Monday, October 28, 2019

Hart Days


When my children were younger and I was feeling especially fragile and sad, I would tell them I was having a "Hart day" and they knew that meant I needed them to surround me and give me lots of extra hugs or I needed them to give me a wide berth and not touch me (because that's the beauty of me-it's all or nothing-I have no dimmer switch). This actually went on for years, because like grief, coping with grief never ends. And when my children were younger, it was the quickest, easiest way to convey my needs to them. I've always tried (and continue to try) to find the best way to deal with hard days while not alienating everyone I know, or worse, going down the grief rabbit hole.

My grief rabbit hole foundationally consists of lying on the sofa in the fetal position, staring into space, not moving, not showering, not eating, not answering texts, calls, or emails, and not leaving my house-because no one wants to carry me and the sofa to the car.

From there the spiraling can branch off into a myriad of tangents. Sometimes I look up trisomy 18 facts and advancements or I look at pictures of other children with trisomy 18. Sometimes I think of things I should have done while Hart was alive-like not sleep-because then I wouldn't have missed out on any of his time with us. Sometimes I think of all the mistakes I've made with my other children. Sometimes I get angry at people who don't extend grace to others and think of all the times I've wanted to yell, "I lost a child, why can't you just be kind-you have no idea what people are dealing with!"

Sometimes I get worked up about people complaining or being precious about little things and fantasize about how the next time I witness it, I'm going to yell, "There are people who have had their children die, can you get some frickin' perspective, please?" I think about a woman I read about whose son came out and she said that it would be easier for her if he had died. And I think how dare she say that when there are so many parents who would give anything to have their child alive?

Obviously, this is NOT a healthy way to deal with grief (or life), but sometimes I just can't reach my toolbox before grief envelopes me and takes me prisoner. Fortunately, that doesn't happen often.

I've been having more "Hart days" than usual recently. I'm not sure why this year's grief season is hitting me so hard, but my tears seem to come more easily, my emotions feel like they're resting vulnerably outside of my body, and my heart feels like it is in a vise.

Thankfully I have only been down the grief rabbit hole once this year, but once is more than enough. It was actually a culmination of several things-but my susceptibility to disappointment, disagreement, disparagement, and general asshat-ery is very high this time of year. I wouldn't wish losing a child (or anyone for that matter) on anyone, but I wish the empathy and perspective on everyone. But, really, is it too much to ask that people just not be jerks?

Saturday, October 26, 2019

100 Years

When each of my boys turned 15, I would burst into tears during the intro of Five for Fighting's 100 Years. It really resonated as a sort of itinerary of life's milestones and a reminder of how quickly time passes. A little more than a year and a half ago, when my youngest turned 16, I figured my inability/insatiable desire to listen to this song was over and I could go back to the oblivion of not thinking about time linearly. 
It didn't occur to me that it would affect me the same way with Hart. Part of what I find so moving about the song is looking forward to the amazing things the future holds, and that, at 15, it's all anticipation and excitement of what the future holds, but those things don't apply to Hart, so I assumed I wouldn't have the same visceral reaction. But....the other day, BAM! 100 Years started playing, and I lost it. It turns out it's triggering all my emotions for the very reasons I thought it wouldn't. 

None of these things apply to Hart and that really, really stinks! It makes me so incredibly sad that I  honestly don't have the words to describe how it feels. Obviously, it is not news that Hart won't have dreams and goals to reach for. That he won't get to experience love. That he'll never have a family of his own. That he won't get old. That he'll never get older. It's just that it hit me in a way that feels like it snuck in the back door while I wasn't looking, and it stinks-it really, really does!


100 Years
Five for Fighting

I'm 15 for a moment
Caught in between 10 and 20
And I'm just dreaming
Counting the ways to where you are

I'm 22 for a moment
And she feels better than ever
And we're on fire
Making our way back from Mars

15 there's still time for you
Time to buy and time to lose
15 there's never a wish better than this
When you only got a hundred years to live

I'm 33 for a moment
I'm still the man, but you see I'm a "they"
A kid on the way, babe
A family on my mind

I'm 45 for a moment
The sea is high
And I'm heading into a crisis
Chasing the years of my life

15 there's still time for you
Time to buy and time to lose yourself
Within a morning star

15 I'm all right with you
15 there's never a wish better than this
When you only got a hundred years to live

Half time goes by
Suddenly you’re wise
Another blink of an eye
67 is gone
The sun is getting high
We're moving on

I'm 99 for a moment
And dying for just another moment
And I'm just dreaming
Counting the ways to where you are

15 there's still time for you
22 I feel her too
33 you’re on your way
Every day's a new day

15 there's still time for you
Time to buy and time to choose
Hey 15 there's never a wish better than this
When you only got a hundred years to live

Monday, October 21, 2019

My Baby Girl is Turning 13!

Tonight is my last night of being a mother to a preteen. Tomorrow Baby Girl turns 13 and I can hardly believe it. To be fair, BG has always had an old soul (we often joke that she's a 40 year old in a 12 year old's body), but it still feels bittersweet.

In elementary school her teacher told me that when she was pressed for time, and her class wasn't understanding something, she would ask BG to translate it for the class because she was fluent in both adult and adolescence.

I love listening to her chat with her friends. They all have a similar essence, but they call her mom (in a loving, not snarky way ;) ) because she's always making sure everyone is tended to. They all give each other sound advice and steer one another toward doing the right thing-plus listening to them chat is like sitting in the front row of The Oprah Winfrey Show. One of her friends made a questionable choice the other night and asked BG not tell me. BG responded, "If you're asking me not to tell my mom, don't you think that's a sign that you shouldn't have done it?"

Anyway, all of that is to say, I haven't felt like I've had a really young child for a long time, but I am feeling nostalgic nonetheless.

Baby Girl has brought so much love, wisdom and sass to our family that I cannot even remember what it was like before she was here. She is creative, artistic, smart, beautiful, empathetic, and can dance like a boss! She is a justice warrior and stands up for what is right, even when she's standing alone. She is a light that burns bright and serves as a beacon to so many of her peers.

So please indulge me as a share a gazillion pictures that try, but fall short of capturing this magical girl of mine!