When Your Baby is Born a Little Broken

It’s 10:40 pm and everyone’s asleep and I should be too.  But I need to get this post out.  I have no idea if it will make sense but I need to write out the thoughts that have been swirling in my head for the past 10 weeks.

My daughter Olivia, as you know, has a congenital heart defect called Tetralogy of Fallot.  Think for a minute about all the times in your life when you’ve talked to a pregnant woman and you’ve asked her what she’s having and she’s answered you with the phrase, “I don’t care if it’s a boy or a girl – as long as it’s healthy.” 

Because nobody actually expects their baby to be unhealthy.  No one wishes for this.  No one.  It is devastating.  It rocks your world.  I think I’ve cried more in the last 10 weeks than I have in the previous 28 years of my life combined.  Becoming a parent means it’s possible for the pain your child experiences to be more painful than something that actually happens to you.

 

 

In the hospital, when we first found our about her condition and nobody was exactly sure yet how serious it was, I remember telling Chris that if God was going to take her, I wanted Him to take her now.  I didn’t want to fall in love with my daughter and then have her taken from me.  I wanted her to go before I’d made a bond, before I’d taken her home and showed her all her pretty clothes and her new room and made memories with her. 

Of course I don’t think that now.  I am forever grateful that I’ve been able to experience life as her mom.  She is the most smiley, happy baby right now.  She coos and is starting to “laugh” at us now and she squeals and kicks her legs when we make her happy - and it just makes our day!  I love dressing her in little outfits and bows and smelling her and kissing her sweet head.  Come what may, I’ve gotten to be her mommy and these memories are priceless to me and I am so grateful I’ve gotten to know her. 

 

 

Honestly? It’s hard for me to hear about people having healthy babies now.  I am jealous of them and their blissful birth stories.  I am jealous of people who get to simply enjoy their sweet, cuddly, snuggly babies without a pit in their stomach and the knowledge in the back of their minds at all times that a big, huge, scary surgery is looming.  Please don’t misunderstand me – I would NEVER EVER wish this on anyone else.  And I feel like a terrible, horrible person for even admitting this publically.  But that doesn’t mean it’s not hard to feel envious. 

I already have a friend in mind who I will call to pick out a funeral dress for me.  I mean of course this friend doesn’t know this – “Hi, you have great taste in black!” – but I know her style is similar to mine and she would pick me out something classy.  It feels so morbid to think about this but I remember reading a blog where the mom regretted wearing pants to her 9-month-old daughter’s funeral and it triggered something in me.  I want to look nice should that day come. 

I can equally picture her living and not living through the surgery.  Like my brain plays alternate scenarios all the time.  I imagine the surgeons coming out to say that it was a flying success and everything went perfectly and I also imagine them coming out to say that there was an accident and she’s not with us anymore.  Both of them seem plausible to me.  Is that weird to say out loud?

When I think about her not making it (I really do try not to think about that a lot) it feels like I am suffocating.  I have no earthly clue how I would survive without my daughter.  I think Luke and Chris needing me would be the only things keeping me here after that. 

 

 

I honestly try to cherish every minute with her – but sometimes that feels so overwhelming to me!  She has been a very fussy baby until very recently and I finally had to admit that it was okay if I didn’t enjoy every.single.moment.  That I was only human and you can love someone with every fiber of your being and still feel like going crazy when they’ve been crying for 45 minutes with no signs of stopping.  I felt such a peace when I was able to let that go.  But mostly I do make a conscious awareness to enjoy her.  I do something that I call “mental snapshots” where I force myself to pause from the craziness and noise and just consciously take in the moment and be fully present in it so I can remember it later.  I also make sure to journal about her when I can.

Sometimes when I am dressing her I can’t help but cry thinking about how very soon her chest will never look the same.  She will have open-heart surgery and they will crack open her sternum and she will have a big long scar on her chest.  Forever.  I know that it will fade over time but it just makes me sad that it will probably show a little even under the most modest of shirts and it makes me sad to think about her wanting to be pretty and having to deal with that.  And hoping that she won’t be sad when she wants to wear prom dresses or her wedding dress and has a big scar.  Of course I’m hoping that she’ll be so proud of her scar and the fact that it tells a story in her life and not be sad about it at all! But it is hard to look at her and know that her beautiful perfect skin will forever be marked. 

 

 

Sometimes I think about this big worry I carry around with me and I think, “Am I crazy? Am I overreacting?”  Because the rational parts of me do realize that her surgery should go well and everything should be fine.  The odds are definitely in her favor as far as medical advances, the overall “mildness” of her version of her defect, and the fact that she is being operated on at Yale.   I mean Chris asked her doctor point blank what her odds were of survival were, and he told us there would have to be an accident on one of the machines in the operating room for her not to make it.  But naturally all I can think about is one of the machines dying.  Or for whatever reason, her heart not beginning to pump blood again once the surgery is over.  Beyond that, he said that sometimes the electrical circuit of the heart is damaged during surgery and children have to have permanent pacemakers.   But I would blissfully take that if it meant she stayed with us. 

I’ve done some crazy bargaining with God – even trying to convince him that since we call her “Liv” a lot, He had to let her live since it was already in her name.  I am losing it! haha

And I will forever and ever be grateful that she is not in pain.  She is happy and relatively healthy and totally unaware that anything is wrong with her.  I don’t know how I would deal with it if I knew she was hurting every day – it would break my heart.  So I constantly give thanks for that. 

 

 

So now it is April 1st – we’ve been told since January that this would most likely be her surgery month, as long as she gained 13 pounds (their criteria for operating on babies).  Unfortunately, since Livi’s had really bad acid reflux the past 6 weeks or so (she’s even on a prescription for it), she hasn’t gained weight as fast as they wanted.  On April 3rd we go to see her cardiologist again and discuss surgery.  I have a feeling it will be next month instead.  Of course I want her to be as strong and healthy as possible for the surgery, but part of me – okay all of me – just wants this part of our lives to be over.  I hate waking up every morning and remembering that it’s coming.  In the beginning I kept having nightmares about her being sick and I would wake up only to realize that it wasn’t a nightmare – this was my real life.  So we wait to see what happens. 

But the thought popped into my head a few days ago that God already knows her surgery date.  I can’t tell you how much comfort that brought me.  He’s already aware of it and He will share it with me soon. 

One huge thing I’ve taken away from all of this is that when something bad happens to someone now, I don’t pretend that it didn’t happen to avoid hurting their feelings or making them sad.  It was so bizarre to me in the beginning when people would have entire conversations with me and never bring it up once.  Not sure if they were afraid I didn’t want to talk about it, or if I would start crying or something, but a lot of people didn’t bring it up.  Hear me: when someone is going through something awful, acknowledge their pain.  Don’t pretend it’s not there.  Give them the option of talking about it, even if it makes you uncomfortable or if you’re not sure how they’ll handle it.  They can always choose to say no, that they don’t want to talk about it, but then at least you’ve given them the option.  I’ve totally been there before, not wanting to offend someone, but I’ve changed now.  Being able to listen to someone in pain is a great gift to give them. 

Life is hard, you guys.  I’ve had a pretty blissful life, all things considered, so far.  I went through a period of being pretty angry with God over all of this, but it has morphed into just being sad (which I think God is definitely okay with).  Life brings suffering and there’s no way around it.  But the way I see it, there are really only two options set before me: get angry with God and become a bitter person, or trust God and see the beauty of life and stay bonded with Him through this trial.  I don’t want to be a bitter, angry person.  That’s no way to live.  So I choose to trust God and rest in Him and find peace in the words of the Bible and the truth that I know.

I’m going to be starting a Facebook page for her very soon so that people we aren’t personally friends with can have access to her information and surgery details for prayer.  I have had person after person tell me that their whole church or small group is praying for Olivia.  People I barely know have stopped me at the store because they’re a friend of a friend and want to know how she is doing and that they’ve been praying for her faithfully.  I am constantly humbled and honored by this, and so, so grateful! So I will let you all know when that is up and running. 

It feels good to finally have gotten the honest truth out there.  I’m so thankful to have this blog as an outlet, and I know there are many of you out there reading who have been praying for Olivia, too.  Thank you from the bottom of my heart!!