Love

We need love to survive. It's a basic human need. I've read some stories recently of human beings who are not getting the love they need to survive, and it is tragic.

This year at Valentine's Day I'm appreciating our capacity to love a little bit more. Sometimes that means loving the ones who are closest to us, going out of our way to let them know we appreciate them. Other times it means reaching out and loving those who are further away, or those who are not as easy to love.

Someone said that in our houses many of us have two sets of dishes. There is a set of every day dishes that are chipped, worn, and mismatched. We knock them around, we use them hard. Then, there is a set of good dishes that we get out when company comes over. This set we give special treatment. We handle it with care, we make sure it doesn't get chipped. Sometimes we don't even allow it to go through the dishwasher, instead cleaning every piece lovingly by hand.

So I ask myself, how do I treat the people I'm closest to? Do I treat them like the every day dishes, or do I treat them like the fine china? It's too easy to treat the members of our families like the every day dishes. We don't tell them we appreciate them. We don't show them extra special love and care. Instead, we save our best treatment for the people we work with, go to school with, or go to church with.

I want to treat the people close to me like fine china. I want them to know how special and loved they are. Even though it's hard at the end of a long day, these people are the ones who mean the most to me, so I need to take extra special care of them.

This is one thing that Liza tought me as well. We didn't know how many days we had with her, so each day was a precious gift, a miracle. She helped us to cherish her, to cherish each other. She helped us to stay in the moment and appreciate the beauty of what was right in front of us.

That can be a little intimidating, at least to me, when I'm really honest with myself. One song I love talks about "the scary, scary beauty of what's right here." It can be hard to stay in the moment, to be present, to look around at the imperfection that surrounds us and say: this is beautiful. This day, this moment, is beautiful.

At Valentine's day this year, I want my loved ones to know that they are loved. Now is as good a time as any to give that fine china the loving care that it is due.

An Ordinary Day

Today is special. It is a gift. Especially if it has been… boring… uneventful… tiring, even, in its monotony. Living an ordinary life, full of ordinary routine days, is precious.

 

Too often I motivate myself by focusing on an upcoming event, such as dinner with friends, a family gathering, a favorite holiday, a vacation. It is so easy to forget what a blessing the non-eventful days are.

 

I was reminded of this poem that I stumbled upon when I was pregnant with Liza Jane, wrestling with her diagnosis, grieving over the fact that my baby girl would have to struggle to draw breath, go through painful surgeries, and may not ultimately survive. I was longing for the simplicity and innocence I had before I knew about her illness.

 

“Normal day, let me be aware of the treasure you are.  Let me learn from you, love you, bless you before you depart.  Let me not pass you by in quest of some rare and perfect tomorrow.  Let me hold you while I may, for it may not always be so.  One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.”

Taken from Mary Jean Iron’s Let Me Hold You While I May

 

The imagery in that last sentence rings so true of the grief process. It is a strong, disturbing picture of someone who is walking through a very non-ordinary season of life, and longing for the calm, routine days of the past.

 

It’s easy for me, when walking through grief, to feel like ordinary life is futile. The book of Ecclesiastes really resonates with me in this season. Everything is vanity, everything is meaningless.

 

There is nothing better for a man than to eat and drink and tell himself that his labor is good. This also I have seen that it is from the hand of God. For who can eat and who can have enjoyment without Him?

Ecclesiastes 2:24-25

 

There is grace, even in the midst of tremendous pain, to be able to enjoy the routine of ordinary days. Solomon, whom God gifted with extraordinary wisdom, knew that there is nothing better than to enjoy the fruit of our labors on these mundane days.

 

I am thankful for this ordinary day. I do not know when some new tragedy may befall my family, my friends, this country, or our earth, that will cause all of us to dig our nails into the earth, to bury our faces in the pillow, to stretch ourselves taut, or raise our hands to the sky and want, more than all the world, for this ordinary day to return.

"I know just what you are going through!"

I love it when people share their own stories of grief, suffering, and loss with me. There are many things I can identify with in the stories that others share. It helps to know that I'm not alone, that other people wrestle with the same agony and questions that I'm going through.

Having said that, there are some circumstances that just don't compare. For example, a co-worker recently shared with me that he understood what I'm going through, because his wife lost their first child due to a miscarriage somewhere around 3 months gestation. I appreciated the fact that he was trying to reach out and sympathize, but the way he did it just grated on me. He acted as if the experience of pregnancy loss is the same as the loss of an infant. No doubt, both are painful in their own way. However, losing an infant that is 7 weeks of age is not the same as a miscarriage.

One of the things that people who have walked through the most painful kinds of grief intuitively know is that they don't know exactly what anyone else is going through. The deepest losses sharpen our sympathies and cause us to realize that we really cannot compare the uniqueness of our situation to anyone else. A dear friend who has been following this blog knows exactly this - she and I have unique and different situations, and yet there are similar emotions involved. We can express how sorry we are for each other's experiences, and ask the other what are going through. And then we can listen. Because beyond that, it is not fair to say we have been through what they have been through. We haven't.

One woman in sharing about her grief after her husband died described eating alone at home a lot, because she wanted to avoid going out and feeling exposed. I can truly identify with this feeling of exposure. People ask the most innocent of questions when I'm in public that feel like sandpaper on a raw and open wound.

For the woman who lost her husband, "are you married?"

For the parents who lost their only child, "do you have any children?"

This kind of exposure becomes even more acute when someone, usually a perfect stranger, claims to know exactly what you are going through. "Oh, you lost your baby at 7 weeks of age? I know just what you are going through. My grandmother, who practically raised me, just died last year at 82 years of age. I know how hard this is for you."

No, my dear fellow human being, you do not know. People's grandmothers are supposed to die when they get older -- it is the natural order of things. People's children are not supposed to die. You are supposed to die before your children, watching them grow strong into their mid-life years as the flame of your candle waxes dim.

I've come to believe that avoiding this kind of exposure during the most painful times of grief is okay, that it is a healthy form of self-preservation.

At the same time, there are times when human contact can't be avoided, and that is okay too. It teaches us (or at least me) to be patient with others, to give them grace, because Lord knows I have probably made the same mistakes. An innocent attempt to identify with what someone is going through can instead create a sharp contrast that clearly highlights the extent to which I don't know what they're going through.

And so I've learned that the best response to someone's expression of a terrible experience is, "Wow, I cannot imagine what you are going through. I am so sorry. What is this like for you?"

And then... I just listen.

Grief Is a Shape Changer

Just when I think I'm getting stronger, the loss strikes in a new way. My friends know that my usual approach to challenges in life is to overcome them. It is my M.O., my recipe for success. Grief, though, doesn't behave like other challenges in life. You can't just overcome it, deal with it, and move on. And that seems like an impossible statement to me - can you tell I'm still trying to figure this thing out?

Last weekend I felt like I was getting a handle on this grief thing. It seemed as though I had unlocked some new secrets for how to move on - and to be fair, I had.

For example, one of the struggles I have had is why this happened to us. Why did God choose us, a young couple who longed for children and wanted nothing more than to give them a loving home? Why did he allow us to have a baby who would be born with illness and die far too young? The experts say you shouldn't try to figure out "why" when dealing with grief, because it short circuits important emotional processes that need to take place. You have to fully embrace the pain, the questionning, the longing, and not try to rush to answers. This is hard to do. It is especially difficult when there seem to be so many individuals who do not "deserve" a healthy baby, popping them out all over the world. It is difficult when I hear of parents who have abused or neglected their healthy babies. It's difficult when I hear of mothers who abuse alcohol or drugs while preganant, when I would have done anything under the sun during my pregnancy if it would have cured her.

This has been such a source of internal conflict for me that I have found it hard to relate to anybody who has, or is having, a healthy baby. I've found it hard to remain in a state of joy when around these people. But this weekend, I had a bit of a breakthrough. My devotional book was talking about joy robbers, and covetousness is a big one. There is a difference between asking "why" versus being just plain jealous. It's a fine line because it's important to be honest with God about the "why's." It is important to tell God we think it's not fair, to be brutally honest and let our anger out before him. But a fine line is crossed, at least for me, when I dwell more on the "it's not fair" thoughts than on the thankful thoughts.

And that brings me to the breakthrough I had over the weekend. Thankfulness. That is the key. I believe thanking God for the blessings we do have will neutralize the acidic buildup of jealousy.

"But... covetousness, let it not even be named among you... but rather, giving of thanks." (from Ephesians 5:3-4, NKJ)

So I found that when I returned to thankfulness, the bitterness toward others really did melt away. It was amazing, like a little miracle in my heart. And I thought, I might be doing it! I was overcoming this grief thing, through the grace of God, and it was not getting the better of me.

Not so fast.

Yes, that moment was an important milestone. But fueled by my newfound victory, I decided to tackle a new and daunting challenge: Gathering things from Liza's bedroom to put in her memory box. This is the first step in cleaning out her room. The idea is that after I identify things that I am setting aside to remember her by, I will be able to start cleaning out the rest of her room and deciding what to do with all the things she never got to use.

It's not a huge room as far as bedrooms go, but crammed into it are a crib, bassinet, glider rocking chair, changing table, diaper pail, hamper, stroller, car seat, bouncy seat, bumbo seat, papa-san, and full size standing swing. Yes, we took everything that said "baby" and pushed it into that room, closing the door to deal with it later. That includes the entire contents of her closet (newborn to 3 month clothes) plus all the boxes of clothes we received as hand-me-downs, carefully labeled: 3-6 months, 6-9 months, 9-12 months... All the months she did not survive to see.

She never got to use most of these things since she never came home from the hospital. So one would think there wouldn't be painful memories tied to them, right? It would be easy to let them go, right? Not exactly. Each one of them represents an activity I thought I would do with her in that room, in this house, that never happened. And it's a hard thing to let go of all the things we never got to do.

So, what was so hard about filling that little memory box with a few momentos? Well, it wasn't very hard actually. I did it in about an hour flat, carefully selecting the few button up sleepers she was allowed to wear over her hospital wires, the cards and momentos I had wanted to save, her little handprint cast in plaster.

Piece of cake.

The 48 hours that followed it was the killer. I was plunged back into the depth of sorrow with no warning, and I was caught off guard. I had been doing so well. But grief is all about going with the flow, allowing the sorrow to rise and fall like the tide. Just when I think I've got a method for dealing with it, grief goes through a metamorphosis and hits me in a new way. It's a shadow that follows me around, like Peter Pan's shadow did, doing things behind my back that I'm not prepared for. And so the journey continues. It's too late, I've already grown up, and the escape hatch to Never-Never Land is nowhere in sight.

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.

What's the plan?

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

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

And I mean that in the best possible way.


Liza Jane at 2.5 weeks.


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

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

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

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

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

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

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

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

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

Back to the Routine

Well, the holidays are over, and I won't lie: It feels good to be back to normal. I've found that the routine of the weekdays is a sanctuary in the grief process. And on this Saturday, we are enjoying a break from the cold with some much needed sunshine and 55 degree temps! Thank you God! I drove home today from the grocery store with windows down and winter coat off, which holds its own kind of simple joy after a cold snap.

I'm also glad the holidays are over because they were hard - really hard. For a period of several days, I just wandered around the house. There were goals I wanted to accomplish, like cleaning out closets, but it didn't happen. To be honest, it was an achievement just to make it to the end of the day most days.

Grief is a strange animal. There are days that are really dark, and there are days that are not so bad - even good sometimes. Now don't get me wrong, not a single day goes by that I think of her. But I've been thinking a lot about the strange mix of sadness, longing, missing, and joy that happens in the grief process. And let's face it, if there wasn't some joy, something to be thankful for, we wouldn't be able to go on.

I've been working my way through a devotional book, The One Year Book of Hope, by Nancy Guthrie. Now, if you are going through grief, I know the first thing you will ask is: What gives her the right to talk to me about hope right now? Well, she has been through it, folks, and she is still alive. That's all I will say, and you can read her bio here.

So, here is an excerpt from the entry I read today in her book.

"Sometimes we are afraid to laugh lest people think our pain has passed or that our sorrow has been a sham. But just as tears give vent to the deep sorrow we feel inside, laughter is evidence of the deep joy that abides, even in the midst of sorrow, when our hope is in Christ. Mysterious and amazing joy that has nothing to do with denial is part of what it means to grieve differently from those who have no hope. Laughter reveals that while grief may have a grip on us, it has not choked the life out of us. Laughter takes some of the sting out of hurt. It gives us a perspective and relieves the pressure. In fact, laughter helps control pain, not just emotionally but physically. It increases the production of endorphins, our bodies' naturally produced painkiller. It gives us a mini-vacation from our pain. And don't you sometimes feel as though you would like to take a day off from your sorrow? Won't you give yourself permission to laugh a little and enjoy some relief from the pain?"

So, today it's time to a deep breath and allowing  myself to experience laughter. I'll leave you with this today. "A joyful heart is good medicine, But a broken spirit dries up the bones." Proverbs 17:22 (NAS)

Allowing laughter to take some of the sting out of the hurt. (NYE 2011)

Happy New Year

Would Liza have liked this?

That's the question that goes through my mind just about anywhere I go. We got to visit the floor of the Grand Canyon during our New Years trip, and it was all I could think about the entire time.

In the past, I would have been much more focused on absorbing the colors and the sights, capturing forever in my memory the experience, being thankful that I have eyes that can see and legs that can carry me to places like this.

Don't get me wrong, I am truly grateful that I have had the opportunity to visit such an amazing sight. Since she left us, though, everything is different. My first thought at very turn is, "would she like this? Would she have wanted to do this with us?"

We will never know, though, what our little girl's preferences would have been, what she would like and dislike. What her favorite color would have been, or her favorite bedtime story, or her favorite bath toy.

I don't know what is more difficult for parents who have lost a child: losing them young enough that they have to wonder who they would have become, or losing them at an older age. One family I have been following tragically lost a daughter at 5 years old, and many of her favorite things bring back constant memories of her. Each circumstance is difficult and unique.

What further complicates the questions about Liza's preferences for me is the fact that she was born with Down syndrome. I haven't written yet about how we were prenatally diagnosed, which I will do someday. Suffice it to say that Luke and I knew our girl would come with a special extra chromosome in every cell of her body. About half of the individuals born with Down syndrome also have a congenital heart defect. Usually these are very operable, but in Liza's case, it was a more complicated defect, and in the end she did not survive the recovery after surgery. She passed away at just over seven weeks of age.

I don't know very many people with Down syndrome, but from talking with friends who are priveleged enough to have close family members with this condition, I know they don't always enjoy the same things as others might.

So on this trip, I was wondering, would Liza have liked the helicopter ride that brought us to the Grand Canyon floor? Would she have enjoyed the experience of being in these surroundings like her daddy and I did? Or maybe she would not have been comfortable in this environment, would not have found it fun, but rather scary or irritating. It's one of many questions to which we'll never know the answer.

In the meantime, I think of her wherever I am, wondering what it would be like if she were here. This poem has been on my heart today as I remember her, one day after the anniversary of her death, so I will close with these words.

Only Wanted You

They say memories are golden, well, maybe that is true.

I never wanted memories, I only wanted you.

A million times I cried.

If love alone could have saved you, you never would have died.

In life I loved you dearly, in death I love you still.

In my heart you hold a place no one else could fill.

If tears could build a stairway and heartache make a lane,

I'd walk the path to Heaven and bring you back again.

Our family chain is broken, and nothing seems the same.

But as God calls us back one by one, the chain will link again.

- Vicky Holder

Have a blessed year in 2012, everyone. Hold close those that you love and thank God every day for their lives. We don't know the number of days that each of us will have, and every moment we are granted together is precious.