Books

There are so many things about Jacob at 15 months that I never ever want to forget. The way he gets down to Wiz Khalifa’s song “Black and Yellow.” His inexplicable obsession with taking the potholders out of the kitchen drawer. His laugh that’s really more of a bark/scream and yet is utterly wonderful. How he hugs all his little friends when he sees them.

Of all the things I want to remember, Jacob’s love of reading is easily in the top ten. Sometimes I will find him in his room, by himself, turning the pages and exclaiming at his favorite pictures. Other times, he will bring a book to his dad and then run to snuggle up in his lap, ready to hear his favorite stories. People, I am so lucky to be this kid’s mom.

Excuses

It has been a long time since I have published a post. Months. The longest since I began this blog.DSC_0361

Here are my excuses.

  1. Jacob has been doing great. This is the happiest reason to not publish. We haven’t been to the hospital since I can remember. If you are reading this, please shout hallelujah and knock on wood at the same time, just to cover all our bases.
  2. I have been doing lots of writing outside of this blog. I have the great fortune to be working as a freelance marketing coordinator for Big Sea. I can’t even tell you all how lucky I am to have stumbled into this job. I work for and with amazing people who live their values. If you need marketing services, you would be foolish to hire anyone else.
  3. I have a 13 month old at home. He’s walking. He has figured out how to open doors. I no longer sit down.

But, enough with the excuses. It’s time to ramp up this blog again, because it brings me great joy to talk about my little ray of sunshine, and because my mission – to become a resource for other citrullinemia parents – has not wavered.

Also, I know a whole heck of a lot more about blogging now. And I might as well put that to good use.

Rare Highlight: Learning to Sit

Today’s Rare Highlight post comes from Anne, the mom of a little boy with the rare disease Atypical HUS. Atypical HUS is an extremely rare genetic disorder that often causes kidney failure, among other complications. Like so many parents of rare children, this mom is handling her son’s medical journey with such grace.

Anne describes the feeling of sitting and waiting so beautifully. If you know me at all, you know that sitting is not my strength. Waiting even less so. Part of being a parent, though, rare or otherwise, is to learn to do difficult things for our babies.

Read her post here: http://sassyhaven.blogspot.com/2015/09/learning-to-sit.html

A letter to Jacob on his first day of high school

Today, the students at Shorecrest go back to school. If you had asked me last year, I would have predicted that, at this moment, Jacob would be in daycare and I would be standing in front of the classroom, overwhelmed by the barrage of new faces but excited about a whole year of possibility ahead of me.

But I’m not. And while I miss the nervous energy of that first day of school, I am also humbled by and grateful for the awesome new responsibility I have taken on – a responsibility now sleeping peacefully in his crib but soon to wake and loudly demand food, playtime, and love.

One day, Jacob will start high school, and I may be right there in the building with him greeting a new set of students (poor kid). Here is what I would like him to know on that day.

Dear Jacob,

As you are reading this, it is your first day of high school. But as I write, you are almost seven months old and sound asleep in your crib. I won’t even try to imagine the 14-year-old you – what you look like, what make you happy, what dreams you have – but I want to tell you what I know to be true at this moment that will still be true in 2029.

Just a few days ago, you figured out how to maneuver from sitting up to crawling and back again. I was so proud I couldn’t stop smiling. I don’t think it’s possible to be more proud of you, but I am willing to bet that time will prove me wrong. Jacob, everything you do is amazing to me. I want you to know that, no matter what the first day, or second day, or 263rd day of high school might bring, that will never change.

You just woke up, so I need to end this letter and go pick you up. I know that as soon as I walk in your nursery you will give me a huge smile and everything will be right with the world. Keep smiling, sweet pea.

Love, Mama

Four Month Pumpiversary

I have now been exclusively pumping for a little over four months. That means that I have hooked myself up to my pump about 850 times, and have spent approximately 220 hours or nearly 9 solid days attached to my trusty Medela Symphony. It also means that I have earned this awesome award…

4months

Do I think about quitting? Yes, all the time. I fantasize about throwing my pump off the Sunshine Skyway Bridge bringing my pump back to Walgreens and being done with it. I am still angry that citrullinemia stole my nursing relationship with my baby. Some days I can’t stand the thought of washing and sanitizing yet another bin full of bottles and pump parts. The reason that I keep attaching myself to the pump day after day is complex. Yes, it’s love, but it’s also pride, determination, and I imagine a healthy dose of biological imperative. At the end of the day, I have this sweet face (and those chubby thighs, nom nom) to show for it. And so I keep marching on.*

*Figuratively, of course. The cord on the pump is only a few feet long so I can’t really march very far 😉

Thirty

Today’s post is about me. Which of course means it is also tangentially about Jacob.

I woke up this morning into a new decade. That’s right, I turned 30. And for a brief moment I panicked. Where did my 20s go? What have I done? And does any of it matter? Is my circuitous path actually leading anywhere?

As I was having this existential crisis, this picture came up on my timehop:weeki wachee

It’s from three years ago, on my 27th birthday. We were getting ready to move to New York City, where I would earn a masters degree in education leadership. Before leaving Florida (we thought permanently), we decided to finally visit Weeki Wachee state park and see the mermaid show. I remember that I had just gotten my nose pierced (a short-lived piercing, as I had to apply for jobs less than a year later) and I was worried that the little diamond would come out on the water slide. I went anyway. It was nuclear hot outside but the spring water was icy cold. I also remember watching a silly reptile (or bird?) show, and my husband and two wonderful friends unquestioningly indulging my enthusiasm about it.

And then I realized that my 20s were full of beautiful little moments like that, punctuated by a series of big moments. I graduated college. I traveled to at least seven countries. I walked multiple miles to buy almond croissants from my favorite New York bakery. I married the love of my life. I bought and sold a house. I challenged my husband to ping pong tournaments over craft beers. I ran a triathalon. I marched in a parade. I grieved over senseless loss. I visited the Louvre. I made and developed precious friendships. I started a career. I walked through fresh snow in Central Park. I threw a punch. I earned a masters degree. I hunted for seashells on Sarasota beaches. I made mistakes. I learned from them. (mostly). And, pivotally, in the waning moments of the decade, I brought a life into the world.

I am struggling to express the sensation I have, but here, after many false starts, is my best effort: Each person, each relationship, each moment of my thirty years is a tiny, invisible anchor, keeping me from drifting off, giving me a place. I feel connected, like I belong a little bit to each of you, and a lot to some of you. And that is maybe the greatest birthday gift of all.

Three Star Thoughtfulness

A while ago, Justin and I invented a ranking system for thoughtfulness. One star is doing something that someone asked you to do, even if you have to go a little bit out of your way. (Like when Justin texted me asking for grape gatorade when I was already at the checkout counter, and I left my spot in line and went back for it.) Two stars is doing something for someone that they didn’t ask for, but you knew they needed you to do. (Like when Justin sees that all of Jacob’s bottles are dirty and washes them before I can get to them.) Three stars is doing something for someone that they didn’t even know they needed.

Yesterday being Memorial Day, I went out shopping and grabbed a purse that I don’t use very often because it doesn’t function very well as a diaper bag. Inside, I found this:

receipt note

Note reads: “Your son will be just fine! Good luck & keep being strong! He needs you both!”

This was written on the back of a receipt for a dinner Justin and I had while Jacob was in the NICU. It was the first time we had eaten a meal together in several days. Jacob’s Mamaw and Papaw had come to sit with him and insisted we get out. We had a good rapport with our server, and we told her about our little boy. At the end of the meal, we found that she had left us these words of encouragement. Three star thoughtfulness.

I am beginning to notice a theme throughout my blog, which is this: There are a lot of wonderful people in the world, and I am fortunate to have connected with many of them in my almost-thirty years, yet somehow I didn’t really notice until Jacob came along.