I find comfort in reading other Heart family's stories of becoming and being a "heart family" and just wanted to share my own below.Many families will say or think "I don't know how you can do it. I don't know what I would do if I were you." In reality, when you become a heart parent, you just do it. You don't take it as an option and you are definitely not going to consider quitting on your child, even when you believe this road will swallow you whole in the next second. Becoming a heart family you are given the opportunity to grow in a special way. You are able to watch your heart child become the unique individual they are meant to be under circumstances they know no difference from at such a young age.
It is not convenient or what we necessarily planned.
The first time I balled handing our 6 week old daughter over to strangers for her first OHS, and the second surgery when she was 11 months old I was so numb to those feelings that I rather stood there in disbelief that our family would be going through this again. We have given her to a surgeon who wasn't even sure what he would be able to do until he physically saw her heart. We waited hours to hear the best news ever, "everything went as planned. She did great and you will be able to see her soon." The numbers of surgeries you see your child go through while you merely pace the room feeling hopeless, knowing that you allowed this to happen. To the consecutive days you will spend cooped up in a hospital watching your child recover from an 8 + hour open heart surgery. To the room next door getting a 'code blue' and doctors and nurses running to them - you take the deepest breath possible, squeeze your daughter and husband's hand a little tighter, pray, beg, and thank Him for it not being your room. That was the day that I looked deep down within myself and said I wasn't sure if I was going to be strong enough to do this. But I was. And we conquered it as did that child in the room next door.
I've been asked if you could change one thing about your life what it would be. I looked at a room full of strangers with tears forming in my eyes and said that although our daughter's heart defect has been the hardest thing I have gone through so far, I would not change it. And why wouldn't I change it? Because it has made our family who we are. We were given the biggest gift of life and I can't change His plans for us but rather, I can show the world good from it. There are a lot of additional appointments that initially are overwhelming but then just become part of your routine. I appreciate that time now because it allows me to be with our daughter and grow our bond in that special way I mentioned earlier. We get to go on more lunch dates than we probably ever would. I get to listen to her to babble in the back seat with less than a care in the world talking to her doll about puppies and ducks. I get to see life through her eyes and realize how truly amazing it is. She shows me how simple life should be and how happiness is truly within and not from materials. I lean on her more than she will ever realize.
It has brought my husband and I closer to each other than I ever could have imagined. When I was down, he would lift me back up and I would do the same in return for him. We've had our differences as all couples do, but at the end of the day, we are always standing there next to each other watching our daughter grow in to the beautiful 2 year old she is becoming.
There isn't a day that goes by that I don't worry because of her heart defect. I have thought about things that no parent should have to think about when their child is so young. We have read papers and have been told the risks to surgeries that parents should never have to even consider looking at, much less signing for. We have learned more about the heart than I ever thought I would know. But at the end of the day, I still wouldn't change it because our daughter is one of the best gifts we have ever been given. We don't know what our future holds, as do not other families even those without a heart child.
* To our daughter: Your strength and beauty has inspired me to become the person I am today. You're diagnoses has taught me to be grateful for you every day that I get to pick your smiling face up in the morning and you say "mama". You have molded me in to the Mom I am meant to be. You have taught me to be an advocate in a world I was a complete stranger too. You have given me more smiles and laughs than I can ever return.
Your simple happiness blows anyone away. It is hard to remember you without having that scar at the center of your chest. But it reminds us of your strength and how resilient and brave you are that you don't even realize you portray. You remind us of the good in the world, and to smile every day, and to take every second in life with praise. So thank you for being my inspiration to become not only a better person, but a better Mom. I love you my brave, sweet girl.