Extraordinary measures for an Extraordinary Life

It takes a certain type of woman to make a heart mom. It doesn’t always come naturally. Some slowly evolve into the advocates their child needs while others jump in with both feet. Some have a hard time accepting that their lives have changed while others seem to go with the flow because…well…what else are you going to do?

I am a combination of a few of these characteristics. In the beginning I had a very hard time accepting that our child was not going to be the healthy one I asked for. The next stage for me was an insatiable desire to learn everything I could about congenital heart diseases, hypoplastic left heart syndrome, and surgical options. I became connected to other moms and learned what questions to ask, what surgeons to ask for and what to bring to the hospital.

Chris and I have always been vigilant with Isabelle’s care. During interstate we were inpatient at least 7 times and tried our best to give her the best chance. I was a total bitch when I had to be and sometimes when I didn’t have to be. I have her cardiologist on my ‘favorites’ phone list. Her surgeon is on my email contacts list. He responds within a few days to my inquiries. Her pediatrician is open with communicating to her team her and has always made sure she was on the same page as Boston. Extraordinary.

There are some downsides however to being a heart mom. You become a germaphobe in a way that is hard to justify to others. Viruses that send children to the ER are your worst nightmare. Tonight a little girl was in the family waiting area on the Cardiac Intensive Care Unit with a wet cough. I stood at one of the tables horrified that her family member had her there. She then went over to the water fountain and put her unwashed hands all over the ice machine and water dispenser. All over it. Fuming, I went to the front desk and asked what to do about another family being sick in the area. The admin wasn’t happy and sent a cleaning crew to the family room. Tonight we went to have pizza in the family room and the child was still there. Needless to say we ate somewhere else.

You have to be prepared to see your child in the most helpless state possible. You have to prepare to see them hooked up to machines, see their blood run through tubes that painfully exit their bodies and let other people poke and prod them. People tell me how strong I am because of what we have gone through. I’m not sure if it’s strength or plain shock at the sight of seeing your sweet child in pain and not being able to do a damn thing to comfort them.

But the worst moments are the ones where you feel like grabbing the tubes and taking them out yourself. The moments when your two year old looks at you with pain in their eyes, silently screaming. The ones when every fiber of your being wants to pick that child up and soothe them but you can’t. All you can do is sing softly to them, rub their heads, hold their hands and keep your eyes locked onto theirs as if you were holding them with your gaze. Those moments are the ones that separate us heart parents from the rest of the world.

Please don’t complain or stress to me about your child’s shots. Be grateful that is all they need to have. Please don’t complain about having to keep your child home from school because of a minor cold. It’s not minor to us. Please don’t assume we ingested something so horribly wrong out children were formed this way- as if we heart moms are responsible for our children’s suffering. And if you do have the good fortune of a mistake on an echo meaning your child doesn’t have HLHS, don’t go on an HLHS page and say that God was on your side. I guess He wasn’t on ours then? To all of us who prayed for healthy children comments like that are a slap in the face.

No one wants to be a heart mom or dad but I am convinced that some people are just not cut out for it. We are extraordinary people who are willing to go to any lengths to get the best care for our children. We do the footwork to have them transferred even though it is very overwhelming to move to a city you have never been to or get the paper work lined up to make it happen. We research the various medical centers to see what the outcomes are, and if the center doesn’t comply, we demand transparency to make informed decisions for our children. We take matters into our own hands and drive to another hospital hundreds of miles away with oxygen so that child could have a chance instead of hospice. We hand our children over to doctors with the possibility they may not return to us or that we may never feel their kisses on our faces.

This is what my life has become and here we are at the last stage of her repair. I am very grateful for the support I have received from fellow mamas here, across the country and around the world who have sent prayers and words of encouragement. We get excited as a community when our children do well, and we cry together when they don’t. We band together when someone wants to transfer their child to a different center and do what we can to make their journey a little easier. We sell t shirts for each other’s children to help raise funds for our friends so they can have one less thing to worry about.

This was not a club I wanted to join but I am sure glad I made it in. Membership is a heavy price but I didn’t have a choice on paying it.

Izzie is doing well tonight. She is breaking a little more comfortably and we should be on the floor tomorrow. I am so proud of how much she has been able to get through!

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Stage 3 – Third Time’s the Charm

Having a child with a complex heart defect is pretty challenging. The first being accepting that something went wrong in those first 8 weeks that caused the defect and doing your best not to second guess everything you ate while you were pregnant. The second is when you hear about the proposed solution and the surgeries your child will need to go through in order to live. The third challenge is an ongoing effort to learn how to navigate this new world of hospitals, doctors, nurses, health insurance representatives and pharmacies without losing your mind. I am afraid I haven’t done a great job with any of the challenges, but I can say that I did my best to meet them and never expected this experience to change my life the way that it has.

I never expected to be so well versed in medical terminology. Of course I can’t think of any right now but I sometimes people ask me if I am a nurse which I find hilarious. I am not a nurse, just a heart mom.
I never expected to be able to live in the moment. My mind is always racing, always somewhere else and never where my feet are. Having a sick child with an unpredictable life span really makes you appreciate every moment you have with them because you never know when situations change.

Most importantly, I never, ever expected to be so supported by my family and friends over the past 2 1/2 years like we have been. Today I have received an outpouring of kind messages, prayers, texts, and Facebook posts all with encouragement. I don’t have enough words to thank everyone. It is truly amazing to hear from people from my life starting from elementary school to college, colleagues, friends and fellow heart families. I needed these messages of comfort this morning. I wasn’t emotionally prepared enough and looking at all of the messages of hope is allowing me to get through this.

This morning was very difficult. She was frightened. She knew something was going on and she wasn’t liking it at all. Izzie had a a hard time with the medicine and after getting the dose proceeded to vomit profusely in my arms. Tears coming down her face the whole time. She finally calmed down after the medicine began to kick in and after a few hugs and kisses, the nurses and anesthesiologist took her back. This time truly was the hardest as we watched them take her down the hallway.

The fontan is the final stage of the three staged repair. Dr. Emani plans on doing a lateral tunnel approach, meaning he is creating a tunnel through her heart using her tissue and a few scraps of paper. No, I really am not sure what the other material is but that is what it sounded like when he was explaining it to us. This new circulation will allow fresh oxygenated blood to her body instead of the mixed blood she has been living with. Her oxygen saturations have always been good. We have been very fortunate in how well she has been doing overall and I know she is going to run circles around us in no time. I know she needs this in order to stay the course of doing awesome. My fears are purely selfish ones. How am I going to handle seeing her wake up while intubated? How am I going to deal with her pain? Will the hospital throw me out as every character defect I have decided to make an appearance?

I have faith that her surgeon will do an incredible job. I know she is going to be fine. Well….kind of. Most importantly I know that no matter what the outcome is- I have so many people holding me up right now and it doesn’t get better than that.

6 Days and Counting

Tuesday is looming over in the distance like a lone dark cloud on a sunny day. Izzie is blissfully unaware that 6 days from now she will be on an operating table with her chest split open and her body on ice. She has no idea that they are going to stop her heart and put her on bypass so they can do the final repair of her Fontan. She does not know that this will hopefully be her last surgery for a long time, or even that there is still a possibility of a future transplant when she gets older. She doesn’t even know her heart isn’t like everyone else’s. All she knows is that the Backyardigans are awesome and that Dora needs her to say “Swiper no Swiping!”

I know other parents have tried to prepare their child for surgery by talking about it, reading stories about the hospital and explaining what is going to happen. With a two year old it is really hard to explain the concept of what is going to happen since I barely understand what Dr. Emani is planning on doing. To be honest I am very worried as to how she is going to deal with being poked and prodded again. She has made the connection of white coat=owie. I don’t know how to abate those fears and am hoping I get some answers today.

Her upcoming surgery affects all of us and I am also worried about how to is going to affect her sister Adeline. Liz I can talk to and she is pretty good about telling me things (most of the time). Addie has already said she wants to see Izzie every day. She doesn’t like that idea that she won’t wake up to her sister every day for a little while. I am so grateful she has no idea what is about to happen otherwise I would have a very worried four year old on my hands. All she knows is Izzie is going to be at the hospital because she needs her heart fixed. She knows a healthy person has four chambers while Izzie only has about 2 1/2. Chris and I have made a big effort to make Addie s secure as possible since we both are going to be back and forth to the hospital and she will be with family a lot.

Last night I did a little housecleaning. I took out the bags I will need for the hospital. I also sat down and wrote out a personal inventory of what has been going on the last two years. I can’t believe I finished it in one night but I was able to be honest and get out a lot of junk that has been floating around inside. I woke up feeling much better than I have in a long time and am so grateful I was able to take care of myself in spite of the focus being on the girls.

I know how fortunate we are that Isabelle is doing as well as she has been doing. I know that there are many children who still struggle post-Fontan. I haven’t been able to get myself to check Facebook this morning because I am afraid of what I will see today but I care about my fellow heart mama friends who are at their children’s bedsides sick with worry. I will check in a few minutes. But for now, I wanted to sort through my anxiety of dealing with Izzie’s reaction to walking through that revolving door. I know we have many people praying for us and for that I am so grateful. I don’t know how I would be able to get through anything that is going on in my life if it wasn’t for my family and friends. Thankfully today all I have to do is show up at my job, do what is asked and see my girls tonight. Oh- and bake cookies for snack for my home group. I don’t have to get a parent badge, hold her arms while they try to get blood, listening to her crying in my ear and watch the tears roll down her face. I can just enjoy the day that I have.

6 Days and Counting

Tuesday is looming over in the distance like a lone dark cloud on a sunny day. Izzie is blissfully unaware that 6 days from now she will be on an operating table with her chest split open and her body on ice. She has no idea that they are going to stop her heart and put her on bypass so they can do the final repair of her Fontan. She does not know that this will hopefully be her last surgery for a long time, or even that there is still a possibility of a future transplant when she gets older. She doesn’t even know her heart isn’t like everyone else’s. All she knows is that the Backyardigans are awesome and that Dora needs her to say “Swiper no Swiping!”

I know other parents have tried to prepare their child for surgery by talking about it, reading stories about the hospital and explaining what is going to happen. With a two year old it is really hard to explain the concept of what is going to happen since I barely understand what Dr. Emani is planning on doing. To be honest I am very worried as to how she is going to deal with being poked and prodded again. She has made the connection of white coat=owie. I don’t know how to abate those fears and am hoping I get some answers today.

Her upcoming surgery affects all of us and I am also worried about how to is going to affect her sister Adeline. Liz I can talk to and she is pretty good about telling me things (most of the time). Addie has already said she wants to see Izzie every day. She doesn’t like that idea that she won’t wake up to her sister every day for a little while. I am so grateful she has no idea what is about to happen otherwise I would have a very worried four year old on my hands. All she knows is Izzie is going to be at the hospital because she needs her heart fixed. She knows a healthy person has four chambers while Izzie only has about 2 1/2. Chris and I have made a big effort to make Addie s secure as possible since we both are going to be back and forth to the hospital and she will be with family a lot.

Last night I did a little housecleaning. I took out the bags I will need for the hospital. I also sat down and wrote out a personal inventory of what has been going on the last two years. I can’t believe I finished it in one night but I was able to be honest and get out a lot of junk that has been floating around inside. I woke up feeling much better than I have in a long time and am so grateful I was able to take care of myself in spite of the focus being on the girls.

I know how fortunate we are that Isabelle is doing as well as she has been doing. I know that there are many children who still struggle post-Fontan. I haven’t been able to get myself to check Facebook this morning because I am afraid of what I will see today but I care about my fellow heart mama friends who are at their children’s bedsides sick with worry. I will check in a few minutes. But for now, I wanted to sort through my anxiety of dealing with Izzie’s reaction to walking through that revolving door. I know we have many people praying for us and for that I am so grateful. I don’t know how I would be able to get through anything that is going on in my life if it wasn’t for my family and friends. Thankfully today all I have to do is show up at my job, do what is asked and see my girls tonight. Oh- and bake cookies for snack for my home group. I don’t have to get a parent badge, hold her arms while they try to get blood, listening to her crying in my ear and watch the tears roll down her face. I can just enjoy the day that I have.

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.

Second Chance

Fourteen years ago today I was blessed with a second chance. After having seven years of not-so-great sobriety I picked up a drink after my dearest friend committed suicide. The foundation that I thought was strong enough to hold me crumbled beneath my feet and suddenly my options were to drink or to drink. Prior to her death I was slowly cutting back on meetings and moving away from the friends I had met in sobriety.

The night before I made the decision to come back was not very exciting. It was the Saturday night earlier that had been disastrous and since then I was on the fence as to whether I could manage my drinking or not. That decision was made when I began to panic that there wasn’t any more vodka left. I had enough for one screwdriver and I knew by how my body felt that it wasn’t going to be nearly enough. My daughter who was three at the time, was sleeping in her room and I couldn’t go to the store to get more. Never mind the fact that I had a case of beer in the fridge, a full bottle of rum and a full bottle of tequila. What was I going to do without vodka?
I had been sober long enough to see what was happening and I knew that my little ‘vacation’ from sobriety was over. The next day I was let go from my job and I went home in tears not having a clue as to what I was going to do next. I went through the group phone list I had at the time and after calling at least 25 people (no exaggeration, big group) I reached an old timer named Smitty. I had known Smitty ever since I first joined the Airport group in 1993, and he knew I hadn’t been around for a while. After making a few jokes he walked me through dumping everything I had. His wife Sally picked me up that night and took me to the Jordan group. Our group had a commitment there and for the first time I had to decline speaking because I didn’t even have 24 hours.
That Friday I walked in front of people who helped me 7 years earlier to pick up my white 24 hour chip. I remember the look on the guy’s face who was handing out chips that night of complete surprise. Once again I had to start from the beginning. The cravings almost drove me insane, my sponsor at the time fired me because she felt that she didn’t do a good enough job with me and I had to find ways to get back to meetings with a small child. Night after night I sat in my chair holding on with both hands to keep myself from running out. It was humiliating. Everything I swore would never happen to me happened. My career in graphics was over. I was unemployable. My mother was contemplating taking my daughter for a while so I could get my head together. I had cravings that humbled me and had me scared to drive around alone. Alcohol kicked the shit out of me and the arrogance I had months earlier vanished.

Today here I am with twice the amount of years that I had lost and once again I am starting over. My emotional state has been all over the place just like it was when I first got sober again. People are angry with me just like before only this time i don’t have alcohol to blame for my actions. It was suggested to me to do a mini inventory to clean out some of the junk that is festering inside and after reviewing a few of the questions I knew this was going to be my hardest one yet. I will be holding myself accountable for the decisions I made and it is going to be almost impossible. But I need to do it. I need to clean house from the inside out so I can be happy. After all, a wise man once told me that happiness is the by product of right living. I want to live the way God intended me to.
My girls have been away with their dad on vacation this week. It has been the most excruciatingly painful week I have had yet. And I know that this is something people are hoping for- me not having them and it crushes me. I have cried every day, I have been looking at my phone constantly to see if any new pictures from the beach were sent. My ears miss the sound of their voices and giggles. My arms miss hugging them. Even now as I write this I am tearing up. It hurts to not have them with me and so this week has been challenging to say the least.
But here I am, sober another 24 hours and for another year. Thinking back to the moments I had clinging to my chair with my head down in humiliation, I can say that in spite of the pain I have right now, it beats looking at the floor in shame. I am not withdrawing today. I woke up knowing what I did the night before, which was making lemon squares for my meeting. I am going to walk in front of people who i have grown to love and accept my 14 year medallion with no shame. Huge difference I would say. I am so grateful to everyone who has helped me this year and years past, especially my first sponsor Becky who taught me how to walk away from the drink not towards it.

Blessings of Life

I took a few minutes to view the movie I made for one of our fundraisers a year ago. We have come so far in one year I don’t know where to start. Isabelle is doing incredibly well and acts more like a typical toddler every day. Her delight in recognizing various objects around is contagious. “The MOOOON!” She yells and points to the sky. I will never get tired of hearing her big little voice. She can point out every object in the room and it won’t get old. She is thriving in a way I never thought possible. I never thought I would see her climb the stairs with such vigor or a ladder on her swing set over and over again. I never imagined her running, hitting a ball with a bat, or dancing to the Backyardigans theme song in the living room.

When I was pregnant with Izzie I was in a constant state of fear. The “What Ifs” plagued me throughout the day and I did everything I could to apply the principals of my recovery to the situation. Staying in the day, staying in the moment. Being where my feet were. Looking down and making sure I was where my feet were. I stopped going to the meetings that helped me in the past. I stopped hearing answers to my problem. I began to try to deal with this on my own. I severed my spiritual connection  the minute I found out about her heart. My thoughts would go back to the night I sat in a synagogue and asked for a healthy baby. Tears would flood my eyes as I thought we were given one that may not make it to their first birthday.

Once again, the Universe has decided to prove me wrong again. Not only did she make it to her first birthday, but now she has made it to her second. Two years she has been in our family. We have enjoy another year of smiles, joy, hugs and milestones. We have experienced heartache, pain and loss this year. We had a fundraiser that went beyond my wildest dreams and raised over $13,000 for Boston Children’s. People came out of the woodwork to support us and Izzie. It was an incredible experience and one I hope to have again. Only maybe this time, without the police coming.

If you told me the blessings I would receive from having a baby with such a severe heart condition that surgery would be essential to save her life, I wouldn’t have believed you. Never in a million years would I ever think that I would consider HLHS a blessing. It kills hundreds of babies a year. It devastates families, and robs them of their beautiful toddlers and children. It puts them through such suffering you wonder how much more any of you can take.

It also brings families together. It has taught me to enjoy every moment with my girls and to take steps to ensure that I can enjoy every moment with them. It has forced me to take care of myself and my recovery. It has given us a child whose joy for life is so contagious you can’t help but smile when she is in your arms or presence. I have learned to give meds, O2 saturation levels and surgical procedures that people sometimes mistake me for a nurse. It has given me strength I had no idea existed within me. It has allowed me to walk through situations I never could have imagined before. It has given me a level of empathy I feel blessed to have, and I love being there for my fellow Heart moms out there in the Heartland. It has given me friends I have never met, and some I met for the first time picking them up at Logan Airport. It has given me opportunities for service- such as passing along my experience with different procedures that I can share with new HLHS families.

I have gotten so much from Isabelle these past two years I can’t fit it all on one post. HLHS has robbed her of a half a heart, but it has given so much in return. Not a fair trade by any means- I would much rather her have four chambers than to have her undergo three open heart surgeries any day. It is not a diagnosis anyone wants to have or hear. At the same time, I consider myself fortunate for the blessings it unknowingly bestowed upon me. She truly is a blessing in every sense of the word.