Tales from the Pre-Op Scavenger Hunt

It’s interesting when what is supposed to be simple, becomes difficult and challenging. The procedure Izzie had recently was described to us as a simple catheterization, where they would close the hole and maybe coil a few collaterals if need be. It was an overnight stay with discharge in the AM. We packed light. We encouraged her that she could do this, that soon everything would be over and she would feel better. Problem is,  four year olds do not care if they feel better, they only care about getting poked by needles and how much that is going to hurt.

I knew it was going to be harder than we initially thought during the Pre-op Scavenger Hunt. We call it a scavenger hunt since we have to go to various places within the hospital before we can sit down and discuss the procedure. Labs were first and to make Izzie a little more comfortable, numbing cream was placed on both arms. The mere act of placing cream onto her skin terrorized her. She shrieked and tried to squirm her way out of our laps. Eventually we were successful, but only because she saw a little boy having the same cream put on his arms and he seemed to be fine with it. Whew! Thank goodness for peer pressure.

The moment of relief quickly dissipated when her dad and I realized that if she was that upset about cream going onto her skin, what would she be like when we would have to hold her down so that her veins could be accessed? My heart began to beat faster and I breathed in deep breaths to calm this growing anxiety that threatened to remove my sanity. I looked at the white board that had our Scavenger hunt written out. Oh my God. Not only did we have to have labs, but an echo? Chest X ray? And and EKG? Holy crap.

I looked at Izzie sitting on her father’s lap with tears still on her face from the cream application. This was going to be a long day. I sighed and sat down next to Chris, both of us sitting in dread. We went down to the outpatient blood lab. We watched the Teletubbies as we waited for our turn in the torture chamber. At a conference about Congenital Heart Disease that we went to I received a coloring book on catheterizations to help explain the process to a child. Unfortunately, there was nothing in it on how to deal with the fears and trauma that a child has from a lifetime of procedures. The book had a page about blood drawing, but I can guarantee you our experience looked nothing like what was in the coloring book.

We had to hold her arms down as the technicians searched for a vein. She screamed and looked at us through tears and disheveled bangs. “Make them STOP! MOMMY, DADDY! MAKE THEM STOP!” As soon as they got what they needed, I picked her up and began soothing her. I rubbed her back and she melted into my shoulder, her little hand looking for my ear to play with. We held her for a bit while we headed back to the Pre Op Home Base. The EKG wasn’t much better. Neither was the echo. Telling her that you are just putting stickers onto her doesn’t make the fear go away. She doesn’t want the stickers. She wants you to take those stickers and shove them up your ass.

Our last stop was a room in cardiology. We had seen Izzie’s cardiologist after the echo and were confident that we were ready for the next steps. We knew that she was going to have a cath, but we weren’t sure what the closure entailed. The attending drew a diagram that Einstein would have struggled with deciphering and then explained how they were going to close the hole.  He was trying to engage Izzie but she wasn’t having it. She wanted to go home. She was done.

We signed the papers, shook hands and said ‘See you tomorrow morning!”

This was all stuff for Pre-Op. This wasn’t the real deal yet, and already I was having palpitations thinking about how scared she was going to be the next day. Nothing I said or did comforted her and I think that was what was scaring me the most. The fact that I wouldn’t be able to pull her out of it. I had to be there and allow her to feel what she was feeling, no matter how much it hurt us to.

I will be writing about the procedure in a different post because this entire experience was so overwhelming for us I don’t want to do the same to my readers. Today she is enjoying watching her iPad, having tea parties and having Cinnamon Toast Crunch. We are hanging in there and she looks amazing. Her numbers have stayed in the high 90’s and we feel so blessed.

 

And then there were two…

For years, my father, sister and I would spend weekends, school vacations and a few evenings a month together. We lived with our mom in Plymouth and he lived in Braintree. The car rides seemed to be so long back then, with little to entertain small children. They became even longer when he moved to Stoughton. Today, those car rides feel like seconds in my memory.

My father and I had an interesting relationship. He never lived with me so we didn’t have the same opportunity to bond like he did with my older sister. Instead, we had a kind of friendship that had a level of respect that was different from most typical father-daughter relationships. Our relationship also evolved over the years as circumstances around us changed. It was unique, and special because it was perfect for us. Don’t get me wrong- I would have liked a closer relationship but looking back I realize that it was the way it was supposed to be.

My father was a compulsive man who needed immediate gratification. He made a lot of decisions based upon impulse and those decisions caused a lot of pain for me. He was a huge reason why I drank and when I sobered up I was able to deal with that pain. Sobriety helped me see it with clear eyes and an open heart. I saw him as a human being who loved me in spite of the self-made obstacles. We became close, then not so close. Ebbing and flowing like the tides he loved to watch.

Today, we are preparing for his funeral. The dark, rainy weather is perfect for picking out caskets. Later the rabbi will be meeting with us to discuss our father, and we will be getting ready to say our final goodbyes. As the hours pass my thoughts will be sorted into our life before 1987, and after. I think it is important for people to know what an incredible dad he was to us, how much fun and joy he brought to me personally. Our relationship wasn’t always difficult. It was extremely rewarding and I plan on reflecting that in my thoughts.

I want to take this moment to thank everyone who has sent me condolences and thoughts. I can’t answer them all right now, but each one has lifted my heart during this impossibly heavy time.

 

When Running for Faith gave me a run filled with hope.

“Guess what we are doing Sunday?” I texted to Melissa on Wednesday afternoon. “What are we doing?” came the reply. “We’re doing a race!” I messaged back, and then waited for the response. As usual, the response was “Ok.” Fantastic! I had wanted to do this race a few years back and since this was the last year it was being held I did not want to miss it. It would give me a chance to exercise, for us to do something fun, and would keep me from thinking about my girls who are having a blast in Orlando without me.

Running through Chiltonville is amazing, and a little dangerous. There are crazy turkeys who hide in the brush in between houses just waiting for you to run by so they can rush out and literally scare the crap out of you. The sidewalks are warped with the gnarled tree roots, anxiously awaiting to break your ankle. Sometimes it’s almost like they are laying dormant until your shoelace is caught on a random branch that technically shouldn’t be there but is because the tree root is 6 inches out of the ground. Don’t even get me started on the fact that there are NO sidewalks on some of the roads and there aren’t much of a shoulder so if you are running and a car comes from either direction, you better hope there isn’t poison ivy in the foliage you just jumped into.

So why try to run in that area at all? Who on earth would have a road race there? Someone who knows and loves Plymouth. Someone who knows that sometimes good runs are about the views, and not just an easy terrain. Beautiful untouched fields and meadows, brooks, and farm land just minutes away from the ocean. It’s like a piece of Vermont was placed next the beach. Gorgeous.

Of course, it was also one of the hottest days we have had in a while. I’m fine with the heat, but Mel is like Chris- they hate the heat. Both of them come back to life when sat in front of an air conditioner. We still had a great time walking through the trails and by the small brooks behind the houses. People were really friendly and I saw a few friends whom I haven’t seen in a while. It was a great time but something extraordinary happened that I completely did not expect.

Melissa wanted to be more like herself for this race. We went to Kohl’s and found a sports bra that would fit her. As we went through the day preparing for the race, I became anxious thinking about how Mel would do around a lot of people dressed as herself. I felt lightheaded. She asked me what was wrong and I asked “Are you going to be ok with this or are you going to start to freak out and feel like everyone is staring at us?” She looked at me directly in the eyes and said “I will be fine.” I did not share that confidence at all. I mean, we were shopping in the grocery store and she had an anxiety attack while wearing a pink shirt that anyone could have been wearing. This time, she will be wearing an actual sports bra. What if she freaks out and we have to leave?

Melissa assured me that she wouldn’t. I tried to relax but it made me nervous all night. The next morning we got ready and began putting our gear on. I was washing my face when she was getting into the sports bra. I was disappointed that I missed the event – a feat that is very hard to do in the summertime and I really wanted to see the spectacle but she managed to get it on without dislocating a shoulder. She put the yellow tank on over the bra and I could barely see it. I breathed a sigh of relief. We were good, we were okay, and we would blend in. We get in the car,  made our way to Plimoth Plantation and towards where the starting line was.

Here’s where the miracle happens…we get to the race, park the car and debate when to head over to where the runners are supposed to be. People are starting to come in and I am enjoying the growing excitement that seems to spread from one runner to the next. We walk with a few people towards the registration area and I turn to say something to Melissa. I realize that her purple straps are starting to show and I look around. No one was paying any attention. People walked by and said hello. No one yelled out “Are you wearing a bra, dude?” No one cared. All they cared about was getting through this heat, and having a great time doing something they loved.

You see, the running community could have cared less that a transwoman was in the race. They were happy there was another person there. It didn’t matter if that person was 6 feet tall, with a ponytail, who needed a shave and had a purple sports bra on. They were happy to share the road with us. No one said a word. Then it hit me. When you are a participant in a race or part of the running community, we are all on the same road. We each want the other to enjoy what we love so much , it doesn’t matter what you look like or whether you are a speed demon or not.  This aspect of the running community has always been attractive to me, and on Sunday, it shined. It inspired me to not give up on my running, or on us being out. It showed me that there are people in this town who are truly good people and aren’t I fortunate to be part of that.

 

When doing the right thing means not doing it for yourself.

From the day he packed his bag and walked out of the door, my mother never said a negative word about my father. Not once did she bait me into conversations about what a horrible person he was or dove into sordid detail about their finances. I didn’t know anything other than he was remarried and that he came to see me just about every other weekend. He also had us for two weeks during the summer. Not once did she ever get into how badly he hurt her nor did she ever feel the need to discuss his poor parenting skills.

Instead, my mother had the dignity and grace to recognize that my relationship with him was none of her business. She knew that it wasn’t her place to say those truths to me because I loved him. I loved spending time with him and looked forward to when he would pull into the driveway or park out front. And when he would see me becoming emotional, and made the decision to go on with my sister instead of me, my mother just held me as I cried. She never said that he was horrible person.

She had every right to. My father enjoyed anything that fit into a skirt. He didn’t have patience to deal with children and their emotional outbursts, especially mine. On days when he had little patience to begin with, he would do exactly what I have outlined above – tell my sister to get in the car and left me home. I would watch the red taillights go down the driveway through tears. What had I done this time? Why couldn’t he take me? Didn’t he understand that  I missed him so much and wanted to see him?

My childhood is full of moments like this where I was never quite sure if things would work out as planned or how I was told they would. He would be consistent enough to get my hopes up only to crush them in such an unpredictable way. I was a young girl who felt like someone else’s trash to begin with, and this was plain abusive. Each time I was abandoned, my mother was right there comforting me and reminding me that I was wanted by someone. Not once did she tell me that he was a poor excuse of a father.

She never said anything like that to me until after he disappeared without a trace. She waited until I was old enough to understand who he really was and what he was really like as my father. She waited until I was old enough to come to my own conclusions, instead of being coerced into believing something that was based on opinion or her own pain. I learned that he wasn’t sure if he wanted me and that there was tension prior to my adoption. Other revelations included his serious gambling habits, examples of selfishness and attempts at keeping my mother under his control. He wasn’t abusive but he wasn’t supporting of her ambitions to obtain a Master’s degree, or anything else that benefited her.

Today when something happens that frustrates me she reminds me of who he is so I don’t get too upset or hurt by his actions. That’s as far as it goes. It doesn’t go into phrases that include statements like “You’re better off without him.” When my father remarried, the visits became less. Apparently, this happens more with fathers than with mothers. According to the American Psychological Association, kids do better when they maintain close contact with both parents. They also go on to say that Research suggests that kids who have a poor relationship with one or both parents may have a harder time dealing with family upheaval.”

So basically, my mother was ahead of her time. Thank God she was. When a parent stops contacting their children, they can’t help feel abandoned. And feeling abandoned doesn’t go away with age. Instead of looking at my emotional outbursts and blaming me, my mother knew that it was me acting out how I was feeling. It didn’t make my unacceptable behavior acceptable, but the ‘adulting’ was put on the adults. It wasn’t put on my shoulders or my sister’s. I wasn’t blamed for being what I was at the time: a hurt betrayed girl who was frightened that she was unlovable.

In Melissa’s case, take this and times it by ten. The separation behavior still continues and a recent example is her half brother, stepmother, brother and sister all went out for dinner. I will give you one guess as to who wasn’t there and her name starts with “M”. I have been thinking all afternoon about this. Maybe it’s because others are still going to hold grudges and not deal with the entire family as a whole. Maybe it’s the whole transgender thing and the obvious fact that if their father were alive, he probably would have physically killed her. Maybe I am just a mind-fucking asshole. Personally, I don’t consider a dinner a ‘family’ dinner if the entire family isn’t present. Best part about this was the fact that I messaged this woman and told her that we would love to see her if she was visiting in Plymouth. Wow.

So why do I care about people I have never met? Well, for one it hurt the person I love. At one point today she laid down and I could see the pain in her face. She wanted to do what she normally does when she is feeling overwhelmed. Reason number 2, it also showed me that you are not over past transgressions which were fueled by both sides, by the way.  Part of being a grown up in a situation like divorce, is you don’t force the children to take sides. You just don’t. It doesn’t matter if they are adults at the time of the divorce or not. And this goes a thousand times no if the child was a transgender adolescent girl who thought she was going crazy and had no idea where she fit in but she knew she had to hide so she became this angry young man who couldn’t stand being alive.

And the answer to all of this is….let’s all go out to dinner and not tell or invite Melissa. Because she’s sober. Because she is finally being happy and true to herself. Because it’s uncomfortable and inconvenient. The answer is not a simple “You’re better off without them”, because it doesn’t address the pain being intentionally left out brings. The answer is we have our own life, our own family and surround ourselves with people who truly love us and not give us lip service.

 

365 days and counting…

 
This is my favorite picture of Isabelle. It is the day our fight began. It is the week before her chest would be scarred for life. It symbolizes the perfection she truly was in that moment. In that moment, she was normal. That moment didn’t last long, but we enjoyed it as much as we could. We knew after that moment, her world would become full of doctors, nurses, procedures and repairs. Our world changed too. I became someone I never thought I could be. 

Today, Isabelle turns four years old. Today my tears will come from sheer joy and gratitude as I reflect on the journey we have been on the past four and a half years. Today, I will celebrate not just the anniversary of her birth, but of the first day she fought against the most severe heart defect a human can be born with. I am celebrating the moment she cried out after being taken from my body, the whisper I made in her ear. “Shout to heavens, Izzie, You shout to the heavens and fight!” We were there to bear witness to her cries “I am here, I am going to live and I will fight”. That is what I heard four years ago this very minute.

365 days. For 365 days, my daughter has fought against congenital heart disease. She has said “Not today,” to her hypoplastic left heart syndrome. “Not today.” For 365 days, she has laughed, played, cried, gotten into things she shouldn’t  have, and grown a few inches. For 365 days, she has told HLHS “You are not slowing me down.” Each day was a day filled with running, kicking a soccer ball, learning to swim, climbing furniture, and determination to be a puma. 

For 365 days, Isabelle has told CHD that she is not letting it win. She has shown us what it means to love life and enjoy the moment we are in. Her smile has lifted the weight in my heart when I stop to think about her future. I know something she doesn’t. She may have won the past 365 days, but there is no guarantee the streak will continue. We don’t know if her function will stay the way it is, or if she will begin to develop symptoms of a weakening heart. She doesn’t know her heart is special, she just knows that sometimes she throws up for no apparent reason, and that she can’t run as fast as Addie. 

Here is a gift I am giving myself in honor of her birthday. Instead of worrying about her future, today I want to celebrate another 365 days of her beating HLHS. Fear has no place here on her birthday. Today, we will celebrate the joy of telling congenital heart disease to go f*ck itself, and have a piece of cake. 


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.

 

 

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.