Boston Children's Hospital, Family, HLHS

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.

Boston Children's Hospital, HLHS

Lacing up.

For those of you who don’t know, I am participating on the Miles for Miracles team for Boston Children’s Hospital running the NYC Marathon in November. I have goal of $3,000 to raise. I am hoping to have $500 by Aug 5th, but that seems like a lofty goal after checking my fundraising page. Overwhelmed doesn’t come close to describing how I feel right now, especially since my credit card will be charged the $500 because I haven’t made my deadline.

So far I have had $0 donations. That’s it. Goose egg. It’s my own fault, really.

I’m not as aggressive this time around but that will change. I have had other things that I am trying to balance in addition to training for 26.2 miles and going forward I need to come up with some strategies for fundraising. I know people have donated to all different charities on GoFundMe, PMC Challenges, and other causes. I appreciate others’ hard work in their fundraising efforts. It’s just disappointing when I look at mine.

This blog is for me to express myself and perhaps I am shooting myself in the foot by voicing my disappointment in the fact that I have nothing. Here is what my page has said to me today: It makes the people who told me I was crazy to do this fundraiser right. It validates the expressed concern over why on earth would I run a marathon and try to raise an additional $3,000 total towards Boston Childrens. In spite of allowing my shoulders to cave in a little with my deep sigh, it doesn’t deter me from continuing on moving forward.

Ok sure, so no one has donated anything yet. Yet. I have big plans for the fall when she is post fontan and I am a little more focused. With each mile I run I become one step closer to Staten Island and that is important to me. Running this marathon, after years of saying “I wish I could run a marathon” is huge. This is a huge moment for me as a person, as the mother of a chronically ill child, and as a runner. This is a really big deal to someone who first laced up her sneakers in 1997 to run a 5K with a friend and decided at Mile 2 that this is what she wanted to do for life. I quit smoking that day and bought a pair of Nikes that evening. I haven’t looked back since.

Running has allowed me to get through many difficulties in my life. To me, it is a metaphor for life’s challenges. You get out what you put into it. Same thing with this event. I will get out what I put into it and frankly, I need to put more into it. I know this. When I ran my first half I didn’t train very well. I thought I did, but when I followed a training plan for the second one, I noticed a huge difference in how I felt at the end. Amazing. Like I accomplished something I never thought I could do. I can’t wait to have that feeling again as I cross the finish line- hobbling, running or crawling. I will never forget telling  Isabelle’s namesake that I had run my first half marathon and his response was “Why didn’t you run a whole one?” I will be wearing one of his track medals in November.

This training has been hard. Last night I ran an ‘easy’ three miles but I pushed myself anyway by increasing speed and effort. My heart pounded and I struggled to  maintain my breath with each step. As I tried to catch my breath I reminded myself that this is how Izzie feels every single day. I call it putting myself in her shoes because it is the only time I can feel what she feels. Every day she embraces life with all her half of a heart. She hasn’t slowed down yet, and shows no signs of her illness other than her grayish-purple lips. I watch her try to keep up with her sister and I love watching the excitement in her eyes as she runs after her. “I run!” she yells with a big smile on those purple lips. You can’t help but smile back. Her joy in spite of what she has already been through and will be going through this September amazes me.

The link to my fundraising page is below. If you have an extra $20 (or anything for that matter) please consider donating to a hospital that has helped so many children- not just mine. Thank you as always for reading.

Boston Children's Hospital, Family, HLHS

Mixed Celebrations

I know I haven’t written in a long time and I am not sure what my excuse is this time so I won’t insult your intelligence with one. As some of you may know, I am in the process of separating from my husband by my own decision. There are days when I feel like the most selfish woman in the world. There are other days when I feel like I can breathe. And then there are days like today- when I feel everything at once.

There was a post that Sisters by Heart posted today about medical children and the effect they have on how you look at your spouse. I read part of it as I was on the T coming in to work. The author writes about how she viewed her husband differently after their child was diagnosed with an illness. How he was her source of strength, and their love grew stronger than ever. My experience started out the same way and then kind of went off on its own.

When the OB told us about Isabelle’s heart, I cried from a place inside of me I didn’t know existed. Chris was right there, holding my hand, and crying with me. We had no idea what this would mean for us or for our family. All we knew is that our baby was going to need life-saving surgery otherwise it wouldn’t survive. We didn’t even know what we were having and left the office holding each other as we made our way to the car.

The next day we went to Children’s and learned about Hypoplastic Left Heart Syndrome and what we could expect. The picture wasn’t as bleak as we had originally thought but I couldn’t find any joy in the pregnancy. I didn’t want to hear stories about babies born with holes in their heart and how all of sudden they didn’t need surgery and were FINE. I didn’t want to be called out for not wanting to hear those stories either. Yes, I was bitched out on FB because I was emotionally posting and trying to manage my feelings.

I wanted support from family. I wanted people to talk about it with us. I wanted to talk about it. I was in mourning for my happy normal pregnancy. I didn’t need to field questions about names, or if we wanted hand me down stuff brought over. I was alone with these feelings. I was alone feeling like no one understood how I felt. My husband didn’t understand the place I was in because he was dealing with his own stuff, but unlike the couple in the story, we didn’t meet back together in the end. I felt so confused, torn and had no idea how I was going to get through my pregnancy for the next 4 months. Then Sisters by Heart came into the picture and told me it was ok. It was ok to not want to give her a name right now. It was ok to have all these mixed feelings and to not have faith at times. It was ok to be sad and to mourn the pregnancy I wanted to have.

I think I would have lost my mind if it wasn’t for those moms who reached out to me.

I know Chris meant well, and he does in fact, mean well. Sometimes he hit the mark, but other times he didn’t. He handles things differently from me. I need to learn about everything that could possibly happen and he was on a need-to-know timeline. I asked the doctors questions, chatted with other heart moms and talked to a therapist about what was going on. He just talked to me. I needed my family to give me words of encouragement and support and his family passed along to him their encouragement that he neglected to tell me. He didn’t see it as being important to me while I harbored a huge resentment at his family for not saying one word to me about what we were going through. Not one word.

I tried sharing the care package we received from Sisters by Heart and update people on our appointments. We had a heart walk to raise money for the Children’s Heart Foundation. I was disappointed that people weren’t supportive at first. Pediatric cancer was a bigger cause than a niece’s heart condition that was fatal. Eventually we did get some support there and even had people walk with us which was nice. I felt better about the road we were on and that people weren’t pretending like her heart was going to magically grow the other half. We met other families whose children had CHDs. Once again we were together going in the same direction.

But it wouldn’t last. I would get more anxious as the date grew closer. I knew soon she wouldn’t be safe anymore and I relished every moment of those last few weeks. We got through labor and delivery, her first surgery and her recovery. I started to feel disconnected when we began our inpatient stays. My personality is such that I am aggressive when I think something isn’t going right. He is the opposite. I would ask questions. He figured if the doctors had concerns, they would tell him. Eventually I would text questions I would want him to ask during rounds so I could get answers even when I wasn’t at the hospital. Compromise saved the day.

But again, it didn’t last. I signed us up to be patient partners for the Boston Marathon Miles for Miracles event because of my love for running and to raise money for the hospital that saved Isabelle’s life. I was alone in my enthusiasm for this. As the fundraiser came closer people joined in the efforts and it all came together with the help of many people. I would have liked it if that enthusiasm was there from the beginning, instead of feeling isolated in my desire to do something different.

There are two families whose children are having major surgery today. People all over the Heartland are rallying for them and it is awesome to see and be part of. I think that has made me think about Isabelle’s upcoming Fontan surgery, and how I am going to deal with soon to be former inlaws. They will be there to support him but will I be able to be in the same room? Am I going to get glares and angry comments while waiting for surgical updates? I know I am projecting which is never a good plan.

Isabelle is turning two in one week. One week she will be one year on this earth longer than I thought so many months ago. We are having two separate celebrations- one on Saturday and he is doing his on Sunday. I am sad that we can’t be celebrating this incredible achievement together. My hope is eventually we can get through this separation and meet in the middle someday. Going back is not an option, but moving forward is. Unfortunately our partnership was missing some fundamentals that needed to be in place to weather the storm of having a sick child and getting through major differences in personalities. My heart knew I couldn’t stay and I was tired of constantly being at odds with everyone. And I mean EVERYONE.

Lots of stuff going on in this head. Stuff I can sort through during my training runs for the NYC marathon I am participating in for Miles for Miracles. This time I get to lace up for Izzie and the honor is all mine. These mixed emotions have fueled some miles and I am grateful I have a new sense of purpose. I know there are people out there who think I am the most selfish woman on the planet. They can think that if they want. I know what I have been feeling and how I feel now. That, and the love of my girls is all that matters to me.


No sir….I didn’t Like It.

As the clock gets closer to quitting time for me at CA, I can feel the stress bubble up from my chest and spill over into the various muscle groups in my body. Will I get home at a reasonable hour? If I am late will it be used against me? Will any mistake I make tonight be used against me? Should I grill the chicken or let it marinate one more day and take a gamble on salmonella? Maybe a walk with the girls will help me with this nervous energy. Or maybe I just need to turn everything over since I am doing such a fabulous job managing my life thus far?

This has been one hell of a week and it’s only Tuesday. I need to get off this worstmotherintheworld trip. There are worse people out there than me and I, for one, am done with all of this. What is the next step? How can we move forward because I am not moving back. Ever. I have made my bed and am prepared to lie in it so let me.

I am angry that once again I am being held over a barrel, and someone else is in control of my life. I feel chained. I feel like I can’t take full, deep breaths. And I am sick of it. I feel like I am the bird beating herself against the cage as she frantically searches for a way out. I want to be a good mother to my girls. I want to be happy. I know there is happiness out there. I can see it through the bars.

I will never understand how men can get multiple divorces and no one says anything to them but if a woman does it all hell breaks loose. It’s not important. I think the most important priority for me is my girls. Taking care of my girls and being there for them. Which is hard to do when you never know what the schedule is or when the rules will change. I will say this much: regardless of the date on the calendar, I will ALWAYS be available and ready for my girls whenever they NEED ME. That is what a good mother does in addition to other things. 

This morning Izzie wasn’t herself and threw up a little after being a tad sluggish. After I was informed of this I responded with a “I hope no one gets sick” text and then instantly regretted it. I am now second guessing everything I say. It is an awful feeling to think that every word, every message you write is scrutinized to be used as possible ammunition. What I meant was, I hope they aren’t sick because I will miss them since it is better for them to be home if they are. I hope they aren’t sick because I want to be there for them when they are sick and right now I can’t. I hope they aren’t sick because I miss them. I was afraid it would have been read as a comment on the inconvenience. Please keep in mind that this is what I am thinking in my head, it isn’t necessarily what is happening. 

I was reading another blog today and all I could think of was “fear is the absence of faith.” All I saw was fear in every sentence. Today my fears lie in losing my children in a variety of ways. Years ago my first sponsor gave me a mailbox for God. I write my fears on the piece of paper and put it into the box. Laugh all you want- it makes me feel better! Even if it is only for a few seconds. Here’s the thing: I need more faith to get through this fear. There is too much fear going on right now. It’s causing me to react in ways I don’t like. Breathe in faith, breathe out fear. It can apply to anything. Izzie, my current separation situation, and life in general.

I don’t want to be the caged bird but right now, that is where I am at. Running gives me the sensation of getting away and I am looking forward to doing it tomorrow. Maybe that is why the marathon is so appealing to me right now, I don’t know. I just know that it is time for me to head out and now I feel like I am less tied down by getting this out. 

I was asked how I felt about my situation earlier today and I quoted my favorite horse from Ren & Stimpy “No sir…I didn’t like it.” This isn’t fun for anyone. My cage gets smaller and smaller every day. Some days breathing is a real challenge when the fear knocks the wind out of me and I have had moments when I want to give up. The little support I have gotten has been what has lifted my head up so to all of you out there who have given me words of encouragement, I thank you from the bottom of my heart. 

Family, HLHS

First steps

It’s official. I have been accepted as a runner on the Miles for Miracles team to run the NYC marathon for Izzie. What started out as a whim became a reality this morning as I forced myself to get up and out for my first solo training run. Saturday was the first training group run and I ran a pathetic two miles which I was thankful for later when I had to drive 300 miles to get Liz in Vermont that afternoon.
I would have been exhausted if I did more than that since I haven’t run in over two weeks. It felt great to hear the suggestions and to be with a group. Being the social butterfly that I am I enjoy being around people, especially around people who have common goals with me.

Izzie is doing very well and talking up a storm. She surprises me with her phrases and the smile never leaves my face when I spend time with her. Addie continues to test patience but she is getting better. I love watching them play together. Their relationship is very special and brings me joy to see them grow closer together. The flip side of that is I also worry about Adeline if anything happened to Izzie. I worry about how she is going to handle the next hospitalization and being apart from her new best friend. September is still a ways away, but we are starting the second week of July so I know that time is passing quickly.

This past week I was able to have the girls at my new apartment. We had a great time playing together, making waffles and playing on the sofa bed. Spending time with them makes my whole day and I couldn’t get enough of it . It made me feel like a mom, which since this whole thing started I haven’t been able to feel until recently . I have been feeling disconnected and lost without them. I wish I had more days like we had last week. We shall see what happens.

Yesterday was a bad day for me. I understand that not everyone gets why I am doing what I am doing. I have been informed that my family is embarassed by my actions and this morning I was told I was a selfish person. If opting out of a marriage that I was unhappy in is selfish than I guess I am guilty. Especially since I didn’t give it chance. I knew in my heart that I couldn’t stay and I would rather leave now than 10 years from now. I was tired of taking out my frustrations out on my girls. I didn’t think staying was the right choice.

So I am being punished with the whispers, judgement calls and constant questioning. I do my best to stand in the direction of the wind that is blowing in my face but somedays I really want to turn away. Some day that wind cuts right through me and in spite of what people may think, it hurts.

I am not selfish because I want to be a better mother to my children. When I don’t have them I am lost and people around me try to provide comfort. I am so grateful for that. This isn’t easy by any stretch of the imagination. I didn’t think it would be but I thought if nothing else I would have the support of my family but even that is unclear.

Here is what I do know: life gets better. It may take some time but it will get better. In the meantime I have to continue to put one foot in front of the other and move forward.