19 days of living: days three and four

I can't help thinking about where I was one year ago. I've been reading through my Caring Bridge journal, which was lovingly maintained by my sister while I was in the ICU, fighting for my life. One year ago today, this is what my amazing sister and best friend wrote:

As the weekend has passed and I see the big Ooh Aah outside our window at North, I am thinking of so many things. I started this weekend in sadness and fear, mourning the loss of my niece, my sweet angel Mila Louise and fear for the outcome of my best friend and sister, Laura. I have watched her for 4 days now, sad that she couldn't hold her sweet baby like I could, worried for what is to come. I have held a cool cloth on her head to help the fever, held her hand, and sang her songs we were listening to on the radio. If I could take this pain from her and bare the burden for her, I would take this from her in a moment.
But now, I have hope. I hope for the moment she awakes and sees those who love her, I hope for the moment she can hold her special gifts Charlie and Sofie, and I hope for the days when her heart breaks a little bit less. So I will keep singing her songs and holding her hand until this nightmare becomes a memory, and her broken heart gets pieced together.
I love you Laura, more than words will ever know, forever.

One of the biggest challenges for me in the last year has been to accept help from others. Like my sister wrote in other journal entries, I am an independent, stubborn gal. I like to be the one helping and caring for others. Amy is my little sister. I always expected to be the one helping her, until the tables turned. I have gained humility, gratitude, and a huge amount of admiration for my sister. We are no longer big sister and little sister. We are equals, best friends, mommies. Thank you again, Amy, for dedicating your time and for sharing your heart last year. You shared my story with the world, invited love and prayers, and, ultimately, saved my life. I love YOU more than words will ever know, forever.

On to living. Yesterday, day three, was just a day like any other. We took the kids to the splash pad to get some relief from the heat. I went to the chiropractor for a chair massage and adjustment. Then, Charlie and I snuggled on the couch and watched Star Wars. It's his latest love and obsession. Thanks to my dad's (Charlie's Grampa) influence, I am now a fan as well. I almost never take the time to sit and watch a movie, especially in the middle of the afternoon. This was an especially nice treat.

Today is day four, the fourth of July. We don't have any big plans. It's so stinkin' hot outside that we might skip fireworks tonight and just do some sparklers in the yard. I'm loving the laid back pace of this week. I can't do it forever, but it's great for a few days. Yesterday my chiropractor said that I was more flexible than most of her patients. Really? A year ago I was dying. Today I am strong, fit, and flexible. I am very grateful to be a walking miracle!

I'm surprised how I can still find new ways to heal and connect with Mila. For her party on Sunday, I framed and placed on the table her footprints from the hospital. I've kept them there all week. They are cute and precious, like any baby's footprints are, and they make me feel like she is right here in the kitchen with us. It's like she also has a place at the table.

19 days of living: day two

Day two was fine. I feel proud and honored to be Mila's mommy. My Facebook page was on fire this weekend as so many friends and family members remembered our story and our sweet angel, Mila. Today I am feeling grateful, but also tired. I wonder if I'll hit the wall in a couple of days, realizing that I am in year two, that it's been a whole year since Mila was here.

I'm not sure how to think or act for the next few weeks. Last year at this time I was literally nowhere. I was in a coma and completely oblivious to the world around me. I missed 12 days of life, and spent 7 more days stuck in the hospital during a heat wave, much like we are having again here in MN. Nurses said, "Oh, you don't want to be out there. It's so gross out there in the heat and humidity." I wanted to tell them to screw themselves. Are you kidding? I've been here for 17 days! It could have been a hurricane outside and I would have rather been there, with my family, than stuck in that hospital bed.

Today was pretty normal. Chris is home this week for the 4th of July and a little staycation at home. A couple things struck me and tugged at my heart today. The first was when we went shopping as a family. The four of us were walking from the car to the store and I noticed our reflection in the store window. We were holding hands, all four of us in a row. It was like we were this strong force that could not be broken. I admired us and thought about what a beautiful family I have. We are all survivors.

The other funny and joyful thing that happened was at lunch. I am not proud of this, but it made me laugh so hard I couldn't breathe. My husband has a terrible mouth. He's a sweet, kind man, but he sure likes to curse! He said the word dumb ass, as in "What a dumb ass." Charlie and Sofie thought it was funny and, of course, I tried to keep a serious face. Charlie didn't understand the word, and tried to repeat it saying "dumass". "Daddy you're a dumass, Sofie you're a dumass" Everyone was laughing by then, especially Sofie, sitting in her corner of the kitchen table giggling while she said, "Ha Ha, dumb ass, stupid head, shut up!" over and over again. As you can imagine it would with two potty-talking five year olds, it just escalated from there. We had to have another discussion about grown up words and appropriate words at the table. Again, I tried to be serious, but I had laughed so hard at the silliness of it all. My heart felt big as I imagined Mila giggling and screaming with us. It also made me feel reassured that the four of us are ok. We are survivors.

19 days of living: day one

Today was Mila's first birthday. My head and heart are so full today, so I'm going to try to keep this brief. It was a beautiful day. I was awake and alive. No, we don't have our little Mila toddling around, eating cake for the first time, but we had her spirit all around us. She was everywhere; in the wind, the butterflies, the pink flowers blooming around the yard, and in the full moon at night. We had our family over to celebrate and just be together. Thank you to Dana Gaertner for capturing our day on camera. We can now look back at photos and remember the joy and gratitude Mila has given us. To end the day we ventured out on a night walk to look at the almost full moon and release a sky lantern to honor Mila. It was an amazing, divine day.

 A big, beautiful moon lighting our way to the lake to release a sky lantern.

it's time . . .

For the last couple of months, I've said to myself, "Gee, I should really do another blog post." I think about what I would write at the time, and then I move on, never turning on the computer or planning time to write. I have had a kind of writer's block in that I have nothing to share, nothing that I think anyone needs or wants to know. I've just been living my life. I've been living as a woman who is a stay at home mom to exciting, entertaining five-year-old twins. I've been living as a woman whose husband might get laid off. I've been living as a woman who almost died only a year ago. I've been living life as a woman who misses her baby terribly and still can't understand how something so tragic could happen so quickly. I've been living the life of a woman who is broken, yet doing everything she can to be present, grateful, awake and aware.

I'd like to share some pictures to show that while there are days when I want to hide and cry in my bed all day, there are also days that I laugh, smile, comfort, and teach. About eighty percent of my days are spent trying to be normal. People who've never met me have no idea what I've been through, and then someone asks about my tattoo (Yes, I got a tattoo for Mila that I just adore!), or asks me if Charlie and Sofie are my only children. Suddenly I have this unbelievable story that I don't quite believe myself. I don't know how to wear it, how to own it, at least not yet. So, here's a quick peek into my life lately.

  Here I am getting my tattoo. It was an amazing experience.

As long as there is time, as long as there is love,

As long as I have a breath to speak your name . . . 

I will love you.

So much of my healing has come from being creative.

 I think this is my favorite picture of Mila and I. It was taken at a time of so much hope and joy. I try not to forget that the nine months I carried Mila were simply extraordinary.

 Charlie and Sofie have made me so proud. 

They turned five on May 31st and the three of us are 'besties' as we enjoy 

our last summer before kindergarten.

We spent Memorial Day at the lake, cherishing family,

 and trying to find gratitude in the every day moments.

 My darling, Sofie, had her first dance recital in May. She totally lost her place and panicked because she couldn't find me in the audience. She danced anyways, and left the stage with a smile on her face!

 Then, only five days after her birthday, Sofie fell at the park and broke her arm. She had surgery to place pins in her elbow and set her arm. It was a strange, surreal night in the same hospital I spent much of last July in. We even had one of the same nurses I had. My mom took me back to the ICU to see with healthy eyes where I had stayed, where my family waited and prayed for days, and to meet the nurses that helped save my life. The last year seemed to come full-circle that night as I was suddenly aware of how blessed I am to be alive. What if I had died? What if I couldn't have stayed with Sofie, comforting her through a very scary time? I was back in the hospital as a strong, healthy, capable, and brave Mommy. I had to be, and it felt so wonderful.

This summer will be different. It already is. Instead of a one-year-old, I have a new appreciation for life and a deep compassion for those who are grieving any kind of loss. I'm taking a "life is short" kind of attitude most of the time. There are days I want so badly to be with Mila that I could leave it all behind, but I don't. I will have eternity with her, or so I am promised. I believe this and now I am trying to live the life God wants me to. I told Charlie and Sofie the other day about why we go to Heaven. I told them that God promises us eternal life with Mila and all of our loved ones as long as we live the kind of life he wants us to: kind, loving, compassionate, and humble. I felt proud and grateful for my beliefs, even though they may just belong to me.

 I felt grateful to be speaking to my children from a place of faith and of hope.

Mila's birthday, July 1, is just one day away. We will be having a sweet celebration with family. We will send balloons up to Heaven with messages to Mila. We will also be lighting a candle at 7:57 a.m., the time Mila was born. I invite you to light a candle as well, if not in the morning, then some time during the day, in remembrance of our sweet angel. On this special day, kiss your babies, grand babies, nieces and nephews. Spend some time with those who mean the most to you. Life is so precious and so short. We never know when it will be time to say goodbye.

Oh yeah, to kick off a year of living with hope, faith, and gratitude, I got a major haircut. It was as if I cut off all of the pain, the hurt, and the death. I feel fresh and ready to live.

Also, in order to rewrite history, I am spending the nineteen days I was so near to death, really living life. I missed nineteen days of my life last year! Charlie and Sofie missed nineteen days of their mother's love and nurturing. I know with all of my heart that Mila would want us to live life to the fullest, now that we have the chance. Please join me for the next few weeks as I celebrate 19 days of living. I will try to post as often as I can to share how we are celebrating our new life and the love little Mila Louise gave us all.

a busy day

I say this all the time, "busy". We're busy. Charlie and Sofie are busy. I've been busy. It kind of feels like an excuse or an easy response to the question, "How are you?" Yesterday was busy. It was my last day of Early Childhood Family Education, a wonderful program that includes chatting in a room with a group of wonderful, kind, and insightful parents while our kids are in preschool. It was our last day of the school year and possibly my last day ever in this terrific program. I was sad not only because my babies are going off to kindergarten in the fall, but because if Mila were here, I wouldn't be saying goodbye. It sucks and it's not fair. I didn't choose to leave, but I have to.

The rest of the day consisted of lunch, a nap, playing outside, dinner, gymnastics for Charlie, and a walk with Sofie. After our walk, my little girl and I blew bubbles. It was thrilling. We laughed, giggled, and squealed; soaked with sticky bubble solution. The entire time I thought of Mila. Mila would have loved these bubbles and the loud shrieks of joy. The wind carried the bubbles around the yard, some high into the air. I imagined Mila reaching and pointing at them as they floated away. Then I wondered if Mila was riding on one of those bubbles, dancing around in the air, coming back towards me and popping on my jeans. I think of her all the time like this. These moments make me feel light, safe, and peaceful.

Later that night, Chris's mom wrote a message on my facebook page: "Thinking of precious Mila today . . ."  I didn't understand. Why was she thinking of Mila today. Then it dawned on me. It was May 1st. Our baby girl would be 10 months. I let the whole day go by without remembering what day it was. Of course, as always, I thought of Mila all day long, but I didn't realize that another month had passed. I felt terrible.The time has come, I thought, when I start forgetting the month anniversaries, when I stop dwelling on Mila and our deep grief and start living life again.

I guess I'm grieving the loss of my grief. There's a part of me that still doesn't want to go on. I wonder why I had to survive, why Mila and I couldn't be together forever. Then I get busy. My head is so full of plans. Plans for the summer and how I can make up for the worst summer of our lives. Plans for Mila's golden birthday on July 1st. Plans for Charlie and Sofie's 5th birthday. Plans for kindergarten. Plans for the end of my duties on the ECFE Parent Advisory Council. Plans for another baby (somehow).

I also find myself pouring my grief and energy into projects that honor Mila and my experience. I've been trying to rebuild our lawn that was devastated by the awful heat wave we experienced while I was in the hospital last summer. I blame myself. I love doing yard work. It wasn't a priority for Chris while his wife was dying, and by the time I was home and physically able to do anything, we had lost a lot of grass. This spring it has reminded me of our loss and I am happy to say it looks pretty great today. Other than a few bare spots, it is lush, soft, and green.

I've also been cleaning, painting, crafting, sewing, and writing. All of these "busy" activities help me find worth in myself and my survival. They are healing, cathartic, and distracting. I've met other bereaved parents who do the same things to honor their babies or to just escape from the deep grief. Chris writes music and has created artwork for Mila and I. Baby A's dad makes amazing videos of his family and their experience. Baby M's dad writes on a beautiful and profound blog. Baby J and A's mama sews, writes, and seeks solace in her faith. There are so many of us, and we all do something as we try to manage the grief.

I can't promise I won't forget another 1st of the month. My dental hygienist, who lost a baby twenty years ago, confessed that she forgets. The sting is gone. It's just another day to her. I remember thinking that I could never forget an anniversary. Forgive me, sweet Mila, and thank you for the bubbles.

nine months

I always know when it's time to write again. My heart feels tight and heavy. The tears feel like they're right behind my eyeballs, waiting to gush out at any moment. I wasn't sure what to name this post. I chose nine months because our baby girl would be nine months old now. I saw a baby close to her age at the park yesterday and had to leave. I couldn't help but imagine Mila was alive today, swinging in the baby swing, wearing one of Sofie's hoodies or cardigans. A wave of grief, anger, pity, and sorrow swept over me so fast. I had been having a pretty good day, and then I wasn't.

Sofie's first spring, 2008

I thought of naming this post 7 babies. Sofie has asked me many times, "Mommy, how many babies do you have?" It makes me wonder if she knows what I know, that I have a total of seven babies. I have two beautiful, living children, and five, yes, five babies waiting for me to hold them again some day. We started trying to get pregnant when we were 27. My body was doing nothing. It was like I was in menopause already. It took huge doses of fertility drugs to finally get me to ovulate and when I did, we had four embryos, quadruplets! After reducing the pregnancy to twins (and saying goodbye to two otherwise healthy fetuses), we thought we would soon have the family we dreamed of. Then, at 18 weeks, on March 30, 2006, we lost the remaining twins. We had four babies, then we had none. March was incredibly difficult this year as I felt very aware of how much we have lost. We have Charlie and Sofie, our greatest treasures, sandwiched between two horrific losses. It just feels so sad. Poor us. Someday we will tell Charlie and Sofie about their brother and sister, and the two babies we never knew. For now, whenever Sofie asks, I say that my babies are Charlie, Sofie, and Mila. "Who else?" She asks. I say, "I don't know, who else?" "Molly and Wesley!" She cries out. Oh yes, our dogs Molly and Wesley. I guess they are my babies too.

I've been reading so much about loss, stillbirth, and living through similar tragedies. One book I am reading says that we no longer ask, "Why did this happen?", but begin to ask, "What do I do, now that this has happened?" I am still just so devastated. Now that Mila has died, and we didn't get to bring her home and pour our love and our life onto her, what do we do? Although I wish I could some days, I can't go back to a time when it was just Charlie and Sofie and I didn't want another baby. I have faint memories of those days.

 enough

I felt so grateful and so satisfied with my life, but now there is a huge hole. I feel like I have wanted Mila forever. Something is missing now and nothing feels, tastes, smells, looks, or sounds as good as it used to before our tragedy. I wonder if I will be able to go on living this way. Can I live the rest of my life without ever feeling some resolution or peace after our perfect baby was taken so suddenly? I don't want to. I don't see it getting better or easier. What a shame.

After a wonderfully mild winter, we are having an early spring. We have had glorious days in Minnesota where the temperatures are around 70 or 80 degrees in March! I love this time of year. It symbolizes a time of rebirth, and reminds me of the times I was pregnant with Charlie and Sofie, and with Mila. I also could have called this post then and now. Last year at this time I had a big, beautiful belly. I felt gorgeous, not quite so big that I felt gross and awkward, but glowing with life and with love. We were preparing our home and our lives for Mila's arrival and I was looking forward to summer with a new baby. These are some of the happiest times of my life so far. I wonder if I'll ever feel that kind of humble, amazing joy again. Family, friends, and neighbors showered me with well wishes, love, and support. It seemed as if the whole world was waiting for our sweet girl to arrive. Sure, this spring I feel more comfortable, more flexible and physically active, but I would give anything to relive that time with Mila, when she was alive and here with me.

 joy

 miracles

Life is moving forward, and I believe that Mila is here with us for all of it. I don't feel like I need to write to her or visit her because she is here, in my heart and in my soul always. Charlie and Sofie will be entering full day kindergarten in the fall and we are going to continue healing and watching for miracles. Sometimes I think that if I can't have Mila, then I don't want anything or anyone. I feel like a two year old having a temper tantrum. The truth is, however, that we're not done. We pray that God's plan for us includes another baby, somehow. Until then, I will be with Mila and she will be with me. I will pray for peace and accept the love that continues to flow in. There. Now I feel better.

another birthday . . .

It seems I have started a new ritual of posting here on Mila's birthday. Today our sweet angel is 8 months old. I miss her so much. So, so much.

This week we are also celebrating the birth of my sister's daughter, Adelyn. I was honored to be present during her delivery and the effects this experience have had on me are profound, to say the least. Being there for Baby Addy's birth brought back memories I thought I had lost forever. I remember pushing Mila out, having no idea that our baby would be stillborn. I remember Chris cheering me on the same way my brother in law encouraged my sister with enthusiasm and humor. I also remember feeling so much weaker than my sister was. Infection was taking over and I grew weaker and weaker by the minute.

When Adelyn arrived she was full of life; screaming, wiggling, vibrant life. She's beautiful, like our Mila was. Our traumatic loss caused all of us to worry and fear the worst, but little Addy made it. I'm so relieved, so grateful that she is here. My sister is too. In a way, Addy is the baby girl we all need right now. I feel drawn to her, like she and I share a special secret. When she was crying on the warmer, my voice calmed her. My touch caught her attention. It was quite magical.

It seemed as if Mila and I were a team that day.I prayed that she help bring my sister's baby into the world safely. I prayed that God surround me with courage, strength, and peace, knowing my baby girl was near.

My sister means everything to me. When our baby died and I was fighting for my life, she stepped in and helped take care of my family. She was my advocate and spokesperson. She fed me my first meal, spoonful after spoonful of ice chips, and held my hair back when I couldn't keep anything down. I will never be able to repay her for all she did for me. I'm not going to lie, however. I am so jealous of my sister. She gets to hold and feed her newborn baby. She gets to bring home this new life and enjoy the blissful exhaustion a new baby brings. I'm not sure how I'll handle this joy when my heart is so broken. I feel so bad that our experience casts such a shadow over this otherwise wonderful time.

Today I was driving home and I heard a song on the radio that spoke to me. Lots of music touches my heart lately. I've uploaded most of it onto my phone, of course. So many things inspire me, comfort me, and stir up the emotions inside me.

When you’re dreaming with a broken heart,

And waking up is the hardest part,

You roll out of bed and down on your knee,

And for a moment you can hardly breathe.

Wondering was she really here?

Is she standing in my room?

No she’s not. Cause she’s gone, gone, gone, gone, gone.

When you're dreaming with a broken heart.

The giving up is the hardest part.

She takes you in with her crying eyes.

And all at once you have to say goodbye.

Wondering could you stay, my love?

Will you wake up by my side?

No she can’t, Cause she’s gone, gone, gone, gone, gone.

Dreaming with a Broken Heart by John Mayer

I dream of one day having another baby, somehow. While we've started to look forward to the next journey, we can't help but wish we didn't have to be in this place. I've had a lot of moments lately where I just can't believe what happened to us. I beg God to let me wake from this nightmare. That's not to say we don't have good times and good days. We do. It's just so hard to understand, still, why this happened to us. My therapist has helped me understand that we were victims of a horrible tragedy. I read recently, however, that we have the choice to be victims or victors. Maybe one day I will feel victorious over my loss and heartache, but not today. Today I feel like a victim. A grateful but very fragile victim. Happy birthday Baby Mila. I miss you more every day.