Still Learning

I'm still learning about this thing called grief and what it means.

This week I had a goal to clean out our Liza Jane's closet. It's the last thing in her room that I haven't gone through. All of her clothes were in there, neatly organized by her Mimi more than two years ago when we arranged her room in anticipation of her birth.

She never made it out of the Newborn size sleepers and into the 0-3 month size, partly because her heart condition made it difficult to eat and gain weight.

All the baby clothes she never got to wear were just one more reminder that her precious life was ended far too soon. As I folded a sweet little pair of jammies with colorful hearts on it, I cried because she never made it into the three month size range.

I remembered the stages of grief when I was six months pregnant and we learned that she had Down syndrome. People with Down syndrome tend to be small for their age, even without a heart condition. So would she have gotten big enough to fit into that three month sleeper before the weather got too warm for her to wear it? I will never know.

This task of cleaning her closet is a very necessary one, because we are in the process of adopting a sibling group of children. We don't know yet who our future children will be, but we are actively going through a matching process. And the room that was Liza's needs to be ready for our children.

Last night we had a beautiful snowfall. I had a rough time last night after meeting a friend's newborn baby for the first time yesterday. All the feelings of anger, rage, and deep sorrow came rushing back.

The tree in our front yard, covered in snow.

Ordinarily, snow like this gives me a giddy, happy childhood feeling. I waltz around the house singing "Let it snow, let it snow, let it snow," while making cups of hot tea. This time, though, I felt I was clinging onto a shred of my former self. I was sad, I was depressed, I could hardly function.

So, I'm still learning what it means to grieve the loss of a child. Tuesday will be two years since she died, and sometimes the loss is still fresh, as if it happened yesterday. She just didn't have enough time. I didn't have enough time to love her, to be Liza Jane's mommy. The pain is still there, churning in the core of my being. And it is still hard.

Surviving Another Week - Resources

Some weeks are harder than others. As I near the end of this week, I don't have much to say, because the pain I am experiencing right now cuts too deep for words.

Missing this newborn babe something fierce. Her hat was on crooked, but I couldn't fix it, because my other hand was balancing all the wires and tubes that were attached to my baby girl.

I found a couple of good resources today that are worth reading for anyone who is experiencing the loss of a child.

Post Traumatic Stress Disorder - an informative blog post from a mother who has been there

Alive Alone - a support group for parents who have lost their only child, or all of their children

These resources reminded me that coping with the death of a child takes years, not weeks or months. It's important to give ourselves time.

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.

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.

A time to mourn and a time to dance

I had to look up this verse from Ecclesiastes to remember exactly how it is worded. In my memory, it was "a time to mourn and a time to be comforted." It was kind of ironic, then, to find that it actually finished the phrase with "a time to dance."

We danced last night at a family square dance event hosted by our church. I've always found dancing very cathartic, and last night was no exception. I'm thankful for times to dance, times of joy in spite of the sadness that still lingers. It is comforting to come up for air, to enjoy the bright spots in life. We had all types of people enjoying the dance: young and old, athletic and not. One in a wheelchair, one on crutches, one precious young man with Down syndrome who reminds me constantly of the daughter I lost. Everyone thrilling in the joy of movement, the joy of being together.

Lately the subject of comfort has been at the forefront of my mind. I didn't realize at the beginning of this journey of grief how great the comfort of God would be. That sounds too simple, too trite, so let me try to explain.

I grew up in a Christian home, blessed by parents who taught me from a young age about a God who loves us and gave his own son to die for us. I felt the conviction of my need for salvation strongly at a young age. Even growing up in a rich spiritual environment, though, I've always been afraid of suffering. In the past I have avoided verses like "blessed are those who mourn, for they will be comforted" (Matt 5:4). Why would I want to mourn? I didn't like the sound of this. So although I knew that verses like this were in the Bible, I chose to frame my point of view around other scriptures instead. The bits about mourning, or suffering, sounded too terrible to bear. My life was relatively simple, actually quite easy, and I didn't want to think about hardship or pain.

What I didn't know was how great the comfort would be. And, I'm starting to believe that we are only able to experience the comfort of God in direct proportion to the severity of our suffering. Now, I'm no theologian, and I don't have a list of scriptures to back this up. This is strictly my personal experience speaking, no more, no less.

So, personally, I believe that I would not have experienced the comfort of God to the extent that I now know it unless I had been through this trial. It may sound like a small consolation for losing a daughter, and don't get me wrong, this does not diminish the painful hole that she left behind. But if the void had not been this great, I would not have had such a need, such a capacity, to receive the comfort of God. There is a reward in the depth of the comfort that is there. And it took me about nine months of pain to be able to open myself up, just the tiniest bit, to begin to receive that comfort.

Here is one of those verses that really scared me in the past - still does, to tell the truth.

And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

I Corinthians 1:7

Let me be blunt: I hated verses like this. Sharing in suffering does not sound like a good time. It doesn't sound like something a God of love would allow. And I'm still wrestling with a lot of questions about this. I have learned, though, that there is hope. There is comfort, and it increases exponentially compared with the level of pain I have endured. It is this comfort that has allowed me to go on, that has allowed me to embrace both the mourning and the dancing.

Pinpricks in the Darkness

It was one year and 21 days ago that my daughter was born. And it was eleven months and eleven days ago that she passed from this life into the next.

Many things that happen in life are directly related to our choices. Others are not. What we have the power to choose in all things, though, is our response. Sometimes it may take a while to realize this and for our emotions to come along, but we do have the ability to choose.

There is power in thankfulness. It does not wipe away feelings of grief, sorrow, anger and pain. But it can create tiny pinpricks in the darkness through which the light can shine. Sometimes it can open a window to the fresh air and sunshine. Other times the weight is too heavy and the light cannot penetrate. But there is always a return, a circling back to thankfulness.

Thank you, God for her life. Thank you for letting us hold her and love her for a few short weeks. Thank you that she is no longer in pain. Thank you.