One of Those Days

Yep, it was a rough day, in case the title of this post didn't give it away. It snuck up on me and I wasn't ready for it. For anyone who has lost a child, you will probably understand what I mean by that. There are some occasions when you are prepared for the painful memories. You anticipate that a certain family gathering or holiday will be hard. Other times, though, the intense sadness hits at unexpected times.

It all started over the weekend.

It happened to my husband, Luke, and I at exactly the same moment. There was a family with a baby who looked almost identical to Liza. She had the same hair color and skin tone. She was asleep, and from the angle we saw her at, she looked just like our baby girl used to look when she was asleep.

We stood there, silently, each of us with a single tear running down our cheek. We didn't have to say anything. We both knew. Later, in the car, I said, "that baby today...". And he said, "yeah." I said, "she looked just like her." He was quiet for a minute. "Yeah. I miss her."

Then we went about finishing out our weekend, not thinking or saying much about it. Today, though, the pain came back with a force that was unexpected. Sadness hung like a cloud all morning while I was at work. I literally had to motivate myself about every ten minutes to keep working, to try to do something that resembled productivity. There were cups of coffee with actual caffeine in them (normally I just drink decaf). There were a couple pieces of candy from the drawer in my desk. Anything I could think of to keep my brain occupied. And the sadness still rolled in, wave after wave.

I wasn't specifically thinking about that baby we both saw or the feelings that resulted. I hadn't spent time going over that moment in my mind. Yet it lingered, it brought her back, and the missing her was as strong as the day we held her as she faded away from this life.

When I got home tonight, I told Luke how difficult the day had been. To my relief, he said, "me too." When spouses grieve the death of a child, we're not always in sync. In fact, we rarely are. One of us can be having a terrible day while the other one is humming along, feeling fine. On this occasion, though, we both felt it. The unbearable sadness, the depression, the pain, the longing.

All for one tiny little baby. So much love that it hurts.



Liza Jane at a little over 3 weeks old. Her facial expression is telling us that her tummy is bothering her. Due to her heart condition, she didn't always have enough blood flow to her digestive system, which caused her pain sometimes. Here, she is trying to sleep through it and is thinking about whether it is worth waking up to cry. She was always given medicine by the nurse when she had a lot of pain, but it didn't diminish our heartache at what she had to suffer.

A Special Day

Honoring the ones we have loved and lost is an important part of grief. Today, in memory of our sweet Liza Jane, here is a shout out for 3/21. Today is World Down Syndrome Day.

This is celebrated internationally on March 21, symbolic of a third copy of the 21st chromosome that characterizes Down syndrome. This year the celebration is amplified as it is the first time that the date is officially recognized by the United Nations.

I'm joining NDSS to "do something extra" in honor of those with an extra 21st chromosome. Here I sit on my couch, tired after working an extra long day, ready to veg out. But I don't want to throw in the towel on the day without taking a moment to honor my sweet baby girl.

Just a few short decades ago, people with Down syndrome in this country were committed to institutions where they were given little opportunity to thrive. You can vist here for one person's story about how it used to be.

Today, people with Down syndrome live productive and meaningful lives. They go to school with all the other kids, and most of them graduate with their high school class. Some even go on to college, and many have jobs when they are older.

Despite all this progress, people with Down syndrome are more at risk for not making it into the world than ever, due to new prenatal tests that are now available. I think it's sad, because now is probably the best time ever for these individuals to be alive in our society. When their diagnosis is discovered prenatally, though, about 90% of mothers make a choice to end their lives.

So today, I want to send a big hug out to all those who know and love somebody with Down syndrome. And to all the people born with Down syndrome, thank you for making this world a better place, for bringing a little something extra to our lives. We are all better off because of you.

Moving on...

Over the weekend we shared our unused baby gear with people who are expecting a baby. It was bittersweet, because we want all the wonderful equipment that we were given to be put to good use. We are happy for the new parents-to-be, and we are rejoicing with them as they welcome a new life.

At the same time, it was hard, because there are so many memories tied to the items that we shared. The rocking chair, the changing table, the baby scale... It feels good to be cleaning out Liza's old room, and it feels good that all of these things will not go to waste. At the same time, though, it's a painful reminder of all the things we didn't get to do with her since her short 7 weeks of life were spent in the hospital.

When a new momma prepares a special room for her baby, she does not expect that the baby will not make it home to live in that room.

I've learned that grief comes in waves, and different things trigger it at different times. This was definitely a big weekend for triggers, and I was plunged back into the sad, depressed, tired emotional state that I've come to associate with grief. At one point through my tears I thought, "I don't want to go on without her." For me, working through grief and the will to go on often revolves around themes like this.

Ultimately, I do make a choice to go on without her... but not necessarily because I want to. It's a scrape-myself-off-the-couch choice. It is a deliberate, mental determination to put one foot in front of the other and keep going. For me, moving on isn't a once and done thing. It happens in phases and stages, and I am still learning what it means to move on.

The Least of These

There are important things happening at an orphanage in Bulgaria this week. I don't have much to say in this post except to point you to this blog entry and ask you to help spread the word.

These orphans have been treated horribly for many years, and we have a chance by contributing to their medical care to say that WE CARE for the least of these, that we are a voice for those without a voice.

I'll stop now and let the story do the talking. Thank you for listening.

Life Is Fragile

After losing my daughter, I felt like all the meaning was sucked out of my life. Even now, I sometimes question the meaning of life.

Seeing your own offspring suffer and die makes everything else seem pointless. What exactly is the point of living if she cannot be here with me?

Liza Jane, one day old, held in my arms at the ICU.

Part of the healing process is learning to live among the living again. As time goes by, the pain is not as deep, but the loss of her will always be in my heart.

Talking about her, blogging about her, helps to keep her alive. This in turn keeps me alive and in a more stable place emotionally. Not talking about her can make me feel as if she never existed or is no longer a part of my life. And that is enough to make me feel like I’m going completely insane. She changed my life so drastically, being a mother changed my life so drastically, that to deny her existence is madness.

Liza Jane at about 3 weeks old

The book of Hebrews in the New Testament says we are surrounded by a great cloud of witnesses that is cheering us on. These are people of faith who have gone before us. It helps me to imagine my Liza Jane as part of that cloud, separated from me only by the thin curtain between now and eternity.

That curtain is really so very thin. Someone I used to work with had a quote on his desk that said, “Only your heartbeat separates you from your ancestors.” (unknown)  I didn’t understand this quote just a few short years ago. It seemed overly morbid and a bit pointless to me.

What it means to me now, though, is that life is fragile. We cannot tell how many days we will have on this earth until we too pass beyond that curtain into the next life. 

This is something that my daughter’s brief life brought sharply into focus for me: to live in the moment, appreciate and savor the little things about today, because we don’t know what tomorrow will bring.

If you have lost someone special, I hope you will have precious moments to remember that person. It's your turn: use the comments section below to share something special you remember about your loved one.

Missing my little beauty

Lately I've been thinking about how beautiful my daughter was.

She was truly a joy and a delight in the 7 brief weeks that we got to treasure her. I miss holding her so much.

Precious little eyes, nose and mouth. Eyes that seemed to hold the wisdom of the universe on the rare occasions she could keep them open long enough for us to peek inside.

I feel like she was trying to tell me something whenever I look at these photos. The first time I saw those eyes was in the moments immediately following her birth, when she looked right at me through the haze of the goop that they always put on newborns' eyes.

To this day, I wish I knew what she was trying to say.