A very special post

I have been meaning to write this post for some time. But things always come up, other things that I have to say as they unfold in my life. Life has simply been so hectic and unpredictable during the last few months, especially during the last few weeks, that I have been unable to write it. But I am ready tonight.

This post is for, and about, my mom, Hanna.

Sometimes when people mean the most to you, there are no words to say thank you. No words to express the impact that someone has had on your life, even when the impact has been by far the largest and the most complex. In this case, this person in my mom. This person that I value so much, that I often cannot express the magnitude of my gratitude to her.

Being the mother of a CF child is unlike anything imaginable. Not that I know what it's like. I don't. My baby is healthy. I have not had to go through what my mom and dad did when I was little. It's something that I think of now, as a mom, and marvel at. How did they handle all that was to come, all that information, all that lack of information?! But they did. And my mother has always been my biggest advocate. Relentless, persistent, and dedicated. To me. Making sure that she did all she could to keep me on top physically. To this day, even though I am an adult, with a child and husband of my own, she is there to pick up where she left off when I left home and started an independent life. Her dedication now, is the same, if not more, to the cause of getting me to my lungs, and taking care of everything else along the way. Right now, my mom is taking care of the most precious thing to me, Scarlett.

For many mom's, if not all mom's, leaving your baby at home while you are away for an unpredictable amount of time, is unthinkable. For me, it was unthinkable too. I never thought it would come down to me having to wait this out away from home, and away from my family. The task has been made easier, knowing that Scarlett is with her babcia (grandma in polish) Scarlett is infatuated with my mom. She loves her. You can see it, and it's incredible. Anyone else, and I would be inconsolable, that it is not me the apple of my daughters eye. But since it's my mom, I can handle it. I see how they look at each other, and it makes me feel comfort. Scarlett is just so loved, and so in love, that I can somewhat put aside the pain that I feel being away from her. They are like pals, like buddies together all day. This is a bond that Scarlett and my mom will have for life, and it's very special.

The decision to have my mom help us with Scarlett all unfolded is a fairly natural way, as it became more and more clear that I was very sick during the beginning of this year. Things changed quickly, and Scarlett was on her way, and we were faced with some choices regarding how we would manage a baby, me possibly being in the hospital or waiting for tx (or both) and Martin still having to work. We thought of a nanny, and that was the plan for a long time, until I got more and more sick, and the thought of our child being with a stranger 24/7 was incredibly unsettling. My mom told us from the begging that she would help, and we would have to figure out a way to do that, but I don't think any one of us expected how sick I would be, how quickly, and how little I could do not only for an infant, but soon for myself.

The fact is my mom has given up her career that she loved, and completely dropped her life, and within a split second was living with us taking care of me before Scarlett even arrived. It was a shock to her, I know. My dad also had to make adjustments being alone so much, and selling their house in order to move to the city where we could all be close. In time things settled down, but the adjustment for everyone was huge. It was so hectic, and of course in the middle of it all, I was getting worse, and waiting for these lungs.

So my mom dropped everything, and now runs my house. She takes care of Scarlett all day long until Martin comes home. He does night duty, unless he comes here to the hospital. Everyone is on a rotation with visiting me, so that I don't have to be alone too much, so it's crazy. But we manage, and I think we do a great job. But at the heart of it, is my mom. Making sure my daughter is thriving, and doing her best to keep me involved in every little Scarlett moment. I know how hard life is for my mom. Seeing her daughter this sick. I don't envy her. I keep reminding myself, that I am her Scarlett, and she has to see me suffer, so much. And the way that must ware on a person, over 30 years, it's hard to imagine. I keep having to remind myself that my mom has to fight the sadness in her, and take care of such a bright and happy little creature that is our Scarlett.

In an way I know Scarlett brightens her life right now. She is such a happy baby, and I am so glad she keeps everyone occupied and our minds off the difficulty of what we're dealing with. It's incredible what a baby can do! And she has no idea she's even doing it! But I don't have any doubt that her happiness, and well being are all directly a result of how well my mom takes care of her. Martin tells me all the time, that we have the most loved and cared for child in the world. He too is amazed at how much my mom does, handles, and how well she does it. I am in awe of all that this woman can do, even with all that's going on. It's incredible.

So even though I am terrible at saying it, I have here a way to express it. I write better than I speak. And at a time when I have less energy than ever before, this blog is the outlet I use most to let the world, and those I love, know what is inside my heart. My mom is my most dear friend, the smartest woman I know, and loves me more than I will ever know. I know this for certain, and will never forget all that she did to get my family to the other side of this.