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.

Tidings of Comfort and Joy

Some old Christmas carols have been giving me so much comfort this year. Thought I would take some excerpts and compile them together in a post. It's a meditative exercise for me, and I hope it brings you comfort and joy too.

Come to Bethlehem and see
Christ Whose birth the angels sing;
Come, adore on bended knee,
Christ the Lord, the newborn King.

See Him in a manger laid,
Whom the choirs of angels praise;
Mary, Joseph, lend your aid,
While our hearts in love we raise.

Long lay the world in sin and error pining.
Till He appeared and the Soul felt its worth.

A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.

Truly He taught us to love one another,
His law is love and His gospel is peace.
Chains he shall break, for the slave is our brother.
And in his name all oppression shall cease.

Now to the Lord sing praises,
All you within this place,
And with true love and brotherhood
Each other now embrace;
This holy tide of Christmas
All other doth deface.
O tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy!

Merry Christmas, from our house to yours.

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.

Making It Meaningful

After losing Liza, one of the things I struggled with was the feeling that all the meaning had drained out of my life. This is a common feeling for parents who have lost a child, or so they tell me. But during the first year or so, I really struggled on many days to think of a good reason to keep going.

My stomach hurts a little bit just writing this, because I remember the intensity of the void that was left when she was gone. I physically felt the grief in my core as I groped blindly for a way to move ahead. Sometimes this feeling comes back even now, almost two years after her death, but it is less painful now. Time and working through the grief process does ease the sharp edges after a while.

Where was I going with this? Ahh yes... the struggle to find meaning. The experience with Liza taught both Luke and me to look very, very hard for meaning, at a time when meaning was less than a faint glimmer on the horizon. It taught us that we can carve meaning out of the darkness. We can create meaning in our lives, and when we do, it builds layers of richness and memories into this journey.

For me, meaning comes from the small things, many intentional acts that begin to weave a beautiful tapestry. Meaning for me comes from baking things from scratch, using recipes and techniques that have stood the test of time. Meaning comes from doing things to make holidays extra special. Every day we have is so fleeting, the time passes too quickly. I believe in living every day, every moment, to the fullest. My experience with Liza taught me this, as we tried to savor every second that she was breathing and alive.

It is my hope going into this holiday season that I will be able to weave more meaning into the path of my life, and that I will be able to savor the special moments that occur every day along the way. Now it's your turn: What adds meaning to your life? 

Two

Today, Liza Jane would have turned two years old. I woke up this morning almost exactly at the time she was born. We've had a weekend full of remembering her, crying for her, wishing we could will her back to this earth.

I'm so thankful to family members who spent time having a birthday rememberance with us on Friday night. Among other things, we made sweet heart-shaped ornaments in memory of her. My sister made a birthday cake. My almost-3-year-old niece offered to blow out the candles for Liza since she was in heaven and couldn't come to her party.

The whole night, I felt like I was seeing a shadow of a tiny two year old in the room. Since she had Down syndrome, she may or may not have been walking by this time. The low muscle tone that comes with the condition means everything takes a little bit longer. I would have been okay with her not walking yet. I love the soft, cuddly baby stage.

It's been a hard few days leading up to this. Today I think I'm just glad it's almost over. Anyone who has lost a child knows you spend a lot of time dreading the special milestones.

And now, I'm drained and ready to think about something else. So I'm signing off and saying happy birthday, dear Liza, happy birthday to you. I still love you, baby girl. And I'm glad that you are not struggling anymore.

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.

Every Day Love

I heard a country song on the radio this week. It was a guy crooning about his girl, and he was wondering if she didn't wake up from her sleep the next morning, would she know how much he loved her?

It was really poignant because my heart and prayers have been with a family who lost a young wife and mother very suddenly in her sleep recently. Tears streamed down my cheeks as the reality overwhelmed me.

It was stirring also as I have been remembering another family whose young son recently died in a very tragic way. Their pain and all the questions are riding on my mind.

We assume our loved ones will live to a ripe old age. Modern medicine and the eradication of many deadly diseases through vaccines and other advancements have led us to expect these things in the Western world.

It is so easy for me to forget that it wasn't this way until recently. And that for parts of the world, it still isn't this way.

But the message in the song rings oh so true to me. I'm convinced the best way we can respond is to do everything in our power to make sure our loved ones know they are loved.

Every. Single. Day.

I haven't been the greatest at this lately as the cares of this life have overwhelmed me. But I needed to hear this message. So I'm going to stop blogging now so I can give my hubby a big hug when he walks in the door.

We don't know if today will be our last.

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.

Grief Work

If you've ever talked to a counselor or other trained professional about grief, they will refer to something called "grief work." In my experience, this is a lot like doing physical therapy after an injury, or working out to strengthen the body.

Today I did some Pilates which always challenges my body while leaving my muscles stretched and a bit tired. It feels good to work through some of the toxins and release the tension. My muscles like feeling the "burn" as they heat up through the movements, and I've come to look forward to that sensation.

When I work out, I have to intentionally set aside time in my busy day, or it won't happen. I plan for it, I set up a space in my home, or I go to a park or other location. It takes diligence and focus to work out.

Grief work is a lot like this for me as well. If I get too busy, I simply won't set aside time to "do grief." The emotional toxins build up inside of me and slowly leak into other areas of my life. I've gone a few weeks without doing any intentional grief work. The past few days, it has meant that I'm having strange dreams about babies, about giving birth, about babies being born and then dying.

So, I've been breezing past some of the early warning signs, but now it's time to be intentional about grieving. The toxic emotions need a release. Maybe I will journal or look at Liza's scrapbook. Maybe I will visit her grave. In any case, I'm signing off here and going to do the work of grief.

Memories Everywhere

Memories of her are everywhere.

We just got back from vacation and the past few weeks have been a blur of catching up at work and home. For anyone who has been following my blog, I know I've been a negligent blogger! What can I say, it can happen to the best of us. In the midst of the craziness, I can tell my mind has not had enough time to process grief recently, because memories of her are popping up all over the place.

When I called the vet about my cat's medicine and a need to schedule an appointment, in my perception I was a bit harshly treated by the receptionist. [Disclaimer: my perception can be quite askew sometimes.]

Anyway, it took me back in time to this time two years ago. I was a first time expectant mother talking to so many doctors, nurses, and staff. I was just trying to understand what was wrong with the baby girl inside of me and make informed choices about her plan of care. Sometimes, the health workers were not very kind. Sometimes, they were not very considerate or compassionate. I was scared and trying to protect my baby, and at times I felt like I was being attacked or blamed for what was wrong with her.

So when I felt a bit mistreated by a busy receptionist at the vet who in reality was probably trying to manage five blinking phone lines and make it to her next coffee break, I was emotionally distraught. It took me a few minutes to realize my feelings were connected to some of the events that happened with our Liza Jane. Once I did, I was able to cry and let that pain out, and get back into the swing of my day.

Grief is like that. Little things can trigger big, painful memories. I find that if I've gone a few weeks without taking time to think about her, or talk about her, this can happen even more readily. And from what I've read from the experts on this sort of thing, losing a child is even worse than many grief experiences. The hole doesn't completely close. You go on with your life, you make choices to continue living. But the void is there.

She would have been two years old this coming November, and I guess it's time to think about how we want to remember that milestone. Part of me doesn't want to face it, but another part of me knows things will go much better if I do.

Laughing and Crying

We have had a particularly stressful couple of weeks. In addition to my full time job, which has become more hectic than normal lately, I’ve also been working on the weekends for my husband’s company.

The other night as we prepared to leave for one of these work weekends, something snapped. Now, we’ve been married for 11 years and counting, so we’ve been through a lot of silly little laughs. It’s just been a while, because we’re both working hard during the day and we generally just crash in the evenings and try to wind ourselves down for sleep.

But on that night, Luke was asking me a question as he brushed his teeth. Something came over me and I squirted my toothpaste in a satisfying, 4 inch glob down the back of his shoulder. It was funny. He was stunned. I was laughing, my toothbrush still in my own mouth. We were tired, so he tried to take the high road, handed me a tissue, and resignedly said “get it off.” I took the tissue, but that’s where my compliance ended… I smeared it even further down his back.

At this point I am laughing myself silly, doubled over, still grappling with my toothbrush in my mouth. And as I run over to the sink to spit, he attacks me from behind. With his blue-green Gillette shave gel, which by the way is heavily scented, all over my t-shirt, my hair, my face, in my ear… you get the picture.

And I’m still laughing. I didn’t even try to get him back, we were both too tired. I just laughed and laughed as I cleaned up the mess and collapsed into bed, smelling strangely fresh and slightly masculine as the scent lingered through the night.

Now, you knew this was coming based on the title of the post. It’s the crying part. We’re coming home the next day from finishing the work we had to do, each of us driving in our respective vehicles down the highway with the blue sky overhead.  We're hauling our work supplies back home, and I’m listening to the radio for ambient noise and thinking about nothing in particular.

And that’s when the tears start. It feels like the weeks after our Liza Jane first died, the pain is intense and fresh and real. I feel like my heart is being ripped in half, the sensation continues for the rest of my hour and a half drive as I cry myself all the way home. Now, crying in the car can be dangerous, so I have to give a big disclaimer to say I didn’t let myself get completely overwhelmed by it, or double over so I couldn’t see anything. But I cried, continuously and softly, the whole way home. And I did this while driving because I’ve learned that you have to take grief as it comes. When the tears are ready to come out, if at all possible, it is a good idea to let them flow.

So here I am, thoroughly exhausted from work and grief and laughter. Thankful for the blessings that are in my life, but still aching for the baby girl who was taken from me far too early.

Something Different

This week we have been busier than normal with our jobs. So for this post, I don't have a lot of time to reflect on the grief process. I do want to share the following blog though. Hopefully you will take a moment to read and share... on your blog, Facebook, Twitter, e-mail, or good old fashioned Pony Express if you desire.

Click here: A Different Sort of Fairy Tale

I'm thinking calming thoughts today in the midst of stress...

Have a beautiful week.


P.S. - I'm not getting anything for sharing this, or entering the drawing that is mentioned - just want to help spread the word.

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.

Remembering with Love

This week I'm thankful for all the little loving ways we got to remember our baby girl. I caught pictures of two beautiful butterflies who visited our yard over the past few days. After all our efforts to attract them with our butterfly garden, it's so nice to see them come around.

Eastern Tiger Swallowtail

Eastern Tiger Swallowtail (female - black form)

I saw a monarch, too, but didn't get my camera in time -- that little guy was moving fast!

Last night we spent an evening in Philadelphia. A good friend noticed this lovely ring as we walked through an outdoor craft fair there. It is a lovely way to remember and to acknowledge how much we will always love our sweet daughter.

As a parent, I always appreciate it when people remember our Liza Jane and the things that are significant to us because they remind us of her. This weekend I've been blessed with a couple of friends that have been willing to acknowledge what a significant impact our Liza Jane has had on our lives. And for that, I am thankful.

Living Intentionally, Grieving Intentionally

It's summertime, and the living is... busy. This post is long overdue because we have had lots of summer activities going on - picnics with friends, family gatherings, and warm-weather-inspired fun.

I'm a firm believer in living intentionally, so while the weather is warm and the sun is shining, I've made a conscious choice to get out there and enjoy it. And I've taken my time getting back to the introspective (often indoor) activity of blogging. So here it goes...

Sometimes as grieving parents, I think we need to make a choice to let ourselves remember our children. The other day I did this by taking Liza's scrapbook, the chronicle of her life, and sitting in a room by myself. I looked at the whole book, remembering the good times and the bad times. And I cried.

A page out of Liza's book, and a page out of our lives.

This, to me, is what it means to be intentional about grief. Sometimes memories and emotions come spontaneously. Other times, I think we have to make time to let ourselves process our feelings.

The same is true about life in general. We can be intentional about the way we choose to live, where we focus our energy, where we pour out our love.

One of my choices is to remember my daughter, to spend time recalling her life. I think it honors her memory. It is also a way that I can be kind to myself by acknowledging that I need time to grieve her, I need time to love her, I still need time to be her mommy.

I'd love to hear from you... what do you like to do to "be intentional" about living?

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.

Choosing a Happy Ending

I have heard it said that "life is what happens when you're trying to get from Point A to Point B." This is so true. A strength of mine is being very goal oriented. I break life down into segments and projects that help me to achieve goals. In the process, though, I often lose the moments. I forget to look around me and appreciate the beauty of this day, this hour.

This is even more challenging sometimes in the realm of grief. A critical part of the grief process is remembering, looking back, thinking about that person and feeling the pain of his or her absence. For me, though, if I get stuck in that place for too long, I can miss hours or days of my life that is happening right here and now.

So it seems like another important part of the grief process is the way in which we move on. It's about striking a balance between reliving precious memories, and being able to enjoy the here and now.

How do we write the narrative of what happens in the "after" state, after the tragedy has passed? I think maybe this narrative happens in the small things, the every day moments that are built brick by brick into the structure that is our life story.

Looking forward, and looking back.

Being intentional about making these moments meaningful, being intentional about finding meaning in the every day. Slowly over time, new and positive memories are built that begin to construct a path into the future. I can feel that walkway growing over time, and it is helping me to look forward.

It is also helping me to appreciate every stepping stone, every moment, as it is selected and laid into the path of life with care and appreciation.

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.

For the Childless... and the Motherless

This Mothers Day weekend is turning out to be one of the loveliest we have had all spring here in southeastern Pennsylvania. What a beautiful time to honor the wonderful mothers in our lives who have sacrificed so much. The world literally would not be the same without them.

The beauty of the weekend stands in sharp contrast to difficult loss for many people though. As someone who first struggled with infertility, and later after finally getting pregnant, lost the infant the daughter I loved to a devastating congenital heart defect, I'm sensitive to the many who, like me, may be struggling to get through this weekend.

Some may be motherless due to a devastating loss.

Some may be childless due to infertility, a tragic accident, or an illness.

Others may be estranged from their child or their mother, longing for reconciliation.

I think of the women in countries where there is not enough food to eat or clean water to drink. Women who have watched their children die in their arms, powerless to help them even as their own bodies waste away.

There are so many who are not feeling warm and happy this weekend. This blog post offers some wonderful insights into how we can relate to people in all different circumstances this weekend.

Even as I mourn the missing daughter in my life, I also want to extend blessings to all the mothers out there who are tirelessly caring for their little ones. It's important to take the time to recognize and support these special women.

Here is a Mothers Day prayer to remember families in all different situations which I found to be a wonderful meditation for today.

God our Creator, we pray:
for new mothers, coming to terms with new responsibility ;
for expectant mothers, wondering and waiting;
for those who are tired, stressed or depressed;
for those who struggle to balance the tasks of work and family;
for those who are unable to feed their children due to poverty;
for those whose children have physical, mental or emotional disabilities;
for those who have children they do not want;
for those who raise children on their own;
for those who have lost a child;
for those who care for the children of others;
for those whose children have left home;
and for those whose desire to be a mother has not been fulfilled.
Bless all mothers, that their love may be deep and tender,
and that they may lead their children to know and do what is good,
living not for themselves alone, but for God and for others.
Amen.

- Courtesy Godweb.org

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

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.

Celebrating the Resurrection

The resurrection brings hope when a love one has been lost. We believe we will see our loved ones again in heaven because of the work that one God-man did 2,000 years ago.

This video is about a beautiful painting which brings the reality of what Christ did home to me in a new way. What a precious gift, this new life. I am so thankful.

Being Okay with Nothing

Coping strategies abound after the loss of a child. I have found ways to keep my mind busy, keep myself moving, averting the imminent feeling of falling apart.

Over the last week, though, I've been practicing the art of stripping away the crutches and working hard at being okay with nothing.

Luke was away on a trip for the better part of the week. A year ago, when our loss was fresher, I booked myself solid in the evenings after work while he was away on a similar trip. I made sure I was not alone on a single evening.

This year, though, I had some important work to do for a special baby shower for my sister and brother-in-law.

And while I wanted to lean on my crutches to get through the lonely evenings (TV, friends, computer, mind-numbing distractions), I powered through each lonely, solitary evening with only the company of the radio and my mixing bowl.

Each night when I rolled into bed, I was exhausted from the effort of keeping myself focused. I started reading this book which I someone gave to me a long time ago, but I only felt brave enough to crack open this past week.

I wasn't ready until now to think about what it means to "live fully right where you are." It didn't seem right to be concerned about living fully when my precious daughter cannot live at all.

But it was time, and on several evenings it brought a flood of new tears. And that is okay. Tears are healing, and there is no way to go through the pain except to keep going.

Luke came home from his trip safely this weekend. Another time I will write about the fear that grips my heart every time he leaves on a trip. The fear that was not there before we lost our daughter, but now that we have been so close to death, brings into sharp focus the reality that when a loved one walks out the door, it literally may be the last time I see that person... ever.

Today, Luke and I were thinking about planning something special to do together, maybe a trip to the art museum to see the Van Gogh exhibit. We realized, though, that we both just need to chill and allow ourselves some time to recover from all the excitement.

I am working on being okay with doing nothing again today. Being okay with rattling around in this large, too-quiet house all by ourselves. This house that we specifically designed for our growing family during the months that I was pregnant, the same house that is now too-large, too-empty for just the two of us.

So here I am, facing the pain, facing the emptiness, and working on being more than okay with it. Working on being thankful for the quiet blessing of this moment, this day.