Whelmed

I heard it say once that you can be overwhelmed, and you can be underwhelmed, but is it possible to be just plain whelmed?

Lately I feel like I'm living in a constant state of whelmed. Things keep flying at me, and for the most part I can take it as it comes. Helping two kids process the grief of leaving the lives they have known and adjusting to our new family takes the stuff out of you. Realizing that although they are wonderful  children, they still have a long road ahead to healing and healthy functioning, is a big chunk to swallow.

We have had major meltdowns by now. The honeymoon stage of this adoption is definitely over. I read in an adoption magazine that keys for adoptive moms to not burn out are first, to make sure you are getting enough rest. And second, to take time to continue bonding with the kids. Like many moms, I sometimes feel it is impossible to get enough rest. And the bonding thing can be challenging with a kid whose emotions are all over the place.

I'm grateful that the grief process has taught me what it feels like to be in the middle of heart wrenching sorrow. It has at least given me some perspective so I can sympathize with where the kids are at. It would certainly be challenging to adopt children without going through a loss like ours.

Feels Like Nesting

This is one of those weeks where blogging just isn't flowing naturally from my fingertips. I have started several posts, which are all still in draft mode, because I can't quite get at the essence of what I want to say.

There is a lot going on as we get ready for our adoption. We are rearranging things in the house, and I am preparing to give up the spare bedroom I've enjoyed using as an office for the past three years. It's a mix of feelings, sad and happy.

We don't have a timeline yet, but some promising prospects, and an office full of stuff that is being dis-assembled and dispatched to storage around the house, or the thrift store, or recycling as needed.

It feels a lot like nesting. Luke pointed it out to me tonight, and I think he was right. I've got the bug, and I'm making it happen, so we will be ready whenever the moment is right and there are kids that need our home.

So that's all for now, folks. Before I start second-guessing myself, I'm just going to hit the Publish button. If there are type-o's, the sun will still rise tomorrow.

A baked apple is waiting on the counter for our dessert... yummm... over and out.

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.

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.

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.

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.

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.

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.

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?

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.

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.

Learning to Survive

We talked with some new friends this past week about their experience losing their son nearly 18 years ago. He was only a day old when he passed into the next world at the hospital. We cried together as we shared our experiences with one another.

As we compared notes, we realized that both of us had a very similar experience when we left the hospital after the day our children died. The first thing we realized was that we were hungry, and we went to a restaurant to eat.

Looking back on it now, I think this was our first act of survival. And that is exactly what parents do after losing a precious son or daughter: they learn to survive. For many years, I've noticed in obituaries how they list the deceased person's family members who are still alive in this way: He/she is survived by.... and a list follows of siblings, children, etc. I had never realized how literally true this is.

The funeral home that made the arrangements for Liza Jane gave us a helpful pamphlet called "Surviving the death of a child: How to live when your child has died." It described the experience of losing a child more eloquently than I can.

"The death of a child is viewed as the greatest of all tragedies. When we lose a child, it is as if a part of us dies, too. We feel our children's every hurt, we instinctively know what they need, and we live to protect them. When they die, the loss of this connection can bring on the most terrible kind of grief. There are ways of managing the pain and grief, however, so that it doesn't overwhelm your life and does allow you to move on."

The Free Dictionary online says that to survive is to remain alive or in existence, to carry on despite hardships or trauma. Surviving is hard work. It takes an effort to make a choice to go on living. There have been many days over the past year where it has taken an act of my will to get out of bed in the morning. It has been a battle to make simple choices to eat nutritious food, to get myself out of the house into the fresh air, to exercise and do simple things to take care of myself. All of these things are part of surviving.

It is hard sometimes not to feel guilty for enjoying life when she is gone and can no longer experience it with us. Over time, the intensity of this feeling does lessen, but her absence still remains.

A working mother in a novel I read described the experience of being separated from her infant son while she was at work. As she left him with his nanny and began her journey to work, it felt like a spool of thread inside of her was unwinding, with the other end being attached to her son. All day long, the further she got away from him in time and space, the more that spool unwound until at the end of the day, she felt as if she would fall apart. She would race to get back to him as quickly as possible so that spool of thread would wind up tightly again, bringing them back together at the moment he came into her arms.

I felt this way each evening that we left Liza at the hospital so we could go home for some nourishment and sleep. Each morning, I felt almost panicky until I got back to the hospital. My spool of thread was unwound, and it wouldn't be right again until I was back with her.

Now that she is gone, though, I can't get that spool of thread back together. She is out there, somewhere, dangling at the end of it, and I am unwound inside, missing her, longing for her. This feeling is more intense some days than others.

And yet, life goes on. The sun continues to rise and set. We have to go on getting up in the morning and participating in life. Sometimes it is tempting to try to make something happen so that spool can be tightly wound again - I won't lie. But it is my choice to honor my daughter's memory by living... not only that, but living as well as I can, and with as much love for those around me as possible. I'm learning to survive.