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.

Trust in God?

I'm writing this post in the hopes that others who are struggling with something similar will take comfort in knowing they are not alone. I don't like being this vulnerable because I'm afraid of what people will think. I am afraid of being judged.

The only way I know to break through this barrier of fear, though, is to begin.

It's very hard to return to an image of a good, caring, loving God after seeing him allow something terrible to happen to someone you love.

My daughter was the sweetest, most precious little baby girl I have ever laid eyes on. Even though she is now gone, I still love her as fiercely as any mother ever loved her child. And I wish with all my heart that she were here, that I was dealing with diapers and midnight feedings and fatigue and all the things parents complain about.

The strength of my love, from the time of my pregnancy onward, made it even harder to see all she had to go through in her tiny six pound body. She had two surgeries, the first on her abdomen resulting in a colostomy bag, the second with her returning from the ER with her chest still open and a small cloth tent sewn over the hole. We could see her fragile heart beating beneath the fabric patch. It was left open in case emergency intervention was needed. It was traumatic to see my babe of under two months old lying there open, bruised from having her sternum broken and her ribs pulled apart. It was traumatic each time her heart failed, we almost lost her, and they brought her back, each time putting her on more machines to try to keep her alive.

How do people who have been through terrible tragedies return to any trust in God? I think of the victims of genocide, war, rape, torture... For many, relief from the pain and answers on this earth never come. And for me, as for many, the pain of what she had to go through continues to grind away in the core of my being, at times with a literal, physical impact.

I know the pat answers Christians provide to these questions. That God didn't cause the event; a sinful, fallen world caused the event. But I struggle with how a loving God could even so much as allow these terrible, painful things - especially to one so innocent, so small, so vulnerable.

And it makes it very difficult to trust in God, for anything at all, great or small, ever again.

Nothing in my life experience prepared me for this. And it seems like a harsh way to learn.

Less Alone

I spent the last week in training for work. During the group introductions on Day 1, I realized that there is an often silent minority of individuals in our society who may wish to have biological children, but do not.

As we went around the room and gave introductions, those who had children shared about them as a central part of their lives, as they should be. I was sitting there thinking and wondering if I was the only one in the room who wished they could say the same, but could not.

Our baby girl gave us her first and only hint of a smile on the way to her heart catheter procedure, which would be the first in a domino series of events that would ultimately end her life.

Whether due to infertility, miscarriages, a child being stillborn, losing a child later in life, or simply not finding the right partner, I am realizing there are more of us out there than meets the eye. This is because we often don't talk about the loss, the missing piece, the disappointment. Even Facebook is a microcosm of this issue: many people seem to post about the highlights in life and bury the low points.

As I walked back to our training room from lunch one day, I heard one classmate talking to another about their plans for the holiday week. The first woman said to the other that her 14-year-old son had been adopted via an open adoption process, so he was visiting with his birth family for a few days. Looking at this woman, I never would have guessed that for whatever reason, she ended up adopting her son. Admittedly, I am making a giant assumption that this woman chose adoption because biological conception was not an option -- but given the cost of adoption, allow me this luxury for the sake of argument.

I think it is easy to assume we are the only ones who have struggled with some loss. It helps, though, to know that we are not alone. There are often others who are walking similar roads, and they are closer than we may think.

When we have enough courage to open up about our challenges, the results may surprise us. For me, at least, it has resulted in feeling less alone on the path of life. And feeling less alone is worth the risk.

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.

Our Butterfly - Part 2

Our family members did so many thoughtful things for Mothers Day. We had a lovely lunch with my parents and a chance to talk about memories of our baby girl.

My husband's family also sent us live butterflies to release in memory of our little butterfly girl. They came  "chilled" in a box - the darkness and cold puts them in a natural hibernation state.

The day of release, we set them in the shade for a while to warm up and wake up.

This area is the new butterfly garden we are planting in memory of our baby girl.

I had plans to create the garden last year, but grief really wears a person out, and I didn't have the energy to do it until this year. Anyway, after just a few minutes in the warm daylight, the butterflies started wiggling in their little box.

My husband wanted to be the one to release them, and I got camera duty. It was a precarious task as they were in between the accordian folds of this lightweight paper.

Slowly, one by one, the butterflies emerged and took flight.

It was actually pretty amazing that most of them survived the trip to our house.

We lost count, but there were probably 10 or 12 butterflies. Only one of them didn't make it, and one had a broken wing, but the rest of them quickly found the rhodedendron bush nearby and had a nice snack before moving on to other flowers in our neighborhood.

Some were a little slow to get moving, and I figured maybe they needed some encouragement, so I lifted them from the ground to help them find the flowers.

The little guy in the picture above was the one with the broken wing -- he wasn't doing too well. This brought back memories of when our daughter was so sick and there was very little I could do to help. It is a frustrating feeling as a mother.

I've grown used to those sudden painful memories that are triggered by little things and have learned to allow myself to remember the pain, to remember the love I had and still have for her, and then to take a deep breath and look forward.

At some point in the grief process, I realized that life is going to keep going, and I have to keep surviving. It is by finding the joy and the blessings in the every day things that I'm able to go on as a participant in life.

The Loss of Motherhood

This post could also be titled The Loss of Parenthood or Fatherhood or even Grandparenthood, but it is almost Mothers day, and I wanted to share a quote by C.S. Lewis about motherhood.

If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy Him forever.' A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.

- C.S. Lewis, A Grief Observed

I've heard stories of people who had lost a child being frustrated with the condolences that well-meaning friends offer to them. People often make statements like "well, he is in a better place now" or "at least we know she is not suffering any more." To many parents, these kinds of statements are a non-consolation.

For me, it did help to think of my daughter in a better place when she first passed. Her existence was so sub-par during the last half of her life as she lay still on her bed, unable to do all the things little babies are supposed to do. It came as a relief to me that she was free from the confines of her inadequate body. And it did and still does help to think that my daughter has not lost the end for which she was created, as I mentioned in this post.

In the long run, though, it was clear that my "specifically maternal happiness must be written off," as C. S. Lewis so elegantly said. And I would argue that it doesn't matter how many children one has. Even if there are other children in the home, there is a specific joy in that one single child that is lost forever when that child is gone. It is the loss of that child in the present as well as in the future. The loss of all the things that child may have done with his or her life, and the loss of what it would mean to be a mother to that child.

Elizabeth Stone said, "Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." As we approach Mother's Day, which is a bittersweet occasion for those of us who have lost a child, I think this rings especially true. Although, when the child is no longer on this earth, our hearts sometimes feel more like they are wandering around in the emptiness of the universe instead, untethered, lost in a void.

This butterfly visited my back yard today, a sweet memory of her.

Our Butterfly - Part 1

This is the first of what will probably be several posts about butterflies.

I use butterfly imagery a lot on this blog because butterflies are significant to our family. They remind us of our little Liza Jane.

When I was carrying her in my womb and we were learning of her difficult medical problems, a couple of people independently told us that Liza would emerge like a butterfly from a cocoon. That she would surprise us and that she would be beautiful.

At the time I interpreted those words in a specific way. There were other words tacked on to those statements about healing. And I believed she would surprise us by being miraculously healed and made whole on this earth.

That wasn't meant to be, apparently. Our delicate, beautiful little butterfly girl did not last long in this life. After she died, Luke and I took some time to get away. One of the things we did was to visit a butterfly farm in St. Martin, FWI, as a tribute to her. We learned some pretty interesting things about butterflies there.

Butterflies usually only live a couple of weeks once they emerge from their cocoons. During their brief lifespans as beautiful winged creatures, they have one primary purpose: to reproduce. All the lovely show of color that they put on is to help them attract a mate. Male butterflies will dance and twirl around a female, hoping she will choose them. This ritual goes on for a few hours at a time. And if the female rejects the male, he will go off and mope by himself for a while. We actually saw these behaviors at the butterfly farm.

So maybe those people were right about our Liza Jane in a way. She did emerge from the womb like a beautiful butterfly. She was more delicate and fragile than we could have imagined, and her life span was only a few short weeks. And in a way, I think she was here for the purpose to reproduce herself. Her life produced a drastic change in many who came into contact with her, as well as quite a few people who never met her.

Since I've joined some online communities about the loss of a child, I noticed that many other people are reminded of their children when they see a butterfly. It seems to be a common theme among grieving parents, and I think it is a fitting one.

I'll close today with a quote that was on a sympathy card someone shared with us after Liza died. It really meant a lot to me. If you are remembering a loved one today, I hope this will resonate with you too.

"It is not how long the flower blooms, but how beautifully."

- Unknown

Loving this Idea...

If you have lost a child, what do you tell people when they ask you how many children you have? I found this blog post about preserving the memory of our lost children to be a wonderful resource with lots of good ideas to think about.

And, in the spirit of preserving our family history, I wanted to share a lovely idea that I found to honor our children, the ones who are here with us, and the ones who have gone before us into heaven.

I'm always looking for ways to honor my daughter's memory. We have special photos around our home. We have a lovely scrapbook about her life and a memory box holding some of our favorite Liza Jane things. And we visit her grave to bring flowers and feel close to her again.

Sometimes I wear this lovely handmade locket that my husband got for me on Etsy to commemorate what would have been our daugher's 1st birthday. Her picture is inside.

My 2-year-old niece loves to look inside this locket when I wear it. She knows there is something special about it. She comes close, sits on my lap and says "see baby." We open the locket, and she says "aahhhh" in her sweet little girl voice. Then I tell her it is her cousin Liza who is in heaven, and ask her if she wants to give kisses. It never fails that my niece gives the sweetest little kiss to this baby cousin whom she never met.

Later the same day she will come to me and say "see baby, give kisses." Kids know - they know when something, or someone, is close to our hearts.

I just learned about another lovely way to honor our children through these lovely birds nest rings and necklaces. Pay close attention to the ring in the third picture...

When I saw this, I was floored. Is that really a nest with 3 white eggs and 1 gold egg? Symbolizing a special child that perhaps didn't make it in this life?

Yes, yes it is. This bird nest jewelry is hand crafted and customizable so we mommas can come up with a design that represents all of the children who are close to our hearts, not just the ones who are with us on this earth today.

Here is the Etsy shop where you can find these lovely pieces. And, thanks to Kelle Hampton for posting and sharing this idea on her blog.

Feeling Older

Have you ever heard someone described as "wise beyond their years" or "an old soul"? I've been feeling exactly this way lately. This is a completely neutral feeling - it isn't positive or negative - it just is.

We were at an event the other evening to support the Children's Hospital of Philadelphia (CHOP) which took such good care of our daughter. There is a committee we belong to that is comprised of young professionals who support CHOP. Being in that room with other individuals of a similar age and circumstance made me realize: I don't fit in with my peers.

Many people that we met asked us what motivated us to support CHOP, or how we got connected with the group. It was difficult to explain to them. Most of them were there because of a "success story." For some, their child had been cured of cancer at CHOP. Others had nieces or nephews, or other relatives and friends, who had been successfully treated at CHOP. One person had herself lived at CHOP as a patient for 1.5 years of her childhood and as an adult wanted to support the hospital that saved her life.

Nobody else we talked to had a child who died at CHOP. Many of them did not know how to respond when we shared our story. And this highlighted for me a feeling I've had for a while, that I have been aged beyond my years by this experience.

Glasses that I need to wear more often than I'd like... one more sign of getting older.

It's true, I have noticed some accelerated signs of aging in my body due to the stress of having a newborn in the hospital for 7 weeks and subsequently dealing with the grief. But even more noticably I have seen my psyche age due to the waters we have passed through. I identify more with the 40- and 50-something (and beyond) crowd of people that I generally meet, who are going through hardships of mid- and late-life, than I identify with my own peers.

I sometimes wonder if others who have lost a child, or gone through another form of intense loss, feel this way. It can be a lonely feeling, one of not fitting in any more. Anybody else ever feel you've aged beyond your physical years?

Having Compassion... for Ourselves

Guilt is a common struggle for people going through the grief process. We often blame ourselves for the tragedy that has struck a loved one, or review events in our minds over and over again to see if we could have done anything differently.

The reality, though, is that we could not have stopped the disaster if we wanted to. Still, our minds seek someone to blame, and too often we turn that blame on ourselves.

Lately I've been working on forgiveness - forgiving other people, but more importantly, forgiving myself. This isn't necessarily tied directly to the events that led up to my daughter's death, but it has more to do with my general outlook and mindset about the road I'm on.

The sweet baby girl whose life, and death, have forever changed me and the path I am walking. Here, Liza Jane is surrounded by the many accessories our kind hospital nurses used to prop her up and make her comfortable. She's making one of her cute fishy faces in this photo - a rare occasion when she felt well enough to be awake and a little bit playful.

Compassion toward myself has never been my strong suit. I'm someone who has been motivated to do things out of a sense of duty, obligation or guilt for much of my life. I am grateful for some close friends and confidants who have been challenging me in this area lately.

As I have been struggling with the grief process, and trying to learn how to go on with life since my daughter died, I have often been really hard on myself. One trusted friend said to me a few months ago, "Can you step back, look at yourself and have ANY compassion for yourself right now?"

That was a turning point for me, although I didn't realize it at the time. The expectations that I have set for myself based on what I assume God wants from me, and what I assume others expect from me, are at best unrealistic. At worst, they are downright harmful.

So I'm walking down a new path where I am learning to be compassionate toward myself. It is incredible how many times a day I catch myself being really harsh toward myself. And I'm working on doing just that: catching it. I am catching that thought and reconstructing it. Instead of thinking "you idiot!" when I make a mistake, thinking "I'm a human being and I make mistakes every day. It is okay."

The truth is, we all need compassion. We need to shower forgiveness on those around us, and importantly, on ourselves.

*****

On a somewhat related note, check out the new "How to Help" link at the top of this blog. If your friend or loved one is struggling with grief, this may provide some insight into the things that they will appreciate hearing at this time.

(For all my friends who read this blog, this is not me trying to give you a not-so-subtle hint! Just wanted to share with others who may be struggling to know how to support someone who is going through the loss of a precious child.)