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.

 

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.

 

Finding hope in spite of being in the middle of thunderstorm

I have a lot on my mind today. After sitting here messaging my girlfriend a few thoughts prior to her therapy session, I realized that I am still in rough shape from yesterday. I do enjoy my life for the most part. With the exception of not being employed, the gym taking my money without asking, and the occasional overwhelmed feeling I get when I think about the previous items, life is pretty good. Izzie is healthy. Addie is enjoying summer. Liz is home and figuring out what she wants to do for the summer. Melissa is working in Boston. Life is good.

For the most part.

What is troublesome is some of the little stuff that interferes in my sunshine-filled afternoons. I don’t mean my girls- they are truly bright spots in my week. I mean little stuff that turns into bigger stuff. Transition stuff. Other people’s family stuff. Things that are completely outside of my control but have the power to drain the life out of me in a heart beat.

Yesterday we went to Market Basket after visiting Betty at the hospital. She was preparing for yet another test and wasn’t feeling well so we left to pick up items for supper. Melissa was dressed more like herself, in her hot pink t shirt, jeans and favorite bra. She looked great to me and I didn’t think twice about heading to the grocery store. After a few minutes, she became anxious and started talking about people staring at her. My heart sank. We had to hurry.

As we went through the aisles I looked to see if what she was telling me was happening. I began to look around us and saw people reading labels, putting stuff into their carts, and heading to the registers. I looked at her and said “I am not seeing what you are telling me” which I guess are the worst words you can say to someone whose anxiety level is growing by the second. My goal was to de-escalate the situation, because in true Mel fashion, she became louder as her panic attack grew.

She insisted people were staring at us. I looked again, this time rather frantically as I realized that I wasn’t seeing what she was seeing. It got worse. I rushed us through the line and my heart raced as we headed to the car. All I kept thinking was “I don’t know what is happening! I didn’t see anything so am I supposed to lie?” She became upset, I became upset, and we headed back to the house to make dinner.

We get home. I try to talk to her some more which was another mistake. She got out of the car and went inside the house. Sometimes when we disagree we sit in the car and work it out. Nope. Not happening. I turned my thoughts to the grill and getting the coals lit so we could at least have some food. I couldn’t find what I needed to light the grill so I began walking to the house.

After a little more arguing, it hit me that she is categorizing me as one of her family, who tells her she is imagining things that are not really happening. I felt helpless and completely lost as to how I could make this better. I apologized, and the tears came, born from my frustration over the entire situation. She didn’t feel heard, and I didn’t feel heard either. I felt completely powerless and frightened and I hate feeling that way. It makes me want to run away. At one point, I contemplated leaving when she walked into the house but I knew that wasn’t going to solve anything even though my entire body was yelling at me to leave.

I love Melissa. I really do. However, transitioning is not a matter of adjusting physically, it is a huge adjustment emotionally. She is basically entering adolescence again, with the emotional maturity of a 14 year old at times. It also is a matter of how to handle the staring. The looks that say “I know what you really are and I don’t like it.” There have been times where Melissa can brush this off but she definitely has moments where she is affected by the looks and finger pointing. It will happen, we need to expect this because this is the way the world is. We can’t change how others feel about us, but we can change how we react to it because that is in our control.

I was on Facebook briefly today and saw another offensive post that this time, I stayed out of. I know there are people who think certain jokes are funny, but I want to explain where I am coming from when I ask why you feel my life is a joke. Your jokes are giving another person the justification they need to hurt one of us. What seems light-hearted to you, is fueling someone else’s fire. Sometimes, it even gives them reason to go into a safe haven for LGBT people, and open fire on them. Words are powerful things. They can instill many emotions in a person, and connect us to the word around us. They also have the power to kill, ruin, and destroy lives. Kind of like guns, but I digress….

Melissa came home and changed her clothes. It was not the reaction I felt she should have done, but it was what she has done for 43 years. She had to go back into being him to be able to feel safe for a few minutes. I hate this. For those of you who feel that this is still a choice, please know that no one in their right mind would choose living this way- in hiding, shame, and struggling to be themselves.

Today I feel emotionally beaten. I did my best and I failed. She gets to chat about all of this with her therapist, and I feel a little miffed about it. I want to be able to say “What am I supposed to do when she sees people staring and I don’t? How am I supposed to handle her anxiety and help her walk through this as her partner? Why does so much of her transition fall on my shoulders?”

I don’t know the answers to these questions other than I stay here because she is the person I love. I am willing to do what I have to do to recharge and be available for her and my family. I have never loved someone to the core like I do with her and when she hurts, I hurt too. I’m sorry if this isn’t making a lot of sense. It’s been an emotional 24 hours, and I hope as the sun moves across the sky, the hope for a better day is on the horizon.

 

To the instructor who told the class she prefers working with ‘young designers’

I guess maybe I should thank you for validating what I have been suspecting for quite some time now – that I am not being considered for positions because I am on the ‘older’ end of the spectrum. After researching the various career-building websites out there to see if this was actually the case, you confirmed it for me right before we headed out to lunch. For months, I have been sending out my resumes, trying to remain positive, and doing what I can to salvage my dying career. I even went so far as to take this class to inject some life back into my skillset, and compliment the design skills I already have. This very class, where in a matter of seconds, your comment completely drained my self-confidence.

The feeling reminded me of when I saw my birth certificate and adoption papers for the first time. I have known that I was adopted my entire life. That was never a secret to me. When we went to the courthouse to get permission to review the papers, I knew I would see this woman’s name. What I didn’t expect, was my reaction to reading the words “I, Patricia Therese Frappier, hereby give up my parental rights to Baby Girl Frappier.” I felt angry,  sad, and relief  all at once. I couldn’t figure out why. I knew the story. I knew I came from somewhere; but now the trace feelings of abandonment I have had my entire life were given validation. The same validation your words gave to me, in response to my feelings of “I haven’t heard back from the recruiter, I think they feel that I am too old.”

Then as the class went on, I became angry. Who are you to say that you prefer younger people to work with, without adding more context? How dare you say something that refers to age, knowing that two people in your class are considered NOT young? The same two people who ACTUALLY do the homework and the pre-class work that is required for us to pass the course? I miss one class and feel horrible about it. One of the people in my class  arrived late, had made social plans that she needed to be at before the class day ended, and has yet to pass in an assignment. What pisses me off more than anything, is that you just told me that you are more likely to hire HER because she is younger.

In some areas, younger isn’t always better. Younger- in the context of some of the students in my class- seems irresponsible, careless, and very self-centered. I can see why. Why do the homework or pass in assignments when your workplace footed the $4,000 bill for the class? What investment do you have in something that someone else is paying for? I mean, what kind of idiot stays up until 12:30 to finish her site map? This one, right here. I would also like to mention that the other younger members of my class also failed to bring their sketches in, even after you specifically asked for them IN ALL CAPS.

But what does that matter when these people can provide you with the freshest ideas, be easily persuaded into doing work that makes your life easier, and who is willing to be paid less? It should matter. Fresh designs are great, but if you have someone who isn’t very driven or follows the laws of common courtesy, then you have one fresh design and maybe not much else.

This Gen Xer is not afraid to say that she has had lots of experience in the real world of creating designs for other people. I know what it means to come in early and stay late. When I am given an opportunity, I give you my loyalty and channel that through my passion for my work. Whatever it is you need I will do and if I can’t, I will find someone who can or figure it out myself. Nothing was ever handed to me, I worked hard for every position I have been in since Friendly’s. In my opinion, my age is a moot point. My abilities haven’t changed. I can design the crap out of any presentation, any poster, any brochure, and any web page you hand to me.

The problem is, the world of Graphic Design is a young one. Youth rules and the curmudgeon says stuff like “You can’t use Google fonts, the fonts have to be system fonts…” There is a huge misconception that as people age, the are no longer creative. I don’t feel that way. The reactions of people who viewed my work didn’t reflect an opinion that because I was over 40,  I wasn’t designing creatively anymore. I can say this- It doesn’t help when instructors repeat this to you when you are trying to breath life into your design world.

I am sure I sound bitter. It’s hard not to be when you were raised to bust your ass, live by the ‘work hard and you will be rewarded’ kind of stuff, only to find that one day you are not hearing back from people about positions you KNOW you could do with your eyes closed. You hope that it’s just a matter of someone being on vacation, or that maybe your website didn’t show them the cool project that they needed to see. What you don’t want to hear is that the reason  you are not hearing from them is beyond your control, and you have no chance to show otherwise.

This Gen Xer refuses to give up, will not stop trying, and will continue on learning this incredibly interesting world of UX design in spite of possibly needing a walker in about 15 years. I am not going to stop fighting for my career and  for my chance to provide for my family. My career may be changing, but I am not stepping down to allow a younger person who has no concept of what it means to come in early and stay late, take my career from me. You will have to wrestle my MacBook from my cold, dead hands…

Ok, maybe not that dramatic, but I refuse to give up. I have a lot of great experience to offer a company, and with my new skills combined with my background I can bring a combined approach where others may not be able to. My days of learning typography, layout, aesthetics, and basic common workplace courtesy were not for nothing. My passion is great, I am constantly getting inspiration from life around me and let me tell you, that at 43, this sh*t is getting off the ground.

 

 

The different ways one can travel down Route 4

We have enjoyed our stay in Vermont the past few days and are preparing to start our journey home. Everything has been great- the food, the weather, and seeing old friends. Traveling through former stomping grounds have stirred up the expected emotions of feeling nostalgic and regret. I have made numerous attempts at navigating through these moments by reminding myself of the positive choices in my life, and how exciting new opportunities are waiting for me. This works during acute moments of panic and until last night I didn’t have anything more than that. It was manageable. It was until about 9:00 pm. 

On our way into Castleton to visit my friend and her husband, we rode Route 4 while listening to the Joshua Tree. The green mountains rose up all around us, and the familiar view of Birdseye mountain and its compadres tugged at my nostalgic heart. I thought about the first time I saw them, the first moment I realized that I was going to be in this place for at least four years of my life and my happiness at the idea of being far away from Plymouth. Vermont was to be a new beginning for me. It was going to be a place where I could start over and not be the drunk girl people were ashamed to be around. Little did I know that she followed me through those mountains. 

As we went through the center of town I felt remnants of those emotions from long ago. It was like holding a fading photograph that is in bright full color when you first see it, and then it slowly fades as the memory is processed. Faded corners, vivid center. I had my entire life ahead of me in 1990 when I first came to Castleton on route 4. Entire life. So much hope for better things had replaced the feelings of being a total screw up. I could still feel that hope, faded as it was. Bittersweet. 

After a few turnarounds we finally found my friends house and enjoyed a nice afternoon sitting by the lake in their backyard. We talked about sobriety, meetings, different people we have known and what was going on in our lives. It was great seeing them and we left during a downpour thanks to a thunderstorm that decided to hang out in that area. There were moments we had no visibility which made the ride even more exciting. We pulled into Castleton and went to Birdseye (formerly known as The Jims Diner) diner for supper. 

The road back was not sunny. It was foggy, wet, and poor visibility at times which matched my insides as the car made its way up the mountain. I had to enter my info for unemployment, which brought up thoughts of “how much time do I have left? What am I going to do when it runs out? Is this User Experience class right for me and do I really think I will be able to get work after the class?” It was a tough road back, my chest felt heavy and I became quiet as the fear settled into me. Things didn’t improve when I attempted to feel better by contacting the girls to say goodnight. I ended up not talking to them and instead struggled through the immense emotional that turned me into a puddle.

I feel bad for Melissa, as she had gone downstairs to get a snack and came back to find me sobbing. Even this morning I am still in pain and snapped when she was trying to be light with me. I just feel completely lost, unsure of myself and what I feel myself gravitating towards as a career isn’t what others have in mind as a good plan. It’s a bad place for me to stay so we are going to pack up, head to Rutland, maybe make a meeting and head home. I need to get some hope because right now I can’t generate any by myself. Many years ago someone taught me how I can get hope back in my life, and I think I will follow her suggestions to get some. 

Hatikvah

At my Bat Mitzvah, I saw one of my grandmothers sitting and I didn’t see her often so. I went over to give her a hug. In spite of Hurricane Gloria and the lovely power outages that came with her, my party was in full swing and everyone was having a good time. I had been thinking about what was to happen next for me in my Jewish journey as a Levin, so I asked her a serious question.

“Nana, do you think instead of sending me to Israel like everyone else, could you send me to Hawaii?” 

She turned to look at me, was silent for a second and then laughed like I had never heard her laugh before. She laughed and laughed. I could tell that perhaps I had made a mistake and moved on. According to my other grandmother, whom she grabbed right after to share my question with, she thought it was hilarious. That was one of the last good belly laughs she had, and she passed that following November. 

I have yet to make that trip to Israel. Never made it to Hawaii either, but I would take Israel over Hawaii any day. The passion and love my grandmother Helen Levin had for the state of Israel was so immense, I still can feel it even now, thirty years later. She traveled there often, and did a lot of work to help implement humanitarian efforts. She and both of my grandfathers- Bob Levin, then Max Moskow, donated to Hadassah hospital. When the State was just beginning she sold bonds to raise money to support the efforts. She told me stories of the children there, and of the places that she hoped I would see one day. She told me how lucky I was to be born in a world where there was an Israel, a homeland for Jews.

To me, she was the most beautiful woman in the world, and I remember telling her she could have been a movie star like Bette Davis. She thought that was pretty funny too. Because I didn’t see her often, the moments I did spend with her are even more special. They are so precious to me and as each day passes,  as I start to forget the sound of her voice, they become even more. I will never forget is her passion for Israel and her determination that every grandchild will see the country she loved so much.

Nana,  I know that if you were here with me today that you probably would be shaking your head or maybe disappointed in the decisions I have made. I know that many in our family look at me very differently these days and there are days I struggle with that. What I do know is that in spite of my failings you would be immensely proud of this incredible young woman who is traveling to your favorite place tomorrow morning. She will lay her eyes on the same places you held dear to your heart, and I know you will be beside her standing in the desert. I may not have been able to get there but my daughter will, and hopefully the other two after her when they get old enough. Izzie already has a heart sister in Jerusalem whom we cannot wait to meet someday. This heart sister named Tehilla, who is thriving because of that hospital you helped fund so many years ago. You are still touching my life in ways I could never have imagined.

I love you Nana Helen, I was so blessed to have had you in my life for those short 13 years. Thank you for passing this incredible love to me for a place I have yet to see, so I could pass this on to my daughters.