True friendship has no limitations.

IMG_0946 Today, I am looking forward to being available for a good friend. This person is someone I have known since high school. We used to party together. I remember (vaguely) one time when her friend carried me out of a house because my legs failed to work after smoking way too much pot and drinking. Before graduation, we had a falling out, but then years later we became close again when our daughters were little. Eventually, the high price tag living in Massachusetts was too much so she and her family moved to Maine while I moved on with my life with its many curveballs. In spite of not seeing her in person, I always enjoyed seeing her updates on Facebook so in that sense we stayed connected.

Melissa was the one who saw her post about losing her dad and told me about it. I only go on Facebook about once a day and for a limited amount of time so I missed it. I reached out via Messenger to let her know how sorry I was. I didn’t expect her to respond, but she did. I knew in that second what I needed to do.

This friend was available for me when I lost my best friend, Christy. She was there at the train station when I was too shocked to drive home. She was there when I went to a meeting later that night and watched my daughter for me so I could try to get support. She was there when I relapsed and drank after 7 years of sobriety because I couldn’t handle the pain of losing the closest person to me. She was there when I lost my job, and again when I started my life over again.

I wasn’t a great friend back then. I took more than what I gave back. I still do that sometimes, and it’s something I work on every day. I don’t want to be selfish in my relationships with people. I feel it in my soul when I have shorted someone. I don’t like it and the awareness holds me accountable. I meditated on how I could best help this person who had given me so much during one of the hardest times in my life.

Meditation is something that has become an integral part of my routine. My latest obsession is following the teachings of Ram Dass, who reminds me of my dad. He looks a lot like my dad, with his Ashkenazic Jewish look and smile. I love listening to his older talks because his sense of humor was similar to my father’s as well – self-deprecating and full of intelligence. The topics he speaks on stress on the importance of seeing the whole picture and how being present in the moment is essential to that picture. Letting go of judgement, of how others perceive you, and understanding that there is a realm of possibility outside of what the 5 senses tell you have been life changing for me.

I can’t get enough of his talks and philosophy of loving the soul. It has brought me to a place of acceptance that no amount of reading a certain page in a certain text would ever have gotten me (12 step reference). I am able to step back and let people be who they are without taking it personally. It also allowed me to move past the awkwardness of not having talked to Kelly in years and reach out to let her know I am here for her regardless.

Recently, I have made an effort to focus on being available for the people I have in my life right now at this moment. My life means nothing without the people I care about in it. I want to be there for those who went out of their way for me. Like my friend Kelly, was for me on March 27, 2000 as I stepped off the train trying to process the fact that I would never see my best friend alive again. Kelly and I haven’t talked in years like we used to, but that all disappeared when she responded to my message in great pain. I recognize that pain. I had the same pain when my father died unexpectedly almost two years ago. It knocks you off of your feet, and in my case, onto a couch for 18 months.

Kelly and I sat at the same table at Prom and danced together. We went to the Senior Dinner Dance together. She made me laugh and became my friend in spite of my many faults. We even got into a huge fight that lasted a whole summer and we worked it out before I went off to college. Ten years later, she rushed to my side without me asking. Now it’s my turn to be there for her and for that, I am grateful. #classof1990

The moment you take when you have to catch your breath…

Last night after dinner, Izzie and her dad were sitting on the couch having an ice pop. Addie’s latest obsession is NCIS, which was playing on the TV. After a few minutes, Izzie looks up at her dad and says “I wish I had a whole heart like the rest of you.” Chris was stunned and tried to see what caused her to say that. She said nothing else and went back to eating her dessert.

He told me about the exchange when he got back from the store. I had come by to put the girls to bed after my yoga class which gave him the opportunity to run out. Neither one of us knew what we could say to her to make her feel better. In all honesty, what can we say? The fact is she has one and a half atria, reconstructed aortic arch, and a single ventricle keeping her alive. The other side will never grow, a left ventricle will not magically appear. I am not looking forward to when she starts learning about the human body and realizes exactly how different hers is from her classmates.

It was inevitable that sooner or later, Isabelle would learn that she was different. We knew this. We thought we were prepared for it but last night shows me that we are definitely not. I don’t want to tell this sweet girl that she will never be fast, she will never be able to keep up with her sister, and that someday her heart will give out. I don’t want to have to tell her that someday she will wait for another to die so she could have a new heart because hers will fail.

Chris doesn’t want her to feel like we don’t love her how she is, so he feels like he can’t acknowledge that we also wish she had a whole heart too. We do wish she had a whole heart. He felt, and I agree, that she needed to hear that we loved her even with half a heart, and that we always will. It must have satisfied the inquiry since she didn’t mention it again.

After he told me the story, I sat on the couch struggling to catch my breath. That moment reminded me of the day after we found out there was something wrong with her heart. I woke up wishing it was all a nightmare that I could wake up from. I wanted the day to be like the one before, starting with great hope and joy. We went to Boston Children’s that day and met Dr. Levine who would tell me that my baby would need three open heart surgeries and that she had a 80% chance of surviving.

I remember asking her is she felt that it was worth it. I remember asking what if we did all of this, and it still failed. I wondered if I could do this to an infant – our child. I still can remember her expression as she said to me “You are asking me if it is worth it to have your child. I cannot answer that questions. Only you can make that decision.”

We did go through with the sequence, the doctor’s visits, the tests, the x-rays, the blood draws, the various studies. We watched her literally fight her way to existence, and then cheered her on as she began to thrive. It was not easy going through the feeding struggles, the worrying about being around other children who could get her sick, her color changes that were so alarming in the beginning. Her growing fear of the doctor’s office contributed to our burden and we would have to mentally prepare for her screams before every IV, every blood draw.

Izzie is becoming more aware that she has half of a heart. It is devastating to watch,  but wow- the strength it took for her to get to this moment is something we will never have. She truly enjoys every day to the fullest and has taught us to do the same. Every day is a gift that we are so grateful for. And I mean we- myself, her dad, her sisters Addie and Liz, my partner Melissa, her grandparents, aunts, uncles, cousins….the list of people she has impacted is endless. We are so blessed to have her smile, giggles, and hugs as part of our daily life. If anything, that is what I want her to be sure of. That no matter what she will have to go through in the future, she will be surrounded by all of us. Half a heart and all.

I’ll keep writing about this as more is revealed as she becomes more aware. It’s worth archiving in case other families run into this same issue. I’m sure they have, and more will join us in this part of the journey as our children grow up.

Please consider donating to our Team Izzie’s Hope for the Walk for Boston Children’s Hospital. They are working very hard on finding a solution for kids like her and they are the reason why she is thriving today. Without the care she received from before she was born, I know we would not be where we are now. Thank you! 

 

Getting Off the Couch via the Mop Bucket.

Tonight as I washed the dishes, I noticed that my kitchen floor was dirty. I dried the plates and set them down onto the kitchen table. The dish rack had already become a modern art sculpture of drying bowls, pans and glasses so the table was the next logical choice. Placing the mop bucket into the sink, I reached under the sink to get the Meyer’s cleaner. One of the cats was pondering whether to jump onto the table, saw me staring at him and decided the chair was a better place for him.

The scent of rosemary and lemon filled the air. Our hot water heater is on the fritz so I filled the bucket carefully. I have no desire to waste any hot water. Karma could come in the form of an icy shower in the morning so the ratio of detergent to water must be precise.I grab the mop and place it headfirst into the cloud of lemony-rosemary bubbles. There is a rustling of paper bags behind me. The other cat decided that watching me mop the floor could be entertaining.

The dishes are done. Coffee is all set for the morning. I bring the mop over to the blobs of mud that magically appeared on the floor this afternoon. I glance at the clock. 10:40 PM. I have to get up early tomorrow for an appointment in Waltham. What the hell am I doing mopping the floor this late? I stopped. Wait a sec. I’m mopping. I’m actually cleaning.

So why is this a big deal? Shouldn’t people always keep their kitchen floors and counters clean? Well, yeah. They should! Especially when they have children, one of which has a compromised system. This entire week I have been either straightening the cellar out, re-arranging the living room, and getting rid of clutter. Last week, I spent my days binge-watching ‘Grace and Frankie’, ‘Victoria’, and documentaries about food production in the US while laying on the couch.

For the past 18+ months, I have been laying on the couch barely doing anything that was not essential. Screw that- I missed essential shit too. The blanket on top of me made me feel cozy and I would be there for as long and often as possible. I napped, ate my meals, scrolled through Facebook, and occasionally socially interacted on the couch. I didn’t clean. I didn’t go out. I stopped going to the meetings that ultimately saved my life 18 years ago.

I just laid there and waited for it to end. 

October 6, 2016 my father passed away unexpectedly. I didn’t expect him to die. I thought I had more time. He was supposed to have met my younger two children. They were supposed to hear his jokes and stories about how silly their mother was when she was their age. I would have that chance for us to be together.

I have been grieving that chance since October 6, 2016. As complicated and difficult our relationship was, I held onto hope that I would always have that chance of being with him. There was always that chance that once again I feel that connection with the man I called ‘Dad’. That chance disappeared that Saturday morning when I heard my sister softly tell me in a shocked whisper that he was gone.

I had my moments of tears during the days after his death. I figured that since we didn’t have the best relationship, I wouldn’t grieve like my sister. I was right about one thing. I wouldn’t grieve like her. I have been grieving like me. My way of grieving is laying on the couch, eating bags of Smartfood, and watching Netflix to oblivion.  Here is the moment my sobriety had prepared me for, and I choose to do the opposite of what I needed. My choice was based on what I wanted, and what I wanted was to be on the couch.

As I mopped the kitchen floor tonight, I realized that I was beginning to care about little things again. I made healthy dinners for myself and Melissa to have during the week. I cleaned and straightened up Liz’s bedroom. I made room in the cellar for the clutter I had upstairs, but I also made sure I wasn’t replacing clutter with more clutter. I threw things away. Even my old AppleCare policy from 2007.

This past October, I started a new job – coincidentally on October 6th. I traded my Whole Foods apron for a navy blue shirt and jeans. My confidence began to grow as I learned how to channel my passion for all things Apple. In January, I purchased an Applewatch. I include this in my progression because it was the activity rings that gave me incentive to keep moving. I like seeing that I haven’t been laying on the couch all day.

I wrung the mop out and placed the empty bucket by the baker’s rack in my kitchen. The floor is mud-free. I am tired, but happy. It’s happening. This fog of great sadness and loss is beginning to lift. I can feel myself breathe easier. My heart doesn’t hurt as much about what could have been or what should have been. It was how it was supposed to be. My father meant the world to me. He didn’t always meet my expectations, but I was proud to have his last name, proud to be part of his family, and most of all- grateful that we had some incredible memories that will live in my heart forever.

Keeping it in the day.

In 2012, I became acquainted with the Schultz family through Mike’s blog ‘Echo of Hope’. The description of hospital life with a great sense of humor added in lifted my spirits during our hospitalizations. You can imagine how excited I was to see the Schultz name on my trip to the patient family kitchen. I introduced myself to a weirded out Mike, and mentioned how much I appreciated his writing. His posts gave a sense of validation to the crazy unpredictable life we were having. I wanted to thank him personally for lifting up my spirits. I also met Ari on that day.

For the past 4 years, I have been following their journey, praying for their journey to get easier like ours did. Isabelle had her last open heart surgery in the Fontan sequence and was doing very well. When we got home after 7 days inpatient, she instantly wanted to ride her bike. Congenital Heart Disease was not going to keep her down and she has been that way since. Her Dad and I are grateful that she has been able to grow and thrive in ways we could not have imagined.

We wish everyone could have this outcome like we have. But that isn’t reality unfortunately. Not everyone has the experiences we have had with her being so active, and staying out of the hospital with the exception of a dehydration episode. Every day, I thank God for blessing her with good function for that day. I am aware that things can change without warning.

When you have a child with a condition like Isabelle or Ari, you find yourself between having hope for the future, and keeping expectations in the day. When I start thinking about Izzie’s future, there is a voice that reminds me that moment may not come and to enjoy what is happening right now. I want to believe that she will grow up and follow her sisters’ paths through school and other life events. But that voice is still there, and whispers in my ear to hold on to what is happening now, for that future may not come to fruition.

I hate being dramatic like this, but in the wake of Ari’s unexpected passing I can’t help but feel an indescribable sorrow for Mike and Erica and all of their hopes for Ari. They had just started to let themselves think about the future, and the unexpected happens. Their son was given a second chance with a new heart, and that still wasn’t enough to save him. I hope people understand my frustration or response when I am asked “So if Izzie gets a transplant, she’ll be ok, right?”

No. She may not be okay. We will always have to be on our toes regardless of how pink her lips are at the moment. We will always have to stay vigilant, check her saturation levels and worry about how hydrated she is. We will always be cautious when talking about the future. I am even reluctant to talk about her 5th birthday, which is a huge milestone for HLHS kids because it means her survival rate improves dramatically. We aren’t there yet.

There is no finish line to this race, and we are forced to remember that every time we see another family struck by the merciless heart of CHDs. All we have is right now, and that needs to be enough.

Please remember the Schultz family as they walk through this immensely difficult time. I cannot imagine how awful this is for them and for their children.

The Freedom Detours Can Bring.

When I graduated from Castleton State College (now Castleton University) in the spring of 1994, the path towards a career was wide open. I could see all of the possibilities and began sending out my resume with enthusiasm. That summer I was hired by the local newspaper to assist in the Graphics Department, something I had never contemplated doing before. My career path solidified as I fell in love with typography, aesthetics, and Photoshop. From that day on I knew exactly what I wanted to do with my life.

As I moved forward, obstacles began to appear making the journey more difficult. I jumped over hurdles such as not having an Art degree, having little experience outside of Financial services, and having a family. Each opportunity became more of a challenge to prove my worth as a designer. I was plagued by Imposter Syndrome and when I did land a job, my fears of rejection began to strangle me. One of my favorite jobs became a nightmare of insecurity and doubt, and in the end I lost that too.

I’m sure you have heard of the saying “When one door closes, another one opens”? Well, in my case, it was one door closes and the next one opens to a “DEAD END” sign. As my age increased, my opportunities decreased. My last full time role ended with both parties deciding that it would be best if I found something else somewhere else. 22 months of desperately trying to prove myself had taken a toll. I felt depleted, and empty.

Contracting was always an option, but those roles were for a PowerPoint ‘designer’ in Financial Services. One role landed me at a Construction firm in Seaport District assisting with a massive proposal. The work was fun, I loved the people and secretly hoped that they would find a place for me. They didn’t. Instead, I went back to a financial firm for a week doing a presentation about Women & Finance that was insulting to women. When I left that contract, I knew that I was long overdue leaving Finance.

Last winter,  I was granted a contract at a Health care company covering for a maternity leave. Initially it was going to be a Project Management position, but instead turned into a design role as my talents were being discovered. I loved it. It was work I had always wanted to do. I was thrilled to be able to provide services for a sector I had always wanted to be in. After a few days, my passion to do a good job was misinterpreted as ‘being too intense’. I was confused by the office politics, but quieted down internally so I wouldn’t jeopardize the opportunity.

The feedback was always positive, and with each project I became more comfortable. When I wasn’t in the office, I would think of ways to make the production system more efficient and tried to find ways that I could extend the contract. I left feeling accomplished and appreciated. Realizing that I still needed income coming in, I applied at one of my favorite places to shop and was hired part-time. I thought of other possibilities to do freelance work.

At this time, I still do projects on the side for them, but soon that will change as well.

About 6 weeks ago, I saw a posting on LinkedIn for a Graphic Designer for this company. Instantly, I applied and excitedly mentioned the people I had worked with as references. I contacted both my former manager and a colleague, and told them I had applied. When the initial excitement wore off, I began to think about what I was told by my colleagues on my last day.

“It’s too bad we don’t have a full time role available, we don’t have the budget for an in-house designer.” 

Wait a second. Why didn’t anyone give me the heads up that this was even an option? It’s not like I hadn’t talked to anyone recently. I was just in the office not long ago talking with a manager about a few projects! 

Later in the afternoon I received a message from my former manager encouraging me to apply. When I spoke with them on the phone, I was told that they wanted to look at a few other resumes in addition to mine, of course. I was also told that I would definitely be hearing from them. My heart sank. I knew what this meant. The person I had worked with was trying to be nice, and I did appreciate the gesture. However I would have preferred more of an honest response because professionally, I deserved one. The fact is, they weren’t entirely crazy about hiring me. I didn’t fit in as well as I had hoped.

I was scheduled to work the next day. My heart was heavy as I walked in through the parking lot towards the entrance. I punched in, put my apron on, and walked slowly to the front. I saw my colleagues laughing and smiling. They were happy to see me and I was greeted by the supervisor letting me know where I was needed. I did my job, and for the first time in my working life, my heavy heart did not affect how I performed my job. I smiled, I greeted people and happily completed the tasks before me.

I love where I work right now. I love that Whole Foods allows me to be me. I can be ‘intense’ with enthusiasm for customers. I can be a partner of a transwoman who is welcome in the store and can be herself there. I am allowed to have life events that prevent me from being there on time (as long as it happens sporadically of course). People are happy to see me. They help me when I need it, and in turn I help them. Customers for the most part, are nice to me and engage in conversations about their weekends, meals, whatever.

The pay is not anywhere close to what I was getting before, but that doesn’t matter to me right now because I am happy. I do see people from the financial firms I had worked at before and sometimes I get the “OMG I feel so bad for you that you ended up here” look. I no longer have a corporate job so that means I must be doing badly.  I smile and usually say something like “When I go home, I don’t worry about other people’s groceries so it’s awesome!” And it is. It is awesome to go to work, do my job, and then leave. I don’t carry stress from the office home with me. I can be with my family and be 100% present.

There is no compensation for that feeling. I have gone from the bondage of stress from the office to freedom from it. So what if I wear an apron and have a name tag? I know I am right where I am supposed to be. This path feels good upon my feet and for that, I am grateful.

Feelings.

Feelings are funny creatures. They don’t listen to logic, they are impulsive, and whimsical. They never seem to care about when the right time to present themselves might be. People generally underestimate them, and try to put them into boxes or containers so that they can maintain an outer appearance of being ‘together’. Some feelings are so old and deep, there is no box or container in the world that will keep them locked away.

My feelings are very strong. When I was a child, they would overwhelm me in such a way that I had absolutely no control of what I was saying or doing. I had a hard time chasing them around and finding containers to put them in. My bedroom usually reflected this inner conflict, with clothes strewn on chairs and books scattered on the floor. It always felt that there was a lot of noise going on inside of me as I struggled to organize my thoughts.

Some days, my feelings pantry was quiet. Everyone was in their rightful place. Sadness, anger, fear, and insecurity were staying in their boxes on the first shelf. Other days, all of the boxes would be flung open, and I would be a mess. When I think back on my childhood, I remember being frustrated that I couldn’t control these unruly feelings like everyone else seemed to. Why couldn’t I be like everyone else? Sound familiar?

Last night I was having an emotional conversation with someone, and the Abandonment Issue Box was flung open. My heart beat faster and I began to sense that I was losing my grip. Logic was not helping me reduce the whirling dervish that was growing bigger with each breath. My mouth opened and out came “She threw me away like I was garbage.”

Whoa. Thank God the person on the other line wasn’t having any of that because she cast a line of logic that whipped that sucker back down to size.

“She didn’t throw you away, she was giving you a chance! A chance we were not given, and it sucked!”

Back into your box, Abandonment. I’m not a child anymore and you need to calm the f*ck down.

My answer to Abandonment is Connection. Connection to other people that make me happy. When I connect with other people- it makes my soul happy. My heart opens. I feel whole. The downside is, when Abandonment decides it wants to go for a walk, I crave feeling whole so much, that I don’t realize that I am overwhelming other people who are not like me. What made this recent episode so interesting, was that in spite of knowing logically that I am loved, the mere thought of being rejected AGAIN, ignited Abandonment’s box.

The lesson here is don’t underestimate childhood emotions. They are bigger than we realize and if left unchecked, they can wreak havoc on relationships that you are working so hard to keep. It also goes back to “It’s not all about me.” The world doesn’t revolve around me. Abandonment really thinks that we are the center of the universe, so when I am able to view the world holistically, it stays in the Box. I used to cringe in meetings when people would share about their ‘inner child’. Not anymore. I believe 100% that emotional scars from childhood can impact your life today. The goal is to not allow the scar tissue to warp how you react.

I shouldn’t have been so selfish by saying that I was thrown out like garbage. She was right. I grew up in the best circumstance that anyone could have asked for. I had no right to be selfish when others have suffered because they were not given that chance. My heart is heavy today, but I will focus on what I can bring to the day instead of what can I get out of it.

Jumping someone else’s train

Last night I had a hard time getting to sleep. My mind raced through the various chapters of drama that have presented themselves over the past week and I couldn’t seem to come to a resolution that would allow me to close my eyes. I am at the center of it all, so this is not about laying blame on others. I know my actions have reactions, and the outcome of any situation in my life is dependent on this. Even so, my heart remains to feel heavy.

My emotions get the better of me all the time. I would LOVE to be the type of person who can switch the train tracks of their emotional trains at the mere thought and avoid catastrophe in the process. Alas, I am not. I am the type of person who has a very difficult time with the switch, and sometimes I don’t even realize I missed the station until it is too late. Last weekend was an excellent example of this.

I am an intense person. My emotions often show themselves on my person before my brain registers that they are front and center. In other words, my facial expression may appear to look angry, but I am not conscious that I am angry until minutes after the expression first crept across my face. This often leads to constantly being misunderstood, and this has affected every aspect of my life.

I wear my heart on my sleeve. And many times, the patch is there without my knowledge or intent. Throughout my life I have strived to rip it off, keep it a secret and not give away what I am truly feeling. Alcohol became a great way for me to take time off from that goal until it turned on me and did the EXACT OPPOSITE. Seriously, if you think I am emotional sober….yeah. It was ugly.

Because of this misunderstanding, and my lack of taking a few minutes to separate myself from a situation, I was accused of doing something I never would dream of doing to anyone. I was accused of harassing an elderly woman. As I was trying to explain the situation to a third party, a police car showed up in front of my house. Never in my entire life has anyone ever called the police in regards to me. Never. My heart sank and I began to panic. My immediate impulse was to try to explain that this wasn’t what it seemed, that I was frustrated but walked away from the other person to give them the space they asked for. It didn’t matter. According to this police officer, I was the biggest asshole on the planet for even thinking about harassing this poor older woman. Let’s just say he had no interest in hearing anything I had to say.

Tears ran down my face as I begged my mom to come over and help me. She knew I would never hurt anyone. She understood me and my hope was to get some validation that I am not the worst person on the planet. Melissa stood by my side and gave me guidance as how to handle myself since I have literally no experience with police. Chris also tried to help and my girls wanted to be with me knowing how upset I was. All I could think was, how can anyone think that I would be capable of hurting someone like that? I don’t think I stopped crying about it until the next morning to be honest.

A few days later, I was the target of another assault by someone else. This time I could shrug it off and say to myself that it was more about their struggle than about me. Still, my heart remained heavy as I attempted to get ready for work. Am I really this horrible person that everyone in my family secretly hates? Do they go out of their way to avoid me and my chosen lifestyle? The second guessing is hard to avoid in these situations but by the time I reached Hingham, I was able to put a smile onto my face. Well, kind of.

My new job is not glamorous. I don’t ride in an elevator to get to my cubicle. There isn’t a fancy coffeeshop I get to stop in on my way in. Instead, there is a feeling that I am ok and accepted no matter what. I put my apron on, punched in, and set about doing what was expected of me. In spite of how heavy my heart was from all of this turmoil, I was able to smile and help others. At previous roles, the feeling of being unacceptable would be exacerbated by my surroundings. Not here. Here I felt appreciated and accepted. I could make people smile back at me and it didn’t matter that others close to me had hurt me. All that mattered was being present for others. It was truly a blessing.

For the first time in my life, in spite of my sadness, I was able to have a good day at work. I had never been able to say that before. If you ever find yourself in a position where you feel like things couldn’t possibly get worse, try to reach out and help someone else. For me, that made all of the difference.

The situations have somewhat calmed down but my heart is still heavy with how I appear to my neighbors. I cannot make amends to this person for upsetting them right now per their wishes. The other situation seems to have smoothed over and I hope that they received what help they needed to get through it. I know I have the most incredible people in my life both at home and work who have helped me get through this as well. Hopefully I can get better sleep tonight knowing this.