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. 

The Club

When I was little I spent a lot of time with my grandparents. I can remember days of being on Mt.Pleasant street, laying out in the backyard or running through the sprinkler. We would go to the beach and my Nana taught me how to find sea glass amidst the vast array of stones under my toes. We made sand castles and coffee milkshakes with bananas. We watched the Price is Right at lunchtime, and in the afternoons we would go to the Club.

The Club is the Plymouth Country Club located on Warren Ave. My grandparents and parents were members and played regularly. My grandfather would always be somewhere at the 9th hole by the time we would arrive, which meant I could see him tee off by the putting green. Nana would say to me “Let’s go watch gramps tee off, but you have to be QUIET.” In most cases that would be an issue for me but when I would watch him, I knew that I had to be quiet. We would walk over behind the bushes to the bench and sat on the bench to see him swing. He would look up but not acknowledge that he had seen us. He would stand up on his toes, lean back in his heels and steady the club. Full concentration. The club would go up, hesitate for a second, and then follow through with a powerful elegance. It was beautiful. I can still see him at the tee, swinging with such grace and power. It never ceases to bring tears to my eyes. When he ws through we would clap and he would get annoyed so I quickly made my exit while Nana made dinner plans. 

Her swing was also graceful, but packed with power. She would hit the ball like a little stick of dynamite and would either cheer in delight or utter words of frustration depending on what direction the ball went. Nana expressed her emotion in some way regardless of how her shots went so some days it could be quite comical. I would have a hard time sitting still and being quiet but when she scolded me, I knew I had better keep my mouth shut otherwise I would be in trouble. Some days she let me drive the golf cart. Those days were few and far between. 

We ate lunch in the clubhouse and I would either get a hamburger, hot dog or tuna fish sandwich. Nana would always get something on pumpernickel. And of course the meal wouldn’t be complete without a frappe. It was awesome. I loved being there with her and her friends. As I am writing this I can see her sitting at a table with her girlfriends, all in a circle talking or playing mahjong. At the time it was so boring to me, a hyperactive ten-year old. Now I would give anything to be there for a second to see her laugh, her incredible golf swing, her green sunglasses and her visor. We usually wouldn’t see gramps until we got home. 

My mother was also quite an incredible golfer but I don’t have as many memories of her playing as I do my grandparents. She was pretty busy during the weekdays making sure the students of the Plymouth Carver school district were getting topnotch  education in English. We would go to the Club on the weekends occasionally, and I remember one time we played together with my step-dad on a summer evening. It was the last time she would play at the level she was used to. Days later we were in a car accident that almost killed us and robbed her of her beautiful swing (amongst other things). After that I would only go with my grandparents and those days were getting fewer as well. Age, aches and pains and Parkinson’s stole my Nana’s swing, but she still enjoyed going to the Club and socializing. My cousin benefited from these visits and learned to play during the end of their time at the Club. 

There used to be a wall of fame of sorts in the hallway at the Club with names of champions and winners of tournaments form days past. My grandparents’ names were listed more than once, and my mother’s name appears a few times. The few times I have played I don’t honor their legacy whatsoever with my pathetic swings. I hear I have potential to be a better player but I keep embarrassing myself for one reason- it is familiar. For a moment, it brings my grandparents back to me through the scent of the leather seats on the cart, to the sound of a club making contact with a ball. The wind blowing through the branches and the smell of freshly cut grass in the sun. 

The Club has been out of our family’s life for years now, and as I am making plans for Izzie’s benefit to be held on March 22, I can’t help but wish we could have it in the place where her namesake spent so much time and loved so much. Where I was so happy being with them on a summer’s day. The Garibaldi club looks to be a better option financially, and that’s ok. The goal is raise money, and our best bet is a less-expensive option. Still, my heart keeps going back to the Club and I just want to see those names one more time. 

‘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….