Accepting the gift

I keep reminding myself of a sacred moment that happened right before doctors confirmed Brody was dead.

Someone was hugging me – someone who worked at the hospital. We were on the other side of the door to the room where doctors and nurses were working to resuscitate my son. Jensen was parking the car. He didn’t know how bad it was yet.

In that moment, God filled me with this consuming love; it was like being engulfed in beautiful light. And in my heart I heard Her tell me: Brody is going to die, and it’s going to be okay.

I wanted to hold on to that love forever. I still wonder now how I ever could have doubted that gift. But I did not want to accept that message. Everything inside of my forced out that light and rebuked it. Get away from me! Brody will not die!

But he did, and as I walk out that reality, I often wish God would give me another chance at that experience. I will say yes this time, I tell Her. Please, make that happen again. This time, I won’t let go.

I think the ball is in my court though. I think God is waiting for me. But I am still angry, just like I was in that moment. I am still rebuking God for what happened. I do not want to let Her back in. I still just want a different gift.

God, why would you come to me when you should have been there for Brody? How dare you tell me that it’s going to be okay? Why did you not just make it okay? What more did you need?

I don’t know. I have to accept that. I just don’t know.

And so often I get very stuck at that place. I know God offers us peace that passes understanding, but I desperately want to understand first.

I trusted and relied on God for a healthy son, for a good gift; I was convinced that was God’s will and God would make that happen for our family. All the other gifts that God is still offering me seem counterfeit now, or at least inadequate compared to what I lost.

That’s a lie though.

I have everything I need to get through this – not in myself, but in God and in the community God gave me. I have everything I need to get through.

So, I go back to that moment, and I work at making peace with what God said. I’m not there yet. I still rebuke it, again and again. But slowly, I explore it and confront it and let it do its work in my heart.

Brody is going to die, God tells me, and I will still love you.

Brody’s going to die, and I will still be a good God.

Brody’s going to die, and you will still have purpose, Myrrhanda.

Brody’s going to die, and you will still know joy.

Brody’s going to die, and you will not forget him.

Brody’s going to die, and I will still be here to give you peace.

Brody’s going to die, and he will go to a beautiful place.

Brody’s going to die, and you will see him again.

As I acknowledge the truth of each of these statements, I get closer to believing that it’s going to be okay. I have to trust that God’s gifts are still worth accepting. And as I choose to do that, the love and light can come back in.

Climbing in the dark

One of the many principles I learned from years of church attendance is the idea of being a climber and not a camper. I remember hearing our pastor preach a message on moving forward in life and taking on new challenges many years ago. I reflect back on it often, especially when the road ahead looks uphill.

When Jensen and I found out we were both carriers of the same rare genetic disease, the thought of having more children – well, it almost felt reckless. After Brody died, we knew we could not risk going through that again; we could not raise another child with that disease. Camping at one kid was looking like it might be the responsible choice.

But, for us, not trying again felt like its own kind of death. If we tried, at least there was a 75 per cent chance of adding a new member to our family. Yes, there was a 25 per cent chance the baby might be affected, and for us, that meant losing another child. But if we didn’t try at all, then the chance of another baby was zero per cent.

And this is not to say that there is something wrong with having one child, because there certainly is not. We just had to confront the truth that it wasn’t what we wanted, even if it was a perfectly reasonable option.

So, we tried. Well, we decided we would try and then we found out we were already pregnant.

I have moments when I don’t know if we made the right decision. Not because we don’t both enthusiastically want another child, but because we risked so much. And even now that testing has confirmed the baby is normal, it still feels like we are risking a lot.

I am 15 weeks today. I have a long way to go before my June 25th due date, and there is no guarantee that things will go well. I don’t know what I am moving towards. Will we get to enjoy new life or have to endure another loss? Maybe I have taken the climbing versus camping metaphor too far and I am just running up the rocks in the dark.

Pregnancy always comes with immense vulnerability, but for moms who have lived nightmares and faced life’s worst surprises, the fear becomes something much more than false evidence appearing real. Still, I’m glad we were brave and I know we will never regret that.

This New Year’s Day, I look behind me and I look ahead, and I wouldn’t change a single decision. I certainly wish I could change a number of things outside of my control, but I still can’t. I never imagined the road would get this grey or this rocky, but we got here by choosing hope and walking in love. And I have to believe that eventually – hopefully soon – love will lead us where we want to go, even if we’re climbing in the dark.

Breaking the silence

Clarence, the guardian angel and the ghosts of Christmas past only speak to men in movies, and this is my real life. So, I need to talk to myself this holiday season. I need to coach myself out of this gloom and self-pity. I need to come to terms with my unmet expectations.

I’m scared losing Brody has ruined Christmas. I’m scared it has ruined a lot of things.

This Christmas, I am not joyful. I am not excited. I am not in awe. If God didn’t care enough about my son to save him, I’m not sure why I should be expected to get excited about his son this Christmas.

Even when I look at all the beauty, when I reflect on my many blessings, I mostly just fear that I may lose them too. Every good gift just feels like another potential source of pain.

I used to take great comfort in knowing that my life was safe in God’s hands, but I don’t know how to now. Brody’s life was every bit as dear to me as my own, and if he was not safe, then what is?

I am told I shouldn’t blame God for what happened; this wasn’t God’s will. I just don’t see how God receives the credit for the healthy babies and normal pregnancies, or for Brody’s apparent health despite his diagnosis – but God gets none of the blame when it all goes wrong. No one can explain that to me, but I try to explain it to myself – everyday.

More than anything, I want to trust God again and have it mean something. I want to believe that my merciful, loving God has a good plan for me and my family and I want to see that unfold in our lives.

I hope God is patient with me. I think She is. Because if I were Her, I probably wouldn’t want to hear from me anymore. I haven’t had anything nice to say to Her for a while, and day by day, this is turning into me not saying much at all. And I don’t like that direction.

I want to make God pay for my hurt. I don’t want to put Her in a position of great power in my life because She has totally failed to meet my expectations lately, not even close. And I don’t feel like I’m meeting Hers either.

I have never been through a serious break up before, but I imagine this is how it feels before the end. There is just too much between you to forgive – too many disappointments and failures, too many promises broken. At some point, you just don’t bring out the best in each other any more. Challenges that once seemed manageable are unacceptable now.

What do you do at that juncture? How do you turn back?

Probably a good start is to break the silence.

I read this quote yesterday from Shauna Niequist, “Christmas is about sacred light cutting through the darkness—not about pretending the darkness isn’t there.”

And that spoke to me, because the darkness is here and I have to confront it, on birthdays and at Christmas and every damn day. I can’t just say that I’m hurt, or confused or deeply disappointed and give myself permission to passively accept defeat.

Brody dying isn’t the ultimate defeat. It absolutely feels like it is, but it’s not. Giving his death the power to separate me from Love – allowing it to become the defining story – that would be the ultimate defeat.

I keep telling myself that there isn’t a solution. My son’s death is proof that faith is impotent, and I am too vulnerable to ever feel safe. And that lie needs to stop. There is a way to let in divine light. There is a good and merciful God, and I still want Her, if she’ll have me.

Revering God is the beginning of wisdom. I want to live in awe of God, of the God who speaks to me and tells me:

I will always give you what you need to get through, but you will have to go through with me. I am the vine and you are the branches. Apart from me, you cannot produce good fruit.

God has given me what I need to get through. I believe that. I’m not always interested in doing things Her way though, because it hurts and it feels unfair.

It hurts to be hopeful. It hurts to love other imperfect and vulnerable people. It hurts to be honest and discuss the pain of not holding Brody at Christmas.

In Romans 8:35, Paul asks, “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?” In verses 38 and 39 he answers, “I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

Perhaps I should make my own list. Perhaps we all need to make our own list. What will separate me from the Love of God? Will unmet expectations, fears, pain, questions or death of my child separate me? Will they? They will, if I let them. But I don’t need to let them. If I draw near to God, She will draw near to me. So, I will. I will break the silence.

What’s left to confront

I haven’t been posting much lately. I don’t know if that’s a concern to anyone, but it is to me. Blogging has helped me process some painful, even tormenting, thoughts. It has pushed me to confront the many ideas competing in my head before any unintentionally take root.

Blogging has helped me begin to heal. And I’m not done healing – far from it. So I can’t stop yet. But it’s been much harder lately.

Over the past six months, I’ve confronted absurd ideas such as: Brody’s death is my fault. I’ve decided I won’t ever try to forget him; our family will embrace his memory as best we can and celebrate the life he did have. Those felt like giant hurdles to overcome at the time.

But now, I’m not just confronting new ideas that have come to me as a result of Brody’s death. Now, I am confronting old ones – beliefs I’ve grown up with – beliefs I share with a massive community. This is a much scarier place.

I wrote a blog post weeks ago about how “the storm” left me with a great deal of uncertainty, even around some of my core beliefs. I didn’t post it. Maybe I’ll go back and post it. I’ll mark it as the date I wrote it so it will appear before this one.

I didn’t post it because, if I am ashamed of anything, it is that Brody’s diagnosis and death might have changed me. Even worse, it might have separated me from my church community in a way.

I’m not certain yet if that is true, but if it is, I don’t want to be ashamed of it. I am not someone who just picks the easy road or who believes whatever idea comes my way. I’ve never been that person and I’m certainly not that person now. I shouldn’t be ashamed to challenge ideas or confront beliefs. In fact, if I am too afraid to question my own beliefs, then how can I contend that I have any faith in them? If I really have faith in what I believe, I should be confident that it will stand up to my questions.

And if I find I have been wrong about something for years, isn’t that a wonderful discovery? It just isn’t wonderful at first – it is terrifying at first.

That is where I’m at on this journey, and I don’t want fear to keep me stuck here. I don’t know what I’ll find up ahead, but I don’t like where I am, so I just have to keep going.

Six Months

Today was a hard day. I woke up, I prepared for a normal day, but it just wasn’t a normal day. The thing is, I didn’t realize what today was when I first woke up. I didn’t go to bed last night thinking about what today would be. Instead, I had this moment when I realized that today was six months since Brody died, and I couldn’t believe it snuck up on me.

I remember when we first lost Brody, I truly thought I would count the days. I expected to wake up every morning and think: today it has been 104 days since Brody died. I didn’t know if I would ever be able to stop counting.

But that was an unhealthy and unrealistic expectation. I couldn’t sustain it. I’m glad I didn’t hold myself to that, because it would be wrong to make every day about him.

Still, the fact that I’ve been so distracted with my present life, the fact that I was surprised when I realized we reached this milestone – I just felt like a terrible mother. I felt like I’d betrayed Brody in a way.

I thought of this one mom I know who does something for charity every month on the date of her daughter’s death. Why don’t I do that, too? That’s such a beautiful way to honour your child. I’m just not doing enough. I’m really not doing enough to honour Brody.

Jensen reminded me that Brody is not looking down on us waiting to see what we do for him today. He is not upset with me. He doesn’t question my love. And Jensen’s right, but that only made me feel a bit better. Because it’s just so much more than that. This was an overwhelming day of difficult emotions that I feel like no one in my life could possibly understand.

Finally, I remembered something I learned at Landon’s Legacy Retreat. One of the facilitators did an exercise with us where we shared our fears with another person and that person wrote a compassionate response. It’s remarkable how much more compassionate we can be when faced with another person’s weakness. It is not easy to be as compassionate with ourselves.

So, I decided to write myself a compassionate response. I decided to try to look at my situation from the outside and consider what I would say to me as a friend.

I think we often have a lot of critical voices in our head; we say things to ourselves that are simply unkind and we create unfair expectations.

When I thought honestly about what I would say to someone else in my situation, I knew I had nothing unkind to say.

It was still a hard day. I still wish I could have made it less about me and more about Brody. But I think I will figure that out in time – even if I’m not counting the days.

Is gratitude enough?

I attended a funeral this afternoon. I know how much it meant to me to see familiar faces at Brody’s funeral and I wanted to be there, just to sign my name to the guest book.

The service was for a mother who, at not even 60 years of age, left behind two beautiful daughters and truly one of the world’s most devoted husbands. Every aspect of the service demonstrated the great and powerful love that this family has created. I could not help thinking how much more it hurts when you lose someone you planned to love for many more decades.

Ever since Brody died, I am far too aware of my mortality and the vulnerability of those I love. And I resent it. I miss feeling nearly invincible. I miss thinking death was for the old. I always knew that we are old enough to die before we are even born, but now I feel it. It is probably one of the worst side effects of losing a child. I don’t know how to feel safe again.

I have been thinking a great deal about gratitude and the power it has in the face of tragedy. I have always considered gratitude to be one of the most powerful forces in life. Gratitude dissolves disappointment. Gratitude takes what you have and makes it enough. Life simply cannot be lived well without practicing gratitude.

But is gratitude really powerful in the face of this? Will it hold up? The weight in my heart is heavy; I’m not sure gratitude will be enough to bare up under it. Sometimes, I’m not even sure love will be enough.

Near the end of the retreat for bereaved moms that I recently attended, each mom made a gift for her lost child to leave among the trees in the Whiteshell. My intention, as I made this offering, was to choose to see Brody as a gift. I think that is necessary if I am going to know peace again. If I think about how he should be here right now, the birthdays and family trips and memories missed, I will be crushed. I will never be able to really live under the weight of this loss. Happiness will always be weak and cracking from the seismic gap in its structure.

But if I can recognize the gift of the time I had with Brody – if I can focus on the gain instead of the loss – I think I can… I think I can maybe find power in gratitude again. I can remember that love is not just an invitation to suffering. Maybe I can even enjoy what I have, enjoy every day, instead of being terrified that I will lose more.

I simply cannot live life wishing for the past to be different. I cannot make it different. I have to see all the beauty in the past and value it as meaningful. Of course, I would choose to have more time with Brody, but no one is giving me that choice.

The options before me are to live life with the perspective that it will never be full, or to live life thankful for all the gifts.

Brody, you are a gift. Brody, you are a gift. I am thankful that we had time to love each other and I am thankful that love doesn’t end with death. You are a wonderful addition to my life. I will not focus on what you could have been, I will be thankful for what you are. You are my beautiful son and I will hold you again. Until then, I know you do not want me to allow your death to cripple my joy and security for the rest of my life.

Rebuild

When I was a kid, my Sunday school teacher taught me a song about the wise man and the foolish man.

The wise man built his house upon the rock (x3)
And the rains came a-tumbling down
The rains came down and the floods came up (x3)
And the house on the rock stood firm!

The foolish man built his house upon the sand (x3)
And the rains came a-tumbling down
The rains came down and the floods came up (x3)
And the house on the sand went splat!

So build your life on the Lord Jesus Christ (x3)
And the blessings will come down
Blessing come down as your prayers go up (x3)
So build your house on the Lord!

As I write this out, I realize how much this song stayed with me – how it shaped my expectations and essentially formed my worldview.

It’s not the worst mantra. Build your life on the rock – on Christ’s teachings of love and forgiveness. Do this because you will need a sturdy footing when the hurricane comes. Do this so that your life won’t fall apart in hard times. Do this so God will bless you.

I always pictured the wise man inside his house as the storm raged on outside. He’s fine. He is untouched. He can just go about life unharmed and unafraid. And so the expectation was formed. I would go through life protected by my strong house – safe and certain.

I never imagined a future in which my child was born with the rarest of diseases. I never imagined a future in which my son died.

“God!” I plead, “I am heartbroken and afraid. I might not have created this storm, but I still feel like it is shaking my house. It is breaking windows and flooding the rooms. What the hell is going on?”

If I look honestly at the infrastructure of my life, I can see that even this most treacherous of hurricanes did not destroy it. My marriage is strong and beautiful, my living son is full of joy and peace, and I am surrounded by goodness and mercy.

But when I look inward, I see a lot of broken pieces. The cornerstone is still there; I still believe that God is love and I still have faith in the loving sacrifice of God’s son.   The rest of my beliefs look to me like Greek ruins – building blocks scattered on the ground, next to the shell of what they were.

I must decide now: which bricks still have integrity? Which ones will I pick up again and use to build my house? Which ones will I deem unstable and choose to destroy?

As I sort through my heart, brick my brick, I ask myself, what will I teach Bryson? What do I want him to be standing on when storms come? He will live the rest of his life having personally experienced a tragic and undeserved loss. What will he think when his Sunday school teacher sings that song?

I could not keep the storm from coming and I could not escape its force. I am struggling with this, but I am still standing, and I will rebuild.

Retreat

Tonight, I heard the stories of 25 women whose babies died before ever having the chance to really live. We have come together, a community of bereaved mothers, to share and grieve and hopefully heal a few pieces of our broken hearts. It’s heavy and overwhelming; I’m a bit uneasy. But I’m here and I’m going to allow myself this week long retreat to honour Brody.

I didn’t bring my laptop and blogging from my phone is not ideal. So I don’t know how much I’ll share along the way. But on this first night, I want to say that I am open to this journey. I don’t know anyone, I’m sharing a room with a stranger, I’m sleeping on a pull out couch, it’s raining and I just heard a lot of very sad stories. But I’m open to meeting new people and crying with them and being vulnerable.

Truthfully I am quite resistant, but it’s going to be okay. Right? I feel way out of my comfort zone, but that’s where life takes you sometimes. That’s where life has taken me.

And though this is called a retreat, I need to be brave and move forward and push myself to not withdraw. I believe there is a divine light in each of these women and I want to acknowledge it as well as share the light within me.

Say a prayer for us.

 

Who do you blame in the storm?

I had some car trouble this weekend and ended up stranded outside the city with my son and my 87-year-old grandma.

“Well, I guess we can’t feel too sorry for ourselves,” she said. “We aren’t stranded in the middle of a hurricane.”

This is often how we console ourselves and one another – with the acknowledgement that it could be worse. At least we’re not alone. At least we’re not refugees. At least we’re not …

But what happens when it is the worst case scenario? What happens when you’re right in the middle of your nightmare – of what you only ever imagined could happen to someone else?

In the early days after Brody was admitted to the NICU, I demanded answers from God.

“How could you let this happen? I trusted you. Your Word says that we reap what we sow and I have sowed good seed, I have walked in faith. How is this my reward?”

God answered me: A storm is not a harvest.

There is still much I do not understand, but I have held on to that. The storm has raged and subsided and raged again, and I remember, I did not create this. I am not to blame. This is not me getting what I deserve.

Still, I am left with more questions. Who then is to blame? Where is the justice when an earthquake devastates Haiti, when hurricanes devastate the United States, when I have to watch my son die?

When our anger has nowhere to go, it is tempting to be furious with God. I am often furious with God.

In the early weeks after Brody’s death, I was going about my day when – the only way I can explain it is that God just interrupted my thoughts: You know, I can take the blame.

I was confused and frustrated. What am I thinking right now? Of course I can’t blame God – I am working very hard to not blame God. Why do I feel like God is telling me to blame Her?

It is too big for you to carry, God added. I can take it.

I was so hung up on the thought that God could not possibly be asking me to blame Her, that it took some time for the message to sink in. Even now, I am still growing in my understanding of these words.

But God is not asking me to blame Her. She is asking me to release all the blame that I carry within me; She is telling me that She can take it. It is too heavy for me to carry and I need to let it go. I need to trust that God loves justice and mercy and God knows who is guilty. I need to trust that God sees all and that She is working for our ultimate good.

I need to trust that because I do not always see it.

I do not know how God will restore what has been lost, but I need to let go of my pursuit of retribution. My family is suffering; families are suffering all over the world. It’s disgusting, and it makes me angry. But I should focus on love and how we can heal, and I should let God take the blame.

Happy Birthday to me

I turned 33 this month. I hadn’t expected it to be a particularly significant birthday, but it was.

For the past 15 years or so, I have asked myself the same questions every birthday: Does my life look like I wanted it to look at this age?  Do I have what I think a 23-year old/26-year-old/30-year-old should have? Do I earn what a 23-year old/26-year-old/30-year-old should earn? Am I happy?

Year after year, I’ve assured myself that getting older is a wonderful gift and I can feel good about it because I can answer yes to all my questions. The boxes on my life-so-far to-do list are all checked. Yay me.

This sounds quite narcissistic, but I always perceived it as an exercise in gratitude. I was acknowledging my many blessings for which I felt both proud and immensely thankful.

Last year, my birthday journal entry read: “I’m 32! We picked our kitchen! Jensen cooked dinner. Bry made me a very special card. I had good quality time with Brody. I adore my family.”

We were building our dream house at the time. It was another box to check. I was still working through the shock of having a baby with a disease, but I was in a good place overall. I considered myself worthy of my age.

But this year, I can’t answer yes to all my questions. I have suffered a profound loss and our family picture is not what I dreamed it would be. My situation feels unfair and my future uncertain.

I’m not going to feel terrible about getting older though. I’m not going to measure my worth by checked or unchecked boxes.

This birthday, I asked myself new questions. In fact, I decided to end my former birthday tradition for good.

This year, I asked myself if I am who I want to be at 33. Do I treat my family with love and kindness? Am I generous with my friends? Do I have a good sense of humour? Am I learning new things? Am I brave?

I can’t answer yes to all of these questions consistently either, but it feels incredibly freeing to disinvest myself from the outcomes I can’t control and to put my energy toward who I am. Doesn’t who I am matter a whole lot more than what I’ve done or what I have?

Even if I end up being tremendously successful going forward, even if all my dreams come true, I don’t want to go back to the boxes. I think it’s much more important to live a life that honours my values than it is to try to create one what meets my expectations.

Older and wiser, I guess. Yay me.