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It’s Not Contagious

I don’t have a lot of time to write today but something has been bothering me and I just want to get it out and move on. I can’t help but notice how many people have dropped off the face of the earth since Isabelle’s diagnosis March 5. People have told me that this would happen, that you never know who your friends are until something like a child born with a disability enters the picture. I’m sure I will turn many people off with this, but I need to put this out there. My daughter has a heart defect and it isn’t contagious. You aren’t going to catch it, or bring some misfortune unto your household by being around me. What you are doing is making a situation even more uncomfortable for me, and reminding me how painful this is by your loud absence. Some people even do the virtual ‘bob and weave’ thing when I contact them- “Oh, I’ve been meaning to call…how are you?” What they are really saying is “I don’t know what to say and this is really difficult for me to imagine so I can’t imagine what you are going through and it is too much to deal with so I’m sorry but I can’t be around you right now.” 

When I first got sober back in 1993, my sponsor told me “When in doubt, do nothing.” She told me this because I am impulsive by nature and had a lovely habit of putting myself in situations that always meant trouble. I try to think of this when people don’t react the way I want them to, I try to remember that other people just don’t know what to do. It’s judgmental of me, I know it is- and I am sure it is just another character defect that I will have the pleasure of working on for the rest of my life. What I can say is I may understand where it comes from, it doesn’t alleviate the sting of being avoided. It stings and still hurts the same.

My husband has a better attitude about people than I do, which is why I love him. Without his perspective, I would probably have no friends at all, no house and no minivan. Look, I get that it makes you sad for us- because it is! But it isn’t making things easier by keeping me at a distance. If anything, it just reminds me that it is true- that you don’t know who your friends are until a major life change happens. I guess all I can speak to is my own actions. Well, here is my promise to anyone who has a major change in their lives: Regardless of how uncomfortable a situation may be, I will not go anywhere because it isn’t about me, it’s about being there for you. That is what makes me happy as a person- when I can be there for someone and it makes a difference no matter how little.

I told a dear friend once that I would never leave her, that I would always be there for her. I failed on that promise and lost her March 29, 2000. I never forgot that because those moments of self-centered comfort I received by not being there for her cost me my best friend for life. A few minutes of discomfort in myself isn’t worth the pain of hurting someone, and that is what pushes me to call people I haven’t spoken to in ages, wave happily at people I haven’t seen in years and say hi to people I know who are having a hard time. I am certainly not a saint, and don’t always do the right thing when the opportunity presents itself. My point is, please think for a second that maybe a simple hello will go a long way and we don’t have to talk about it- if anything I would love a break from talking about Congenital Heart Disease! I won’t shatter into a million pieces if you ask me how I am. I will return the favor, I promise!

Oh- to all of the people who have been there this whole time, thank you! Your comments, donations and just asking how I am is appreciated all the more. Thank you!

 

Family, HLHS

My oldest daugh…

My oldest daughter, Elizabeth, graduated from Confirmation class last night and has begun her adult journey in Judiasm. She sang one of the blessings beautifully, and I watched with great pride eyes brimming with tears. As the service went on I thought about my own journey with Gd and how almost 25 years ago I stood from that very podium with my Confirmation Class. My experience was radically different and I had just come back home after a two week stint of observation about a suicide attempt. I felt awkward, and completely out of place but went through the motions anyway. My relationship with Gd really didn’t start until I got sober in 1993 when I realized that I wasn’t alone and there was something bigger than me that cared more about my life than I did. From that point, my religious education really took off and I could see Him working in my life through friends, family and circumstances. I felt a great connection and it enhanced my religious life. Until March 5, 2012.

It was on that day that we learned about Hypoplastic Left heart Syndrome, and that our baby girl’s life depended on whether or not she could tolerate the major surgery that awaited her after birth. My first reaction when hearing the diagnosis was “What did I do to make this happen?” Although I know now that it was nothing I did, that doesn’t take away from the anger about the randomness of the situation. It wasn’t until I sat in the synagogue last night that I realized why I was so angry to Gd.

I sat in Shabbat services one night before March, and asked Gd to bless us with another healthy child and I would dedicate that child to Him. I had made that promise with Elizabeth and again with Adeline, so I naturally asked again with this one. This time I was not granted the grace He had given me previously. This time, we will have a child who will have to have at least three major surgeries before she is 3, possibly more. She will experience pain and suffering her first few weeks of life, and we will be able to provide very little comfort. This time, He answered me with an astounding “No.”

Right now, I am not seeing the gift that this may turn into down the road. Right now I am seeing a long, difficult road ahead full of fear and I am furious with Him. Absolutely furious. And it doesn’t make things better when I read other Heart Mama’s posts about praising Gd and may His hand guide the surgeons, etc. 99% of the time their Gd is Jesus so I feel a little out of place with that. My Gd isn’t Jesus, and we don’t have the promise of Heaven after we die to reunite us with our loved ones. I’m still not sure what we believe but I am on the fence about that one, which makes this whole situation more difficult. Gd seems to enjoy testing me, seeing how far I can be pushed so I can crumble at His feet. Or, He could have been busy the day Isabelle’s heart was being formed and couldn’t get to the phone. Either way, this has been a real struggle with me and I know that my relationship with Him needs to improve or I will have no chance.

Not sure where I was heading with this post. Maybe a little frustrated that every time I read another Mom’s post, it’s all about Jesus and I feel like I can’t comment or ask questions. Maybe it’s because for the first time since my own Confirmation years ago, I felt anger and bitterness while sitting in the synagogue. Either way, sitting in the meeting this morning reminded me that if I can’t find hope within myself, I need to go to where I know I will find it.

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Momentary lapses of panic…

I’m sitting in a meeting where I am supposed to be listening to a colleague discussing a better way to illustrate a process and instead, my mind is running towards August. It happens when Isabelle decides to be active and test out her boxing skills under my ribcage. I think to myself “Please be strong, stay strong and grow so when they take you away from me you will be able to pull through because if you don’t I don’t know if I can take it and I don’t want to go there so please stay strong.” I don’t mind that she kickboxes and does somersaults. She is with me now, for this moment and I relish every movement, regardless of whether it causes me to inhale sharply or change my position. Isabelle is with me right now and as much as I hope she doesn’t have any other complications besides having half a heart, she may and I won’t know until she gets here. The most frustrating part of this which leads me down a panicked path is the fact that I won’t know the whole story until she is having her first echo on the outside. I want to believe that G-d won’t drop me on my ass but I didn’t expect to be in this situation either. My faith is tenuous at best and my relationship with Him isn’t where it should be, but knowing that we are living near the best hospital in the world for this condition provides me with enough hope not to disregard Gd altogether. 

Most of the time, lately, I have been ok. I haven’t been stricken with panic so badly that I can’t breathe, or that I wonder if I made the right decision bringing her into this world that will cut her open and bring her pain for the first few weeks. Most of the time I just get through the day and do my best to remain hopeful in spite of what I read on message boards. But then there are moments, like today when I think “Please be strong so you won’t be taken from me.” I wipe away the tears, take a deep breathe and take another step forward. 

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Finding hope through new connections

On April 7 my family and I participated in a walk to support funding for congenital heart disease. We met people who had single-ventricle defects or had children with various defects and signed up with the Children’s Heart Foundation. My parents, husband and myself raised over $1500 in honor of Isabelle. It was a small event, but the action of fund-raising for something that could help Izzie gave me hope. Prior to the walk, I stumbled upon the website for an organization called Sisters-by-Heart and  found women just like me, diagnosed either prenatally or after birth with Hypoplastic Left Heart Syndrome. These new connections helped me accept that it’s okay to have mixed feelings about this pregnancy, that being positive sometimes can just be too hard, and how to get through those moments of sheer panic. It’s hard to describe to someone how it feels to go from just wanting to know the sex of the baby to hearing that your child will die without treatment. For weeks I couldn’t bring myself to think of a name. I made the mistake of trying to learn about HLHS in all the wrong places. Finally I found Sisters-by-Heart and received an email from a woman who put all of my anxiety, sadness, disappointment and fear into words. We received a beautiful care package from SBH,  full of things we will need for those first few days after surgery. I became connected to two more groups on Facebook, Families of Children’s Hospital Boston and Heart Mamas. I learned about the different surgeons and what questions to ask the cardiologist at the next visit. Through those connections, I was able to empower myself to keep moving forward in spite of my tendency to look on the dark side of things. My latest connection, Linked by Heart, will allow us to meet other families who are in our area. I am no longer consumed by the diagnosis.

This has not been easy, not by a long shot. I have a teenager who’s main purpose seems to be testing my sanity. I have a two-year old who will find the most dangerous item in the house and think it’s a great idea to play with it. My husband and I work full time and just moved into a new home two months ago. I think of how our children will handle us not being home for the first few weeks. I worry about my job and what if I am out for longer than I anticipated. And of course, the unspoken thought of what if we do all of this and it doesn’t end well in spite of our efforts. It is when those thoughts creep in that I have to think about the other moms who felt the same way and get inspiration from them.

Not every baby with HLHS will have the same complications or issues, and that has allowed me to step back from the obsession of finding every possible worst-case-scenerio. Right now I am in a good place, and it can change at anytime but the difference this time is I know who I can reach out to that can help me out of it.