Shoes

My shoe’s strap broke today. Seven years is a good run for a pair of shoes, but these shoes were different. These were the shoes that I bought for his funeral.

The day I bought the shoes, my sister and I started our errands with a visit to the deli recommended by the church and we placed the recommended order. An intern from the hospital called immediately prior to the deli visit to get my verbal permission for a partial autopsy so that the research clinic could obtain the portion of my son’s lung needed for research. It’s strange how seven years later I clearly remember parking on the curb and sitting in the car by the ball field and talking to the doctor, slightly annoyed that my son was dead and they’d delegated this to an intern. In hindsight, it makes sense, but at the time it felt cold.

After placing our order for meat and cheese, we stopped at the Mall of America. I knew exactly the type of shoes I wanted. Plain black, but comfortable. And I found a pair of Clarks and I paid too much for them. And every time I wore them after the funeral I thought of him.

And then walking back to my desk today, I noticed the broken strap. I hid my tears well and resorted to fixing the shoe with a paper clip. Seven years and things change. Time passes. Memories remain.

Angelversary

Halos of St. Croix Valley posted a photo of a baby tonight on ECMO.  I scrolled past the first time until I realized the baby looked a lot like you.  Halos had posted a sweet celebration of your life.  Hard to believe that it has been six years since you gained your wings.  I saw the post and sobbed.  It’s now the middle of the night and I’m sitting on the couch in the living room instead of going to sleep.  I miss you to a million as of yet undiscovered galaxies and beyond.

Firsts

9/10/15

Dear Joey –

You would have started kindergarten today.  I watched the little siblings of many of John’s friends walk into the school and head to the kindergarten classrooms and my heart ached for you to be among them.  The class of 2028 will never know you.  I imagine what you would be like.  Would you enjoy soccer?  Would you rather play hockey like your big brother John?  You had the biggest feet.  We joked when you were born that you were definitely a Barker.   Would you have been tall?  You had dark black hair, just like John.  Would it have stayed black?  Or would it have turned blonde, like your little brother Luke?

John started school on Tuesday.  One of the questions his teacher asked was how many people were in his family.  This is a question that bereaved parents everywhere loathe because the answer can be challenging.  The reality is that the question isn’t any easier for siblings.  John told me, “I answered 5, but I should have answered 6 because of Joey.”  I told him that I struggle with how to answer that question as well and that either answer is just fine.  Luke has strep this week, and when John went to bed on Tuesday night, he started to sob.  I asked him what was wrong.  He told me he was afraid of Luke dying.  My initial instinct was to reassure him that Luke wouldn’t die.  But I don’t know that.  And he knows I don’t know that.  He’s already lost one little brother.  He misses you – fully and completely.  He talks about how you would play with him now, attend the same school, and enjoy the same sports.  He loves Luke and Ava immensely, but knows way too young the pain of intense loss.

Ava and Luke talk about you as well.  It’s different, because they weren’t here when you died.  They didn’t witness the first year, when I held it together pretty well during the work day but cried every evening on the way home until John finally told me that you wanted me to stop crying.  But they still know you, and understand that you are an important part of our family.  Luke will see a picture of baby and say, “Joey.”  He’ll then talk about you not being able to leave the hospital and that you are dead.  Tuesday he said, “I love Joey.  I’ll see him in heaven.”  Ava likes to say you’re in heaven “with the 3 dogs – Molly, Sadie, and Gracie.”  You are still so much a part of our family even though you’re gone.  We love you and miss you.

I wish more than anything that you had started school this week, that you would graduate in 2028.  But I am grateful for the time that we did have with you and wouldn’t trade it for the world.

Love Always,

Mom

Update

It has been quite some time since I’ve written. I have now reached 34 weeks, and am very anxious for Luke to arrive. The beginning of the trimester was rough-I threw up a lot, which was similar to the third trimester with Joey causing anxiety. I also experienced a random increase in blood pressure that my doctor thinks was a fluke, but worries me as Ava’s arrival was predicated on pre-eclampsia in the 37th week.

I was reading posts tonight from people who have become good friends, even though we’ve never met. Life changes when you lose a child. I know that some people probably thought I was cold because I didn’t cry in public very much and I didn’t have a breakdown or accept a lot of offers for help. In reality, I cried a lot in the shower and the car. I am not very good at sharing emotions. Or at letting people get too close to me. But it doesn’t mean that I didn’t appreciate the generosity and the hugs and the phone calls.

Baby boy

It’s a boy. I felt like it was a boy, but it is still a strange confirmation. I’m glad that Ava was in between. It feels like our family is supposed to have another little boy, but I’m always amazed how such happy news can also be so gut-wrenching. There isn’t a day that I don’t miss my second baby boy. I am so grateful that God sent Ava after Joey. The whole experience was different. There were new clothes to be bought, a completely different set of names from which to choose, and completely different hopes and dreams. I am grateful that John will have a brother. I know he so wants a brother. And Ava is so into her big brother and such a happy child that I really believe she will be okay being the only girl. But if I said that I wasn’t also anxious tonight, I would be lying. Holding Ava after she was born was so intensely bittersweet. I cannot help but think that will be magnified by a baby boy.

I am so thankful that the scans looked good and that he appears healthy. I’m cautiously optimistic that all will be well. How I wish for technology that could scan the lungs to see formation. Someday.

I also recognize that my good news is pretty hard on some of my new mom friends who are struggling with their own paths and their own sorrows. And I wish that my happy news didn’t make them sad. I remember being at that place on my own path.

Onsie

I saw a baby onsie tonight that read, “Just evicted.” Initially, I loved it. Then it made me sad. Joey was my closest baby to my actual due date and I joked before he arrive that if he didn’t come soon, that I would evict him (induce). Little did I know that as long as he stayed in my nice warm womb, he could stay alive. So the shirt makes me sad.

Taxes

I started our taxes. One of the first questions the software asks is changes to your families make-up. Taking Joey off the list was incredibly sad. All the things you don’t think of until they happen.

Unreal

I can’t quite grasp the idea that we’re having another baby. I’m now almost 17 weeks; almost half way done. I did start craving ice today and the smell of the parking garage is intoxicating, so I must be pregnant because pregnancy is the only time that happens, but I don’t really feel pregnant. I still it into my normal clothes, I have only gained 4 lbs, and I am just starting to see a little pouch. I’m sure the more the baby moves, the more I’ll feel like this is really happening

Two years

Dear Joey,
Two years ago at this time I was answering a zillion questions as to my medical history. The nurse doing the intake was trying to make conversation, but I just wanted her to finish her questions so that I could get back to you. You were pretty out of it – the way you spent most of your time in NICU. It wasn’t your fault-they just had you on so many paralytics and narcotics in the hopes they would help you heal. We used to joke that you couldn’t give us a bad time as a teenager because you had already put us through the ringer during your first 13 days.

I still remember your medicinal smell, although the image is fading. I wonder sometimes when I will no longer be able to conjure the smell at all.

I remember your dark black hair. A nurse washed it one evening while Daddy was with you. You looked like a rockstar.

We love you always, dear little boy.

Mom

Angelversary

Tomorrow marks Joey’s second Angelversary. I remember the details of that day with such clarity. Although two years later, I wonder if the details are as they occurred or if my memory is altered, I trust that most of the recollections are true.

The weather in Minnesota today was similar to the weather the morning of January 23, 2010. I awoke that morning to freezing rain. We knew that the lung biopsy results would be back sometime during the day. We also knew that the cut of the lung taken for the biopsy was normal on the outside, and abnormal inside. I couldn’t shake the feeling that my life as I knew it was about to change.

I scraped my car windows. I stopped at Target on the way to the hospital. Molly needed dog food. A voice in the back of my head told me that I wouldn’t have time to stop later. I bought a 17.6 pound bag of Beneful and a Keurig K cup carousel. Why I thought I needed to buy the carousel that day, of all days, is beyond me but if felt like some sense of normalcy. I bought the coffee maker the day he was born. Strange irony that I bought the carousel the day he died.

I arrived at the hospital as they were finishing rounds. They didn’t say much, deferring the discussion until later in the day after the results were in. I read to him, held his hand, talked to his nurse Joyce who had been one of his primary care providers during his stay. It was a Saturday so the coffee cart was closed. I drank water with crushed ice instead.

About noon, the doctor told us the results would be sent over in half an hour. Joyce asked if the next half hour would be long. My only thought was that it was the last half hour I could pretend my little boy was coming home. I wanted to be wrong. But when Joyce opened up Joey’s medical record, I read in her face that I wasn’t wrong.

The doctor called us to a conference room. There was also a fellow, and Joyce. The doctor told us the diagnosis – and the prognosis. We were advised that no further treatment was warranted. We were told that we would have some time to remove him from support, but not a lot of time. The circuit was failing, and Joey’s body was deteriorating.

We went back to see Joey. They pulled the sheet around his cradle. It was so claustrophobic. Joyce worked well beyond her shift making arrangements for us. She contacted LifeSource, and Now I Lay Me Down to Sleep. She took handprints, and footprints, impressions of both in clay, and locks of Joey’s hair.

Tim and I had both driven to the hospital separately. I texted my family to see where they were with John. They were at the zoo. They left for home as soon as they received the text, arriving there before we did.

They knew by our faces that the news wasn’t good. We told them Joey’s diagnosis and that we were removing him from support that evening. Tim called his family; my mom and laura handled the calls for me. I found clothes for the photos. Laura promised to take John to get his haircut. The length of his hair seems like it is something that should have been so irrelevant on that day. But it was going to be the first, last, and only time we would have the opportunity for family photos. And Laura understood all that without me having to say any more.

I wrote Joey’s last CaringBridge post. I would write as me after his death.

We went back to the hospital and hung out with Joey. LifeSource came. We answered what seemed to be a million questions. I just wanted to be with my son.

They transferred Joey to a room in another wing, where families whose babies get to go home go to learn how to care for them before they leave NICU.

My parents and Laura brought John. The staff gave him a quilt and a book that had been donated to the hospital.

They deintubated Joey. He didn’t need the ventilator to breathe – he was still on ECMO – and I wanted to see his sweet face. They disconnected his chest tubing which had been put in place to monitor the incision. I dressed him for the only time. I put him in a long sleeve onsie and wrapped him in a blanket my godmother’s sister had sent at Christmas time for him.

They brought in a chair, and transferred him from his cradle to my arms. I had to be careful because of the tubing in his neck. He was on high doses of fentanyl to make sure he wasn’t in pain. The photographer snapped photos. John sat with me on my lap. He talked to Joey, held his hand, gave him a kiss. Tim stood by the chair. We took turns holding Joey. I asked if my mom wanted to hold him. She did. My father and sister held him too.

My mom, dad, and sister took John home. Tim and I held Joey for a bit, and then told the staff we were ready for clamp off. After he was ready, they handed him to me and I sat with him on the bed. I cried, and talked to him. We told him how proud we were. We told him about the many people waiting for him. He fought a good fight. I wanted him to know that I knew that. And that it was okay to go. Tim and I both told him how much we loved him. He left this world quickly and peacefully.

The fellow came in to check his heart. It had stopped. She told us to take our time. She said, “This doesn’t change anything. Take as much time as you want.” But his passing changed everything. He was no longer Joey. He was just the body that had housed Joey’s soul.

I am not going to lie. I wanted to put him in my bag and run. But it wouldn’t have done any good. He was gone from his body long before I would have reached the parking lot. Still, putting him back in his cradle and leaving him for the last time was almost as hard as holding him while he died.

We both had cars at the hospital, but we took only 1 car home. I am not sure how I fell asleep that night.

It is now two years later, and I still can’t write this without tissues and tears. If it hadn’t been the day he died; if it had just been another day home from the hospital getting used to baby number 2, I am sure I would have remembered none of the details from that day. But it wasn’t just another day. It was the day my little boy died, and the day that a piece of my heart died with him.