Month: May 2017

We went to the zoo today. Perfect weather, picnic lunch, polar bears, horse-drawn wagon ride… all that good stuff.

I enjoyed Bryson, I did. I just had a deep, distracting ache in my heart. Everything I saw, I wished I could show to Brody. Everything we did, I wished we could do with Brody. His absence went everywhere with me.

All morning I kept thinking: I should be at work… Brody should be at daycare and I should be at work. It should just be a normal Wednesday where I wish I was at the zoo, enjoying the sunshine, but I can’t because it’s a work day and I’m at work.

Most of the time I feel like I’m living in a movie – something that I watch, distance myself from when it’s uncomfortable, and then forget about after it ends. That’s what I would like to think of this as – just temporary, just an illusion.

Today was the first supper in a long time where Bryson did not pray for Brody to come back alive. Jensen and I gave each other a look of relief. We have had many conversations explaining that although we all want him to, Brody cannot come back to life. His body stopped working. He’s in Heaven now.

One evening, Bryson said he wished he could stop breathing so that he could be with Brody. That stung, because I think that too. Of course I do. I’m not going to hurt myself – you can be certain of that. But the rest of my life feels like an absurdly long time to wait to see my son again. It scares me to think that Bryson could hurt like I do, that he could miss Brody so much he has moments when he just wants to die too. He’s too young for that. Even I’m too young for that.

But here we are. This is not temporary. It’s not an illusion. We have this beautiful life, full of love, and it hurts to live it right now.

I often feel incredibly uncomfortable and vulnerable just doing the most normal things. I worry that people are judging me – that they see me smiling or even just functioning and they question my love for Brody. If someone asks me how I’m doing and I answer fine, I chastise myself for such an inappropriate response. But I don’t know what to say when people ask.

I believe, stubbornly, that miracles can come from this. I believe I can grow in life-changing ways. I want to. I don’t want to go through this hell and be the same on the other side. When or how or even why alludes me entirely, but I will keep reading, and praying and going to the zoo. I will keep eating, and meditating, and watching movies. I will keep being in the moment, broken and distracted, for as long as it takes to be whole.

The next morning, I did not feel stable. All I could think was that I can’t survive without exoneration.

I spoke again with the metabolics specialist who we’ve known since Brody was diagnosed in the NICU. She reassured me that it was very likely more than his sugars that led to his death and that regardless, we did everything we knew to do. We couldn’t blame ourselves.

I prayed with friends and told myself God loves me despite my failings.

But I kept replaying Brody’s last night and morning in my mind. Everything I did was wrong. I tried to feed him before I went to bed, but he didn’t want the bottle. I SHOULD HAVE TRIED AGAIN! In the morning, I saw myself going into his room to wake him up. I SHOULD HAVE WOKE HIM UP SOONER!

When I finally saw a psychologist late that morning, she listened as I explained this torment.

“I go into Brody’s room sometimes,” I confessed, “and tell him that I’m so sorry. I’m so sorry mommy let him die. I’m so sorry I killed him.”

She responded: “You need to apply logic to this thinking.”

I thought to myself: Isn’t that what I’m doing? Haven’t I come to the realization of my guilt through logic?

She didn’t think so. She explained it as “distorted, emotional thinking.”

I heard that and the pit began to widen. I could look up. I could see all the people on the surface, encouraging me to come back to the light. But I was still unsure. I feared that if they saw me in the light they would despise me. I wanted them to know I was desperately sorry. That I despised myself, that I knew I was an unforgivable failure.

I told the psychologist exactly what I thought I should have done differently. I told her my moments of failure and what I wished I could change if life were at all fair and I could go back in time for a second chance.

But I still couldn’t convince her that I was a negligent mother. And Jensen, sitting next to me, didn’t believe it either. I told him how I was terrified I would lose his love – that he would never forgive me for letting this happen to our baby.

Jensen just wanted me to see what he saw. He didn’t see me as a failure, not at all. He saw me as an attentive, loving mother and he wanted me to see that too. Whatever led to Brody’s rapid decline that morning, it wasn’t my fault. I needed to set myself free.

Alright, I finally reasoned, maybe I won’t let guilt destroy me. And I began to crawl up from the darkness, back to the light of love.

On the way home from our appointment, I saw a text from a friend: When I said, “My foot is slipping,” your unfailing love Lord, supported me. When anxiety was great within me, your consolation brought me joy.” Psalm 94:18-19.

That was for me in that moment. Amen, I thought, and read the verse to Jensen.

The rest of the day was a struggle, but I felt like I had the tools I needed to regain control of my thoughts. I repeated in my mind the phrase “distorted, emotional thinking,” like a kid writing lines on the chalkboard after school.

That night, I told Jensen how scared I was of guilt; how I saw it as a pit that would always be in my life. I would need to be careful every day not to let myself fall in.

“But it will get smaller,” he assured me confidently. “I know it feels like a chasm now – hard to avoid – but eventually it will be like a little golf ball hole.”

He was smiling. I smiled too. I thought of a golf course and the tiny holes that no one ever falls in. I felt braver.

“Yes,” I agreed with him. “Guilt will get smaller.”

I read recently that many parents who lose a child often feel unworthy of sympathy and comfort because they blame themselves for the death of someone they were charged to protect. 

That’s brutal. That’s so ugly.

I read that and thought: We won’t have to deal with that. Everyone knows this wasn’t our fault.

The next day, my family doctor informed me that one theory for Brody’s death was simply that his blood sugars had gotten too low. I was devastated. That would mean his death might have been preventable. How could I ever live with myself if that were true?

I heard guilt speaking to me and I agreed with everything she said.

Guilt sounded like another mother, telling me in disgust that I should have known better – that I should have done more. She never would have been so confident in Brody’s progress. She never would have ignored his disease the way I did. Never. If she were his mother, she never would have let him die.

Guilt looked like a close friend. She could see all of my imperfection, all of my insecurity, and she didn’t see any of it in herself. I failed unforgivably. She knew it and so did I.

I cannot remember another time in my life when I felt so unworthy of love. I slid into a deep, narrow pit of guilt. As dark and suffocating as it was, I believed I deserved to be there – hidden from the world.

It was so dark in that pit, I felt like the light was gone from my life forever. I could not see a way to find peace. Happiness was impossible. Those who loved me would learn what I had done and despise me.

On Tuesday night, I was frantic, overwhelmed and unable to sleep. I didn’t want to wake Jensen because I felt I’d been such a burden to him already. I began desperately texting friends: “Are you awake?” “Are you awake?” “Hey, I’m so sorry. Are you awake?”

Jensen must have heard and he got up to check on me. He took my hand and said, for the first time in his life, “Maybe we could do some yoga.”

“What?” I asked.

“You like that. It will help. Go ahead. I’ll follow you.”

“Okay. Start in table top,” I explained. “Inhale. On your toes. Exhale. Downward facing dog. In hale. High plank. Lower. Chateranga. In hale. Exhale.” And so on.

I was distracted. I was breathing. I was doing something that has always made me feel powerful and peaceful. I wasn’t alone.

When we got up from child’s pose, Jensen brought me a glass of water and a sleeping pill. He said kind, calming words and reminded me that we’re going through this hell together. His love and compassion pulled me up from the pit for a while, and I made it through the night.

Three weeks today.

I’m numb and cold this morning. I feel like I’ve been wondering in circles, looking everywhere for a road that leads to Brody.

There is no road to Brody. There is no road to what we once had. But I don’t want to go anywhere else. How do I move forward when there is no road?

I asked God last night what I need to do to be happy again.

God said: Remember.

That’s a terrible answer, I replied. I want a different one.

So, God said: You can’t forget.

But God, do you know how much it hurts to remember?, I asked. DO YOU KNOW HOW MUCH IT HURTS?!!

And God answered: Yes.

Brody is worthy of being remembered, I know this. And of course, I really do want to remember every little thing about him that I possibly can. But I also don’t feel strong enough to remember. I haven’t found a way to remember – to feel the love I have for him – without wanting my heart to stop beating.

When I watch the video of Bryson and Brody sitting together on the couch, Brody in a fuzzy blue sleeper, Bryson reading him his favourite book – I see Brody’s sweet face follow along with each page, I see the way they love each other… and I absolutely can’t cope.

When I go in Brody’s room and see a closet full of clothes he used to wear, toys he explored and the books I would read him, when I see his crib and his stuffed pooh bear with the crinkly ears he loved to play with… I want to light it all on fire.

I have no peace in those moments. I have no peace when I remember. But that is what I need to do – the most excruciating thing – in order to heal.

Somehow, God will lead me to a place where I can remember Brody, embrace my love for Brody, and still have peace.

That sounds impossible. The remember road looks to me like pain unending. But I have to try. I don’t want to follow fear’s voice. I don’t want to go down the road of guilt and shame. So I will choose to follow God’s voice, however unbearable. I’m desperate. I can’t stay here. I really need somewhere to go.

We went to church this morning. Our first time as a family without Brody.

We drove past the parking lot for families with infants and toddlers; we can’t park there anymore. We walked past Brody’s classroom – that was the hardest part.

I walked those halls and wished I was holding 27lbs of happy, handsome Brody.

In the service, we sang Hillsong United’s Hosanna. The song was released when I was 22 and oblivious to how unfair life could be. I remember belting out the lyrics ten years ago, fully expecting that I’d work hard, be good, and get everything I wanted in life.

It’s a different song now.

The words are the same, but my heart is saying something different. Then, it was saying please give and thank you God for giving. Now, my heart says please take. Please, take my life and see if you can do something good with it.

I don’t want to work hard and be good just to get what I want anymore.

Getting what I want is wonderful. Not getting what I want can be total shit. But I’d like to find more meaning beyond all that.

As the song says:

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me

Break my heart for what breaks yours
Everything I am for Your kingdom’s cause
As I walk from earth into eternity

Hosanna in the highest

I want to write something a bit happy for a change. For those of you following me on this journey – thank you. I appreciate all of you who are willing to cry along with me. I hope this post makes you smile.

This morning, friends from our church, Pastors Jono and Nicole, came over with their three gorgeous kids. They brought Lego and smiles for Bryson who loved the attention (he never gets sick of attention that kid).

Nicole brought me a beautiful Sugar Blossom bracelet that says HOPE and has a B engraved on a heart charm. It is such a thoughtful gift. I love it. Bryson says that the B stands for Bryson and that if it doesn’t (because I think he knows it doesn’t) the bracelet needs another B. I didn’t know what to say to that.

Our pastors also brought incredibly generous gifts from our church community. Gift certificates to the zoo, and the Children’s Museum, the spa, the Lego Store and many other places where we can create meaningful memories. It was a bit overwhelming honestly. Thank you to the friends and acquaintances who shared in that outpouring of love.

And just this evening, I saw an email from the St. Boniface Hospital Foundation letting me know that close to $1500 has been raised to make improvements to the NICU family room.  Thank you thank you thank you to everyone who contributed. Thank you. I believe sincerely that this is an incredibly important space to offer some moments of quiet and calm for NICU families.

If you haven’t contributed and want to, please call 204-230-2067 or donate online at http:/saintboniface.ca/foundation/donate.

After I read that email, I noticed one from the South Pointe Residents’ Group letting me know that they would like to work with our neighbourhood’s developer, Ladco, and with the city to name a park after Brody.

Then I cried. But for the first time in weeks, my tears weren’t all sad.

Today was filled with good and generosity and love. It spoke right to my heart. It reminded me that in the midst of this bleak, scary point in our journey, my family is surrounded by hope and light. It’s not easy to see it or feel it sometimes, but today we saw it and felt it and that was wonderful.

Thank you.

Now, do me one more favour and please smile.

I used to think that really bad things would never happen to me. I used to look at the really bad things that happened to other people (not too closely and only when I had to) and I thought that I was immune to those things.

My reasoning was based on my belief that I make excellent decisions. I genuinely seek to do what’s right, and I have faith – maybe more faith than other people have.

If you’re disgusted by that, that’s fair.

If I thought I was better than other people, I didn’t realize it. I actually just felt grateful – grateful that I was raised with love and faith and prayer, and grateful that I’d been taught to have high standards and make good choices.

Then really bad things started happening to me and to people I love. This was confusing and scary. I didn’t understand how this was possible.

I decided to stay with the strategy that had always worked: good decisions, do the right thing, have faith that God will bless my efforts. And I realized that I needed more love – in fact, I needed a lot more love and grace in my life. Love is powerful and God is love. I also realized that my faith needed to be a faith that trusted God no matter what, even when that meant being very patient in the midst of a trail that seemed totally against God’s will.

I became a person I liked a lot more than the person who thought bad things would never happen to her. There were good lessons to be learned from the storms.

But, I still thought I could trust God to keep really bad things from happening to me. Even if they happened to other people.

Now… now I just trust God and I don’t know what that means.

It is not easy to make peace with the fact that the world is a very unsafe place – that everyone’s world is an unsafe place. I’m not sure I want to make peace with that.

Jensen and I have both reflected on ways we have seen God intervene in our life and wondered in desperation why God would change the outcome in those situations and not in this one.

There is no satisfying answer. There is really no answer at all.

I can only cry out to God like David in the Psalms.

“I meditate on all your works and consider what your hands have done. I spread out my hands to you; I thirst for you like a parched land.

Teach me to do your will, for you are my God; may your good Spirit lead me on level ground.” Psalm 145: 5,6, 10

A friend and co-worker stopped by today with a card for me and a gift for Bryson. It was a nice surprise. It brought to memory a conversation we had a long time ago over lunch. I think I was pregnant with Brody, but I can’t remember.

We discussed how it is difficult not to worry excessively about our kids. We discussed tragedy and disappointment and how they can breed fear.

I shared with her how, after Bryson was born, I was determined not be a worrying, fearful mom, but I didn’t know how to stop worrying that he might die. So, I read Dale Carnegie’s book: How to Stop Worrying and Start Living.

In it, Carnegie explains that in order to stop worrying, one must make peace with the worst-case scenario. He gives a number of examples to show how this is an effective strategy. It made sense in his examples, but I couldn’t see how any mother could make peace with the possibility of her child dying. I certainly couldn’t.

Then I asked God what to do. The Bible says not to worry, to trust God, to fear not. I asked God how to find peace instead of constantly worrying about my baby. And I sincerely felt like God spoke to me. She told me I could make peace with the fact that I am not in control. I could let go.

I remember sharing with my co-worker at lunch how I resolved to do just that. I resolved to trust God and recognize that my worrying created no power – it does not add a single day to a life.

I remembered all of this like a flood this evening, and I’ve been trying not to drown in it ever since.

Should I have worried more? Should I have been afraid? My strategy obviously didn’t prevent tragedy from happening. Was that not God speaking to me? Am I meant to believe that I can have control?

I don’t think so. Even after… everything. I still don’t think so.

This is absolutely not to say that I or anyone else should relinquish all authority in her child’s life or in her own life. No. No. No.

Our words are powerful. The atmosphere we create in our home can heal or hurt its inhabitants. A mother’s love and wisdom is so very powerful. I could go on and on about this. Maybe I will one day.

But worry is not a weapon; it is a weakness. Even though, as a mom, I have had far too #$*&ing many reasons to worry, I will never wish I worried more.

Embracing worry wouldn’t have saved Brody. It wouldn’t have made me a better mother. It just would have tainted the little time we had with him.

Worry is part of the bad wolf, and I can tell that it is eager to feed on this disaster and consumer me. If I’m honest, I wish worrying was powerful, because it’s easy, and I can’t deny that I would very much like more power right now. I would love to have more control.

It doesn’t work that way though, and I think I would be better off to keep pursuing peace.

I had two goals for today. I wanted to attend a team meeting at work, and I wanted to have a productive counselling session. It’s time to start moving forward. At least that’s how I felt this morning.

I took Bryson to daycare, which went well. I love his daycare. It was his first day back. He was ready.

I had time to go home before my meeting, so I thought I’d do a load of laundry. Some of Brody’s blankets were in with the towels and I shrank to the laundry room floor and cried. I was frustrated with myself. Why can’t I hold it together? Jensen found me and suggested I stay home and play cards and watch Friends. Goal one not accomplished.

I drove downtown for my first counselling session. I had high expectations that the counsellor would give me advice on how to feel better and share some best practices for going back to work. She was compassionate and genuine and encouraging, but she kept repeating the line: “This is so fresh.” Again and again she said it. “I know this is a very hard time. This is so fresh.”

After the far-too-brief meeting, I sat in a coffee shop reading all the material she had given me on losing a child. I read how this is considered the most significant loss a person can face in life. I read how – though it is possible to move forward – this loss will always stay with us. I read how it is crucial to be with the grief, to sit with it and feel it. And the counsellor’s words kept repeating in my head, “This is so fresh. It’s so fresh.”

I felt lost. Goal two not accomplished.

My philosophy in life is to make plans and move forward. The sooner you can tick the boxes, the better. I want to talk to an expert or read a book that tells me exactly what to do and when to do it. I want a solution. I want an action plan.

But I think this might not work that way.

I will be weak for a while, maybe a long while. I don’t know. I need help right now. I need to be patient with this awful process and acknowledge that I don’t know how long it will take.

I can make good choices, I can feed the good wolf, but I might need to stop making goals for a while. I might need to let go of my expectations and just be with my grief.

Apparently sitting still right now is a prerequisite to moving forward.

I saw an old classmate from elementary school this weekend. We are Facebook friends, so I was fairly certain she would have heard the news. I can only imagine what went through her mind when she recognized my face in her yoga class. Probably something along the lines of: “What do I say to her? Do I say anything? Do I give her a hug? Maybe she wants me to ignore her.”

Of course, I don’t really know what she thought, but that’s what I would have thought. It’s not an easy situation to navigate.

Casual social interactions have changed, significantly, since we lost Brody. They’ve become far less casual.

Someone actually took my hand at a leadership seminar this evening, then she started tearing up.

My initial reaction to all of this emotion and vulnerability was discomfort. I wrote a draft blog post asking everyone to please just be normal and brief and for goodness sake, stop asking me how I am.

Then I thought, maybe I should push past my discomfort and embrace all of the candid expressions of love. Because when I recognize that people sincerely want to offer hope or to express that my hurt, my loss, has hurt them too – I can’t see that as anything other than a gift.

Now, I would also like to say that, if you see me, it is okay to smile and keep walking. If we wouldn’t have chatted a year ago, we don’t need to stop and chat today. Smile and wave. That’s still okay.

My former classmate was wonderfully sensitive and said something simple and thoughtful. I truly appreciated that.

But if you are compelled to stop and share your heart, I welcome you to do so.

In time, most unplanned social interactions will resume being perfunctory and guarded. People will say “Hi. How are you?” and I’ll say, “I’m well. How are you?” and that will be normal and appropriate again.

This season is different though, and I want to embrace that.