Hope In My Heart

Three years ago today, we were bringing Brody home from the NICU. I don’t remember thinking much about resolutions that year – I was just incredibly relieved and grateful to bring him home. One year later, we were celebrating how miraculously well he was doing and how bright his future looked. We went into 2017 expecting good things. Instead, his precious life ended not long after when he was just 16 months old.

This unimaginable loss affected every area of my life. It caused me to confront everything I believed to be true, and certainly raised questions about what makes a life significant.

Going into 2019, I’d love to share with you a few of the truths that have meant the most to me. I hope they inspire you also as you set out to create meaning this year.

• I’d rather be who I want to be than have what I want to have or do what I want to do.

Our job title or our marital status etc etc do not define who we are. You might be living the life of your dreams on the outside, but if you aren’t happy with your values on the inside, everything will feel wrong. One of the most powerful books I read after Brody died was Stephen Covey’s 7 Habits of Highly Effective People. Honestly, I can’t recite the seven habits, but what will never leave me is his teaching on living a values-centred life. We all have something at the centre of our life – money, work, family, status – but we aren’t all aware of what that something is. Covey writes how we need to recognize the motives behind our decisions and then intentionally recentre our lives around values such as bravery, honesty and love.     

As I go into 2019, I am not focused on a resolution; I am working on a realignment. I want all of my decisions to flow from intentional values and beliefs – which brings me to my second life lesson:

• True change is from the inside.

As you set goals for 2019, remember that a quick fix will never stick. So often we seek out a bandaid instead of embracing the inner-work required to create our best lives. Though I would never try to rationalize tragedy, my own inspired me to look inward and tackle the unhealthy perspectives and practices that held me back. Don’t wait for a dramatic moment in life to pursue new ideas. You can begin changing from the inside as soon as you’re willing to confront your belief systems.

• Whatever happens, respond with love.

You can imagine that after the death of a child, your sense of security is shattered. For a long time after we lost Brody, I wondered if I would ever feel safe again, or if I’d just live worrying about what tragedy would befall me next. To reclaim peace, I had to acknowledge that I cannot stop all bad things from happening, but I can commit to respond to those things in love. That is truly the only real power we have. We are at the mercy of so much, but we are in control of how we respond, and acknowledging that helps me go into the New Year hopeful and empowered instead of afraid.

• Wonderful things can happen when you’re brave enough to try.

On New Year’s Day 2018, I announced on social media that I was pregnant with a healthy baby boy. Today, I am writing this with a video monitor next to me so I can watch my rainbow baby sleep.

The greatest rewards in life often come from taking risks and trying something new. In 2019, don’t merely make resolutions to solve problems – that’s like driving just to avoid potholes. Look up and decide who you want to be at the end of this year and beyond. Set a goal based on your values and move toward it. If you change from the inside out, the change will last and be authentic.

Thanks to everyone whose shared in this journey with me over the past year and half. All the best to you in 2019!

Dear Brody,

I’m happy. I don’t think I’ve been this happy since the day you were born – when I thought you were well. I still had moments of joy after you were diagnosed and even after you died. But there has been a cloud over my head for some time and it has been a lot of work to find the sun.

Having Jayce here, watching him grow so quickly and thrive, it lights me up. I am so relieved.

I asked your dad if he felt guilty at all for being happy. Of course he said no because he’s rational like that. I protested because, I reminded him, you are worthy of our sadness. You are still gone, and that should always make us sad.

“But that’s false logic,” he told me. “Brody doesn’t need us to be sad for him. That doesn’t do anything for him. He wants us to be happy.”

And I think he’s right. Right? Is it okay for us to be happy again? We miss you – we miss you a lot – but we don’t want that to define the rest of our lives.

I don’t want to go through everyday seeing you as the missing piece because you have actually given me many gifts. Having you and losing you taught me lessons no one and nothing else could have. You will always be a sacred part of my story and my heart and I won’t ever let go of you. I don’t have it all figured out, but I think it honours you most to remember you with joy and gratitude.

Still, when I think of the fact that you should be three this December, it’s quite tempting to drown in grief. And that might never change. But I want to tell myself in those moments that you’re still mine and I will see you again. And until then, I’m going to thank God that I got to hold you for as long as I did.

The skies are much clearer now and the sun is warmer than it has been in a while, and I don’t want to close my eyes and remember all the darkness.

Let’s be happy together, baby boy. Okay? You and your brothers are all worthy of my joy.

I can’t feel sorry for you anymore. I have to let that go. Wishing for what can’t be just holds us back from joy. And I spend far too much time wishing that Brody was here to play with you. It hurts my heart sometimes to see you play alone.

Maybe it seems absurd. I don’t know. But it was always my intention to have kids fairly close in age so you could grow up playing and scheming together. The three-year difference between you and Brody was already more of a gap than I’d hoped there would be, but you were in love with him right from the start. I knew it wouldn’t be long before you were running around the back yard together.

You never got to do that though, and it still makes me angry. It’s a great injustice what’s been taken from you – isn’t it? Who could argue that? You lost your playmate and your confidant; you lost your brother.

But I don’t think I can look at it like that anymore – as though your childhood is less than it was meant to be.

Bryson, you have had to tackle impossible questions just as I have. You have grieved and mourned and suffered in your own young way. No mother would wish this for her child. The logical conclusion might be that we can never regain what was lost, but I want to challenge us to see beyond that logic. What if we chose to recognize all that we gained from having Brody, even though it was for a short time?

Brody is a gift to us – even still. The experience of loving him and losing him is not an easy one, but it can make us all better if we let it. And I think we are letting it. It’s been painfully beautiful to see your love for Brody endure even after he’s left, and even after your new brother has arrived.

I thought after Jayce was born it would be easy to let go of my anger that you lost your Brody, but better circumstances don’t replace the need for active choice. I have to intentionally let that anger go and replace it with gratitude.

Even as I write this, I am reminded of how incredibly fortunate of a child you are. You have everything you need to enjoy life and thrive – losing Brody should not hold you back. If I don’t remember that, it will make it that much harder for you to believe it. So, no more feeling sorry for you. We are grateful for what we have in this family, and we are united in love, even if it doesn’t look like what we had planned.

I’ve been feeling much better since I wrote to you. I needed to share my heart with you. It struck me that even though you died more than a year ago, I still worry about you. I still wonder how you’re doing and think about your feelings and what you need. I still desperately want to mother you.

I always wanted to be the mom who enjoyed my kids and didn’t worry all the time. Circumstances have certainly challenged that goal. But I still want that. Perhaps I need to stop worrying about you now. I need to give myself permission to stop worrying about whether it’s our fault you died. I need to stop worrying that I did something terribly wrong and everyone knows and is just too kind or scared to tell me to my face. I need to stop worrying that I don’t love you enough when I acknowledge how much easier it’s going to be to raise a child who doesn’t have the terrible disease you had.

I miss you and it hurts to think of what you would be like now. I need to stop torturing myself with those questions. Of course you would still be our beautiful boy and you’d be challenging at times and delightful at other times like every other two year old.  But you’re not here and you’re not two and I should stop imagining what never was or ever will be.

I need to stop worrying about you and just allow myself to enjoy you. I still love you and you still love me. I have many beautiful memories of the precious time we had together. We could have so easily lost you when you were just days old. What a gift to have nearly 17 months of memories.

Now we can make new memories with your baby brother. It’s okay. It’s good and right and I don’t need to worry. It’s not perfect; nothing ever is and that’s okay. It’s all an incredible gift despite the suffering and I want to enjoy it.

No one will ever replace you. You have a new, baby brother. He seems to be doing very well. I’m still scared sometimes. I still feel so vulnerable. And I still think about you and how you should have come home like he did. I was overwhelmed with happiness when you were born. I wish that could have lasted. I wish I could have enjoyed you in good health.

But I need to stop wishing for things to be different. I do. I need to let go of how I think life should have gone. It feels like a betrayal. I owe it to you to wish you were here for the rest of my life, don’t I? How could I possibly not wish for that? How can I stop wishing for a different story?

I’ve been watching TED Talks on the science of happiness and reading books like The Happiness Advantage and they all tell me that happiness requires making peace with your choices and accepting the things you can’t control as they are. Losing you makes that really hard.

But I have this new little human now. And I still have Bryson. And I think each of my boys, including you, wants me to be happy. Right? I feel like I need your permission. I feel like I owe you an apology for having another son and trying to move on. I’m sorry. Please know I’m not trying to forget you. I’m just trying to figure out how to keep loving you and love this new baby. Logically, this shouldn’t be difficult; I have plenty of love in my heart for both of you. But, I feel this barrier still, this fear.

We moved your urn downstairs last week. It stung. Oh kid, why did you have to end up in an urn? You are my beautiful boy. It just got to be too much to have it in our room and walk past it repeatedly everyday. We’d rather look at pictures of your smile. So we put up these teak shelves that used to belong to my grandpa and we made a Brody wall in the hall downstairs. When it was done, we all stood and looked at it together and cried. I held Jayce and looked at your happy face and cried.

We lost you and we gained this new little boy and it feels like an unsolvable riddle, like a maze I’m lost in with no solution. What was the purpose of that? Why not just keep you? And I have to make peace with not knowing. I cannot wish for it to be different. It’s not going to be different.

You are gone now and he is here and my assignment is to accept that. I want to stubbornly insist that I will not accept this, but my protest accomplishes nothing. My surrender, however, might just bring me peace. It is what it is and I have to let it be.  That doesn’t mean I don’t love you anymore. It doesn’t make me a quitter or a bad mom. It doesn’t mean I’m choosing Jayce over you.

And I really think that’s what is making this transition so painful. It’s like I’m cheating on you or betraying you in some way. You left me and I’ve gone and started a new life without you. Is that okay? Is that what this is? Ah kiddo. I don’t even know. It shouldn’t feel like such a mess, but it does.  Let’s make a way here. There is a way to peace. I have hope.

I’m pretty good at stomping out the lies. I do my best to identify wrong thoughts and replace them with the highest truth I know. This practice has kept me stable and allowed me to move forward. But it’s not enough to have peace of mind.

The greatest struggle since Brody died has been deciding how to make peace with the truth – the ugly, terrifying truths.

This happened. To me. This happened to my family.

I am not immune. The ones I love are not immune.

I don’t have some special guarantee. (I really believed I did.)

Jesus is not a get-out-of-suffering-free card.

Sometimes you lose a battle even when you fight well.

Sometimes, you do your part, and it looks like and feels like God does not do hers.

For most of my life I have known some of this to some extent, but I did not fear tragic loss or suffering because I believed they did not ever have to be part of my reality. Of course, that illusion has been shattered. Choosing peace while learning to accept the possibility of future suffering has felt impossible. Trusting God even when there’s no guarantee of a miracle is a deeper calling than trusting a God who always says yes.

I am only ten days from my due date, and I want to finish well. But fear has some pretty convincing arguments as I approach the birth of my second, second child. How do I respond? I can conquer the lies, but what do I do with the weight of the overwhelming truth?

I have decided that my most effective option, despite all the scary unknowns, is to commit to respond to whatever happens with love. Perfect love casts out fear, and that is becoming clearer. I don’t think I can make fear completely go away, but I don’t have to feed her. I can throw her outside and ignore her howls.

When fear asks me the scariest questions, “What will you do if this baby doesn’t come home? What will you do if this baby is sick, if this baby dies too?” I will declare that I will do what love demands. Yes, such a tragedy would break me into a million pieces, but I don’t need to plan that out; I don’t need to go down that road in my mind. I can simply say, I’m choosing love. Every step left along this arduous journey, I want to be patient and hopeful and kind. I will trust and believe the best, even if that makes me all the more vulnerable. I’m not seeking comfort and happiness first – I’ve never believed in that. I want to boldly pursue love, even when it feels like too great a risk.

The unknown doesn’t have to overwhelm me because my compass is set. Many things are beyond my control but in preparation for and in response to all things, Christ will strengthen me in love.

Philippians 4

4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

… 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through Christ who gives me strength.

This weekend, I will be 37 weeks pregnant. The statistical likelihood that all will be well with this baby is very high. It’s a significant milestone and I think I want to celebrate.

Jensen suggested that we work on the nursery. “Let’s sit on the floor and eat take-out and assemble the new crib together,” he said with a big smile. It sounded wonderful. I started to cry. “That’s so scary,” I told him. I am just overwhelmed at how vulnerable that makes me feel.

I have been 37 weeks before. I have even made it so far as to deliver our baby and have everything seem perfect. Truly the sweetest moments of my life. And then the moment was shattered.

Sometimes I think I should not have taken the risk of another pregnancy because I don’t know how our family would survive another shock. We need things to go well this time, but that is not a guarantee.

Just during this pregnancy, a woman I know went into early labour and had to say goodbye to her twin girls. Another friend gave birth to a full term baby who died the next day. Still another mother I’m close with found out at 19 weeks pregnant that her baby had passed away and had to deliver a very tiny, lifeless child.

I also know two moms who each delivered a healthy rainbow baby after previous experiences of trauma and loss. They were scared, even terrified, that they would suffer again. But they didn’t. They were blessed with healthy babies. Hallelujah.

These moms remind me that, whatever happens, it is and has always been outside of my control. I have influence, yes, but a great deal lies beyond that and the range of possible outcomes is vast and gut-wrenching.

How can I let myself celebrate when I have no guarantee that I’m not about to walk into another disaster?

Brene Brown calls this foreboding joy and explains that it’s what happens when we lose our tolerance for vulnerability.  “There is no emotion harder to feel than joy,” she writes, “because we are so afraid that it won’t last.”

Lately, I think of joy as the witch in Hansel and Gretel; she’s just trying to lure me into a trap. But I’m not a kid anymore and I see right through her. I know how to protect myself from her now.

But I need to confront the truth that denying joy is a pretty shitty strategy for avoiding pain. It can’t stop bad things from happening and I question if it really makes them hurt that much less. Embracing joy is optional, but I think pain generally just chases you down if you try to run from it.

I cannot say that I’ve been embracing joy throughout this pregnancy; I have wanted to remain about as detached as possible. But tomorrow is a new month and a new day. Maybe I can let myself look at life right now and acknowledge all the good without imaging the possibility that it will all be broken. Certainly I should convince myself that joy will not break it.

Today is the anniversary of my little boy leaving me, leaving our family, for heaven. Today has been one year since the very worst moments of my life.

I so badly want this year to have counted for something. I want to sit here and pour out lessons and wisdom that only suffering could have taught me. But nothing brilliant comes to mind. And honestly, what could possible be enough?

There are moments when I feel a deep gratitude for how this journey has changed me. Sometimes it is easier to see compassion growing in new places or pride shrivelling up because humility’s fresh leaves have blocked its sun.

Other moments are heavy with overwhelming regret and fear. Some moments feel like a life sentence for an unforgivable crime. I fear that I am just not enough to create something beautiful with this broken life and I question why I would ever try.

Brody was so beautiful, so full of life and so deeply loved. I know he still is all those things, but he is not here with us the way he should be. And today, we sat with that, letting ourselves remember what we lost.

Yesterday was harder in some ways. I let myself cry hysterically while Bryson was at school. It is something I intentionally do not do often because it isn’t healing. I can’t breath. I make myself sick. I need to protect Bryson from that. I need to protect my unborn baby from too much of that. My head fills with the worst of my fears and they are such bullies, violently insisting that I agree with them.

I kept asking myself how we would possibly survive this week and the voice in my head kept yelling that I am just not enough, we are not enough; we will not make it through.

I reminded myself that we do, in fact, have everything we need to get through – in God and in community. We are well equipped to walk the road before us. Still, by 8:30 this morning, I already felt completely exhausted. I laid down on the couch and I heard that voice tell me again that I am not going to make it. But I had started my morning with scripture and quotes from some of my favourite books, and I remembered Cheryl Strayed in her tent on the Pacific Crest Trail. She is bruised and terrified and she asks herself, “Who is tougher than me?” and each night she answers, “No one.” And I asked myself, “Who is braver than me?” and I told myself, “No one. If anyone is enough to get through this, I am enough to get through this. I am going to make it through this day.”

And I did – we did. With good food and love from friends and family, we chose to create a beautiful day.

Brody, thank you for being my beautiful boy. Thank you for all the gifts you brought into my life and all the memories you gave me to cherish. I still just want to tell you to come back – as though you have that power somehow, as though you chose to leave. We love you so much. I promise we will do better this time. Bryson keeps thanking God that you are with Him and that you are happy and safe. I think it is a good sign that he is finding peace. He used to pray that you would come back to life, but time has passed now. Of course, we all still wish so many things were different. We still have all the same questions we did a year ago, but we keep reminding ourselves that the answer is just to love and to keep loving. Fear and anger are tempting, but love is the road that leads to you. Love is what will keep you closest in our hearts and will bring us back together one day. And I might just hold you for eternity, okay? One day.

At church, we dedicate time in every service to pray together. The pastor encourages those who are believing God for something to raise a hand in agreement as we lift up our requests to God.

When I was pregnant with Brody, I raised my hand each time. Why not? I was believing God for a healthy baby, so I wanted to thank God for that without ceasing.

This pregnancy, I don’t raise my hand.

I am now in my third trimester, and I have prayed for this baby to be healthy one time. It was painful.

This past Sunday, when the opportunity to raise a hand was offered, I wanted to be brave. God is good. I want to trust her. I don’t want to be afraid or superstitious. But I still wasn’t ready.

Standing in faith feels like standing on a rail line; I would just be making myself needlessly vulnerable, setting myself up to be crushed again.

If faith cannot explain what went wrong with Brody, or what has gone wrong for so many people so many times, then how can it ever be safe? Why would I want it? Why would I teach my kids to have it?

There is much I don’t know, but I still believe that whatever the truth is, it is the best God can do. I don’t understand or pretend to know everything that will happen when we die. I don’t understand exactly where my authority ends and God’s begins. But I do believe that God has done and is doing the best she can for us.

Motivated by perfect and selfless love, God is working for our ultimate good.

And I want to keep talking to her, the God of perfect love. She strengthens me and comforts me and leads me in the truth. I have experienced God’s love so vividly, I can hardly call believing in it faith. Of God’s love, I am certain.

So, if God’s love is a safe place, why do I feel so afraid to have faith?

My faith for Brody expected good outcomes and after experiencing the worst, I am not willing to expect good outcomes the same way again. I cannot pray for this baby the way I prayed for Brody. But that is not the only way to pray – I need to stop telling myself that it is.

If real faith is all about the outcome, all about my ability to receive blessings or move mountains, then that is a scary place riddled with unmet expectations and failure. I don’t want to go there. I don’t want to get back on those train tracks to prove I trust God.

If faith is about trusting in the endless love and goodness of God, regardless of circumstances, then faith is a place of peace. I want to go there. I want to live there. I want to teach that to my kids.

I will thank God for this new life and trust that, whatever happens, God is working for its ultimate good – just as she has always done for me, just as she has always done for all of us.

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
1 John 4:18

I have never understood this verse. To me, love has always seemed like the doorway to fear because with love comes the fear of loss. If nothing in this life was of any worth or value to me, would I really have anything to fear?

Still, I have returned to this passage many times. It seems critically important and I want to solve the riddle.

In fact, 1 John 4 was the passage of scripture I was reading the night before Brody died. I was praying that I would always love and accept my children regardless of their weaknesses. I was not confessing that I loved disease or sickness – simply that my children did not need to be healthy and whole for me to fully love them. I would embrace them regardless of their struggles present and future.

In the early days after Brody died, the memory of doing this was great comfort to me. Sometimes I would hear this awful lie that I wanted Brody to die – I let him die because having a child with a disease was too much extra stress and work. I could remind myself that Jensen and I did not see Brody as a burden and we always believed he was worth the challenges we had to overcome to keep him well. We were in it for keeps; for better or worse, sickness and health.

But as time goes on, the memory of this prayer, prayed just hours before my little boy’s death, brings me torment. I must have prayed something wrong. I must have offended God. Or, at best, it appears my prayer did not hold any power.

And that fear – the fear that my sincere effort to love well somehow screwed everything up – it is becoming a mountain in my soul.

I am more than half way through my pregnancy with what should be our rainbow baby, and I do not know how to love this little person – this great unknown. What if I fail him too? What if there’s something wrong this time, like last time? What if…? What if…? What if…?

All this to conclude that it is not safe to love this baby yet. I am too afraid. It is not worth the risk. I must wait to love him until I know that he will turn two, and three, and 45. I just don’t want to make the same mistake again. I don’t want to agree to love this baby no matter just to have that promise be tested in the most excruciating way.

And there it is. I see it in a way I have never seen it before. Fear is standing right in front of love and saying no. Love is not welcome. Love is not safe. I want indifference instead because love is too risky.

But indifference isn’t really doing the trick. Trying to say no to love hasn’t been any comfort. I am still afraid of loss. I am still tortured by all the unknowns.

I have kept thinking that the more I let myself love this baby, the more I will be afraid and the more pain I will feel if anything goes wrong. Even if that’s true, I’m not so sure it’s wisdom. I need to find a way to push through this fear and say yes to love, maybe even say yes to a little bit of joy. It feels impossible, but maybe I could stop being desperate for this pregnancy to be over and choose patience. Maybe I could do what love does and believe the best.

I’m honestly not sure how yet, but if I start looking, maybe I will find a way.