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


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.


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?


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.