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My 7 Layer Day on a tee.

A few weeks ago I saw a post on Facebook about a contest to win a foursome at a charity golf tournament that benefited a heart charity. I didn’t know the foundation or what the charity was but I saw ‘Free Foursome” and just went with it. That one spur of the moment action has given me an incredible day that has been a multitude of blessings.

Jasper’s Heart is a foundation that was created by his parents to support The Children’s Heart Foundation in his memory. Creating a fundraising event like a golf tournament is quite an undertaking and these people were amazing in their attention to detail. And they were the most wonderful, welcoming people and I was honored to have been part of their event. Another heart family, trying to make a difference in a world that has no place for CHDs. Not enough funding. Not enough advertising for awareness. Not enough attention. But every now and then, there are these little pockets of hope like this tournament, news of another breakthrough or even a child’s success story that reminds me that there are other families out there that are in the same boat we are. The heart pages are not enough for me to feel camaraderie, which is sad because that is the purpose of them. As I have mentioned in previous posts I feel disconnected and that somehow I don’t belong. I belonged today with people I had never met before. No amount of FB ‘likes’ can make that any better. Oh wait- meeting Dan Foley, chairman of the Children’s Heart Foundation made that better. The genuine appreciation this family had for us attending made it hugely better. We are talking about putting one together for Isabelle to support the CHF and their research, and they have offered to give us helpful suggestions in addition to supporting any other event we are participating in. Wow. It really doesn’t get much better than that. 

Today was wonderful for another big reason- we golfed with my cousin and her husband. They are more like my brother and sister than cousins, and I had a great time getting to know them on a different playing field. Scott has a personal connection to CHDs also, through his brother who was born with mitral valve issues amongst other things, and his mother who also had heart issues. 

And then there was the golf itself. Golf is the one activity that Chris and I share with each other without competition. I love playing with him and look forward to the opportunities that present themselves. I grew up immersed in golf. I know I say that a lot, but playing with Dara today reminded me of how much time we spent at the country club with our dear grandparents who loved to share their favorite past-time with us. Many afternoons were spent at their house with golf on television. They would go back and forth about each player and what they should be doing. Every summer before I went to camp I would go to the Plymouth Country Club with my grandmother and be with her when she played with her foursome. She always would take me out for three holes and tried to teach this ADHD child how to play. At the time, I thought it was the most boring thing in the world and would start begging for a frappe by the time we reached the second hole. Today I closed my eyes, breathed in  the mixture of grass with an undertone of leather, and wished I was back there sitting in the cart, watching my Nana tee off or hear her voice telling me to bend my knees and make a ‘v’ with my thumbs. 

I came to play with very few expectations, and was happy when we used my shots. I was even happier watching my cousin improve as the day went on, both of us laughing and joking how proud Nana and Gramps would be of our shots. They would have been ecstatic to see us enjoying ourselves in addition to our performance. My mother was very pleased when I told her what a wonderful day we had. When she saw the pictures of me in mid-swing, she immediately told me that I was hyperextended and how my posture should be in order to have more control. My mother used to be a phenomenal golfer. She had her name was on the wall of PCC a few times herself. The family connection to the game runs deep, and today we celebrated being on the course together. I cannot accurately express how much that meant to me. Truly could not think of a better way to commemorate the anniversary of my dear Nana’s passing than playing golf with my sister cousin and our husbands. I can’t think of a better way to honor our daughter by playing with others who are donating to our cause. 

So as you can see today’s tournament was about many pieces of who I am. Golf. Family. CHD Awareness. Funding for research. Heart family. Enjoying my life partner. Spending time with my favorite cousin who was a cornerstone in my life and still is. 7 layers to the day, sweet!

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Tonight I held Isabelle for a little while after she had her bottle. Stroked her hair, played with her little fingers and held her tight. In preparation for our charity golf outing tomorrow, I had read a few pages of a mother’s blog about her son Jasper. Jasper was a boy born with a variety of complex CHDs and had multiple surgeries. His devoted parents were by his side and gave him such love and care I could not stop going through the posts. People always say stuff to me like “You are doing an amazing job with her- she looks amazing!” Well, what choice do we have? Of course we are going to fight for the best care, look into every option and educate ourselves so we can be her advocates. That is certainly what this heart mama did. And heart dad. 

I won a foursome at a golf fundraiser for the Children’s Heart Foundation. It is being done through this boy’s foundation, Jasper’s Heart. Jasper passed away in February of 2010. We didn’t have a chance to meet him. He shared our cardiologist. I read his mother’s beautiful posts about her incredible son and saw that we had similar experiences with our fetal echos. 

After I read her stories I began to think about our shared medical people. All of their energy, their devotion to finding answers for our children must be exhausting. All that investment and then to lose a patient. Getting hopes up with some success but then there is the flip side that carries loss. I thought of Dr. Levine sitting across from me with her sketches of what our baby’s heart should look like, and what it appeared to be. Her candor when describing the disease, her honesty about the surgical statistics. She did not paint a morose picture and kept talking about her patients’ lives. She gave us hope wrapped in facts. 

And Dr. Emani. His new techniques stemming from a desire to help our children thrive in spite of what anatomy was given to them. He not only invests time, energy and care, but also his physical being is what sews them into living. How he must feel when one of his patients loses the battle he tries to win daily. 

We all feel so sad for parents who lose their beautiful children. I know I have yet to meet Jaspers parents, and I already feel as if I know them. Her tears were my tears. Her joy at his joys made me smile. And when I read that he had passed away unexpectedly in February of 2010, after I thought of their devestating heartache, I thought of Dr. Levine. 

Dr. Levine loves my videos, chats with me about Isabelle’s progress and I have no doubt that she cares for our daughter on many levels. Dr. Emani went out of his way to say hello to his patient as we were registering for her MICkey button replacement. He told me how pleased he was with how she was doing and how he talks with Dr. Levine about her. Dr. Lightdale, her GI, makes sure we are 100% comfortable before she moves onto the the next (and if we aren’t, she has stayed with me to answer my concerns or tells me she will be right back). All of these professionals, including the many nurses and our dear NP Alison, all have invested love, energy, care and hope into our fighter. Any loss is their loss too. When one child loses the fight, we all lose. 

I cannot wait to meet these wonderful people tomorrow and to honor their son by playing in his tournament with my husband, my cousin and her husband who also has been touched by congenital heart disease. 

 

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The Heart Clique

Now I have really done it. Not sure what, but it must have been something to convince a large amount of people to not respond to ANYTHING I write to them. Words of encouragement, liking their photos and comments supporting them while their child has been inpatient. For the past year I have relied on support from other mothers whose children have a CHD. Support that has meant a great deal to me.

I know I should be in bed right now but I am angry. I am angry and hurt. It hurts me to constantly try to reach my hand out and get it slapped by other mothers whose children have the same condition as mine. Can’t we all just get along? No? 

You know, maybe it’s me. Maybe it’s my comments about feeling alienated by all the christian themes in posts on some of these pages. Maybe I just don’t belong in this group. Maybe, I am putting far too much stock into a group of women who are human like everyone else. Whatever it is, it still hurts when I try to connect with someone oiut of genuine feeling, and be ignored. Constantly. Especially when it is someone I have been following since I signed onto this goddamn page a year ago. 

Yes, I get frustrated when I feel that people think I don’t care about life. I don’t appreciate the anti-vaccination peeps not caring that they infect the general population. I also am not shy when it comes to how much I love our hospital. That doesn’t mean that I don’t care about what our children are going through, or what other parents are going through sitting at their childs bedside in an ICU. 

I am tired of feeling like I can;t even belong in a group with moms like me- moms who have a child with a life-threatening condition that there isn’t a cure for. Brash, blunt, too forward? Yes, that is me. But I still care, even if you don’t.

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Judgement Call

Lately I have been making it a habit of inviting God to be with me on my mat when setting the intention for my yoga practice. It grounds me. Makes me feel more balanced. Opens up my spiritual connection and even more important- gives action towards healing my relationship with God. Tonight was no different. 

As I lay in Child’s pose after being twisted into a variety of Warrior Two’s, chattarangas and forward folds, I thought about Izzie’s procedure tomorrow. Her going under anesthesia, breathing tube and all. I thought about the last time I saw her post-op, and how she looked intubated, hooked up to various machines and instantly tears sprang to my eyes. My forehead pressing into the mat, I breathed in and out in an attempt to calm myself down. With each breath I handed over thoughts of fear, my sadness that we are even in this situation, and over our day at the pool when she turned a shade of violet because she was cold. I saw the instructor look concerned, and I saw the expressions of the other parents while I got her dressed while she played with tube in her mottled fingers. All my sadness, my anxiety, and feelings I didn’t even know were in there came spilling out between my eyelashes on the mat. Needless to say when I left the class, I felt lighter- so that was a good thing. 

When I got home I sat down, got myself a soda, hooked myself up to the breast pump and checked Facebook. Not a good thing. 

I belong to various heart pages. Some more specific than others. Throughout the year I have learned about the different kinds of people that frequent these pages- from mothers who are still carrying their heart babies to parents of transplant patients. I see a lot of Christian mothers who share their faith- some in a ‘nicer’ way than others. I see other parents with very sick children who need prayers daily. 

Unfortunately, what I also see is a great deal of judgement that comes out in the various posts around the CHD world. I wonder if it is a form of fear manifesting itself through condescending comments and other passive aggressive behavior. I found myself typing “For a hippie, you are really judgemental, which in turn- is hypocritical of your so-called nature.” Yes. I was actually typing this. Deep breaths. 

I am guilty of being judgemental myself. I wish other people think like I do. Many times, that is my biggest problem. It’s a character defect. I hope someday it will resolve itself and I won’t have to be a jerk when I don’t want to be. Tonight, I had to say something because this woman asked a question that frankly, was a good question about an issue that is a hot topic: circumcision. Every time this is brought up, it is almost like whomever is thinking about having it done to their son is a barbarian. For my family, it is part of our faith and is an expression of that faith. Considering these boards are made up of so many Christians, I would think people would understand the whole ‘faith’ concept. But they don’t. They can’t even step back and NOT say anything, because they can’t resist getting a good jab in there. “Why on earth would you consider a cosmetic surgery for your heart baby?” Cosmetic?? Really? 

Maybe for some people it is cosmetic. And who cares if it is?? My whole issue with this was that there was no consideration of the original poster’s feelings. She wasn’t asking IF she should do it, but WHEN. Instead, she got a ton of people passively/aggressively ‘sharing’ their experience whether it was helpful or not. 

There’s a saying in AA that I love: you can’t give away what you don’t have. All I can share is my experience, strength and hope. That’s it. My experience with this situation was that I was honestly worried about how we were going to do this if we had a boy. There wasn’t an option for me. It wouldn’t have been a ‘cosmetic’ procedure for me. Thank God I never posted a question about it. I would have felt like I was horrible for even thinking about it. 

Some of these mothers really make me shake my head. I am sure I do the same. But here’s another popular AA saying that I try to live by: To Thine Own Self be True. 

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The Heat is On and Not just Outside

It’s official- Isabelle is now totally mobile. She crawls. She scampers on all 4 limbs. Stands up holding anything that helps the cause. She is on the go. Considering that a few months ago while reading about other babies that were crawling already and wondering whether or not she would do the same, I think this is awesome. 

The other day I stopped at Babies R Us on the way home from an appointment to see if there were any rompers left. One piece romper is the rage right now since she insists on crawling every chance she gets and it keeps her hands away from the PEG tube. Of course, there are a select few and I snatch them up quickly. It was a buy one get one for a dollar sale. I was amazed that I found any at all.

Out of the corner of my eye, I see a onesie that had a large pink cupcake on it with “My First Birthday” lettering. There is a pink tutu that matches. I’m intrigued, and tentatively walk over to see the birthday selection. The outfit is too cute but I am fighting with myself over whether to buy it or not. Am I jinxing myself? What if something happens and we can’t have a party? I can’t bear the thought of having the outfit and no birthday so I just stand in front of the display with a knot growing in my chest. 

My husband was hoping we could have had her birthday the weekend before August 3rd but something inside of me wanted to wait until she made it to the 1st. I don’t know why – maybe it’s the old Jewish superstition of waiting until it actually happens, then celebrate kind of thing. Whatever it was, I couldn’t bring myself to say yes, which is a good thing since there is already something planned for that weekend. 

I had the same feeling standing in front of that display at Babies R Us. Do I buy it or should I wait until after her official birthday? After the discussion went back and forth in my head for a little while, another thought came in. Why not? Why not celebrate the most incredible first birthday ever? I know people think that there wasn’t a doubt she would make it to one, but I had my doubts. I know that the littlest thing could become a huge setback and not all of her heart brothers and sisters have made it to this milestone. This is huge. It’s more than just another first birthday. She had her heart re-engineered so she could live. We went through so much just to get her to eat and gain weight. Many hurdles, including an infection in her incision- which is also the first time I wondered if we were ever leaving the hospital – were overcome and here we are. 

I put the onesie and tutu into the basket. That last thought of what we have been through and what a miracle this truly is won over the doubt and fear. We made it. We made it because of prayers, love, and incredible doctors who worked together to help her thrive. We made it because she is so blessed and we are blessed to have her. 

I cannot wait to dress her in it.Image