HLHS

The Bipolar Nature of Being a Heart Mom

I don’t go on Facebook nearly as often as I used to. I am realizing that many of my ‘friends’, tend to be fair-weather ones at best. In order to keep myself from getting too wrapped up emotionally in what I consider daily rejection, I tend not to log on until I have time later in the evening. I reach out to some, and don’t get a response. Sometimes I even go as far as arguing with myself internally on whether I should even bother to comment on something, because I KNOW the other person will do what they have always done, and not do a single thing.

Last night was no different than the past few months, where I log on later and begin my nightly scroll. I stopped on a post by an adult with HLHS who had the phrase “Fontan will ultimately fail” in her post. Granted it was a post about being hopeful about new treatments around the corner, it shook me to the core to see those words. I began reading the comments and saw others comment that their Fontan was failing too. Some were young, some were in their 20’s. My own heart sank. It hit me. We aren’t done yet. We will never be done and after this, what will we do? What can be done besides wait for a new heart?

Right now, Izzie runs around and plays like a normal almost 4 year old. She will be 2 years Post-Fontan this September. She is doing exceptionally well for a child that is missing half of her heart. I know how fortunate we are and that we have time to enjoy life. But Chris and I both know that there was never an “If she needs a transplant”, there was always “She will need a transplant eventually.” To us, it was a given. We know that her right ventricle can’t do all the work indefinitely. I had never had it confirmed so bluntly before. I hadn’t seen actual evidence with others who had their Fontan 20+ years earlier.

I sat across from Melissa and looked at her. Tears filled my eyes as I expressed my sadness that this surgery will eventually stop working. She just held my hands and listened. The tears came as we sat waiting for our dinner to arrive. Wiping the tear away, I decide to read what the young woman had posted. It was an article about a new technology that could help assist the heart by mimicking the pressures necessary to keep blood flowing. I read the article and explained to her that this new technology may be an option for us. Hopeful once again, I was able to get some balance.

Tonight, someone else shared an article about a new clinical trial the Mayo Clinic is doing involving stem cells. This treatment would encourage the heart muscle to grow and become stronger. Maybe even get fibers to regenerate or heal. It would involve getting bone marrow and harvesting the cells from that, and then injecting them into the coronary arteries that feed the heart muscles. They are asking for post-fontan children and adults to participate. I sent Chris a text asking him what he thinks.

“I’m all for it.”

Once again, I hold my breath and think, this could really help her. It could also hurt like hell since it requires bone marrow extraction. Right now her function isn’t having issues. Do we wait until it becomes an issue? Or should we be proactive and go for it? We can send the email expressing our interest and take it from there. Worst thing that could happen is she isn’t able to participate. And then what?

I know you have heard me lament about people wanting to help fight cancer while there is nothing that can be done about my daughter’s condition. I feel as though she doesn’t carry the same weight as a child with cancer in people’s minds. After all, she has had her surgery so she should be fine now, right? Nothing could be further from the truth as two days in a row have gone by with her vomiting at one point. I don’t have other options because she isn’t showing signs of heart failure. She can’t have another procedure because there is none.  The surgery that some have been able to have to create a 4 chambered heart is off the table for her because she is missing key components for that to work.

So what do I do? I have to rely on research that is poorly funded and not understood by many. I have to explain over and over again that surgery is not a cure and yes, she is doing great now but things can change in the blink of an eye. Up and down, up and down. Emotions and fear cause me to sound like a total jerk to people who don’t understand that I am afraid too, that like other parents with sick children, I am scared of what will happen to her if nothing new comes onto the horizon. I even get angry. Sometimes I  get into the “When will her disease be important enough for its own commercial?” moments.

I am full of hope, terror, anger and love for this incredible little girl who is just pure joy. Our next big thing is seeing whether or not she has developed a peanut allergy. I wish all we had to worry about was keeping her away from peanuts. Instead, it is one more thing we may have to keep in the forefront, along with making sure she stays hydrated, that she eats, and gets enough rest. Up and down.

 

 

HLHS

Why I don’t consider my daughter a rockstar

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I am probably one of the rare breeds of heart moms that doesn’t call her daughter a ‘rock star’. I don’t remember saying that she ‘rocked’ her last open heart surgery. I may have, but if I did I regret saying it. Did she do well during the surgery? Yes, she did. It went very well. She allowed the doctors to put her under, to open her chest, and stop her heart. As far as what her part was, that was all set.

I consider her surgeon the real rock star. He was one who made a ‘perfect’ repair on her heart. It is he that created the incision, stitched each perfect stich,  and thought out which way would be best for her heart. All Izzie had to do was heal. All God had to do was restart her heart and give her back to us. Me saying that she ‘rocked’ the fontan is pure bullshit and I know it. We just happened to be blessed with this incredible outcome.

I told a mom right before her son’s fontan that he was going to ‘rock it’, and the complete opposite happened. He struggled in a way none of us could have imagined. I have been a bystander for quite some time, but those words haunt me. I truly believed that he was going to be just like Izzie, recovering as expected. This family was not prepared for what happened after surgery.

What happened with us is that Izzie healed well. She begrudgingly did what I asked her to do. She cried every time medical personnel entered the room. She allowed us to pound on her back, get her out of bed, and to comfort her when she needed it. Her body did the rest. Her spirit, strong as it is, in all fairness probably is a small percentage over how well she has done since then.

Did she ‘rock’ her fontan? No. Emani did. Her cardiologist did. The nurses did. We did. God did most of all. I know what you are thinking. ‘Is Elissa really talking about God right now?” Yes. Yes I am. I know that the God of my understanding for some reason, blessed us with this outcome. He blessed her with the strength she needed to get through the traumatic experience both inside and out. I believe He blessed that little boy by giving him the fight he needs to stay in his mommy’s arms.

The day we got home from her last surgery, Izzie wanted to ride her bike. The picture is of her sitting on her tricycle, happy as can be. We didn’t see that spirit or smile until the last few days of being inpatient. I know in my heart it is the end product of various contributing factors that has allowed her to have the recovery she has had. Boston Children’s, that incredible surgeon, the attentive cardiologist, the kick ass gastro-enterologist,  her anatomy, her strong spirit added in with the hundreds of prayers she has received the past 4 years all played significant parts of how well she has done.

She is no less of a rockstar than her friend who struggles. She is not more of one either because she does not.

 

HLHS

Beep Beep Rymmie

“Rym….oh my God….oh my God…”

“Lis? What is it? What’s wrong?”

“The porn…the scratch tickets…shooting up….who the fuck did I have living with me? Who was this person living in my house?? I have to pack his things. I have to….I can’t breathe. Oh my God I can’t breathe and we just got married. What do I tell people? What do I do? How did I not see this coming…”

“I’ll be right there, hang on. Don’t forget to breathe and I am coming.”

And he did. My dearest friend who rode the train with me, who made me laugh and was at my wedding only two weeks earlier, came within minutes to my house. He held the bag because I was shaking. He cracked jokes to get me to stop hyperventilating. He threw away the stacks and stacks of porn catalogues and scratch tickets that Sean had hidden in the drawer. He let me pause and cry, trying to figure out what went so ‘horribly pear-shaped”, as he would later call it.

Rym was my best friend. We spent that summer seeing Transformers, going to the beach, grilling in the backyard, and having fun. I hadn’t had fun in almost 5 years. For 5 years I lived with an addict who was so unpredictable I thought I was the cause of everything bad that happened. I doubted myself constantly and made his happiness the center of my world because this was temporary right? Someday he would get the sobriety thing and get better, right? And I will be off the hook and be allowed to enjoy my own life, right?

Wrong.

That was never to happen as Sean’s addiction progressed further and further into darkness. Rym was my light in the darkness. We would go to the parades in Plymouth and laugh ourselves silly about wearing turkey hats and gravy boats. Tofurkey was a huge hit and we giggled about the pirates we would see walking around. We ate bags of kettle corn, went to Cabbyshack to have chowder and took Liz to see the Clydesdales (“Francis!”). He taught me that no matter what happened, I would be okay.

At the Early Bird, we would sit together in a corner and giggle about Diane’s whooping. Sometimes the phone would ring at my desk and I would hear “Oh OHOHOH Ohhhhhh!” and start laughing. We would guess the moment when the meeting would ‘Jump the Shark” and play “6 Degrees to Sobriety”. Yes, it is very similar to the 6 degrees to Kevin Bacon game. Meetings were a hell of a good time in those days, and we also saw our fair share of pain too. We carried each other through it. His bankruptcy and inability to see his adopted daughter weighed heavily on him. We both gave our best to State Street.

Tomorrow, he and his beautiful girlfriend are getting on a plane and flying to Boston for a visit. The timing could not have been better. My spirits have been so low with this job situation, and when I allow myself to think about what my life was like back then, I sit here and cry. It was hard, but worth every second. I hated failing at marriage once again, but it gave me a friendship I had never known before. A true honest to God blessing in the shape of Rym MacDonald. I valued his opinion on everything. I still do. Sometimes when I really need him I will call, but Melissa has taken his place at my side when I need picking up or a good laugh. She gets me like he did, and like Chris sometimes does.

My former best friend in high school and some adult years no longer has anything to do with me. It’s a great example of when people outgrow one another. I have friends but none that I feel I could call at a moments notice. Rym was that person for me for many years. He was the person I called when I needed a friend.  I know that my friendship with Rym is timeless, and no matter how many miles away he is, I can talk to him. He will call me back if I leave a message, which is more than I can say for many of my friends. Sorry guys, but it’s true. Check your phones.

Today my life is very different from where it was in 2007. I have more children to take care of, failed at another marriage, and don’t have a job or prospects for one to speak of. My unemployment is running out and my fear is choking me. Huge difference from the pain I felt at being rejected for a bag of heroin. At least I was working then and had more years ahead of me. Today, my hope was lost as I waited to hear back from recruiters. The highlight was my former SSgA manager coming to see me and us going out for lunch. But when his car left my driveway, I felt that old life slip away and once again did my best to get out of the hole. The hope I have for tomorrow is I get to see my dear friend in person. I get to laugh again like I havent laughed in ages. I get to see the man who pulled me out of the darkest time of my life, with hopes that I can do it again.

I am so grateful for your friendship, Rym. I cannot wait to see you.