His Mercies are new every Morning.

004

My story is old news at this point. Three and a half years later I can walk into a room of people and know that the first thing they see about me is not my grief, not because it’s not there, but because my body has adjusted to functioning without the tell tale signs of the sadness I carry. A grieving parent will go through their every day with reminders of their loved one every where they look.
When I wake up in the morning I pass a little girls empty bed. I walk into the kitchen and see her chair at the breakfast table still vacant. Retrieving my coat from the closet I feel a stab of pain because her tiny pink North Face hangs exactly where I left it years ago. I turn my head to back down my driveway and always notice the empty car seat where she once sat. This is all before lunch time; there are a hundred other reminders that continue to poke at me as I go about my day. To say my story is old news is accurate, to say my grief is old news would be grossly incorrect.

Last week I decided that it was time that I put Naomi’s clothes away. It was a painful process of picking each article of clothing out of the hamper and moving it into the soapy water. I was wrong in thinking that was the hard part. The hard part came next when all of the items were dried and it was time to sort and fold them. The final step was putting the cleaned out basket back in the corner of her room, and that was the hardest part of all because it too was now empty.

I wonder if the other grieving moms and dads find it hard to breath as often as I do? At times I’ll find myself holding my breath as if I’m under water. Other times I need to draw it in deeply as if I’ve been holding my breath too long. Once I exhale I usually say the words: “Lord Have Mercy”. What was once an expression of frustration, has now become a genuine prayer because I need God’s merciful strength to keep moving.

I recently discovered how much I appreciate the verse in Lamentations: “His Mercies are new every Morning“. It is packed with promises for me. God’s mercy is full of a Father’s Love, and with that comes so many rich blessings that are laid out fresh for me each morning. His strength, His comfort, His peace, His patience, His kindness, His understanding.
Even years after losing my daughter every move I make is weighed down by missing her. Most parents who have lost children will confirm that there is rarely a minute that goes by when their child’s absence is not a pressing pain on their heart. We go through daily routines like everyone else, and it would take a pointed question for us to reveal how exhausting it is to do two things at once; work and grieve, clean and grieve, shop and grieve, worship and grieve, even laugh and grieve. Every morning I need a fresh supply of mercy.

I have long ago stopped asking God why? I realized it doesn’t really matter why; would there ever be any reason that could cause a mothers grief to be extinguished? So, all that is left for me to do is rest in His merciful assurance that I will one day be in Heaven with her, where there is no more sadness, no more sickness, no more pain, and certainly no more emptiness.

Yet I still dare to Hope
When I remember this:
The faithful love of the Lord never ends!
His Mercies never cease.
Great Is His faithfulness;
His mercies begin afresh every morning.
I say to myself: the Lord is my inheritance;
Therefore I will hope in Him.
Lamentations 3:21-24

Posted in Uncategorized | 3 Comments

The backpack

2012_07_08_07_37_00

I can hardly believe it’s been 3 days since I was sitting in a another country having dinner with the families and teammates of the United States Women’s National Soccer Team, directly after their win over Germany in the World Cup. As each player trickled in, the entire room would erupt into applause, regardless of what their role was on the team, that night the sound was the same. I felt full of pride as my favorite player made her way through the tables and plopped her backpack on the chair next to mine. I couldn’t help but notice the oversized goalkeeper gloves sticking out of the mouth of her bag, her name stitched across the Velcro: “Naeher”, and I wondered what else she had in there.

I thought I was going to Canada to support my cousin who was living out her dream of playing soccer on the national team, but what ended up happening was a very different thing. She reminded me about perseverance.

What many people don’t know about Alyssa and I, is that it was she and I together who came up with the word: “Persevere” and chose it to be the mantra of our family as we battled against my youngest daughters illness.
Shortly after that we had wrist bands with that word embossed across them, and we all wore them in solidarity. Because you aren’t allowed to wear jewelry on the field, Alyssa would often stuff her wrist band in her shoe or hide it somewhere else on her body, refusing to take any kind of break from her support of Naomi. Occasionally, when I would see a close up of her on tv, I would be so encouraged to see that word peeking out from under her gloves, written in sharpy across her wrist.
Alyssa became my hero when on one visit home she lifted her shirt slightly to the side and with a smile showed me her first and only tattoo: our word Persevere, permanently printed on her body.

Monday, July 6, will mark 3 years since Naomi lost her fight to Niemann-Pick Disease and left us. It has not gotten any easier for me, and I can feel my body fighting despair as the date quite literally closes in on me. There was something cathartic about sitting with Alyssa after her game and taking a few quiet moments to talk about her journey. As I sat across from her, and remembered the young girl who helped me define Perseverance, I was able to see how far she had come, probably easier than she could because she is walking in it right now. She was driven and highly motivated, she sacrificed time away from her family and friends, she missed countless Thanksgivings and skyped in on many Christmases. She trained through pain, and played through injuries. She did not come to this place in her career without a very keen sense of where she wanted to go and pushing herself to move forward at all cost.

Since losing Naomi I have had the opportunity to meet countless other moms who have lost their children, it’s just what happens when you have something so unusual in common with other people. What surprises me however, is that there is nothing unusual about grief in general. Along with connecting to the moms, I have also found myself chatting with women who have suffered the biggest betrayal imaginable, families with broken relationships who desperately want to be mended, young girls who battle demons and fight depression, grandparents who sit in nursing homes waiting for their loved ones to visit, husbands taking care of wives with debilitating illness, people who have been confined to wheelchairs, children who feel abandoned by their parents, the list goes on. Everyone is on their own journey, and every single journey is full of blessings and disappointments, turmoil and happiness, losses and victories, ups and downs, backwards and forwards. My favorite verse right now is Hebrews 12:1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us. We’re all running the race a race together, it just looks different for each one of us.

Part of the flaw in my running pattern is that I tend to look over my shoulder a lot. I take a lot of steps forward, but then I look back to see what’s been left along my path. When I was forced to lay down Naomi, I found a very large rock and placed it in a backpack, and strapped it on my back. I don’t go anywhere without that backpack. I hold on to it like a child holds a security blanket, it is exhausting to run in a long distance marathon with a boulder strapped across my body. Occasionally, but not very often, I let a friend who might happen to come alongside me, hold the backpack for a few miles, just long enough for me to catch my breath, then I snatch it back and keep moving.
I believe there will come a day when I can lay that burden down, maybe it will be just a few miles from here, maybe it won’t be until I cross the finish line, I’m not sure, but it‘s my decision to make, and it‘s not now.
What I am sure of is that I am determined to press on, to stick to it, to be stubborn and refuse to give up, to hold on and to persevere in this journey, running alongside all of you.

PS: I know Alyssa, and all of American soccer fans passionately wants the US to take the gold medal in the finals next week, and I want that too. But win or lose Alyssa Naeher is already my hero. Thanks for running with me ‘Lyss.

Posted in Uncategorized | 3 Comments

My (sometimes) grateful heart

DSC_0291

I’m sorry to admit that in the last 2 years I have not found it very natural to be thankful. As a matter of fact I feel sorry for myself more than I care to admit.

This morning as the alarm went off at 5 am, on thanksgiving, I was definitely NOT thankful, and I grumbled as I swung my legs over the side of my bed. I was mad that I had to get up so early and put the turkey in– annoyed that I would be up late cleaning up the house after having lots of family over and super disappointed that I would have to get up early the following morning to go to work while everyone else was sleeping in. (Yes, all those emotions in that one minute it took me to sit up, get my bathrobe on and walk towards the kitchen).

Then I flipped the light switch on so I could see my path clearly and I realized… wow, not everyone in the world has electricity. And I went into my refrigerator and pulled out the 25lb. turkey to cook, and I realized that there is enough food in there to feed a large village. I stood in my kitchen and looked around, the fire was burning hot in the wood stove, my children (including my grandson) were sleeping down the hall, and the snow was falling outside while we were all safe and warm inside.

I have very little to grumble about. As a matter of fact the things that I grumble about, are often the things that are the biggest blessings in my life. My job for example. I know for a fact that God pulled some strings to make that happen. I LOVE my job, I love the people I work with– it was literally a slap in Gods face that I would be annoyed to go to a place that I love, do the things I love to do, with the people I love doing them with– just because I had something different in mind. That’s what you call ungrateful.

So where is this all leading? Except to let you all know what a perfectly horrible human I can be?
It’s leading to the place where I had a Grinch size heart make over (most likely temporary) and I prayed, thanking God– actually praising Him– for the blessings in my life.

I walked back to my warm bed, climbed inside and pulled the covers up to my chin smiling that I was snatching another couple of hours of sleep before I had to get up again. I fell asleep thinking about all the things I was grateful for and I began to dream.
Usually when I dream it’s horrible. I can’t tell you how many times a week I dream about losing Naomi. I relive her passing over and over again and wake up with my pillow soaked in tears. I have been pleading with God for a “visit” from her, like so many other people talk about, one where it’s sweet rather than painful; and this morning, I got that.

I was sitting beside someone hazy, I couldn’t see who it was, but strangely I didn’t care. On the other side of me a hand reached and took a hold of mine. I looked to see who was grasping my hand and stroking it and there she was: I saw Naomi’s beautifully healthy face smiling at me. I could see her brown eyes sparkle as clearly as if she had actually been sitting next to my bed. There was no haze, no shadows, nothing hindering my perfect view of her cherub like face. She didn’t say anything to me, but we sat holding hands for several minutes. And then it was over. I woke up and knew this was the visit I had been waiting for. It was a gift, I won’t go as far as to say that God was “rewarding” me for my change in attitude this morning, because I don’t believe He works like that. But I wonder if maybe my sadness plays a big part in what I dream, and then the snow ball effect takes over. Which leads me to believe that the change in my thinking this morning had a snow ball effect all of it’s own.

At any rate, I had the most wonderful visit from my precious baby girl this morning, and regardless of how it came about, I am probably the most grateful woman in the world today. I’ll worry about tomorrow another time.

Posted in Uncategorized | 1 Comment

Falling Behind

014

I haven’t posted many blogs lately, mostly because I have not been true to what I had hoped to accomplish in my writing. In the beginning I wrote to help myself sort through my feelings, to put words to a pain that few people could understand. Then I found that others could relate to my words, and I began to share my experiences with the intention of letting those others know they weren’t alone in the intense, agonizing, and complex feelings that come with missing someone they loved. I wanted my writings to show a journey of healing, the upward steady climb of a steep hill. The goal: to reach the top, victorious over my inner struggles, fully happy, fully healed, fully alive.

For a while I could see it happening; I had moments of genuine, untainted joy, and I was glad that I could report some progress. I thought it might be good to possibly offer hope to the other parents who were in the earlier stages of their loss, that it might actually get a little easier to bare.
But then the season changed, the smell of fall in the air brought back so many memories that I could not stifle. I walk outside and am flooded with pictures in my mind of Naomi in her Halloween costume, or the sound of her infectious giggle when she fell into the leaf pile wrapped in her fathers arms. I had to pull the bounty of colorful spring flowers from Naomi’s gravesite and replant mums and fake pumpkins. The change was a reminder that time continues to march on without my daughter, and I backslid into depression.

Here is what you don’t ever (And I do mean ever) say to someone whose child died and is in a depressed state: “Don’t you think you should just finally accept it and move on?”

Hmmm, what exactly would that look like? I mean I know she’s gone, nothing I can do about that. I am out of bed, I am dressed, I am interacting with other humans in social ways, I am cooking for my family, I am working full time. There is nothing about the change that has come from losing Naomi that I am rebelling against, but it has left a hole in me that will not be filled, it causes fits of sadness, and occasional (private) out bursts of tears. I am yearning for even one more minute with my little girl. Please do not make me apologize for that just because my life, this life I did nothing to earn, makes you uncomfortable.

Pretending to be without this Naomi shaped sadness might make it easier on some, but it makes a hard situation nearly intolerable for me. It has been making me feel more isolated than I felt in the days just after I lost her. It also sends the message to my other daughters that they should internalize the raging waves of pain that come from missing their sister. It lies to the other moms who have lost children and think there is something wrong with them because they haven’t “recovered” from the blow of losing their own precious child. I cannot do it anymore.

I am sorry if I make you feel uncomfortable. I am sorry if you were hoping I would return to “normal” after these last 2 years, 3 months, 2 weeks and 2 days. But I am still hurting. Please don’t add to that by expecting more of me than I can give.

Here is what I ask of you:
Please let me talk about Naomi.
Please don’t be afraid to let me cry
Please don’t shy away from our friendship because I’m different– I need you more now than I did before.
Please don’t try to fix me. It’s something I have to do on my own.

Posted in Uncategorized | 3 Comments

Untainted Joy

Butterfly girls

We had been planning this day for the past 10 months, actually, if I were honest I would say I had been dreaming about it for 23 years—but the wedding that Olivia had in mind was her own. She had a vision, she had a plan and I was thrilled that she asked me to be a part of making it happen.
We began by touring the wedding venues across the state, sat down with a florist, chose the perfect wedding dress and accessories; made the guest list and hand cut pieces of the invitations. We made the centerpieces, the escort cards and grew grass in tiny terracotta pots that would hold them. Every tiny detail was attended to with care, and when it was all done the final result surpassed my expectations. It was perfect. The day of the rehearsal came and the butterfly’s in my stomach began; I was so truly excited for my daughter, who was beginning her new life with the man of her dreams, that it didn’t even occur to me to be sad, which is why the next morning threw me for a loop.

My husband and I faced different directions in our bed, but we both could tell the other was awake by the heaviness our moods brought into the air. It had been 2 years since we had experienced this feeling—and this time it was so very unexpected.
When you wake up the morning of your child’s funeral, it is presumed that you will feel a sense of dread, loss, finality; but when you wake up on the morning of your daughter’s wedding you would hope for nothing of the sort.
Obviously I am comparing two totally different experiences; but there were shared characteristics. We were closing the book on her childhood and “giving her away” to begin a new life. We would miss out on waking up to the smell of her coffee, and hearing her shout that she loved us as she ran off to work. Her chair at the dinner table would be empty, and her bedroom would be deafeningly quiet when we walked past it.
I obviously recognize the differences, but there were enough similarities to bring back the memories of saying goodbye to Naomi.

The photographer was at the house to capture every precious moment as the bride and our family prepared for the ceremony. The dresses lined up, the bridesmaids helping Olivia with her hair, her fathers first glimpse of his little girl in her dress. I was watching, as if from afar, but was shocked back to the present when she commented “Lorna, can you smile?”. I thought I was smiling.

To be fair, I was in an inconceivable position. How is it possible to process so many different emotions at once? I had no idea which emotion was being displayed on my face at any given moment. One minute I was looking at my daughter adorned in the most elegant lace dress, her hair swept back and her eyes sparkling with excitement, and I thought to myself: “wasn’t it just yesterday that she was 5 years old heading off to her first day of Kindergarten?“ It was surreal, beautiful, exciting, happy. Five minutes later I was standing having our family portrait taken and I looked down the line and noticed quickly that Naomi should be standing there among us. It was empty, deficient, full of longing and sad. That rollercoaster of emotions was overwhelming,
It would have been so much easier to just feel the sadness and leave it at that; trying to push through the layers of emotions was exhausting, but this day would only come once for Olivia and I wanted to be present there with her, I wanted to soak in what she was experiencing, see all the plans we made together come to fruition, I wanted to be ALL there.

watching her dance and laugh and be happy truly filled my heart with a joy that I can look back on now and call “untainted”.
I have spoken before about choosing to live and allowing myself to be happy, but there are some times that are more difficult than others. There are times when your grief is so “in your face” that making the choice to push through the pain to find the joy is as difficult as sprinting up hill on a hot muggy day. This was one of those days for my husband and I. We accomplished it, there were hours of dancing and laughing when my grief was carefully layed aside, and I was able to think of nothing but the happiness that was in the room at that very moment. Oh, I would pick it up later, before I went home, but those gift; and I am so glad I decided to chase after it.

Posted in Uncategorized | 1 Comment

Love offerings

20140920_115123

My love language has always been giving gifts,  I especially like to craft and make things by hand.  When it came time to design Naomi’s headstone it had to be original,  it had to be representative of “her”; it had a pink tint with butterflies on it, a picture of her smiling brightly and a depiction of the eternity knot that all 3 of her sisters still wear around their necks.    I wanted people who saw her stone to practically feel our love for her simply by the care we took in it’s presentation.  After the stone was in place it became very important to me to have it landscaped in a way that would convey the same sentiment.

Every season I change the flowers and “decor” at Naomi’s grave.  I try to make it youthful, bright and as original as I can;  it’s my love offering to the child I can no longer give gifts to.

As the time approaches to change the setting,  I start pouring through craft stores, nurseries,  and even websites looking for creative ideas of what I can put together for her.   I recently went to “pinterest” looking to see if other moms had “pinned” pictures of things they have done in memory of their child,  and surprise, surprise,  there was nothing there.

So,  here is my idea.  I’d like to start a pinterest board,  and start pinning not just my idea’s,  but others as well.   My hope is to share each others inspirations and creativity as a way of making these places of memorial for our children (and other loved ones) that much more beautiful.    I am going to start with mine– but if you would like to contribute a photo of something special you have done,  please message me and I’ll add it to my board.  gravesite naomi's display 270 064 072 20140920_115304 20140920_115123 20140920_115055

Posted in Uncategorized | Leave a comment

Independence Day 2012

Naomi's picture sat on the window sill of her hospital room to make sure the doctors and nurses had the full picture of who she was.

Naomi’s picture sat on the window sill of her hospital room to make sure the doctors and nurses had the full picture of who she was.


In a distance we could just make out the colorful fireworks display. As a matter of fact, the vantage point was ideal because we were on the 6th floor of the children’s hospital with a panoramic view of all surrounding towns. Booms and cracks were heard all around us, but they were drown out by the beeps and whooshes of the multiple machines that cluttered the room.
A nurse came in to tell us that there was an even better view from “The Healing Garden“, just down the hall and out on the roof. The three older girls decided to take a walk down there and check it out, leaving us alone with our youngest daughter for the first time all day.

The doctors had told us early that morning that there was nothing else that could be done to save Naomi, that we should call our family and prepare them, and prepare ourselves. A blind was put over the window of her hospital room door, so that we could have privacy, and a cart of food and drinks was wheeled in. “Is there anything else I can do for you?” The nurse asked. I had no idea how to answer that very simple question; “I don’t think so” was all I could come up with.

Our family filed in one at a time, all with the same look on their face. Devastation, mixed with concern, and confusion– confusion as to what to say to the parents and sisters of a 9 year old who is not expected to live for more than a few more hours. We had a photographer come in– I know that sounds strange, but she was a very dear friend of mine, and I knew I wasn’t absorbing all of what was happening and that there would come a time when I would need to draw it all in. I asked her to photograph everything: us saying goodbye, the room she stayed in, her fingers curled around mine, her hair ribbon attached to her pony tail, the little scar above her eyebrow, her pink pouty lips– everything. I didn’t want to miss one thing. I have since looked at those pictures several times, and although they break me all over again, I am so glad I have them.
Before our family left, chairs were brought in and we began to sing to Naomi. Naomi loved music– when she was younger and sitting in church with us she would brighten up at certain songs. She would say “amen” very loudly after the congregation finished a hymn. Some people would turn and look for who made the outburst, but would then be filled with awe at the sight of a little girl in a wheel chair worshiping her creator.
We sang hymns, we sang children’s songs, and then my sister in law suggested that we sing Naomi’s favorite song: it was a bold request, but I appreciated it so much, because it showed the love she had for Naomi. We all started singing: “Happy Birthday to you…Happy Birthday to you, Happy Birthday dear Naomi, Happy Birthday to you ..” Tears ran down my face as the irony of the words sunk in.

.

Today marks the 2 year anniversary of that day in the hospital and the pain is as acute today as it was then. It is so difficult to make any move without forcing myself to put aside the memories of that day. My mind will not stop reliving it, my heart will not stop longing for just one more day spent with my family as a whole unit, my body will not stop reminding me just how tired I am of grief.

Grief is a funny thing; at times you feel you can’t bear it one more minute, but if you find yourself not feeling it for a moment, you become guilt ridden and embrace it fully once again.

If there is one thing I would want people to know about my grief is that I don’t want you to wish it away for me. I think the feeling is that if someone reminds me of all the blessings I have it will make me “snap out of it”. Or if I am reminded that Naomi is in a “better place” I will be glad for her. The fact is that I am already mindful of my many blessings, but it doesn’t take away the agony of missing my daughter, and although I know she’s in a better place, that place is not here with me, so no, that doesn’t really help either. Just love me, and let me cry without feeling the need to dry my tears. Know that there is no greater honor that you could offer to my family than to remember Naomi and to grieve with us.

Posted in Uncategorized | 1 Comment