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Maybe It’s just me

Today we were going to have a party celebrating Isabelle’s homecoming. The weather had other plans and being cautious, we decided to postpone to next week. Another snowstorm was making its way to our region so better to be safe and reschedule. Of course it’s only raining in Plymouth, not a snowflake to be found. Kind of sums of how I feel about my existence today – gypped.
Yes, self pity. I have lots of it. Some days it feels like I am having entire conversations with myself trying to steer this ship of crazy thoughts. I walk a fine line of feeling sad about our situation and then grateful that we still have her with us. It’s almost like having a multiple personalities – one is angry and bitter while the other sees good in what has happened. My hope is that eventually the one that can see goodness prevails. I try to feed that wolf, so to speak and starve the other one. Unfortunately, my tendency is to always look at the worst possible scenario so guess which wolf ends up on top.

Today I am taking everything personally. Right now as I sit here on this couch, I feel like “What the f@ck??” We signed up to for the heart walk and set up a team page. I sent emails about the walk, mentioning how important research is for our daughter. My husband posted stuff on his page about the walk. Crickets. It’s like I am hearing crickets when I look at our page. Trust me, I know it’s early and believe me when I tell you I plan on beefing up marketing on this but it still makes me sad to know that our reality is just that- ours. People have lives. Some may not have checked their email or even saw our posts. Some may have thought about it for a second, and then had to do something else and forgot. I understand this in my head, but my heart feels like at the end of the day, we are alone with this. Other people can close the page out and be with their healthy children. I wish we could do the same. I wish I could close this window. I guess that is where this is coming from. I wish we didn’t have to walk, but we do.

There is a good chance she will need a transplant eventually. The research that is being funded now is trying to find a way to build vessels from stem cells, and helping the heart muscle regenerate. Through research, our surgeon has found a way to grow a left ventricle so that a transplant is not in the child’s future. Unfortunately, Isabelle’s heart is missing too many component so she doesn’t qualify. I sent him an email about it and he told me that he was sad that he hasn’t found a way to help HLHSers like Isabelle but he is determined to find a way. He can’t do that without funding from groups like the Children’s Heart Foundation.

Here’s the thing- I am feeling guilty for being disappointed. I’m angry that more funding goes to pediatric cancer and not enough goes to congenital heart disease. I’m frustrated when I see someone like Shaun White promote St. Jude for cancer research while he has a zipper just like Isabelle’s on his chest. I’m frustrated that there is a misconception that surgery cures the condition. It doesn’t. The treatment for hlhs right now gives Isabelle a 50% chance to make it to adulthood. That’s it. I should not feel bad about wanting her to have a better chance than that.

Funding for any disease is important. I get that. At the same time, I would love to see the same amount of awareness for heart disease as there is for cancer. During the week for Congenital Heart Disease Awareness, I saw more commercials about the Avon Walk for Breast Cancer than any thing else. There wasn’t even a commercial or PSA about congenital heart disease. Its all about Wearing Red. On Facebook, people are much more interested in their conspiracy theories about gun control than my posts about CHDs. Is gun control going to kill your child? No? Well….then I don’t know what to say.

The research that has been done so far has allowed my daughter to make it to six months. I am so grateful for that. Yesterday she rolled over for the first time. Honestly, I never even imagined that was going to happen. Her heart disease has given me an appreciation for every little smile, every giggle, every cuddle that I never thought possible. Here is where the positive wolf comes in. I see the blessing that we have received from this terrible disease is a deep appreciation for the the little things. We live each day to its fullest, and enjoy every minute we spend together as a family of five. I want there to be more milestones to achieve. I should not feel guilty about being passionate about making that happen. Any parent would do that for their child.

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Sunday morning

I don’t always get a moment to sit and write an entry, at least not as much as I would like to. Between feedings, meds, keeping Addie away from sharp objects and driving Liz somewhere, we don’t have a lot of down time. Right now, it’s snowing, Addie is watching Jake and the Neverland Pirates and Isabelle is sleeping. Have my coffee and thoughts over the past week or so. I am all set!

We are trying to increase Isabelle’s feeds so we can (well- Chris can) get more sleep at night. Instead of 120 ccs, we went up to 150. The experiment was declared a failure after numerous bouts of vomiting. We decided to go to 130 and bring it up slowly. Yesterday was also Isabelle’s first taste of cereal. She did manage to swallow about a teaspoon and got the rest all over her face and in the folds of her neck. I was happy it seemed to be a little more successful than when we introduced cereal to Adeline. Dr. Lightdale suggested we start with rice for a week, then introduce a new food each week rather than the usual 3-4 days. Isabelle has proven she needs to take things slow which makes this process even more challenging. The pediatrician would like to speed things up and get her eating more like a 6 month baby. I would too but then we have a lot of laundry to do whenever we try. She can’t handle it. So that’s that.

This past week has been Congenital Heart Disease Awareness week. I posted pictures, a few facts and had our story posted on a few heart mom blogs. Awareness and knowing about heart defects is important to me, not just because of Isabelle, but we had absolutely NO idea what she had. I had never heard of Hypoplastic Left Heart Syndrome and had no idea defects like this existed. We also didn’t know where to turn because the American Heart Association doesn’t have much information about congenital heart defects, and Google just gives you BAD NEWS. It was ugly for a few weeks until I contacted Sisters by Heart. After that, the world of CHDs opened up to us and we felt better knowing we were not alone.

Heart defects are the number 1 birth defect, but there is little information given to expecting parents about them. One mother who lost her baby girl because of a CHD wrote to the author of the What to Expect books, asking her to have more information than a small paragraph about the possibility of having a baby with a heart defect. For something so prevalent, there is very little about it and that I found very frustrating.

I wore red for Isabelle, and for all the babies I have gotten to know in the Heart community. I thought of Rowan, Gabe, Anya, Hayden, Seren and others who were taken too soon from their parents. We have been beyond fortunate with Isabelle. Most of the time she doesn’t look sick. The surgeries have made it so that she can live, they did not create a ventricle where there wasn’t one, or cured her disease. I consider each day ‘borrowed time’.  

Awareness is also important when it comes to our relationships with other people. I have had my struggles with people stepping away once we were diagnosed. I even had people say to me “I had to stop reading your facebook posts- it was just too much.” Support from friends and family has carried us through so much this year, we cannot thank you enough. 

My goal for this year is to create some kind of foundation that donates to multiple charities instead of just going to one. Research and support for families are important to us and I want to do what I can to give back. I would love to be able to walk into our local ER and not have to worry about having to educate them. So much to do and hopefully, I have a lifetime to do it in!

 

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Statement of Faith (or lack thereof)

One of my heart mama friends is posting various commentaries written by other mamas on specific topics to raise awareness for Congenital Heart Disease this week. The topic I wanted to write about is how the diagnosis of CHD affected my faith.

There is a story in the Old Testament about a woman named Hannah who was childless and prayed for a son. She went to the Temple in Jerusalem (I think- I am assuming it was there because…well….there was only one and that was it) and pleaded her case  to God. A temple elder thought she was drunk and scolded her but when she told him why she wept, he softened and prayed with her. She promised that if she were to get pregnant, she would dedicate him to God.

I prayed in synagogue when I was pregnant with all of my children. I made my own promise of dedication in exchange for healthy babies whom I would love. On March 5th, God gave me His answer. Hypoplastic Left Heart Syndrome. My baby would not live without surgical intervention. It still takes my breath away.

Here’s the thing- for most people, CHD brought them closer to their faith. For me, it had the opposite effect. I was (still am most days) angry. I want to know why He gives mothers babies and then takes them- through no fault of their own. I want to know why he has given me the good chance that I will outlive my daughter, that she has a 50% chance of making it to adulthood. Why would He do this to me and countless other people?

After seeing another mother lose her baby after receiving so much hope, I lost it. I couldn’t bring myself to say that I would send prayers to people who asked for them. I am afraid to. I feel hypocritical doing so. Part of me ‘wishes’ that the child recovers or the parents receive the strength they need, but I cannot formally pray. I try. Especially for the mamas I have come to know and love, and whom I know believe so I want them to get what they need.

I had faith until it became clear to me how much I had to lose. Isabelle’s middle name is Faith. When I was terrified of what we were getting into after her diagnosis, I wanted to remember what would hold me together in spite of my anger. Sometimes it occurs to me that we were chosen to have Isabelle. She is such a love and has blessed my family in so many ways. She has shown me a strength I never knew existed in myself. In those moments, my faith comes back for a little while until the fear creeps back in.

My hope is that once again I will get to a better place with all of this and be able to open my heart to the God I loved. There was a time I really believed that I was the daughter of God and He loved me. I wrote it in my journal after struggling through my first year in sobriety after hurting so many people including myself. I felt so awful and my good friend told me that I shouldn’t be so hard on myself, that I was loved by something greater than me. It helped me get through some really down days when I could barely look up from the sidewalk. . I had faith until it became clear to me how much I had to lose.

A very wise woman once told me that faith is the absence of fear. I know she is right.