Thankful for Liza Jane

The other day I told someone about our experience with Liza Jane for the first time. If you haven't read our story, you can learn more here.

Now that it has been a little two years since she passed away, my perspective on her life and the circumstances of her death is changing. I expect it will change even more in the future.

My little Liza taught me so much.
She taught me how to love without judging.
She taught me how to live every moment to the fullest. We don't know if it will be our last.
She showed me how important it is to love those close to us every minute of every day, because we don't know if that day will be their last.
She taught me the value of accepting without being critical. (Ok, maybe I'm still working on that one.)

Two years after her death, I do not regret the decision to give her a chance at life. I do not regret choosing not to have an abortion, which is what several doctors urged me to do.

There is much pain and suffering in this world, and what happened to us and our Liza is just a drop in the bucket.

Without her, though, my life would not be as rich and meaningful. I am forever greatful to her, and greatful to God for giving me such a gift. (Even though I am still a little mad at him for taking her away.)

White Horse for Christmas

The other night while I made dinner, I heard a song called "White Horse for Christmas" by the group Over the Rhine. It's a wonderful lullaby that we played for Liza Jane while she was in the hospital. You can listen to it here.

The song took me back to the night in early December 2010 when we played it for our three-week-old baby girl. At the time she was doing fairly well, and although we knew she would need some difficult surgeries soon, we were still optimistic.

I held her in my arms that night in her hospital room, and later we gave her a bath. Those moments were and still are so precious to me. And I had no idea the horrible ordeal we were about to experience, culminating with having to remove her from life support several weeks later and say goodbye, as we sent her into the sky to meet Jesus on his white horse.

As the song played, I cried for missing her. I also cried for myself in that moment, because at the time I was still so innocent and unaware that I was about to lose her. And I cried because my baby is riding her white horse through the sky now, and I cannot be with her.

This past week there was a terrible tragedy in Connecticut. My heart is going out to the mothers there. When they packed their kids' lunch that morning, bundled them in winter coats and dropped them off for kindergarten, they had no idea they were about to lose them in a terrible massacre.

I pray for those mothers, that somehow their broken, shattered hearts will survive through this Christmas season. We never know if the moment we have with our loved ones will be the last one we will ever have on this earth. And this was a terrible, unfair way to learn.

I'll close with the words to the song, "I want to speak with the angel who said 'do not be afraid.'" It is a small comfort that we must not fear what comes after death. Those words, "do not be afraid," are what I cling to, now more than ever.

Sadness at Christmas

Sometimes, Christmas is sad. I notice the sadness comes in waves. Don't get me wrong, it's a holiday that I have loved since childhood, and I continue to really enjoy and embrace it today. Christmas helps me to get through the darkest season of the year. It is about warmth and love and family.

As much as I enjoy the holiday, though, I have found myself feeling sad over the past week. I've been thinking about the loss of my baby girl some. I've also been thinking of all the families who are having a less than ideal Christmas this year. Maybe there isn't enough money for gifts, or maybe there isn't even enough money for food, heat or shelter.

Other families are facing serious illness, or the recent death of a loved one, and they are wondering how they will get through this Christmas.

My experience with Liza taught me that I cannot take the blessedness of an ordinary day for granted. It also taught me to be very aware that many people are not having quiet, ordinary days. Too many people are dealing with loss, heartache and suffering.

I feel accountable to my daughter to keep this in mind, and to act upon it. She lives on in eternity, and I know she is watching to see the choices I make going forward. I hope and pray that my actions will honor her memory.

So I'm making small choices this Christmas to reach out beyond myself and begin to act. Baby steps seem to be working for me right now, so I am not trying to save an entire country or change the entire world. But I'm being intentional in giving to some causes that I believe matter.

I want to let the sadness that haunts my heart always, and even more at the holidays, propel me forward to do what I can to relieve the suffering in this world. And I know my daughter looks down from her place in the great cloud of witnesses, and she cheers me on.

Time to slow down... and give thanks.

Winter is the time of year to slow down. I'm more acutely aware of this as we were without power for almost a week due to the aftermath of Hurricane Sandy. Without electric lighting, our house was much darker than usual, and it reminded me that we are built to take a break during the winter months. We take more time to rest and stay warm. Summer is full of busy activities, but winter is the time to step back, take inventory, and assess where our lives are going.

Thanksgiving will be a different holiday for so many this year. In the mid-Atlantic states, we are mindful of the simple blessings of modern life. Running water, a warm house, access to roads, food preserved in our refrigerators... all of these will be on my list. And more importantly, I'm thankful that friends and family have weathered the storm without injury, and that we are starting to get back into our routines.

This is a perfect parallel for all the thoughts that fill my mind this time of year. Just a week from today is the anniversary of my daughter's birth. I remember how thankful I was that she (and her fragile heart) survived the labor and delivery process. Tears streamed down my cheeks as I held her in my arms for the first time. I thought -- no, I knew -- that she would be okay in those first few moments, that she would survive the difficult path of surgery and hospitilization. Those memories of unquenchable hope still haunt me today, as that hope proceeded to be shattered repeatedly by bad news, and my heart still has not recovered from the damage.

But I am thankful for her still. Thankful that she taught me how we have live each day to the fullest, as we never know which one will be our last. Thankful that she taught me to appreciate my loved ones, for they will not be with us forever.

She taught me to refuse to take the little things for granted. This time of year is the perfect for that - a time to reflect, to remember, to be mindful and be present. That's my aspiration for the holidays this year. I want to take this time to slow down and truly give thanks.

The Looming Holiday Season

It's that time of year again. I am really looking forward to Thanksgiving and Christmas, which have been two of my favorite holidays since I was a small child.

This is also a very difficult times of year since Luke and I lost our baby girl. For one thing, she was born just a couple of weeks before Thanksgiving, and she died on New Years Day. So all the major milestones of her life happen during this holiday season. And secondly, any holiday is difficult for parents who have lost a child, no matter when they were born or when they died.

So, it's time for us to decide how we want to remember her birthday (November 12th). And it's time to face the emotional rollercoaster of the holiday season in general. It is so nice to have extra time to spend with loved ones, but every time we are together as a family, her absence looms large in front of me.

There is a hole in our family where a little Liza Jane should be. She would have been right in between my two sisters' kids ages. I love my niece and nephew, but every time I see them, I cannot avoid the painful thoughts of her.

What helps is when people talk about her, when they acknowledge her absence. One of the fears that comes up when somebody dies is that we will forget them. So when people remember her, it makes such a difference.

And I think that's something that makes us human: we remember people after they are gone. It's a way to honor the preciousness of each and every life.

So as we work our way through the emotional rollercoaster of the holiday season, I hope we can appreciate how precious our loved ones are, both those who are here, and the ones who have gone before us into the next life.

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.

The Butterfly Circus

The greater the struggle, the more magnificent the triumph...

I love this short film.

It's such a good story of how each of us has value, no matter the circumstances that biology or life have thrown at us. And it's a wonderful look at how we can overcome adversity and create something wonderful out of the ingredients life has given us.

I hope you will watch... I did, and it made me really appreciate the specialness of everyone around me.

Things like this mean so much more to me after having and losing a daughter with Down syndrome.

When people acknowledge and celebrate the unique qualities of every human being, it is a benefit to us all.

Click here to watch.

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.

Grief Is Sneaky

Grief is sneaky. When I least suspect it, there it is.

We were on our way to the beach the other day for a couple of days of relaxation. It was a much anticipated trip over the weekend of our 11th anniversary, and I was looking forward to a nice break in the routine.

The day before the trip, we got most of the preparations made. The morning we left, we woke up early, eager to get started. Once we were on the road, Grief caught up with me.

Maybe it was the break in the routine that did it. I think that once my mind began to rest, it started to process feelings and memories that had been lying dormant.

There they were, memories of our Liza Jane, flashbacks of some of the best moments of her life. (At least this time the images invading my mind were of the good days... not the bad days.)

In addition to the memories, I has a sudden flood of the "what if she were here?" kinds of thoughts. What would this seaside break be like if our Liza was with us? What would be the same, what would be different?

Once Grief and the memories begin to invade, it is very hard to continue as before. It is as if a giant mountain has arisen in the path ahead and there is no way around it -- the only choice is a slow, arduous climb until at last the summit is reached and I can begin the descent down the other side.

This time, though, I was able to accelerate the climb a little bit. I did this by opening my mouth and sharing with my husband, who was riding along beside me, everything that kept running through my mind. I don't always have the luxury of immediately sharing my thoughts with someone close to me, but in this case it was nice to have a captive audience, and it was really therapeutic.

To my relief, acknowledging the memories and the questions seemed to give them freedom. It allowed the images and feelings to take wings, almost, and continue on their way.

I'm sure a lot of this has to do with the fact that we're now a solid year and a half past the date our daughter died. It is a relief that sometimes when Grief sneaks up, it is no longer here to stay for days and days. Sometimes, now, it passes more quickly, like a song that finishes on a resolving note sooner than expected.

This doesn't diminish my love for my daughter, or how painfully I still miss her.

I am thankful, though, that the painful feelings are lingering less, and that I am able to spend more time in rest and joy.

We Go On

This weekend we had the privilege of interacting with some members of another family who lost a child recently. Their loss was under much different circumstances, but there are similarities in the way we moms and dads feel.

After conversing for a few minutes about our experiences of sorrow and pain, we both moved on to other activities at the picnic we were attending. Times of grief flow into motion, a choice to continue and to participate in life.

And so we go on.

The alternative to going on is to simply stop. It is tempting sometimes when the heart wrenching reality of the gaping hole is yawning within us. When a child is lost, there is an empty space in our lives that refuses to be filled.

But... stopping living, breathing, experiencing life is not an option. Choosing not to live, not to embrace life despite the pain, is the same as choosing to die.

Our children would not want that for us.

So we continue. We pause, we remember, we reflect and feel. And then we gather our scattered heart strings from the four winds and we put one foot in front of the other and choose to live.

This is how we go on.

The view from our seats at an outdoor concert the other weekend. One of the many ways that we choose to go on without our daughter. It was a gorgeous day.

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.

An Invisible Parent

The other day when I got to work it was "bring your child to work day." It was neat to see how many of the 30-something professionals in my building have young children. It was also difficult because some of them were small enough that they almost would have been Liza's age.

There are a lot of little things in life that make a bereaved parent think about what would have been, and this was one of those things. It highlighted the missing piece in my life: there should have been a 17-month-old with me that day.

an empty red swing, a missing piece

During the afternoon, I was in a 4-hour training class and at the beginning, everyone was talking about how nice it was to see all the little kids at work. Inevitably, someone turned to me and asked me if I had any children. I'm at that age and I have that look of someone who would have little kids at home. I just quietly answered that no, I don't have children.

In those kinds of settings, it is difficult to know how to respond. If it is a group of people that I mostly don't know, a more public environment like yesterday, I've found it is easier not to tell the whole story. People often seem to feel embarrassed or ashamed, as if they have done something wrong by asking the question in the first place. I think it simply points to the fact that our society is not comfortable with talking about death, dying, or grief.

The question was nevertheless hard for me to face, because I felt misjudged. When I answer that no, I don't have children, I can see the wheels turning in people's minds. Oh, you are one of those people. One of those young professionals who is married but chooses not to have children. Who just chases money, pleasure, whatever, blah-blah-blah.

(If you are a young adult who has chosen not to have children for whatever reason, more power to you. I'm expressing my own perception of other people's viewpoints, but please do not take any judgment from this.)

Maybe that's not what they are thinking, but that is what I feel like they are thinking. I feel a sense of failure that I haven't lived up to society's expectations. Part of me wants to scream that I do know what it is like to be a parent, I do know what it is like to have had my world turned upside down the first time I held my baby in my arms. I know what it is like to sacrifice my time, my body, my very self for the love of a child.

a red fence, the color of my angst

I've coined a new term to describe this: I feel like an invisible parent. I have the experience of having been a parent, and I still feel the intense love for my child. But on days like "bring your child to work day," there is no outlet for me to express this.

I left work really angry, so I came home and did my kickboxing workout, which helped to relieve some of the tension. Often, exercise helps me to clear my mind and sift through my thoughts so I can figure out what was bothering me. I told my husband about it that night and talking with him also helped relieve some of the tension.

Maybe next time when a relative stranger asks if I have children, I will say yes. And when they follow up with how old are they, I will state that my daugther was seven weeks old when she died. I have a feeling this will not go over very well though.

If you have lost a child, how do you decide whether to tell people your story? How do you answer the question of "how many children do you have?"

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.)

Floundering

Losing a child has made me question everything I believe in. They say this is pretty common, although knowing that doesn't make it any easier.

My beliefs are what have given me steam my whole life. I am motivated by meaning, by purpose, and that has always been tied to my world view and my faith.

I don't think I am going off the reservation completely... at least not for today. But people who have known me for many years and think they know what I believe would probably be shocked at the paths that my views have taken ever since my daughter died.

It all started when she was in the hospital for the seven weeks of her life. Most parents will describe how things changed completely when they welcomed their first child. A massive transformation in perspective takes place. That's when the first shift occurred. Things I once thought were of paramount importance in life paled in comparison. Those things may as well have fallen off the face of the earth. Having a child changes everything.

It is a feeling that has to be experienced in order to be understood.

The second shift occurred when we realized we were losing her. As much as our world had changed when our baby arrived, it changed even more drastically as she faded from this life. The best way I can think of to describe this to parents who have not lost a child is that this shift in perspective is just as dramatic as when a child joins a family in the first place... maybe even more so.

Ever since she died, I have been floundering, especially where my beliefs are concerned. I feel like a fish out of water most of the time, flopping around, desperately trying to get to a place of safety where I can breath again. Yet I am running out of steam and resources trying to find that place back in safe waters, because...well... a fish out of water cannot breathe.

This has been a difficult topic for me to share about, because I feel very exposed when people know the struggle I've been having.  I wrote and re-wrote this blog post, trying to figure out how to express what this feels like. My hope is that by sharing these feelings, though, all of you out there who are going through a similar experience will find comfort in knowing that you are not floundering alone, that you are not losing your mind.

Grief does this to a person, and my solution for now is to not take myself too seriously, and to allow myself to keep looking ahead.

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.

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.

What's the plan?

I am a planner. In life, I think things through, plan ahead, and make lists. Some people might call this being organized. Others may call it being a control freak. For me, it's just the way I'm wired. It makes me really good at some things, like project management, which I do a lot of at work. And it makes me really lousy at other things, like spontaneity. I am not good at taking life as it comes or coming up with ways to handle the curve balls life throws along the way.

This little curve ball, in particular, was hard to take.

And I mean that in the best possible way.


Liza Jane at 2.5 weeks.


Losing this precious princess was not part of the plan... at least not part of my plan. Watching her grow more sick as the seven short weeks of her life progressed wasn't part of the plan.

Liza Jane at 4 weeks old on Dec. 15, 2010, the day of her heart surgery

Watching as more and more machines took over basic bodily functions for my baby, like breathing, wasn't part of the plan. And being in the hospital in this photo, the day of her heart surgery, sick with a bad cold myself, wasn't how I envisioned the last time I would get to hold her until the day she died, three weeks later.

While these things were hard to experience, what has been just as unexpected (and unsettling) in more recent months has been the nature of the grief process. I know there are models and stages and all kinds of scholarly opinions about grief out there. However, my experience with the death of my child has been that the grief process doesn't follow those models. It is messy. It is out of control. It is unpredictable. Sounds right up my alley, huh?

I'm learning that grief happens in its own way for each of us. We can't box it up and set it aside to deal with later. It ebbs and flows, and the feelings come unannounced when they are ready to come.

For example, I had such a beautiful time reading this blog entry tonight. There are some lovely photos of individuals who have Down syndrome on this blog. And the thing that got me was the picture of a precious young couple on their wedding day. I saw my daughter in that image, and it reminded me of all the times I prayed that she would one day meet a godly mate that she could share her life with. It reminded me that I had hoped she would make it that long, that her heart would respond well to the surgery and we would get to those milestones with her. And there I was, suddenly crying, and angry, and sad, and filled with longing all at once. I was not planning on crying just then.

For a planner like me, this has been hard to get used to. I want to grieve on my own schedule, when I have set aside time to think about Liza. But it just doesn't work that way, and I've found that the more I go with the flow, letting the emotions out as they arise, the better.

I've had to do a lot of grief work to connect with these emotions, to unearth them and find them. And sometimes that has meant sitting down at a specific time with a journal and writing about my feelings, or writing a brutally honest letter to God, or a sweet letter to Liza Jane.

So, the plan is to not have a plan. And if you're a planner like me, you understand just what a significant statement that is.