I try to remain positive. I really do. Most of the time, I can look at our journey as a learning experience. I can see how the heart and spirit of our family is growing each and every day. I can look at how much Sawyer is loved and supported already and smile.
There are times, though, when I can't see past my worry or even my resentment. I would be lying if I said this experience hasn't put unexpected stress into our lives -- stress much different than the stress of regular pregnancies.
The biggest strain I have felt has been the strain on my relationships. There are times where I feel so angry with people who complain about their problems. To me, their problems seem so small. Honestly, the next time I see a new mom crying over their baby getting a couple of shots, I might vomit. Poor baby, they say. My baby was so tough today... she only cried for 10 minutes. It shouldn't make me angry, and it's not fair for me to feel that way, but I can't help it. A couple of shots?!? My baby will never know a life without needles. My baby will NEVER know what it feels like to be healthy. I have to constantly remind myself that it's all relative. A couple of shots really might be a big deal to some families and that's so amazing. I truly hope they are forever grateful for that and I would NEVER wish our problems on anyone else. It's just hard for me to stomach sometimes.
I occasionally find myself feeling completely alone, even when talking with my family and closest friends. The people who are supposed to understand... they just... don't. And it's not their fault... it's really not. They can't possibly know what it's like to be growing something so perfect, but knowing the struggle she will endure. A struggle that no one should have to endure. They can't know the worry, the apprehension, the grieving. I wouldn't expect them to. They can't know the thousands of places my mind goes at all times. Doctors, hospitals, medications, NICU, PICU, CVICU, statistics, norwood, glen, fontan, interstage, feeds, tubes, lines... all of this on top of the regular worries of the house, the dogs, dishes, laundry, dinner, finishing the nursery, maintaining our lives. I find myself feeling so alone when people tell me, "It's all going to be okay" or "Just wait til you get to snuggle your little girl." Even my husband will never fully understand what it's like to be in this situation... to be a heart mom. It is no picnic.
What do I do when I start to feel this way?
Sometimes I sulk. I watch a sad movie, gather up some chocolate, and just sulk.
Most of the time, though, I try to remind myself that we were chosen for this... that this was no coincidence. It was fate.... destiny. Nobody knows what causes HLHS. It was nothing I did... I did everything right and this is still our journey. Why? Because we can handle it. Because even though it's not all rainbows and unicorns, God knew in His heart that we could handle this journey -- a journey that hundreds of thousands of other parents could never endure. God knew that Sawyer would be born with half a heart, and He had to find a family that could make her feel full. A family that could give her the life that she deserves, the care that she requires, and the love that would take her half heart and make it whole. I'm not saying this has been easy. There hasn't been an easy moment. When I feel resentment toward others who have it "easy" I just have to remind myself that, though this is hard, the reward is so amazing. The reward is a greater love and appreciation than most people will ever have the chance to experience. The reward is in celebrating EVERY second that our miracle lives. The reward is celebrating EVERY milestone that we were never promised. The reward is in witnessing the love that people have for Sawyer already, a love that is sure to grow.
It's not all rainbows and unicorns, but I truly believe that every gray cloud has a silver lining. And our silver lining is SO worth the clouds.