I'm running out of words. Well, actually, there are plenty of words--the essays come spilling out of me at 4 in the morning while I stare into space willing myself awake and praying for my baby to eat. But those aren't the kind you share on the Internet. Sometimes when you're too honest, people get weird.
And frankly, I don't owe those people anything. I think it's important to remember that. But I do owe myself some things, and self expression is healing for me. I also think about the other mothers going through similar things now or in the future. The least I can give them is honesty and an accurate picture. Some of my greatest comfort these days comes from reading the words of other moms who have gone through the impossibly hard and made it.
The problem with that is, you have to write about the impossibly hard, too.
So here we are.
First, I'm tired. There's any mom tired, there's mom of a newborn tired, and then there's whatever crazy planet we're on tired. And that's WITH all the help flooding in from family and friends.
This is hard. I've done some hard things in life, but this has got to be the hardest. Watching my baby struggle like this is hard. While she isn't doing horribly (thank heavens), she isn't doing well. Sometimes it's scary. And for a mother, it's heartbreaking.
We, and usually I, feed her every two and a half to three hours (four at night), always for at least an hour, sometimes up to two at a time. She gets down 45-80 mls or about 1.5-2.5 ounces. We're supposed to hit a minimum of 15 oz total a day, but for a whole week we were well under that. She weighs 10 lb 12 oz, which is actually up from what she lost during our awful feedings last week. She eats as much as a NEWborn, as often as a newborn, with the skill and stamina of a premie, at 3 months old.
On good days she's observant and communicative, and her grins are HUGE. Happiness just streams from her. On the not so good days, her eyes are listless, her skin is pale, and her smiles are few. Sometimes she cries, except she doesn't have much energy to cry, so she either sounds like a normal baby who burns out really fast, or she just emits these barking, abbreviated calls of distress, because that's all she can muster. I've seen her hands turn blue. Sometimes she coughs and it sounds scary because there is fluid in her lungs. Always, when she breathes, her chest retracts because it's just so hard. And even though the doctors are watching her closely and she's on some medication which is starting to help a bit, I know and have a moment by moment visual reminder: this is no joke.
I have a special connection with this baby. I can look in her eyes and KNOW her. Sometimes, when she is struggling to eat and fussing and upset, we'll lock eyes and I will sing to her. And in that moment I see and feel her latch on to me for strength, desperately reaching out to me and pleading, "Can I do this?"
"You can do this," I tell her. "We can do this."
She believes me and pushes through. I watch her do it. There's nothing more humbling or inspiring than that. She is a warrior.
Some days, in between feedings, I fall on my knees and beg God for help. Often before feedings, and during feedings, I pray that she'll be able to do it. I pray for her, I pray for me. I pray for strength and for a bright future day when my baby girl can be just a baby girl. When we'll blow bubbles and buy headbands and go outside. When I won't fear every second that maybe I should call the doctor NOW and make him fix her!! Hurry, fast, before something really bad happens.
It's heavy. It's heavy and it's hard and it's sacred.
I remember hearing once that when George Washington was leading his farmer troops through the snow in the winter, they left bloody footprints behind them in the snow. I've heard similar stories about Mormon pioneers. People hurting and giving everything they can for a cause they love. Sometimes, I marvel that while I'm walking around in Target, there isn't a visible trail of my own bloody footprints marking my every step. Only it's my mama heart that's bleeding out--all the time.
I know. Dramatic. And I said I wouldn't vocalize my 4 AM thoughts. Sorry. To be fair, I don't go to Target at 4 in the morning.
But back to the sacred.
You know the cheesy and over-quoted Footprints in the Sand poem? The one where Christ tells the narrator He carried him through life's hard spots? It's less cheesy now, and more a living principle. Because no one can do this on their own. Because the only reason I can get up in the morning and face the day is because Someone Else gives me the strength and grace to be able to do it.
Do you know what's amazing? What's inspiring? What's incredible?
It isn't me.
What's amazing is how many people can come together to help you when you need it. How many people love your daughter with all their hearts, even if they haven't met her.
What's inspiring is learning first hand how, "The worth of a soul is great in the sight of God"
What's incredible is knowing your own limitations--your complete dead end, ain't goin' any farther than this, I CANT'S; and watching God redefine them by adding His CAN.
We're in the hard part. I know that. The success rate for these kids after open heart surgery is amazingly positive. Like 99%. Her defects are fixable. I thank God for that. She will learn how to eat, come off her oxygen, and be her happy, full-spirited self. We're just in the middle. In the middle with our eye on the horizon, trying not to get sucked down amidst the progress we can't see that we're making. While the whole time, God truly carries us. That is a truly sacred place to be.
"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. ...For I the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee." My all-time favorite scripture: Isaiah 41:10 & 13.
And an abbreviated version of this quote lives on my wall and is making its way into my heart:
"If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children! It is a plan predicated on the truth “that all things work together for good to them that love God.” So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever."