256 Shades of Gray

I have never been a black and white person. I have never been able to compartmentalize my life, feelings or anything else that is remotely organized. I gravitate towards things that force me to organize my thoughts such as planners, note taking apps and Pinterest boards showing me how to organize my clothing chaos into a neat closet. Do I do it? No. I can’t. Most of the time I give it an honest effort but then my attention is sucked into a different direction and I leave piles of grass on the lawn when I was supposed to have finished my grand landscaping idea. Seeing things in either black or white has always eluded me and that’s ok. Nothing in my world is ever what it seems. I have tried to keep up appearances throughout my entire life but putting on an act of “Everything’s Ok” doesn’t work well when you wear your heart on your sleeve and face.

I know people don’t understand my life. They see a black and white situation that is either this or that. They don’t see the complexity of the various shades of gray in between the extremes on the spectrum. I learned about the various shades of gray when I began my work in graphic design. I had no idea there were so many different variances of the black and white mixture. It became a metaphor for how I saw my world unfold when I got sober. Before I cleaned up everything was black. I didn’t have any white. Just lots of darkness. Then as I started taking suggestions and changing my life, the shades of gray began to appear and I realized that people don’t always appear as they really are. Before I put down alcohol and drugs, I was a crazy unpredictable time bomb who could go from laughing with you to punching you in the face without warning. My picture at my college formal with my boyfriend at the time shows me smiling and him dressed up with a black eye that I had given him during one of my episodes. Am I like that now? No. I haven’t hurt anyone like that since April 1993. But if that is what you saw on paper, you would have thought I was completely insane.

If things were black and white or absolute, other heart mamas wouldn’t lose their children. They would have had their children through their diligent efforts of keeping them alive. They would be healthy because they appeared to be healthy. Unfortunately many of us know this is not always true and it is devastating when you see a mother do everything to save her child only to have them pass. If all of her efforts were defined on paper, then the outcome should have been different.

I have to begin a project that will help me sort through the chaos in my life right now. I am not looking forward to it but I have great hope in the perspective it will give me. With her surgery looming over my head I need to make sense of things. There are times when things need to be put away where they belong. Clutter doesn’t suit me both internally and externally.

I do understand why people find comfort in linear thinking. It’s easier if things are simple. Complexity requires a person to adapt and if you don’t like change then it’s not easy. But it’s not easy trying to make sense of things when they don’t make sense. Many things in life have 256 shades of gray instead of two colors. It’s important for me to remember that other people don’t see life that way. At the same time, if my past defines me as a human being, I wouldn’t have a life that comes close to what I have today.

Day 17 of 30 Days of Gratitude: I am grateful for my Sunday School class

I have taught Sunday school a few times for the synagogue over the years. My first class was amazing. I had twin boys, a young man with an incredible sense of humor, and overall some amazing kids. My second class was another great group who met every challenge I threw at them- whether it was reading passages in the Torah or writing an essay on what was happening in the world to be read at services that Friday night. These kids chose to write about the Iraqi war, and compared it to one of our own stories. I can’t remember what story it was but they did an incredible job of writing a mature response that was very thought provoking. We also had great times in class, talking about everything with some judiasm peppered in there. 

The class I have now is very different from the other two. The maturity level is definitely not the same. I can’t get them to settle down most of the time and when I do, it isn’t for very long. They come from a different place than the other two classes. They come from more mixed families and seem less connected than the previous classes. I can’t treat them like I did the others because frankly, I am not sure if they have the same potential. I hope I am wrong, but yesterday was a complete mess.

The units of curriculum I am given are either too juvenile or above their heads. I need to find a compromise that engages them so they can retain the material we are using. The last unit we had- Hanukkah- was great. We were able to do activities together, word scrambles, and cross-word puzzles. We also colored in Thankgiving-hanukkah themed coloring pages thanks to Sheila Finer, which also was a good source of connecting gratitude with the holiday. It was a crazy two hours which ended with a not-so-great performance by my kids doing the Hanukkah Goblin play we did a few weeks earlier.

I tried starting the class off with talking about gratitude. None of the kids took it seriously. No one stopped joking long enough to hear me and I was getting frustrated within the first 5 minutes. I read a synopsis of the story of Hanukkah and some of the meaning behind the metaphors in the story. Crickets. I could hear crickets. We then moved on to the hanukkah themed word scramble.  This is where it got interesting. Half of these kids had no idea who the Maccabees were. Note: The Maccabees were a band of brothers who came up with a cool plan to overthrow the Powers of Oppression so the Jews could have their Temple back and pray in peace. They were like the Jewish A-Team without the van, thousands of years ago.

I couldn’t believe it. Have we become so assimilated that our children have no idea who our kick-ass Jews were? Or how our traditions came to be? I can’t imagine bringing my girls up without knowing the basics of our holidays- especially one like Hanukkah! I don’t know what to say about this. Why bother sending your child to me if you aren’t going to reinforce this at home? Do you realize your child isn’t as knowledgable about these things as you were at that age? Have you no shame???

Ok that was just a rant because it is frustrating for me as both a Jew and a teacher, to teach things that these kids should have known in first grade. I am praying that they were just being difficult and that this improves over the year. I do love what they come out with when they apply themselves. That is a blessing and brings me back every sunday. 

There are a few students who I know will do well in the class and get that connection I am trying to provide to them. Grades 5 and 6 are tricky because this is the time when the “Am I done With Sunday School Yet?” attitude starts. I see my biggest priority- my main job- is to provide these kids with a connection to Judiasm that they can relate to. Otherwise, they won’t obtain a single fact I am giving them. They won’t care about how much our people struggled to be where we are today. They won’t understand how important it is to have faith and believe in something that can carry you during tough times. Yes- in spite of how angry I was at God for giving me a child that has such a severe condition, I have learned that I was blessed in spite of that anger. I want to pass that on to these children. 

One of my former students went from hating Sunday school to becoming involved with Temple Youth. She even spent a high school semester in Israel. ISRAEL! Seriously? I am not taking credit for that by any means, but I will say that I am glad I was part of her education that helped her gravitate towards that path. She is an amazing young woman and I was thrilled that she loved her experience so much. 

I get a lot out of teaching these kids. As frustrated as I am at the moment, I am still grateful for the opportunities I know lie ahead. They did great with the Hanukkah play  we performed at a Friday night service. They showed me that they can rise to the occasion when provided the right outlet. I think I got more out of that experience than they did. 

Today I am glad we have a few weeks off so I can regroup from the last Class of Mayhem. It’s not fair to the kids when I get frazzled because one of them feels like being a jerk. Yes, I am being that politically incorrect, because frankly, he did feel like it. I won’t let that get to me. I want to come back and raise the bar a little, and see what happens. I’ll let you know if it works, or if I am standing on a cliff somewhere. Either way, I know this experience is good for me.

 

Day 16 of 30 Days of Gratitude: I am grateful for my girls

February 14, 1996 is the day I found out I was going to be a mother. I was 24, unmarried, and just started my career at the Rutland Herald. I became sick almost immediately and had no idea what to expect. I bought books, went to classes and my boss at the time who was pregnant herself, was very helpful. It was pretty overwhelming at times since we didn’t have very much at all and I was far away from my family. 

On October 17, Elizabeth was born after 7 1/2 hours of labor. She was beautiful. My family was coming up to visit the next day so I made the mistake of leaving the hospital a day early. I was beyond exhausted by the time they left! I couldn’t wait to share her with them and I’ll never forget those first moment when my mom and grandparents held her. After the first few days she became pretty colicky and cried for hours at a time at night. The night before I went back to work she slept through the night for the first time. I praised God all day.

We moved back to Plymouth after her first birthday. I knew I could get a better job in graphics after seeing the Boston Sunday Globe’s  help wanted section. I ended up getting a job at Community Newspaper Company on the Cape, and we started our life back in Plymouth. Her father and I didn’t work out and eventually he made the difficult decision to move back to Vermont. 

I was a single mom for a long time. I went to as many school activities as I could, baked cupcakes for her birthday every year, and volunteered as often as I could. I loved it when I got my job in Boston because they allowed me more freedom to attend parent/teacher conferences and do what I needed to do for her. 

I loved it when she learned new skills such as  jumping in our backyard as a horse, drawing, and piano. Her laugh would make my day, and my favorite time of the day was when I would read her a bedtime story snuggled on her bed. When I found out I was expecting Adeline with Chris, I was over the moon. Another chance to enjoy those little moments. 

Adeline’s labor and delivery were the complete opposite of her sister. She took her time. She had to be evicted. She had a hard time nursing. She cried even more than her sister. I suffered post-partum and began wondering why did I do this to myself? Thank goodness when I went back to work and got back into a routine I was able to enjoy myself again. Addie proved to be a funny baby. She had a boisterous personality that she still has today. She adores her older sister, and followed her around the house. 

Adeline is very bright and is already recognizing words. She is the most like me out of the three. She is emotional, very distractible, but has an imagination like I have never seen. One of these days I am going to write down her sayings because half of the time I can hardly believe what I am hearing! She loves to run around and spend time with her cousins chasing each other around. Addie is an awesome helper in the kitchen, and I look forward to making more goodies with her for the holidays. I can’t imagine my life without her and when I think back to those first few weeks, it seems like such a small time period in comparison with how long it felt at the time. 

Isabelle’s impending arrival was also very different. We had been told she would need surgical intervention to live. It was hard to enjoy pregnancy after that. I was working at a conference at the Intercontinental Hotel when she decided to make her appearance. My manager at the time got me a cab and everyone wished me well as I went over to the Brigham while my husband made his way into town from Braintree. We tried to go the natural route but my body didn’t get that memo and we ended up having a c-section. The OB was so kind and apologetic, I didn’t mind that we ended up with a c-section because he made such an effort to help us have what we wanted. 

Isabelle has the most easy-going personality out of all my girls. She loves being around everyone, and enjoys just about everything. It’s almost like she knows how lucky we are and loves being here. I love watching her walk around the house and follow Addie around. Adeline is okay with it most of the time, but she certainly has her moments. My favorite is when Liz has BOTH girls following her around. Teenagers love that. 

Liz is a huge help with the girls and is a great big sister. I am so proud of her and am thrilled when I can get them all together for a picture. It’s very rare when that happens! 

All of my girls are named after some very special people in our lives. Elizabeth Marie is for my great-grandmother Elizabeth, and for Gordy’s grandmother Marion. Adeline Sara is for my beloved Nana Adeline, and Sara is for Chris’s grandmother. Isabelle Faith is for my dear grandfather Harry. His name was Israel but hardly anyone (if any) called him that. The ‘Faith’ is to remind me to have faith in spite of adversity. 

I am so blessed to have these amazing girls as my own. The only regret I have is I wish I had them a little closer in age, but it works out just the same. I used to tell Liz that I was the luckiest mommy in the world and I still feel that way today.ImageFami

Day 14 of 30 days of Gratitude: I am grateful for the Plymouth High Schools Marching Band

From my mother who was a drum majorette to my sister who played the clarinet, there has always been a connection in my family to the Plymouth High School marching band. By the time I was in high school, I no longer played an instrument. The flute only held my interest for a few months, and the piano…well…we won’t go there. One day a friend of mine suggested that we join colorguard. We would sell M&Ms and go to Disney. We could get glory jackets with ‘Plymouth-Carver’ on them. And we could be in parades. 

I was sold! Sure I couldn’t throw a rifle to save my life but I was sure I could learn. I ended up with a flag and something to do after school besides drama. We were quite the crew trying to do dropspins at the same time and failing. Miserably. I was told I needed to be at band camp that summer and found myself getting yelled at by a girl I was terrified to piss off. I managed to piss her off a lot, apparently. Lynn and I practiced and marched in the parades wearing royal blue shirts with white pants. White pants. I still can’t figure that one out. It is always a bad combination for me. 

Once I began learning the various tricks and routine, I fell in love with the whole band scene and for the first time really felt like I was part of something. I made friends, and became closer to ones I already was in classes with. There was a few groups I felt part of- the Woodwinds crew of Jen, Kristin, Andrea, and Kristen G and the drumline made up of Shari, Chris B and Jeff. In spite of the heinous uniforms which made absolutely NO SENSE to me at all (I mean, cowboy hats? Plymouth isn’t exactly close to Texas) I was so proud to be marching with my friends.  In those days we only had a few competitions (or maybe it was just one), and we didn’t practice every weekend like the kids do now. My daughter had a competition practically every weekend this fall. 

Tonight she got her letter and glory jacket. First thing I noticed was that they don’t print the town name on the back anymore.  They are blue with the PN on the front, name and graduation year on the sleeve. I remembered mine was a nice wool one with white caps on the shoulders and ‘Plymouth-Carver’ on the back. Vintage! Liz deserved every stitch on hers and then some. She began playing the flute at Nathaniel Morton, and I remember the day when she first held it in her hands and attempted to make a sound out of it. Currently, she plays the marimba, the flute and has played keyboards. She is the section leader for the front ensemble, aka ‘Pit’. This weekend marks her first Winter Percussion rehearsal. I can’t wait.

When each student was called to get their jacket, a parent would meet them in front, put it on them and have their picture taken with both band directors. Addie just happened to have to go ‘pees’ right when they were about to begin handing them out. Liz was called first. I missed it. I was so distraught my husband couldn’t speak to me for at least 5 minutes. I had been waiting for this for weeks! I loved band, I loved my jacket- how fitting it would have been for me to put hers on her? It took me almost an hour to walk through that disappointment and as I thought about my band life, I realized why I was so upset.

I wanted my second chance. You see, I was getting high at this point of my life. As ashamed as I am to admit it, I was definitely not sober when I received my jacket. It was awards night and as colorguard captain for Plymouth North, it was my responsibility to present awards to my teammates. Rather than think of poignant, thoughtful words to describe my friends, I chose the “Trying to be Funny” approach. It was awkward. People were really angry at me and I made a complete fool out of myself. I cringe when I think about it even now. The silence. The hurt expressions when I made a joke at someone’s expense. Losing track of what I was saying in front of PARENTS. It was just bad. 

Tonight we watched a video of the band’s last competition performance. It took place in Lawrence and they placed bronze. When the video began playing I felt tears welling up in my eyes as I heard Liz’s notes and watched kids that have shared many concerts performing together, move together in unison, on point. Practically flawless. Now, for those of you who were in band with me circa 1990, ‘flawless’ is not a word that would be anywhere near the phrase “Plymouth High Schools Band”. The colorguard was synchronized, the drumline strong and the movements were amazing. The kids kicked ass. Absolutely kicked ass. Words can’t express how proud I am of them. 

Liz’s first years in band were with a director named Mr. Leone. He was a hardass and scolded the kids when they didn’t practice. Called them ‘fishheads’. I loved him. I loved the music he brought out of them: Star Wars, Phantom of the Opera…I could hardly believe what I was hearing from these 5 and 6th graders. Now here they are as juniors and seniors. Incredible musicians with a love for band. You can see it when they march. They are pretty dead serious as they step in time down Sandwich street. They joke a lot, ALOT when they are waiting to step off but once they do….it’s on. 

The Parents’ Music Association talked about new uniforms tonight. Apparently, the uniforms they are wearing now are over 18 years old. The ones that were purchased when I was in band- the god awful blue and white, cowboy hat, gray sash, looks nothing like a Plymouth band should like uniform was only used for 6 years. 6 years. Wow. What a waste of money covered in lots of bad taste. The reason for the black uniforms they wear now is because of the two high schools. Can’t exactly have blue and white when the other colors are teal and black. Good thing, because those things were atrocious. Are you sensing a theme here? The good news is the Association is active and planning ahead. There is even talk of marching in the Macy’s Thanksgiving Day parade. The sky is the limit, and these kids are willing to meet the bar. 

So when I thought about how disappointed I was, I had to look hard at the reason why. I made it about me. About my failures as a teenager. My shame when one of my friends snapped at me for being wasted at a function. It sucked and I wanted to have those minutes back. They are gone, and that’s ok. Liz looked great in her jacket and I couldn’t be prouder of her. If you are in Plymouth for the parade next week, the Plymouth High Schools Band is opening for the drum corp at Memorial Hall. If you can, go take a listen. 

Day 13 of 30 Days of Gratitude: I am grateful for my fellow Heart Moms

One of the reasons why I started this blog to being with is because when I typed in ‘HLHS’ to Google, lots of stuff came up. Most of which wasn’t exactly positive. There was a reason why our cardiologist warned us and specifically said to me “No GOOGLE.” Yeah. Well, I had so many questions I didn’t know what else to do. What is HLHS? What causes it? Why did this happen to us? Was the medication I am on the cause of this? Did I bring this upon my family? What will she need to live? What are signs of doing well? What are the signs of her not doing well? How much time will we have? 

As you can see, I had thousands of questions – and no one to ask them. I wasn’t connected with Sisters-by-Heart yet, or Heart Mamas. So I began writing out how I was feeling and what the doctors were telling us. Eventually I did get connected with Sisters-by-Heart and began to exhale a little. Enough to enjoy the remainder of my pregnancy anyway. I learned about the Norwood, what we would need in the hospital and what questions to ask the surgeon. I joined Heart Mamas, and spent the last few months of my pregnancy leaning on other moms hope and faith. 

When I gave birth, one of these Heart Moms came to see me at Brigham and Women’s, so I could meet her son and see what life could be like. Her dad came with her and gave me additional support that I didn’t even realize I needed. I knew to push to have her extubated when I knew she was ready because these Mamas told me about oral aversions. I knew to ask about certain levels, what we could expect for recovery and knew ahead of time the fight I would have to be able to nurse her. 

I met with another heart mom while her daughter was recovering from her fenestration being closed. Her daughter who was running around in the playground outside the blood labs. She also gave me hope and companionship while we were inpatient. Another Heart Mom met me in the lobby with her son, and we spent time in the CICU together. Another Heart family shared their son with us, who ended up passing away the day we were discharged. 

These small moments, sharing the lovely world of CHDs with these incredible parents has been very rewarding. I have been fortunate enough to be part of some rewarding personal work, and these moments are no exception. Having coffee with Seraphina’s mom and commiserating about feeding issues such as will our kids ever gain an ounce? Walking the halls of 8 East trying to soothe an uncomfortable baby. Around and around we go. 

Recently I had to let go of the Heart Mamas page after getting to emotionally involved in some of the debates that were going on. Yeah, I had that much going on that other peoples’ shit was pissing me off! I knew I had to cut ties otherwise I would be driving myself and my family insane about anti-vaccinating, breast-feeding crazy people who were waiting in the bushes for the word ‘circumcision’ to pop up and then they would POUNCE. It was…ridiculous, really. I am glad I have connected with the moms who I respect, admire and feel like I can relate to. 

I am grateful for anyone who prays for our children,  for putting their fears out there and for sharing their life with CHDs with me. I know I don’t get along with everyone, nor do I agree with the decisions that people have made. I do know that when I post openly and ask for help, they are there for me in ways that others can’t be. They know what it feels like to hand over their child to a surgeon who was going to break open their chest, put them on ice and stop their hearts. They know how pure fear and adrenaline will keep you up all night holding that baby before surgery the next day. They know how it feels to give birth and not have a baby share your room. It still brings tears to my eyes when I think about looking across and seeing my husband with our daughter in the CICU from my window at Brigham. 

A woman who also worked where I worked had a son who needed open heart surgery his first weeks of life. She would check in with me at the office and lift my spirits just by saying hi. She took time out of her day and shared photos of her son with me so I could get an idea of what to expect. When I lost my job she was still there for me,  and still is part of Izzie’s cheering section. 

Heart mamas get it. I don’t feel judged when I post about overreacting in an ER. I usually get some really interesting stories from it! I am so grateful for these women who share their children with me and for helping me be a strong advocate for our Isabelle. 

Home is where your cake is

Last year I turned 40 at Boston Children’s hospital waiting for Isabelle to gain a few ounces. A few weeks earlier we had planned for a party to take place that weekend but when we had to be admitted due to Isabelle’s feeding issues we cancelled. I tried to keep my spirits up in spite of missing out on a milestone and was grateful that we weren’t inpatient for anything worse. The morning of my birthday I checked my phone and saw the happy birthday posts appear one by one on my Facebook page.
I can’t express what that felt like- to see so many well wishes while being at such an unpleasant place. My husband did a great job in helping me celebrate by taking me out to dinner and ice cream. Our awesome roommates gave me a card and a key chain, which I use all the time. It wasn’t all that bad. Everyone eventually made it home later that week.

This year, I am jobless but Isabelle is doing great. We went apple picking yesterday and the night before Chris took me out to an incredible restaurant for my type of meal. My contracts are good and steady even if the employment isn’t. I’m glad I am working somewhere even if it is for another three weeks.

Birthdays have always been weird to me. I like celebrating because hey- who doesn’t like cake? At the same time, it marks a painful occasion for someone out there I probably will never meet. Every year I think of her and what she went through that day to have me. And then I also think of what she went through when she had to give me away. I celebrate with my family because that day was a joyous one for them, when they received a phone call that I had arrived.

Patricia made quite a sacrifice for me. I always give thanks on my birthday to her. Tonight when I have cake with my loved ones I will keep her into heart because without her selflessness, I would not be here.

This year has taught us that birthdays are special. Isabelle got to celebrate one when I was so afraid she wouldn’t get the chance. They aren’t to be taken for granted and there were so many who didn’t get that chance. I was given a chance to have a good life with a good family. Can’t think of a better present than that!

A Promise

Today was the first day of Rosh Hashana, the Jewish New Year and it certainly went off with a bang. On my way to drop Isabelle off at her Nana’s, I turned too soon and caught my right rear tire on the brick wall that runs parallel down the driveway. The car jerked and I instantly knew I had either hit the wall or the curb. After viewing the blown tire and its gaping hole I hysterically called my husband.
I had plans. I was going to drop Izzie off, attend an open house at Addie’s preschool and then head to services for the holiday. My parents ended up picking Liz and I up, dropping me off at the school and I walked to services after the Open house. No big deal. I was happy that I was able make part of it considering.
Services for the holiday are really long. They can be up to 3 hours if the Rabbi isn’t paying attention and today was no exception. This was my first High Holy Day that I was going to be observing since Isabelle was born. Last year at this time we were in lock down. Thinking of how angry I was at God a year ago and in spite of that anger, what a miracle Isabelle has turned out to be made me well up unexpectedly. In spite of that, she is still here. With us. Wow.
The sermon today was about a promise and the environment. Don’t ask- I too felt that it was a stretch but I liked the promise piece so I am focusing on that. The Torah portions we go over during Rosh Hashanah are the story of Issac and his family. Basically, Abraham had two wives. Or was it a wife and a concubine who gave him a son. He had two women- one childless whom he was bound to, and the other who was a servant but a fertile one at that. His first wife was worried about a promise that was given to them about her sons future. She wanted him to kick the other woman to the curb. He did, and she wandered about with her boy until they were both dying of thirst. The second wife was scared that her promise that was given to her about her sons future wasn’t going to happen. Both mothers scared and having little faith even though the promises had been made by credible angels, acted out of desperation.
I thought about what we have been promised with Isabelle’s Fontan. If she makes it through the first surgery, the chances were higher she could get through the second. If she got through the second, than she can get through the third. After the Fontan is done, she will be ok and we could go for years without another surgery. She could have a normal life for a while. That is one promise. The other promise is science could come up with a better treatment than these surgeries. They are considered palliative – they are not a cure for HLHS. Who knows what advancements could come out in her lifetime? As I sat in the sanctuary of this beautiful church (that’s another story), I wondered if I could accept those promises and hope science could be where I need it to be. That would require faith. Here’s the thing- an angel didn’t pass the message on from God. The promise wasn’t followed by a burning bush or anything. It was given by a doctor in a white coat who saw many of these children on a daily basis. It’s scary to put all your faith eggs into one basket. If I am to have any kind of sanity, I have to accept them. A promise is a promise.