the visitors to the packages in the mail, we have had so many, many wonderful memories and lots of smiles. Thank you so very much. In the darkness that has enveloped our life, your gestures and kindness have brought us light. We are eternally grateful. Even if I failed to send a personal thank you, please know your kindness and thoughtfulness has been appreciated on many levels.

Our family went on vacation to a place that provides free vacations for families of seriously ill children. It was a quiet week on the lake, swimming, boating, swinging, talking, laughing, and crying.

 

Dale said it best. We think we take vacation to escape, but really, vacation is the place we are our most real selves. At home, in the work-a-day world, we have our constructs, our routines. Those are great masks and tools to keep us afloat. But on vacation, we are out of the comfort zone and are only left with being us. 

That reality, that lack of routine, that time just to be, was happy, but also extremely hard and eye-opening. Izzy has slowed down a lot this summer. Until we were looking at her trying to enjoy a day at the park or the beach, it didn't hit how much had truly changed. With each activity, we were reminded of things we could no longer do as a family. So no matter how enjoyable the moment, it was always twinged with a bit of sadness.

We came home from vacation early. Izzy was exhausted and simply wanted her own hospital bed, in her own room, where she could relax. That is what she did and continues to do.

Upon return, we quickly jumped into back-to-school mode. I was forced to really take stock of where we are and what life looks like for Izzy. In truth, while she had fun this summer, she spent the majority of time in her bed. She had many visitors, but with each short visit, she was left spent, exhausted, and many times in pain.

As we prepare for a new school year, Izzy is beyond excited to be a 5th grader. She wants to learn. She wants to know. She wants to be a professional (anything) right now--writer, engineer, restaurateur, super star. She also doesn't want to grow up. Of course, all of that is mixed together because she knows in her very sick heart that growing up, means dying and living long enough to open a restaurant or perform on a professional stage, take a book tour, or be a mom is not likely within her grasp. She gets sad and angry and so do all of us.

Izzy's pain is mostly controlled with extended release morphine around the clock, but she has what we guess to be arrhythmias almost daily now. She feels weird, gets hot and sweaty, then after it goes, she gets sharp pain. Morphine helps, but the episodes take a lot out of Izzy. The more this happens, the more weird yuckiness she feels, the sadder and madder she gets. Me too.

I was driving into work this week, listening to the news as I always do. There was an story talking about a novel, new cancer treatment and the journalist mentioned the hundreds of research studies going on simultaneously across the globe like this one trying to eradicate cancer. They were talking to a teenager receiving the new therapy. Over the radio, you could hear the fear and hope mixed in the young man's voice. This was his last chance at living to adulthood; to beat his devil.

I sobbed right there in my car amid traffic--big fat tears and keening wails. Anger and sadness bursting out of me in every direction. In my head, I kept hearing the words "hundreds of studies going on currently regarding this type of therapy" repeating in contrast to "nobody is working on a study to help a child like my baby". Where is our hope????? Why is there nothing available to scare us to the edge of sanity while giving us a glimmer? Why can't there be ONE study!!!!!!!!!!!!!!

It's too hard I've been told. The intersection of the heart and lungs is complicated. Don't get me wrong, I want the cancer research to continue, but I also want people to care about heart defects--even the defects that are not easy to study or that take a moment to explain. I know the ramblings of a desperate mother--the outrage of one person--means nothing in the grand scheme of things. But I can't help think that if someone before me had been louder, done more, Izzy would have had better options and choices. Then again, I've been told that kids with heart defects live now, so we don't have to concentrate on saving their lives, even if nobody knows how to save Izzy's life.

I'm so angry. And scared. And angry again. I've searched the world so many times, looking for answers. As it is obvious no answers are coming, I want to break something to show my pain. It needs to be something huge and the explosion so massive it can be seen from space. But breaking things solves nothing and would probably put me in jail, so I'm trying to figure a way to channel my anger, my fear, my resolve. I am choosing to continue to fight for more research. I have been doing this for years. I feel like I've accomplished nothing. I know that is not true, but there is so much more that is needed. I need help. I work with others, but here, we need help. We need you to help me build something instead of destroying.

I have asked people to spread awareness of congenital heart defects in the past. I have asked for people to support us time and again. And so many times you do. But I need more. Izzy needs more. We are desperate. Not desperate for things, but desperate for time. It feels so fleeting as time is fleeting. Time only comes from research. Can you give us time, PLEASE?

I know that nobody can guaranty more time, but if you will work with us, maybe we can make a change. Please spread the word. I want the world to care about saving kids like Izzy. If we can fund research and find answers, options, real choices for kids like Izzy, we can take her pain and her suffering and make it a vehicle for positive change. Please join us! Help us!

We are walking in the 8th Annual SE Michigan Congenital Heart Walk on Saturday, September 22, 2018 at Boulan Park in Troy. Join or donate to Team Izzy at this link: Team Izzy.

Buy a shirt that tells the world you are part of Team Izzy and fighting CHD with each step.

Shirts are $20 with proceeds going to the heart walk. Sale ends Tuesday, August 21. You can have shirts shipped directly to you. Buy at this link: https://www.customink.com/fundraising/teamizzychw.

Help me and the Children's Heart Foundation board and volunteers. Do you love planning parties? We need help planning next spring's Sweet Hearts Ball in St. Clair Shores, Michigan. Do you know how to get corporate sponsors? We need help with that. I don't have the right connections. Do you have a knack for reaching out the community, spreading messages? We need help with that. Can you create graphics? Are you highly organized? Are you crafty? Do you make art? Do you follow directions well? There are so many ways you can help. We need so much help. Email me, please, at meloniestothers (at) gmail (dot) com.

Or simply share the message with others you know who may be able to help. Please.