When Being Proven Wrong is a Good Thing

It has been a while since I have written anything substantial other than a few rants here and there. Time has gotten away from me. Between the fundraiser and this new job I am trying to land, I have been straight-out, too busy to acknowledge peoples’ birthdays on Facebook kind of busy. That’s pretty busy. Izzie is doing really well and her echo showed no obvious changes. I say obvious since echoes tend not to reveal collaterals which I am sure she must have by now. Considering how active she has become, I wouldn’t be surprised if she had a whole new set of arteries growing in there. She is doing great. We couldn’t be in a better position going into the Fontan at this point. She is almost caught up with her developmental delays and is talking quite a bit. One thing she hasn’t learned is how to slow down.

I’m torn on whether I should teach her. If I teach her to slow down, will that begin to hinder this amazing spirit that she possesses or will it help keep her healthy physically? If I ask her to stop and take a breath, will she learn on her own the feeling of needing to rest or will she get resentful that I am keeping her from pushing forward? I don’t really know the answers right now but I do know that she  is showing me on a daily basis that she can do things I didn’t know she could. For example, she can climb the ladder on the swing set that leads to the slide. She did it more than 20 times yesterday. Everytime she came down the slide she would laugh, clap and then go right back over to the first step. When I was trying to pay attention to Addie she would be halfway up already with no one behind her to make sure she wouldn’t fall. As she reached the middle, I could hear the huffing and puffing start. Didn’t stop her from reaching or climbing the last two steps. When she reached the top she would turn around, smile at me, say something I couldn’t understand or exclaim “ta-dah!” while breathing fast. Without missing a beat she sat down at the top of the slide and wired for one of us to hold her hand as she went down. And then the cycle would start all over again.

If you asked me earlier in the day if she could climb that I would have said no. I would have said, she isn’t strong enough to get up there. She is too little. Or something along those lines. It never occurred to me that I am placing limits on her instead of seeing if she could climb up herself. Izzie proved to me that she can reach higher expectations than I set for her. She showed me that maybe I shouldn’t assume that her heart can’t handle every day activities. At the same time, 20 times was a bit too much for her and she ended up throwing up a little lunch. Oh well. She made her point. Please don’t set limits for me, Mom, because I can and will surprise you.

Which brings me to the subject of this new job I am trying to land. For the past 5 weeks I have been at a financial firm in Boston trying to impress then with my design skills. The position itself is more than just design. It also is about creating compelling content that excites people about the services the firm has to offer. I would be the driver of that content. I was told a few weeks back that this past Friday would be a debrief on my performance at said firm, and the decision would be made to either hire me, or have me stay a little while longer to make sure I am a good fit. The meeting was suppose to be a half hour. One hour and a half later, the meeting broke and I was called into my manager’s office. She told me that I am a great designer. She told me that I proved that beyond a doubt I have the design chops they need for their pieces. What I hadn’t shown was a passion for their content. The concern is whether or not I can dig into their processes and ideas, internalize them, and create successful marketing pieces for them. Will I be excited enough to want to stay after six months or a year? I was told it was a risk she was willing to take, but only if I could be honest with myself about whether this job will be enough. 

I didn’t know what to say. I have never been accused of not being passionate enough about my work- as a matter of fact, I have been accused of being TOO passionate about what I do. What the heck is she talking about? I was so stunned I knew whatever I said wouldn’t appear genuine and I think she knew that too so my assignment over the weekend was to think about whether this type of work would be something that excited me. 

Honestly, I am not a finance girl. I don’t understand finance, nor do I understand a lot about investments. What I do understand is other peoples’ excitement and enthusiasm. I understand that I would need to learn a lot and that excites me. I understand that I would become a resource for other people and that excites me. What doesn’t excite me are numbers. I don’t understand them. My brain has a hard time processing them. Just ask my former math tutor. I think I failed Algebra three times in my scholastic career. The other concern I have is when I don’t understand something, my ADD brain speeds up to skim over material in a desperate attempt to understand it. I have to make a conscious effort to slow it down and re-read many times so I can figure it out. There isn’t enough medication in the world to slow it down when I am trying to figure something out. I offered to read a basic high level brochure on Endowments. I have re-read it at least 5 times already. But I won’t stop until I figure it out. Figuring out complicating processes excites me because it tells me that I am smarter than I give myself credit for. It is an accomplishment. And who wouldn’t get excited over that?

When I was at Eaton Vance, the CEO along with another manager was putting materials together about a new product that would revolutionize the finance industry. It was an extremely complicated process and I had absolutely no idea what any of it meant. My job was to help create materials that would support their argument to the Securities Exchange Commission on how amazing this new product would be. I didn’t understand a single word of it. What I did understand was their excitement. I understood what was at stake  and knew I had to deliver something that was easy to figure out. I asked my colleague a lot of questions and had a few informal conversations which gave me the content I needed to create the materials. It turned out to be a simple explanation on how this product worked, and got them another meeting with the SEC. It put them on the road to getting the product approved. And I still am not 100% sure on how it works. 

Without realizing it, my manager put a limit on me. She felt that I didn’t show enough curiosity to give people confidence to hire me. I think that 5 weeks isn’t enough time for me to change gears from being the vehicle for content to actually driving the content. It was never a level playing field to begin with. The unfairness of the situation did something I don’t think she or the others expected. It lit a fire of “You want to see excitement? I’ll show you excitement! I’ll show you how passionate I can be!”. I’m glad that she was honest with me, and am looking forward to walking into her office on Monday morning and saying “Bring it.” But first, I have to read this brochure one more time. 

 

 

 

Echos of Denial

So here we are with 2 days until the fundraiser and one day before Isabelle’s sedated echo. I have been pretty preoccupied with so many different things- people, work and the fundraiser that I haven’t thought about our appointment on Friday. It’s going to be a rough one. We have to have her abstain from milk after 2am, and then she can have juice until 6. Awesome. Then we have to keep her awake so the chloral hydrate will be effective. The whole process is pretty overwhelming in itself. Anyone who has a toddler knows that if anything sets them off, it’s being hungry AND tired.
I remember our first echo after her initial diagnosis at 17 weeks and praying there was some mistake. Maybe the left side would miraculously grow and we can all laugh and thank God this was a terrible mistake. But that isn’t what happened. It took forever for Dr. Levine to find her aortic arch. Her left side hadn’t grown at all. It was all the same and nothing had changed.
Going into this appointment tomorrow I am praying nothing has changed. I am praying there is no tricuspid regurg, any surprises. I pray her ‘squeeze’ remains good and that her function remains good. I have learned by watching others that there are always surprised lurking inside like ticking time bombs we don’t know are there. It’s scary and I didn’t know I was scared until I forced myself to think about it just now.
Please let everything be the same because this is hard enough as it is. Listening to her try to breathe after chasing Addie for a few minutes sucks. Seeing her lips turn purple from having ice cream because she gets cold faster gets old. And after witnessing a fellow heart mom lose her child after he had a transplant reminds me that once again there is no cure for what she has. Not even a transplant will be enough to feel safe. 75% of HLHS children make it to their 5th birthday. I hope to breathe a little easier by then.
Just another moment where I realize that as lucky as we have been, there are no guarantees in the heart land. Each moment is precious. Every giggle, smile and snuggle.

Preparations

In a few weeks, we are having our big night celebrating Boston Children’s Hospital, Isabelle and our amazing runners. Our runners are preparing for the marathon with their training and disciplined mileage. This event is requiring lots of preparation which is being expedited by some incredible family and friends. There are many kinds of preparations I participate in daily. From packing my gym bag, getting the kids ready for the day, or preparing for a presentation, I am in a constant state of in between. That is a good thing. 

Tonight, a family is preparing to bury their niece, daughter, granddaughter and cousin. Another senseless victim of narcotics she succumbed on saturday night to an overdose. One of many that have plagued this town over the past few months. Tonight a mother is preparing for one more night without her son. 30 days later after he died when he should have been enjoying post-fontan life. All around me people are preparing themselves to walk through another difficult moment in their lives. 

And there is the preparation we are  starting as we slowly trudge towards open heart surgery number 3. Now I can see what is happening when she runs. I can see her lips turn purple at the drop of a hat or a few degrees. Her sister tries to get her to chase her around the rom and she can only make it around the coffee table. She doesn’t realize it’s because she has half a heart that doesn’t have the stamina to follow suit. I do though. I know I am looking at a toddler who is ready for this next step. And I am far from prepared mentally to hand her over once again. Oh I talk a good game, Dr. Emani rocks…we got this…but when I stop to think, my stomach twists into knots.

A few new developments since Izzie’s last surgery. She’s older. She panics when she sees a white coat. Or scrubs. She knows what they are and her fingers instantly grip my shirt in fear. She cries and looks to us to get her out of whatever situation we have her in. But the situations are to keep her safe, like the vaccines for RSV. Thanks to that vaccine we have been fortunate enough to fight off respiratory infections. She doesn’t know that it helped her she just knows that every time she sees Nurse Laura she gets hurt. Just like she won’t understand that we have to get her sleepy so we can see pictures of her heart, that the blood draws that will hurt her are so we can make sure she is ready for the surgery that will save her life. Surgery that will hurt. Chest tubes that will hurt. It all hurts and it hurts me to think about it.

I run in the morning not just so I can get back into shape but so I can feel for a few minutes (sometimes for longer) what it feels like to be Izzie. What it feels like to run and not be able to catch my breath. To have limitations. I run because I want to understand how she feels. And I run because I can. 

The overdose really gets me because we may lose our daughter to a physical anomaly that we never asked for. At the same time, no one asks to be a drug addict. No one wakes up and says “I think I will get drunk, yell at everyone and lose my job.” I woke up and thought “It will be different this time. I won’t make the same mistakes again.” And lo and behold- ia made the same mistakes. Any premature death feels senseless- whether it is from complications caused by a condition or self-inflicted. The result is still the same- a loss. And how do you prepare for that?

The Club No One Ever Wants to Join

When we were first told of Isabelle’s diagnosis exactly two years this week, I was filled with many different emotions. Anger, sadness, fear, and grief. Grief for the joyous pregnancy that I enjoyed up until that moment. Anger over God ignoring my request to bless us with a healthy child. Sadness that we may give birth to a child we would lose. Fear of what this diagnosis meant for us and our family. Open heart surgeries. Percentage of outcomes. Outfits she may never wear. Toys she may never play with.

Two years ago my world was shattered with four letters. HLHS. Today, I am in such a different place I wouldn’t have believed it if you showed it to me. Today I view Isabelle as a blessing to our lives. She is doing so well you can barely see the evidence of her CHD. I speak a language I didn’t know existed. I can participate in discussions about my daughter’s care and be her advocate. I am not intimidated by the letters “d” and “r”.  I have friends that I have never met but would send encouragement and support across the miles when I need it. And I like to think I do the same for them. My days are filled with moments, instead of labels like ‘good’ or ‘bad’. The God I was so angry at is now the one I rely on to help me get through those moments of panic that can still strike without warning. I am at a point where I realize that losing that job I loved so much was truly a blessing that set me free from an unhealthy relationship.

My whole life I have always wanted to fit in. When I was young I wanted to fit in with my classmates and not be the unusual child I was. In high school I wanted the experience I saw my older sister having- lots of girlfriends, a boyfriend, a job and incredible wardrobe. In college, I wanted to be one of the hippies, the radio station crowd, and the fellow communication majors who seemed to have their shit together a whole heck of a lot more than me. I ended up joining a fellowship after one particular bad year and that was my first club membership that I wasn’t aiming for.

The day we were told our baby would need surgery in order to live, we were taken from a parenthood surrounded in normalcy, to another world we had no idea about. When another mother reached out to me at my workplace, I had tears running down my face because I had someone I could talk to about what we were about to face. Someone who knew what it was like to hand over a tiny baby to a surgeon and not know if  they would be able to hold them again. When Sisters by Heart sent us that care package full of things we would need in the hospital, my pregnancy went from dark to one full of hope. I was able to give her a name. I could daydream about first smiles, and little coos. Because of those connections, I was able to move forward and step into this new world of the Heart land.

I have had my struggles for sure. My life in the first unlikely fellowship I became part of taught me to reach out to people when I needed it. It also taught me the importance of passing on what was so freely given to me. Saturday I was given the gift of an extraordinary night out with my husband. We went to a fundraiser a fellow heart mom had put together to raise money for research on heart valves. In spite of the beautiful jeweled gown she wore and the glamourous atmosphere, she was so happy to see her fellow heart moms there to support her. As I sat listening to her speech sitting in between two incredible heart moms, I felt like I belonged. I fit in. I got my wish. It wasn’t how I wanted to come true, but what a blessing to finally have it. One of the emcees last night used the phrase “The club no one wanted to sign up for” to describe the Heart Land. Part of that is true. I wouldn’t have asked God to give me child whose future is uncertain regardless of percentages. But the tradeoff of being a part of a world that is full of such love and caring for one another is a blessing. We care about moments like when a surgeon has made the first incision, when the child has been put on ice, and when their heart starts beating on its own. We hold our breath alongside a family who could be miles away in another time zone. We get excited about first steps, ounces gained and first words.

Today we picked up a mom flying into Boston for the first time for a visit to Children’s with her little 20 month old girl. We went to Faneuil Hall and then met up with another mom whose son is in the CICU recovering from a very intense surgery to help make his heart more whole. Dinner at Bertucci’s with excellent company was a perfect way to end an incredible weekend. I am so grateful that in spite of those gut wrenching sobs that took place on that table two years ago, I can see the silver lining.

 

Picking up Sarah V and Miss Cecelia

Picking up Sarah V and Miss Cecelia

 

 

Good friends, food and family

Good friends, food and family

 

Frustration Overload

Tch-bostonThis week has been challenging for many, not just myself or our family. Some people have had to hand over their loved ones for surgery. Others continue to struggle in search of employment. Many have struggled with the elements, the weather and the cold. Overall, it’s been a sucky month to say the least.
I will be happy to see February move on as I enter March with new possibilities like a different position and my first fundraiser at the end of the month. Honestly, I started off gangbusters with my flyer, initial meetings with people and my big dreams of a fun evening to raise money for our favorite hospital. Then life happened and days were passing before I knew it. Mamma mia’s never got back to me. We have to visit Panera. What about Stop and Shop or Shaw’s? Thank GOD my sister in law is helping me with restaurant gift cards otherwise I would be late with that in addition to the program!
Lately the buzz about Children’s hasn’t been helping. I mean, did I know they kidnap children? And do experiments on them because they are wards of the state?? No one in their right mind should bring their child to the top rated hospital in our area! Seriously?? two sides to every story and I am going to go out on a limb here and say what I really think about families who claim they don’t know what they were signing. I don’t believe them. There is not a single moment that I didn’t know what we were signing for Isabelle or 10 years ago for Liz. Staff went over everything, because they know the liability of what can happen if they don’t. People believing everything they see online is making my head spin. And I know not everyone has the experience that we have had but we have had this experience because we ask questions and I can be a total bitch. You want to run tests, take vitals or use her as part of your research experiment, sure- I will let you as long as she doesn’t burn off a thousand calories or hurt herself. And if my gut tells me they need to stop or she needs sleep, not her blood pressure checked then I will tell you. When she needs to rest and I know that is what she needs, I will tell you that. If I have a concern about her sats or fluid intake, I will not speak to the med student and bypass right to the attending. Just ask my husband. He may make hand motions to signal me to calm down most of the time we are there, but if anything ever happened to her I can honestly say I did everything I physically and mentally possible- no matter how small- to take care of her.
Ok. Got that off my chest. It’s been killing me to see the posts on BCH’s pages full of hate and complete ignorance, trying to take away over a hundred years of excellent health care over an incident that only half the story has been able to come out. The crazy half. That crazy half is not going to change the fact that when my husband was vomiting blood and no one knew why, Children’s saved him. It will not change when Elizabeth looked like a tumor was growing out of her neck and they knew exactly what to do for her. And it will never change the fact that in spite of missing an entire side of her heart, Isabelle is like every other 18 month old following her sister around. Nothing. No amount of posts or taking my photo and writing stupid crap on it will change that.

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Home Turf

Over the past few days I have been witnessing people at their worst. People who are making assumptions without knowing the facts, and people who are blindly posting their ignorance in response to a public statement made by Boston Children’s Hospital on the recent Pelletier case. Even Beck, in all his funky glory, has weighed in on the conversation. He claims to know the story, yet still believes this girl is at BCH. She is not. I don’t know where she is but I do know the hospital is no longer ‘holding her prisoner’.

She has become a ward of the state because of evidence that none of us other than the defense and the prosecution saw. Her parents are riling up the general public in hopes for support. They claim she was kidnapped and that they lost their parental rights to her and her care. All the claims make Boston Children’s responsible. My question is, responsible for what? For acting on their conscience and reporting something they felt strongly about? For taking on a liability as expensive as getting the state involved in this situation and taking a child away from her family because they felt it was for her own protection? Here is what people don’t understand- it takes a lot of evidence for a child to be taken like this. A lot of evidence none of us has seen. If it comes out that these conspirators are correct than by all means, serve me a crow on a plate sunny-side up.

Both sides of this have not been presented because of the gag order that apparently, not everyone paid attention to, including Mr. Pelletier himself. Claiming her life is in danger, he is breaking his ‘silence’ on what is going on. The support he is getting is ridiculous. People have been posting about how they themselves lost control over their loved ones’ care at hospitals, about how BCH is like Auschwitz, and how they should storm the hospital to free her themselves. Here’s the thing: for every procedure that was done to Isabelle, we had to sign consent forms. Staff went through what we were signing with us. We never felt coerced to do anything we didn’t feel was in her best interest. I have copies of the forms in a folder that is 2 inches thick. We signed consent for everything they did. Everything. There is absolutely NO WAY I could ever claim that I didn’t know what I was signing. No way.

So I don’t believe these people. I don’t believe that they are 100% innocent bystanders while the nurses and doctors ‘chained’ their daughter to her bed. I don’t believe that she has mitochondrial disease on the grounds that if she did, they would have found it when they were covering their bases for this case. I don’t believe a doctor’s ego has the power to make decisions against a family’s wishes. It didn’t happen to us because I have learned to be my daughter’s best advocate. I have learned to speak up in a way (ok, not all the time.) that allows me to be heard during rounds, tell the staff things like “no vitals, she needs to sleep” and not have Dept of Child Protective Services at my doorstep. It didn’t happen to us. I can be pretty aggressive when a primal instinct like protecting my daughter is set off but not once did anyone at BCH say to me “You need to leave.” Ok, maybe our NP did tell me that but it was in the interest of me getting rest so I would be able to handle the challenges that lay ahead. And she was looking out for her nurses.

The way I feel about Boston Children’s is kind of how I feel about my high school. Let me explain.

I have had a lot of mixed experiences in high school, some great and some not so great. I have had to endure some hard times, loneliness and feeling like it was never going to end. I also felt joy, made some incredible friends, and have a sentimental connection to all who have been there. At Plymouth North, I walked through my own personal fires and I carry those experiences with me. I feel passionate about both places because they are my home turf. Places where I had gone through intense emotional growth. I had my heart broken in these places. I had it put back together. I met incredible people with whom I would run into a burning building for. When I used to go to the old high school, as broken as it was, it was still where I spent 4 years of my life day in and day out. A piece of my life was in those walls. Same with BCH. We have spent many days in those halls, rooms, labs, and offices. We have gone through such great emotional upheavals in those halls. And it isn’t over yet.

Yesterday Izzie was having a blast singing “Twinkle Twinkle Little Star”. She was singing it when her new GI doctor came into the room. He smiled and began singing it with her. I thought to myself “I love this guy. He gets it. He knows she has been through a lot, and wants her to be comfortable.” It was our first appointment with him and I am so grateful we have another incredible experience to add to our collection. BCH gave me that experience. It gave me a beautiful daughter who loves her family and enjoys life in a way I can’t describe. She is a blessing that we weren’t sure we would have. I will never turn my back on the place that gave her to us. The place that showed us how to take care of her, how to help her thrive. A place that will keep her heart beating and that respects us as parents.

A Reality We Cannot Forget

I should be at the gym right now. I should be in a cycle class, on a treadmill, or on an elliptical machine. Instead, I am sitting here with my cup of coffee, in tears, and terrified. Last night before I went to bed there were multiple posts about a mom needing help to get her son transferred to Boston. Two days ago he was fine. Last night, he was in the ER at his local hospital. No warning. No signs. No mercy.
There is one particular mom who is also a nurse and part of the BCH family. She was doing everything she could to help him get transferred to Boston. All of his surgeries were done here, and he needed to be where people knew how to take care of him. She was posting, calling, trying to get one hospital to speak to the other (at least, that was my impression from the conversations) and I was amazed at the lengths she was going to in order to make this transfer happen. She can be on my team anytime.
This morning I got up, had a cup of coffee, got into my gym clothes and checked my phone to see if there were any updates. I had prayed for the family before I went to sleep and was hoping that there would be a message about getting ready to fly to Boston. They live 8 hours away.
Instead, there was news that he lost his fight 30 minutes after I went to sleep. They were in the process of notifying family and I am sure the mother was in complete shock. Dumbfounded I sat in front of the computer in tears. This little boy, whom I have followed on Facebook since I was pregnant with Isabelle. Little boy with a big smile, brown hair, and who had the same defect as Isabelle. Little boy who a few days ago, was playing and happy.

What gets me about this is how unpredictable CHDs are. I know people look at Izzie and think she looks great. She does, but there is still a time bomb in her chest. That will NEVER go away. We can live each day as if that weren’t the case but it always is in the back of my mind. I cannot imagine losing her so unexpectedly like that, but I know this mother felt that way too. Surgery is PALLIATIVE. It isn’t a cure. It helps her survive to the next step- whether that is the next repair or a transplant. It will never go away. And that is true for all CHDs. I know there are people out there who have had repairs and act as if that were a chapter in their lives that is over. I know these people personally, and it surprises me that they are so disconnected from their history. Surgery is not a cure. Children still die from CHDs even after they are ‘fixed’. Some of these people have done nothing for CHD awareness as if it doesn’t apply to them. Well, I am fixed, so I guess I don’t need to wear red or post anything about my experience. Yes, I am judging. I am judging because someone died last night to a disease some survivors pretend not to have. It makes me so angry that another mother is going through a loss so terrible I have nightmares about it.  I am judging because people should know more about the most common birth defect in the world. A silent killer just like cancer. The end result is the same.

When our children reach milestones, we all celebrate together. When someone’s child dies like this, we all mourn with her. A mother’s cry rises up to the heavens while we all stand silently beside her. There is not one dry eye in the HeartLand this morning. This was one of our boys. Our CHDers. Our family. I have never met this little boy, but this morning my heart is broken. The loss is terrible and resonates within me and countless other heart moms who have prayed all night.

There is no cure for Isabelle. I don’t know how else to say this. She is doing well and we have been so blessed. But both of us wonder when our good fortune or if our good fortune will run out. This family lived 8 hours away from Boston. Another point I would like to make is how grateful we are for being an hour away from our Heart Center. I cannot imagine how powerless this mother felt as she struggled to get him where she knew he needed to be. Stop for a second and imagine watching doctors, nurses and trauma teams try to resuscitate your child while you stand helpless by their side. A child you cared for, protected, and loved. There is nothing natural about losing a child, regardless of the disease. Please keep this family in your prayers. Our hearts are with them.