HLHS

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.

 

HLHS

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.

 

HLHS

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.