19 days of living: day nineteen

One year ago today, on Tuesday, July 19, 2011. I sat up in my hospital bed (I never really slept through the night in the hospital. I was terribly uncomfortable, homesick, and haunted by nightmares.), hoping that it would finally be the day I get to go home. I begged and waited for all of my doctors to sign off on my ability to be discharged: the surgeon, the infectious disease doctor, the general physician, and my kidney doctor. The kidneys were the most fragile of my organs and I couldn't go home unless doctors were sure I wouldn't need dialysis again and that my kidney function was improving.

I waited and waited all morning until I was finally released. Everything happened quickly after that. The stitches in my abdomen were removed, my PICC line (a long, slender, tube that was inserted into a peripheral vein in my upper arm, connected to and inserted into a large vein in my chest near the heart to obtain intravenous access) was removed, and my highly potent antibiotics were ordered. We live about two minutes from the hospital, which seemed so odd during those last few days stuck in my hospital room. Like my dad said, we live so close you could spit on our roof, yet I felt so far away. 

When Chris pulled into the driveway I started crying. Not because of everything I had been through, but because I missed my home and my family so much. I had never been away from Charlie and Sofie for more than three days and they hadn't seen me at home in over 19 days! I knew things would be weird and different, and they were. I can't even begin to explain the sadness and anger I felt when I first walked into my home and for the next several days. The house didn't smell good. It smelled like a boy. I didn't smell like my perfume and lotion, like it usually does. It didn't smell like the essential oils I clean with, or the gluten free waffles and muffins I often bake for the kids. It was gross. My dogs were ecstatic to see me and jumped all over me, (That was nice.) but Charlie and Sofie were distant. They seemed awkward and clung to my mother in law. I am so grateful for the way she cared for them when I was gone, but I hated that they found safety in her and not me. I started to wonder if I should be home or not. I was in pain and I could barely walk. I wouldn't be able to use the stairs or lift anything for several more days and I was frustrated. I decided to take a nap in the bed I missed and cried for for days. I walked into our bedroom and was greeted by the bassinet. It had been set up and ready to go before we left for the hospital. It was filled with a full container of baby wipes, the Boppy Pillows (with a new, pink cover for Mila), and piles of laundry that our mothers had folded. My heart sank as I crawled into bed. I felt numb. The kids were being loud and I cried. I felt angry that I couldn't stand their voices, but missed them terribly. They had been through so much and, even though I was home, I still couldn't be the mother they were used to. It just sucked.

Today, a dear friend and neighbor walked over with a card, congratulating me on getting through the last few weeks. It warmed my heart that she understood what these last nineteen days represented. To me, they represent survival, but also survivor's guilt. I still sometimes wish that I had never gotten pregnant in the first place. I hate even thinking that as I love Mila more than anything in the world, but the pain of infertility (which I know all too well) would never have hurt as bad as this does. I keep praying that God give me hope and courage to face what He has planned. I have to believe that Mila's conception and beautiful gestation served a purpose. I try to look back fondly on the days that I carried her and she lived in my womb. It was an amazing time, but I feel heartbroken for the mother that never saw this coming, that will never see, hold,or smile at her baby. We were so sure that Mila would be fine. I still can't explain or understand the horror and shock we felt when she wasn't breathing.  I guess this is it, the low point of the last three weeks. I could go on more, but I feel a pity party coming on and none of you want to be invited, I'm sure.

I still need prayers. I still need people to tell me that Mila touched their lives, too. She was and is a very special baby. I think she knew exactly what she was doing here on this earth, that her time with us would be short. I feel her, though. Every minute of every day, she is with me.

Thank you for reading and for joining me for the last nineteen days. Thank you to those who validated my feelings and shared your own personal stories with me. I know I am not the only one who has lost a baby or a loved one. I know that we all have pain. My hope is to be some kind of inspiration, to remind others that through God all things are possible, and to make sure that Mila's short but extraordinary life touches others. I think it has, and I am grateful.

19 days of living: day eighteen

I'm almost done. Like I said in my last post, the pressure of keeping up with this for nineteen days has been tough. There isn't much time or energy to blog once the dishes are done and the kids are in bed. I'm just like my babies at the end of the day: tired, cranky, fussy, lethargic. Also, by this time a year ago, I wasn't dying. I was stuck in a hospital room, waiting to go back to who knows what. I was numb, in shock, and very confused. It would be many weeks, if not months, before I began to realize what an ordeal we had just been through. Today, I feel content saying that I did spend the last three weeks living. I said yes to Charlie and Sofie when they wanted to play, I danced, and I sang. I stopped to look at flowers, butterflies, clouds, and people. I smiled, I served, and I told my story when people asked. It's been good.

I've crossed into a new place, it seems. The place where I have funny, smart, five year old twins, AND a beautiful baby girl waiting for us in heaven. I want to live each day humbly and graciously, while never passing up an opportunity to tell people about Mila and the new life she gave me. I feel more optimism and purpose, like I'm ready for God to use me and my story for a greater purpose.

It's surprising to me that, in these nineteen days, I haven't had a really tough day. Usually, there's at least one day every couple of weeks when I miss Mila so much I can't move. I weep for her, and I long to hold her in my arms. Maybe I'm comforted by her presence more these last few weeks, or maybe I'm waiting to be done with my experiment in 'living' so I can really let it out. I'm not sure what this is about. My fear is that, now that the first year has passed, the sting of losing a child will fade. Our experience seems to have vanished for some of our close friends and family. I was surprised by those who never mentioned Mila's birthday or the fact that I am alive and well one year later. On such a sad, yet triumphant, occasion, those people who once prayed and wept for our family appear to be over it. This, if anything, is what has been the most painful. Maybe these people didn't know what to say one year later. I understand. A friend who knows what it's like told me to teach those who hurt me so they will know what to do in the future.

 So, some advice for those who don't know how to console or support a bereaved parent: 

Make a phone call, post a supportive message on Facebook or Twitter, send a text, send a card, light a candle. 

Tell them that you didn't forget, that you know what day it is and you're thinking of them and their loved one. Give a hug, say a prayer, and be grateful it wasn't you. 

I did have one of those days last week when I just didn't want to understand all that has happened. "Really, God?" I prayed. "Why did this have to happen to us?" I found comfort in a Bible verse I am coming to know. It's one that many bereaved parents rely upon for hope and comfort. In fact, there are quite a few angel babies with the name Jeremiah, waiting for their families to join them heaven.

"For I know the plans I have for you," declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all of your heart."

Jeremiah 29:11-13

I've continued to document some of our special events over the last week. Here are a few photos. 

(And, please, leave my photos here. They are mine to share, not yours to have.)

 Watching the Whiz Bang Days Parade down the street from our house. It was a hot one that day. I was happy that Charlie and Sofie hung in there.

 Sitting on the curb with my babies, waiting for fireworks. See their little toes on either side of me?

I'm no pro when it comes to photography, but here are some of the fireworks. Oooh!

The beginning of the grand finale across the lake. Again, I could learn a thing or too about photography, especially on my phone. And, by this time it was after ten o'clock and Charlie and Sofie were climbing all over me because the grass was tickling their legs. Sometimes I feel like a human bean bag chair, but I love the affection. How blessed am I?

19 days of living: days nine through twelve

I've realized with this little "assignment" I've given myself, of writing about the nineteen days I spent in the hospital last year, that I could never be a professional writer. Don't get me wrong, I love to write. I could do a book or articles here and there. But creating something inspiring, helpful, or insightful on a daily or weekly basis is not my thing (even though I do a daily reading and writing assignment in my 12 step recovery program). I think the real problem today is that I'm tired. I'm missing Mila so much and I wish she were here, that they could have revived her, that God would have saved both of us. Maybe I'm also suffering from some post traumatic stress disorder. Today, July 12, was the day I woke up from being in a coma to the nightmare that my life had become.

I have so many memories about the dreams, visions, and hallucinations I had in the hospital while I was on many painkillers, paralytic drugs, and sedatives. During the days prior to waking up the doctors and nurses experimented with the level of sedation I was on so I was kind of in and out or half-conscious at times. All I know is that this was the day I was extubated (allowed to breathe on my own, without a ventilator) and fully taken off of sedation. I remember thinking that all of my IV bags were balloons, that the hooks they hung on were decorations to bring home, and that my mom had decorated the walls with baby-themed items (none of these things true, of course). I thought there were people hiding in my room, trying to scare me and I heard many strange voices. I thought people were laughing at me and making fun of me. Sadly, I also thought for a few hours that I had delivered three babies, and that I was waiting to have them brought to me so I could nurse them or at least pump breast milk for them. I remember being mad at Chris because not only did he not bring me my babies, but he didn't even bring me my breast pump so I could at least start feeding my babies breast milk. We've all wondered if the three babies were Mila, and our boy and girl twins lost at 18 weeks in March of 2006. Only hours later, I was embarrassed that I even thought that. I realized that I gave birth this time to just Mila, and that she was gone. Other than that, I had no idea what had occurred in the last 12 days. It took weeks, even months, to piece things together and to grasp the grave condition I was in. Only now am I starting to understand that the fact that I survived is a true miracle.

This week things have slowed down. Chris went back to work and Charlie and Sofie have started two weeks of swimming lessons. Even though I'd like nothing more than to take a nap all afternoon, I've been enjoying the warm weather by swimming at the community pool with the kids and taking out our little pool to to cool off at home. I've also been busy this month with yard work.

While I was in the hospital last year, the weather was unbearably hot and humid. Everyone's lawn, including ours, took a hit and turned dry and yellow. The yard is usually my responsibility and a beloved hobby of mine as well. I love getting my hands dirty and seeing a soft, green lawn as the result of my time and care. Chris didn't have the time, energy, or interest in maintaining the lawn so it pretty much died during the days I spent in the hospital. When I woke up I asked him if he was watering and mowing and he said no. Other friends and family tried to help, but it was a lost cause. One of the saddest moments was when I stepped out of the car in our driveway to see the devastatingly dry grass. I never got it to green up last summer or fall. It served as a constant reminder of the death and loss we had experienced. I hated it.

This spring I promised myself that I would not allow the lawn to die again. I'd say it's been just as hot and humid and our lawn looks great. I've tended to it lovingly, totally determined to keep the grass green, lush, and alive!

This weekend is Whiz Bang Days, our city's annual summer festival. The kids, Chris, and I will go to the parade, maybe a craft sale, and fireworks. Poor Chris took the kids last year on his own and I was sad to hear I had missed it. I didn't realize what day it was when I woke up and I also grieved the loss of so many days of my life. I had not chosen to miss so much. I felt powerless.

Today I have some power and control back in my life. I can't change what happened, but I make choices now with much more confidence and consideration. I don't let others manipulate me or make me feel guilty. I do that enough myself! Today I am grateful not only to be awake and alive, but to be home; strong and present.

19 days of living: days five through eight

Okay, I might be getting behind on my blog posts, but hey, I'm out there living. And between vomiting children in the middle of the night and loads upon loads of laundry, there hasn't been a lot of time to sit down and be reflective. While I had hoped that 19 Days of Living was going to be full of spontaneity and adventure, it is mostly just living life with presence and a desire to serve God and those around me. I have been reading the book One Thousand Gifts by Ann Voskamp. As I read I am learning to look even more deeply into every day events to find gratitude and joy.

On July 5th, day five, we went to the Mall of America to play. That's pretty much all we did. For the last two years I have been either pregnant or recovering from my tragedy. I haven't had the energy or ability to really have fun with my children; to run, jump, and play. Part of my mission this summer is to make up for the time I couldn't be the mommy I wanted to be.

On July 6th, day six, we went to the beach. I am ashamed to say this, but in the land of 10,000 plus lakes, our children had never been to a beach. I had been invited by friends when Charlie and Sofie were younger, and thought, "Are you kidding? You want me to take two toddlers to the beach by myself. No thanks." With Chris's help, we had a wonderful morning. I sat in the shade, relaxing, reading, and writing, while Chris swam with the kids. Then, I joined them in the water. It was refreshing and lots of fun. We will definitely be back!

 Gorgeous, right?

 (Actually, I was just trying to take a decent picture of myself since Chris doesn't like taking pictures. Not too bad, thanks to Instagram.)

Mila was there, too, of course.

 

Charlie, our little beach bum.

Sofie enjoyed her ice cream treat with Daddy the most!

On July 7th, day seven, we rested. It was an exhausting week, and I needed a nap. I took two.

Today is day eight of living. We didn't make it to church because I wanted to keep sick Charlie home to rest. Of course, like most kiddos do, Charlie bounced back immediately, proudly declaring all day, "I threw up in my bed! I puked! But now I'm better." 

I'm trying to remember that "living" also means caring for myself, being kind and gentle rather than pushing myself back to what I think is normal or back to the old me. The old me, the mommy I was before Mila, is gone. I was thinking tonight, on the way home from my OA meeting, that I feel God's love so strongly since finding recovery and especially since losing Mila. I wonder if I can somehow feel Mila just as strongly. I'm trying. My faith is growing and while it is exciting, it is also surprising. I never imagined myself to be openly spiritual, or someone who praises God without hesitation. The truth is, however, that He is the only real source of strength and comfort for me right now. Chris, Charlie, and Sofie give me the love and affection I so need after not being able to hold my baby girl. My OA fellowship gives me space to share without judgement or feedback, and my beloved therapist helps me heal and look at my feelings from a new angle. But it is God and his son, Jesus Christ, that comfort me, that rock me to sleep, and give me reason to look up and forward each day. Think what you will, but at a time when I would rather die than face another day without my baby, this was the one thing that worked. Like my dad always says, it's a whole lot easier to believe than not. What have we got to lose? For me, the answer was, "not much".

So tomorrow is day nine. I can't believe I'm almost half way through those nineteen days I spent fighting for my life. I wonder if the time went by as fast last year as my family waited, paced, texted updates, ate, prayed and slept. I hope so. By now there was hope. There was a pretty real chance that I would make it, despite the heartbreak I would soon wake to. It's strange that, when I did wake from sedation, although confused at first, I knew what happened and that I was somehow going to survive. My sister wrote on the Caring Bridge one year ago today:

Laura coming out of sedation might be one of the hardest parts of this ordeal. I pray that we find the right words to help her cope and understand what has happened. I hope she finds peace somehow and realizes all of the love and support that has been here with her through this tragedy.

Because of the physical trauma I had endured, I wasn't mentally or emotionally capable of dealing with Mila's loss. Somehow, I knew she was okay, and that I was okay. The prayers for peace and understanding worked, and again, I say thank you.

 getting ready to light some 4th of July sparklers!

Hooray for freedom, and a second chance!

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.