Monday, December 7, 2015

What Lies Ahead & Wishes for B

I don't think people like to read posts like the one I'm about to write. But I need to write it. Writing has always been a form of therapy for me, so I'm hopeful that by getting the words out on paper there will be some relief. Or a sense of peace. Or at least acceptance. We'll see. I never know what words will come or what catharsis will ensue until I'm done. But if you're looking for a positive post, this probably isn't it.

I'm 34 weeks and 4 days pregnant with Bridget. She's due in exactly 38 days. 5 more weeks and 3 days. But the reality is that she could very well come any day between now and then. And while we all hope she doesn't arrive until at least 39 weeks, she seems to have her own agenda and we're just along for the ride. She'll be here when it's her time.  The only thing certain is that within 6 weeks, she will be born. And as that time frame gets smaller with each passing day, my thoughts shift from worrying about keeping her in as long as possible to what will happen once she is here.

Since August 31st, my 7th wedding anniversary, when we learned we weren't having a "healthy" baby, I've longed to simply meet her. For weeks I checked viability charts to see what her odds of survival would be if she were to be born at that given time. I'd pray for her to stay put one more week. I'd wish for my amniotic fluid level to stay normal and for her right kidney to stay strong and healthy. I hoped the left kidney would stay as is and not worsen from appointment to appointment. And those things have happened, more or less.

Born today she would still be considered a premie. A NICU stay might occur. But she'd likely be OK. I've personally had two friends deliver at 33.5 and 35 weeks respectively and their babies had a rough start but are doing great today. So I know that I'm past the point of worrying about initial viability.

So my worry has shifted. Bridget will be here soon. By looking at her you'll not know she has a birth defect. I'm told she won't look any different from a healthy baby. But from what we can see on the ultrasounds, she's not "healthy". She will be born with a health concern, and it is one that we don't yet know where it will lead.  And I am so scared about how that will unfold.  **tears are now flowing as I type***

There are so many unknowns about her condition and the treatment and the tests. The doctors are focusing on getting her here, which obviously is step number one.  It's a key step, without which none of the rest of my concerns matter.  So yes, I'm glad all hands have been focused on watching my health and her stability on the inside. But then what? She's born and we need to monitor her number of wet diapers. If they are normal then we get to wait until she's the ripe age of 2 weeks old to go to CHOA for extensive testing on her kidneys to determine function and an actual diagnosis. The limited research I've allowed myself to do on theses tests has frightened me. My two week old will likely be sedated. I lost my shit when Julian, at 4 months old, had to have a beanie cap tied around his head and lay still as a laser took measurements of his head. There was no sedation or strapping him down and I barely made it through that 5 minute ordeal.  Bridget's test will be much more invasive and scary. I don't know how to prepare for that. I don't know how to stay composed and strong for her.

And then we are given a firm diagnosis (I hope). And we've already been told it will require surgery. The hope is that we wait until she is 6 months old for the surgery to be performed. We don't know yet what the surgeon will be doing, but there is one thing I do know. Surgery requires anesthesia. On a baby.  MY baby. And there are risks and complications and as an attorney I know there will be release forms that have to be signed prior to the surgery. One of them will say something to the effect of, "By signing below you acknowledge that all surgeries contain some level of risk including [insert laundry list of bad things] and possibly death."

And I know what you're thinking: Stay positive. Don't jump to the worst case scenario. Rely on God and know that he will get you through and protect her. Don't put negative thoughts out there into the universe. Surround her in white light.

I get it. I'm typically one of those warm and fuzzy type people. I like to live my life with positivity. I've said the phrase "Everything happen for a reason" before. I want to see the good in all things.

But the reality is that death happens. We are ALL going to die. And we don't know when that will happen. But it will happen. For all of us. Including our children, which is a terrifying thought. I know that any one of my kids could be killed in a car accident or freak accident any day of the week, and yes we have to continue living our lives every day without being paralyzed by this fact. So some would say that I should view Bridget's kidney defect and surgery in the same light. But I can't. Having surgery has inherent risk above and beyond every day living.  There is no guarantee something won't go wrong. And the thought scares me and brings me to tears.

Yesterday my girlfriends threw Bridget and I a sprinkle shower. It was a lovely afternoon and I am truly blessed with great friends. The hostesses know me well enough to not plan any party games, but they were thoughtful and had everyone fill out a card with "Wishes for Bridget".

I hope love __________; I hope you laugh __________; I hope you never forget __________; I hope you become __________; I hope you aren't afraid _____________; I hope you have __________; I hope you grow ___________; and I hope you learn _____________.

I sat on the couch last night and read through all the cards. I hope you love with all your heart. I hope you laugh often. I hope you never forget how much you are loved. I hope you become confident.  I hope you aren't afraid to speak your mind. I hope you have a great sense of humor. I hope you grow slowly and confidently. I hope you learn to take chances.  Some were funny, others were sweet and all were heartfelt. I was already so touched by them, but when I got to one of the last ones, I was brought to sobs. One of my dearest friends wrote down the one thing that I too wish for B.

I hope you have time.

It may seem like a bizarre thing for someone to hope for a soon-to-be new mother's child, especially at a baby shower, a day meant to be full of celebration and joy. But it was so real and so honest. And unfortunately it comes from a mother whose baby didn't have time. We all know life is a finite amount of time. Yet I think most of us assume we'll always have more time. We take our days for granted. We take our loved ones for granted. And none of us want to think that our baby will be the one who doesn't have the one thing you can never get more of once it's gone. I watched as my friend lived out the nightmare of losing her son Marco to cancer. He wasn't even 10 months old. He didn't have time.  And none of us know how much time we will actually have here.

And this fear and unknown of how much time I'll have with B is what I'm struggling with. I want her in my arms, yes. But I want to watch her grow up and live a long, loving life. I want her to have time. It is the one hope I have for her. So please, pray for time. And hug your loved ones tight tonight. Call that person to say I love you or I'm sorry. Live in the moment and love with your whole heart. Because we don't know how much time we're allotted here. So embrace the time you have.

And to my sweet Bridget:

I hope you love without fear.
I hope you laugh often and with a big ugly laugh like your momma.
I hope you never forget the joy you bring to those around you.
I hope you become a confident and passionate woman who cares deeply and beats to her own drummer.
I hope you aren't afraid to change direction when the path you're on is no longer serving you.
I hope you have time.  So very much time.
I hope you grow strong and healthy.
I hope you learn that kindness and love are the most important things in this world. So spread them both openly and without expectation.