Time is the enemy

Dear Livy,

I’m still here. It’s been a season full of emotional ups and downs, but I’m here. December seems to be hardest to get through. It isn’t the holidays alone that makes the month so daunting, it’s the cold/flu season that runs through our house like ground hogs day combined with me constantly thinking about how I’ll feel the day after Christmas. I could hardly bring myself to even look at social media this past month let alone talk to extended family members over the phone. Time is passing, but my heartache remains the same and I’m just grumpy. This photo of you is how I feel.

Livy with an upset face

I realize I don’t have to explain, but it did make it easier the first couple of years to share with people why I feel so shitty. I still haven’t found an easy way to explain that your death wasn’t a one day experience. It also wasn’t a drawn out situation like cancer can sometimes be. It’s hard because most people think of seizures as something they’ve seen on TV or heard about, but have never witnessed the diversity of them. Same goes for RSV. Together it makes the lethal cocktail that I didn’t even know was a thing. That’s why I often say you had a seizure in your sleep and while I’m not lying, I’m also not going into the details. There’s nothing worst than watching people’s eyes glaze over as you explain how your daughter passed away and that while it started the day after Christmas it didn’t really happen till December 30th.

By the way, as I write this posting your brother and I are home sick…again!

We’ve now gone 3 years and 3 days without you. Your bedroom is now the art room, but we still call it Livy’s room. The walls are the same color and your backpack and lunch bag are still on the back of the door with your Minnie ears and homemade bag of paper mache high contrast rocks. We took down your purple polka dot curtains and rods over the weekend and donated them. I’ve gotten better and getting rid of or re-purposing things. I’m trying to think of something creative to do with some of the stuff. I recently learned about memory bears and am interested in getting one made in honor of your upcoming birthday. I have to decide which piece of your baby clothing I’m willing to give up for it. 

All this holiday and sick downtime has me struggling with what I feel is my purpose. Parenting and being a loving partner is still my #1, but I’m conflicted about everything else. I’m drained by the constant chaos of life and those around me who take their privileges for granted and tend to only think about themselves. It’s stressful and wearing me out. I want to be surrounded by more thoughtful people.

Where do I find them?

People who are genuinely caring, willing to talk and understand that grief doesn’t go away or get better over time. Those who will understand that I will forever have good days, bad days and super emotional days. In turn I want to be a better friend to those who have rolled by my side and are always there for me. Even on my most difficult days after ignoring their calls and text messages.

It seems like forever ago, but in 2017, that first year I had to move forward without you all I could do was get up everyday and not think about the future. I just had to survive. Three years later and I wish I could go back to that simple feeling of surviving without all of the additional weight.

Livy, you taught me many, many things. One of them was how to appreciate the little things in life that come at no fiscal cost. Relationships is one of them. I value my relationships with family and friends and need to do better at showing others how much I care. I want to spend more time enjoying life and less time stressing about it over this next decade. I want to make sure I’m present for Sage, Eli and those who truly love me. I want to keep my body happy and make more jam.

Thank you, Liv, for continuing to listen to me. Your family loves and misses you so much. In your memory we continue to take an annual family photo in front of your garden.

The three of us in front of Livy's garden

Love always,


2 thoughts on “Time is the enemy

  1. Lorraine Dellasanta says:

    I am mother to Patrick, age, very severe type 3 O. I.
    I am also a bereaved mother to Billy, non O.I., Nov. 2014
    Beautifully written!
    Hugzzz ♥️


  2. Susan Chandler says:

    So sad that you are still mourning—I have not had that terrible experience so I cannot imagine how hard it must be but you described it pretty well. I only hope that eventually the good memories of Livy will win over the bad and they will quietly recede into the background. In the meantime, keep pushing on with your good work for people with disabilities!!!


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