365 days and counting…

This is my favorite picture of Isabelle. It is the day our fight began. It is the week before her chest would be scarred for life. It symbolizes the perfection she truly was in that moment. In that moment, she was normal. That moment didn’t last long, but we enjoyed it as much as we could. We knew after that moment, her world would become full of doctors, nurses, procedures and repairs. Our world changed too. I became someone I never thought I could be. 

Today, Isabelle turns four years old. Today my tears will come from sheer joy and gratitude as I reflect on the journey we have been on the past four and a half years. Today, I will celebrate not just the anniversary of her birth, but of the first day she fought against the most severe heart defect a human can be born with. I am celebrating the moment she cried out after being taken from my body, the whisper I made in her ear. “Shout to heavens, Izzie, You shout to the heavens and fight!” We were there to bear witness to her cries “I am here, I am going to live and I will fight”. That is what I heard four years ago this very minute.

365 days. For 365 days, my daughter has fought against congenital heart disease. She has said “Not today,” to her hypoplastic left heart syndrome. “Not today.” For 365 days, she has laughed, played, cried, gotten into things she shouldn’t  have, and grown a few inches. For 365 days, she has told HLHS “You are not slowing me down.” Each day was a day filled with running, kicking a soccer ball, learning to swim, climbing furniture, and determination to be a puma. 

For 365 days, Isabelle has told CHD that she is not letting it win. She has shown us what it means to love life and enjoy the moment we are in. Her smile has lifted the weight in my heart when I stop to think about her future. I know something she doesn’t. She may have won the past 365 days, but there is no guarantee the streak will continue. We don’t know if her function will stay the way it is, or if she will begin to develop symptoms of a weakening heart. She doesn’t know her heart is special, she just knows that sometimes she throws up for no apparent reason, and that she can’t run as fast as Addie. 

Here is a gift I am giving myself in honor of her birthday. Instead of worrying about her future, today I want to celebrate another 365 days of her beating HLHS. Fear has no place here on her birthday. Today, we will celebrate the joy of telling congenital heart disease to go f*ck itself, and have a piece of cake. 

Boston Children's Hospital, Family, HLHS, Miles for Miracles

Marathon Monday

On a day when many people I know are standing at the starting line waiting for the race to start, I am sitting here in my pajamas sipping the last cup of coffee out of the pot. People’s excitement is threaded throughout my FB feed and it is hard not to get excited for them as they make their way to the start of one of the most memorable run of their lives. I am happy for them and thrilled that they get to have such a coveted spot that so many people train tirelessly for and not get. The hope I want to talk about today is my fading hope that someday I will be one of those people.

When Izzie was accepted as a patient partner for Miles for Miracles, I was over the moon excited. This chance would bring me closer to that dream I had of running someday. This would also allow us to participate in the greatest race of the year. What I didn’t count on was other people around me not sharing the same excitement.

When you submit to be part of a great fundraiser such as this, everyone needs to be on the same page. Expectations need to be set and a strategic plan needs to come together. It also helps if the people you are partnered with make a connection to your child. The runners we had didn’t meet Izzie until we had our fundraiser for them before the race. I would be sending emails and forcing the connection. It felt very awkward. It didn’t feel as though they really understood what our life was like  as a medical family and how fortunate we felt to have Boston Children’s in our lives. I was hoping that we could be at the Miles for Miracles events together. That didn’t happen. On the day when we were to meet the runners at an event sponsored by the hospital, neither one was able to make it. I felt like my dream of having this inspirational experience was fading fast. This wasn’t what I had thought it would be. It didn’t get much better after that first event.

We planned a fundraiser and thanks to my in-laws, was a huge success. I guess it was a good thing that they took over where they did and made everything happen. There were many parts of the planning that I hadn’t though of but they did. As the days came closer to the date,  I began feeling like this was not a good idea. The parts that I did do – the brochure, posters, and news article, weren’t good enough. I felt very disconnected and not an important part of the process. To make matters worse, the runners who were running for Izzie didn’t understand that we were raising money for them. I can’t imagine how I would have felt if they didn’t show up.

After the fundraiser, things didn’t improve much. The benefit recognizing us for our efforts was very stressful. We didn’t meet or socialize with other families like I had wanted to. This wasn’t what I had planned for in my mind and it was very disappointing. My family knew that I was upset and chalked it up to my typical moodiness.

Race day was exciting and we all were at the BCH area in Wellesley to cheer on our runners. For a little while I felt like we had done the right thing and that we were part of something great. We were part of something great. We helped raise money for the best hospital in the world. We were just like all the other families that were there but we hardly chatted with anyone. It wasn’t the camaraderie that I had hoped for. None of the Miles for Miracles was what I had thought it would be for us.

I am not blaming anyone here. Chris did his best to try to make it be successful and so didn’t other people. My friend had his band play for free and that was a huge success. Other friends from my meetings and such came and supported us. It wasn’t a total loss. What I am starting to see now is that I had forced something to happen instead of letting it happen. I had taken a dream of mine and forced others to share this dream.

If and when I do apply to run for Miles for Miracles again, I will make sure that everyone knows my intentions and is willing to support me. I want to run for Izzie, and for many of the cardiac children who are her comrades in arms on 8 East. She still has her moments and our hopes for new treatments for her condition grow every day. Recently, she was hospitalized overnight and it was a stark reminder that she is not cured. We need more options for her and for others like her.

Tuesday we have a cardio appointment and we are taking Addie with us so she can see first hand that these appointments aren’t always fun. Sometimes it is really hard to be a patient and Addie needs to see that. She needs to understand that her sister didn’t ask to have a heart defect, and wants to be just like her. I think this non-invasive appointment is a great way for her to see this.

I wish everyone on the Miles for Miracles team great luck today and thank you for running for us!




Boston Children's Hospital, HLHS

When Geography Matters.

Today Isabelle had an appointment with Dr. Sadhwani of the Cardiac Neurodevelopmental Program at Boston Children’s Hospital. She was not happy being trapped in the car for over an hour and decided that the chest clip on her car seat was far too annoying to bear. By the time we reached Hanover she was halfway out of her car seat demanding goldfish. I complied, and tried to keep her amused in spite of the “No.” I kept getting from the back seat.

“Do you want your milk?”
“Can I get your tummy?”
“Do you want to sing a song?”
I turned to look at her at one point and heard “Noooooo!”

You get the idea. She was not happy. Neither was I since I had to listen to more discussion about the Patriots, balls, deflated whatever, and what an ass Goodell is all the way in thanks to the various sports stations in the area. I welcomed the “Traffic on the Threes” to break it up a little. I even tolerated Jon Keller as he shamed the Boston Olympics peeps for being stupid enough to think the City of Boston would want the Olympics here with that up and down voice he has when being condescending. Or is that really how he talks?

After a cookie, goldfish and a few “Look Izzie, the city!” exclamations, we made it to Longwood. Usually it takes us about an hour to get to BCH. Today was a little more than that but we were still on schedule. We figured out how to get to Farley through Fegan (only BCH peeps would know what that is) and to the 6th floor we went! She was weighed and measured. She didn’t cry. There wasn’t any sign of any distress of any kind. As a matter of fact, when we were in the lobby waiting for an elevator, Izzie exclaimed” I want to see the doctors!”

After waiting a little bit the doctor came in and greeted us with lots of activities. Izzie was going to play with the “toys” she brought in. Izzie wasn’t keen about sitting at the table but relented when she saw the different items she would be playing with. And so it began. The repetitive questioning about which crayon was which color, did she know her shapes (she did. She even knows octogon but we didn’t divulge that information) and which duck was bigger commenced with little bribery. Izzie enjoyed completing each task. Perhaps it was my expression of joy (and relief) when she recognized objects appropriately. Soon she learned that every time she completed a task, we were so happy so she went along with what the doctor was asking her to do.

We played in the hallway. She ran when asked, tried to hop on one foot and jumped with two feet. The doctor was happy to see how well she moved but noticed that after a little while she began to breathe heavy. We shrugged it off, she breathes heavy but it doesn’t stop her. It didn’t this time either. Izzie proceeded to run after a soccer ball and go up and down the stairs to show coordination. Today she took some steps by herself without holding onto anything. First time ever. Chris and I were thrilled.

The doctor gave her a snack of crackers and juice to give her a break and reward for her hard work. Izzie obliged the doctor and completed a few more tasks with some prompting.  I could see that she was showing signs that she was over it with the puzzles and if this lady asks what color this crayon is one more time….The doctor knew she was running out of time, so she offered Izzie the chance of a lifetime- to cut paper with scissors.

“Izzie, do you want to play with the scissors?”
Izzie’s eyes widen in amazement and she responds with a resounding “Yes!”
“Ok, three more pages and then you can have the scissors.”
If Isabelle could say “Really?” in appropriate context, I think she would have at that moment. The next few pages were an agonizing “Izzie, do you see the picture here? (flips page) Ok, where on this page do you see that picture?” “Scissors. I want scissors.” “Ok, soon you will have the scissors but I need you to answer this question.” I bet you know where this is going.

Eventually Isabelle was able to use the scissors and she cut paper for the first time ever. I am not sure Chris was too thrilled that she learned this skill but I was happy she could do things I didn’t know she could do. Including use scissors. The doctor then told us that she would gather the results and let us know what her thoughts were for Izzie. After a few minutes (and for me a few text replies later) she came back in and I prepared myself to hear the results.

She did incredibly well. It is rare for her (the doctor) to say this but she agrees with the staff from Mt. Pleasant and felt strongly that Izzie did not need services any longer. She reached her milestones appropriate for a three year old. She is ready for preschool emotionally, socially, and physically. She may need a medical plan because of her HLHS, but other than that, she is on point for where a heart healthy child should be at age three.

I thought back to our first appointment with the Advanced Fetal Medicine center where Dr. Levine told me that our child may be significantly delayed and a few IQ points less than my other two children. The memory of sitting there not knowing what the future held for us struck me. The fear enveloping me, not wanting to have hope because what if I get my hopes up only to not be able to take her home with us. And the thought no one wants to admit they have “What am I going to do if the child is significantly behind the others?”  Yeah. I asked myself that question as I sat listening to the obligatory statistics Dr. Levine had to tell us. And then I heard “Tennis.”

“I’m sorry, what?” I asked not sure if I heard her correctly.

“One of my kids plays tennis. Another is a gymnast. Some are delayed and some are right where other kids their age are. Some only are a few points less than their siblings are on the IQ scale.”

And here we are. Izzie is meeting her milestones. Sometimes I wonder if it was her high oxygen saturation levels after her Norwood that allowed her brain to grow the way it was supposed to. Other times I think it is the incredible staff at the Kennedy Donovan Center who sang songs and engaged her every week. And then there is her surgeon, Dr. Emani, who did one of the most perfect repairs other cardiologists at BCH has ever seen. (Direct quotes people- I heard them say it) Or maybe it is the fact that Chris and I have put our differences aside, and parent our girls together. We try hard to be available for them and provide stability for them, which is essential for brain development.

Whatever is the reason, Izzie is ready for what every three year old is ready for- playtime and snacks. Ok, playtime, circle time, recess, fun activities, letters, and maybe a few snacks. My hypoplast is ready for whatever her school path will take her. Thank God we live an hour away from the best hospital in the world we could have gone to. Thank God I live minutes away from where they live with their dad so I can be there in a flash if he needs me or they need me. Thank God I live in a state that provides supplemental medicare (thank you taxpayers, I mean that) on top of her health insurance so we can provide her with the care she needs. Thank God we live in a country where we have religious freedom to pray to whatever God we need to pray to and a healthcare system that will not leave her behind because she was born with a condition she didn’t ask for. Thank God. And so I will.

Boston Children's Hospital, Family, HLHS

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.


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.


Goodbye 2013

What a year. What a crazy, mixed up, insane, incredible year. In many ways this year has been a great one and in others it has been extremely difficult for me personally. The temptation to go down the ‘what a crappy year’ road is pretty big and I was all set to rant (once again) about how much this year sucked. And then I received a daily reading  in my email that stopped me in mid sentence.  I will use this night to honor the changes in my life. I will list ten good or important things that have happened this year. I will find time to talk about them with someone tonight as I celebrate. I will remember to have fun, to be sober, and to be safe. 

Say what? Honor the changes in my life instead of complaining about them? I don’t have anything to lose so why not? I can’t will myself into a positive frame of mind, I have proven that many times over so a little action may help me put this year into perspective. 

1. Isabelle had her second life-saving open heart surgery and survived. Survived being put on ice. Survived bypass. Survived the repair and came back to us. 

2. The moment when I thought we were never going to leave the hospital…and then we did. Her incision infection did heal and we were able after some antibiotic trial and error, to stay home. 

3. I lost my job as Presentation Designer at Eaton Vance. After crying for months, and I mean MONTHS, I realized that I am better off.  I miss some of the people and it was an incredible experience, but I am happier knowing where I stand with people. I know the place where I am at now is where I need to be, and hopefully 2014 will bring a new role to my life. Until then, I am grateful I kept going. I kept trying. I went on interview after interview and heard nothing. I took some steps backward with some of the work I was doing and realized that I didn’t want to be that person anymore. I raised my standards and hung in there. And here I am at Fidelity. It could be for another month or longer but the important thing is I am open to the possibilities that have been presented to me. 

4. We were able to wean Izzie off the feeding tube. What a miracle that was! I can’t the credit, our daycare was the driving force behind that milestone. After her Glenn surgery she was able to have plain milk and began to drink more. Every day it was a little more by mouth until the day came that we just gave her medications through it. After maintaining this records for a few months, Dr. Lightdale just took it out. Thank God we had it so she could grow big enough for her surgery, but I was so happy to see it gone!

5. Isabelle made it to her first birthday. Thinking back to those days when I wondered if we were ever going to be able to take her home and then blowing her candles out on her cake with her on her birthday was surreal. The days leading up to when she was born were terrifying. Her first moments were surrounded by doctors and nurses. A year later she was surrounded by family, listening to us all sing ‘Happy Birthday’ and shoving her hands into cake. 

6. We went to Disney and had breakfast with the Princesses. Seeing Disney through Addie’s eyes was truly an experience I will never forget! Liz enjoyed it too but being older the sense of awe wasn’t there. Regardless we all had an incredible time and made it home in one piece. 

7. I became connected with Icing Smiles and Miles for Miracles. Again, words can’t express how exciting it is to be part of two incredible organizations that bring hope to families who are dealing with similar health issues. 

8. I was able to be there for Liz when she needed me. I have always felt that I have fallen short in being Liz’s mom. I have made many mistakes and wasn’t as available as I wanted to be when she needed me over the years.  Being home allowed me to be available when she needed me to pick her up, participate at her band events and most importantly, be there when she got home from school. Don’t get me wrong- I would only see her for a few minutes and then she would go upstairs, but I enjoyed those few minutes of when she would walk through the door. 

9. Addie started preschool at Mt. Pleasant. A school close to my heart. Seeing her walk up those steps made me tear up for a few days. And I am totally not that kind of mom that cries when the kids go off to school. Well….maybe I am. Either way, it’s awesome to see her in classrooms that I was in, that my mother and uncle were in, and that Liz was in. It reconnects me with my friends who went there with me, whether in memories or on Facebook. I love it. 

10. George became a member of our family. How could I list the year’s events and NOT mention our dog?? I had wanted a dog since I was 11 after my Mitzi died and here he was….chewing everything in sight and giving me hives. I am allergic to him but it’s tolerable. Plus, he is a great running partner when he isn’t sniffing every tree on the bike trail. I watched our girls fall in love with him and in love too. His friendly disposition makes him a  terrible watchdog, but he does love being with us so we are stuck with him. 

There are other moments in 2013 that were pretty big. The day I realized that being jobless didn’t mean that I worthless. The day my husband supported me when I couldn’t stop crying long enough to breathe. The day when I felt like myself again for the first time in months. The moment when I met some incredible heart moms and dads. When I was able to get connected with Icing Smiles and when we were accepted into the Miles for Miracles program. All of these small but great moments made 2013 an incredible year. So I guess there was only one bad moment in comparison to all of the good ones. Tonight, I’ll celebrate them all. 


‘Nuff Said

It has been quite some time since I last posted, and for that I apologize. I haven’t had the time to write the way I wanted to and since I can’t bring myself to write posts like “I know I haven’t posted in a while but I am really busy so I’ll catch up with you after the holidays 🙂 “, I just thought it every time I sat at my laptop. I have had so much going on in my head too but I wasn’t sure if it was holiday stuff or just my usual craziness. Right now I have a break between my presentation workload and thought to myself “Why not?”.

So….christmas was good. We were all together for the most part and no one was hospitalized. It was a tad emotional when I would see posts on the Boston Children’s of the great activities they put on to make hospital life easier during the holidays. One of them being the Boston Pops performing classic Christmas carols including a reading of the Night Before Christmas. Of course this year Patriot’s very own Gronk read it to the kids. Beats being inpatient as my husband keeps telling me. Speaking of which….I am going to start with my favorite topic: Boston Children’s Hospital.

I understand there are people out there who are subscribing to the conspiracy theory that Children’s is stealing custody from parents and kidnapping their children. Namely, one family in particular whose child diagnosis is in question. I am not a doctor and will not presume any knowledge on mitochondrial disease. I do know people whose children have it and know that it is a tricky disease to treat. What I do know, coming from a family of lawyers, is that NO hospital would EVER take on a liability such as reporting a family to Childrens’ Services without a GOOD REASON. It’s too expensive, it could cost them more than a few patients and most importantly, it goes against everything the hospital stands for. And I am SICK of seeing posts about it. Sick of seeing people freaking out, sick of peoples’ ignorance and really sick of reading abusive messages directed at the hospital, as if they read their twitter feeds and Facebook pages to make major decisions. If you are one of those parents who think the hospital is trying to kidnap children, well, you better find something else to read because frankly, I think you are an idiot. After months of reading these posts I just had to shout from the rooftops how much I have pushed back on hospital staff and we still have Izzie in spite of my ‘outgoing’ personality. 

Boston Children’s hospital took my daughter’s broken heart, put a shunt in, created a hole in the atria, fixed a subclavian artery, created an aortic arch, took the shunt back down, and re-directed her blood flow so she could live. I got in those doctors’ and nurses faces when my instinct told me to. I participated in rounds and asked questions about next steps. I educated myself. Believe me when I tell you that there were days when my emotions got the better of me and my voice reflected my frustrations. I probably looked like I just stepped out of a trailer park some mornings. No one threatened me. No one told me that I was causing problems with treatment. If anything, Chris and I have been told NUMEROUS times that we are great advocates for our daughter because we do question, we  insist on stopping tests when we felt it was too much for her. I will never forget during a barium study Isabelle was screaming to the point of her entire body turning purple and I turned to the staff and said “We are done NOW.” My favorite nurse was with us and she backed me up. They followed our cues. They did NOT tell us that we were wrong. So I will not make any apologies when I write back on twitter or Facebook with my guns blasting. Those of you who know me know that I am the opposite of shy, quiet and demure. And that’s ok. It has saved my daughter’s life.  I have seen miracles walk the halls in there and I think until both sides are presented, the haters need to find something else to do. 

I also have recently seen posts rating the attendees and staff on the cardiac floors. Ummm….what is this, ZAGATS? Sure, I have had to deal with nurses and doctors who drive me crazy but I don’t pass that on unless someone asks me PERSONALLY what my experience has been. I have never sent messages to people the night before their child is to have surgery and tell them bad things about their surgeon. I can’t imagine why anyone would do that personally, but I have heard of that happening. If you are having issues with the medical staff, take it up with them or perhaps a therapist. Don’t tell a parent who is in the process of preparing to hand over their child to a surgeon that their surgeon is a murderer. Common sense should tell you that, but I guess some people are lacking that as well. I know not everyone feels the way I do about Children’s, and I have toned it down where it counts, but when I hear that parents are terrified to question staff due to wrong information, then I just can’t keep it to myself. 

I was looking at the calendar and saw that in two weeks we have a cardio appointment. 2014 will be the Year of the Fontan for us, beginning in the spring when she has her cath and sedated echo. It also marks our first year raising money for Boston Children’s Miles for Miracles. We have two runners assigned to Izzie and they don’t live too far from us.  I cannot wait to meet her runners and have already started to make plans for her fundraiser (March 22 is the tentative date so mark your calendars!).  We also participate in I Run 4 Michael program, and have an amazing runner named Lindsay Tritabaugh running for Izzie in Minnesota. Every time she works out, she dedicates her efforts to Izzie. She has been such a great person to connect with and I feel so lucky that we have been blessed with her as well. 

The past few months I have seen people struggle post-Fontan, and I keep praying that a new way to help cardiac babies like Isabelle comes to fruition. I’ve been coveting other peoples’ bi-vent repairs, and as happy as I am for them, there is a part of me that is sad for Izzie. I’m sad that her heart doesn’t have two ventricles to repair. I’m grateful she is doing so well, but as my three year old pointed out to me not long ago, she needs 4 chambers, not just 3. I cling to the hope that Dr. Emani is working with colleagues to find a better way than the Fontan but for now, it is the best shot she has. 

These are things that plague me when I try to sleep at night. These and whether or not I will be hired by someone. My current contract is awesome, but I do want to belong somewhere eventually. It’s getting harder and harder to ‘just keep swimming’ but it beats the alternative. I know I am doing everything I can to contribute to our finances. I am doing my best to make a good impression and to land a job. I am keeping all of my options open and my best foot forward. The other goal is to join a gym and get rid of this fat ass. I cannot believe how I have been stress-eating. It’s insane. That is another topic for another day. Until next time….