Here and okay.

14 Apr

When J was a tiny baby, spending the first three and a half months of her little life in the hospital, I experienced dread, despair, agony and anxiety, almost on constant rotation. I took meticulous notes each day about her weight, her input and output, her vitals, even down to who our nurses were. These were my only toeholds in what felt like a river rushing around me. Looking back on that time, it all feels like such a blur, but one moment, one feeling, does stand out. A single flower in a field of weeds.

It was, I believe, my second time visiting her. The time when, two days after my c-section they wheeled me for the second time across the street to the Children’s NICU and I held her for the first time. And I was just filled with this sense, this deep knowledge, that she is here now and everything will be okay. No matter what we have to face, she is here now and everything will be okay.

In the weeks to come, as we waited for her surgery day to arrive, I faced simultaneous feelings of desperately wanting the day to come so we could just MOVE ON already, and then desperately wanting to delay my tiny infant going under the scalpel again. I remembered back on that very kumbayah, “it’s all good,” life-is-wonderful moment of clarity and though, WTF was that. Where did that come from? Everything might not be alright. Why did I believe that so deeply, for even a moment?

But in fact, whatever creeped into my soul that day and whispered those words to me was right. J is good, guys. J is great. Her central line was removed last June, about ten months ago. She’s now eating solid foods three meals a day, drinking regular old whole milk from a sippy at every meal, just being a normal kid. She does still have a g-tube (hope to get that out next month) and struggles with bacterial overgrowth but these are minor, minor things.

She loves… walking outside. “‘Alk! ‘Alk!,” she’s always asking. She is almost unbelievably good at learning songs and picks up on beats and words and melodies and sings them back to us. Al Green. Peter, Paul and Mary. Bruno Mars. Her vocabulary is exploding, every day. She hears a plane in the sky and says, “A pane!” And even despite the overgrowth (which, let’s just say can cause frequent bathroom trips), she’s been potty trained for a few months now and sometimes says “Oh gosh!” when sitting on the potty. She’s feisty as hell, her favorite word is “no,” and she will be TWO years old next month (though sometimes it feels more two going on twelve).

Part of me can’t believe that, while even more of me is like yeah. Totally. This girl was meant to be. She hung on through one month in the freezer, a transfer, she implanted and then survived a river of bleeding when we lost her twin, she grew like a champ in utero despite her gastroschisis, she survived months in the hospital, two major bowel surgeries, almost a year on IV nutrition, a month of vomiting before we diagnosed her overgrowth. I mean this girl’s a fighter and she doesn’t even know it.

She’s a fighter, she’s a champ, she’s a force. She is here. And everything is okay.

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13 Responses to “Here and okay.”

  1. cassiedash April 15, 2015 at 2:34 am #

    I don’t think I’ve ever commented here much, but it’s good to hear from you! And I’m so glad J is thriving and everything is okay, just as something inside of you knew it would be very early on. Can’t believe it’s been nearly two years! Happy early birthday to your girl!

  2. Courtney April 15, 2015 at 2:39 am #

    Hooray!!!! What a great past to find in my reader tonight! Healthy kid, happy mom, joyful hearts!

  3. jjiraffe April 15, 2015 at 3:27 pm #

    What a lovely post. Glad all is well! 🙂

  4. nonsequiturchica April 15, 2015 at 4:58 pm #

    Glad all is well! It sounds like J is a fun little girl!

  5. Amanda E. Perrine April 15, 2015 at 6:19 pm #

    I am so happy to head how well she’s doing. I can’t believe our babies will be 2 next month.

    readingeachpage.blogspot.com

  6. Trisha April 16, 2015 at 5:25 am #

    I seriously can’t believe she is potty trained. What a rockstar! You’ll have to give me tips.

    • Shelley April 16, 2015 at 10:58 am #

      Trisha – we used the e-book Oh Crap! Potty Training and it was really great. The first week was tough but once it clicked, we’ve had very few accidents. Still waiting on night & nap though! But yeah – I’m so proud of her! And she is so proud of herself. 🙂

      • Trisha April 16, 2015 at 10:45 pm #

        I’ll have to check it out! J is such a cutie, her pictures always make me smile.

  7. Stephanie Pollard April 18, 2015 at 5:07 pm #

    Hi, I always wondered if you changed her nursery when you discovered he was a she? Or did you decide the decor and the astronaut poster applied to J’s challenges all the same? She is indeed, a brave little space pioneer. So happy to see her beautiful face.

    • Shelley April 18, 2015 at 5:08 pm #

      Hi Stephanie, no we didn’t change it a bit, though we did end up moving from that house so her new nursery looks totally different now! But we loved those stars too much and they were way too much work to change!

  8. Alissa S April 19, 2015 at 8:45 pm #

    I can’t believe she’s almost 2! Time flies. And I am so happy you are all doing well and you are living the good life after everything you and she has been through. Your story is one I think of often and I was smiling to read this latest post. Give us more! Maybe a picture?

    • Shelley April 21, 2015 at 12:23 pm #

      Ah I feel weird about pictures here! Not sure why. Find me on Insta, Snapchat or FB though for lots of J goodness. Email me!

  9. Lisa April 25, 2015 at 9:13 pm #

    I remember first learning of your “son’s” diagnosis and imagining how terrifying it had to be. Then, my second born faced unimaginable obstacles of her own. I love seeing happy updates like this! It gives me such hope for my daughter! Congrats on weaning from the g-tube! Sounds like she is doing so awesome!

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