Month: June 2017

I experienced a gorgeous moment of peace last week. I was outside with Bryson, following him as he rode his balance bike. We’d been inside all day, looking out at the dark clouds. When the weather unexpectedly improved, we delayed bedtime to enjoy the sunshine.

Something about getting on his bike floods Bryson with thoughts of Brody. I think because Bryson learned to ride that bike with Brody following along in the stroller. The three of us went to the park together as many days as we could.

Now, Bryson gets on his bike, and before he starts to move, he will stare at the ground as though he’s waiting. “I miss Brody, mama. I didn’t want him to die,” he reminds me.

This evening was no different. Bryson was telling me how he missed his little brother as he biked along.

Then, in a brief moment of silence, I felt the sadness and confusion inside me dissipate and give way to a new feeling of acceptance. I felt as though I could stop looking for Brody – stop desperately trying to get him back. He was gone, and I felt at peace with that for the first time. I knew that I hadn’t and would never lose him completely, and that became comforting and meaningful in a new way.

The moment passed quickly, but it was an encouraging glimpse of what it feels like to heal. Before that, I could only imagine, and the peace in this moment far exceeded my expectations.

Of course, experiencing the contrast also made it all the more clear that I am still in turmoil. I haven’t accepted that Brody is dead, and it is torture to search for one who cannot be found. It hurts my head and my heart.

Just recently I went somewhere I hadn’t been in a long time, not remembering ’til I arrived that I had last been there with Brody. It was such a strange experience. I felt as though my brain was somehow hopeful – as though it was thinking: I haven’t checked here yet! Look for him! Look for him! He could be here!

All I found were memories.

I am thankful for the brief parting of the clouds – the affirmation that the sun will still be warm when I finally see her again. I don’t know how long it will take for the storm to pass and the sun to shine in clear skies. But I know it will.

Our Father which art in heaven, Hallowed be thy name…

The first line of the Lord’s prayer, which I recited, in entirety, every school-day morning until the seventh grade.

Jesus always called God his father, and throughout scripture, every prophet, poet and apostle references and writes God as male.

When I was growing up, I had this idea that it was disrespectful to reference God in any other way. Calling God Queen or Mother would be like giving Him a demotion.

I remember reading the Shack by William P. Young shortly after it came out in 2007. It is an inspired and powerful story of a dad’s encounter with God following the tragic murder of his young daughter. I raged for this father as I imaged how angry I would be at God if my future child were to be taken from me in such a brutal way. And I wept with this despondent man as God revealed Herself to him as a woman.

I never imagined that, years later, I would connect with this gruesome and gorgeous story in such a personal way.

The months following Brody’s diagnosis felt like I had walked out of a peaceful, sunny day into the middle of a hurricane. I had prayed and trusted God throughout my pregnancy. I took all my worries and anxieties to Him and I read His promises over the child growing in my womb.

Those promises looked like bullshit now. God had betrayed me and made me a fool for trusting Him. It hurt so much that I was not enough for Him – that my faith wasn’t as strong as I thought it was.

I screamed and wailed and swore at God. I hated that God would not apologize to me. I resented that God would break His promises – His own words – and there was nothing I could do to hold Him accountable.

I wanted to break up with God. I would dump any man who told me all the things I wanted to hear and then failed to follow through. I would lose that bullshitter so fast and never look back.

But I am as convinced of God as I am of air and light and love. Though I was devastated, I was determined to stay connected to my creator. I needed Him, as inconvenient as that seemed.

One day I broke down and told God that I hated Him. I felt horrible and unforgivable. I knew I was in the dark and I told God: I want to live in the light and bring you glory. But I am so full of hate towards you. I don’t know who you are anymore. I don’t know who you are.

Praise God, she has big shoulders. Praise God, she is infinitely patient with this difficult child. Praise God because she has never stopped listening to me, she has never stopped speaking to me. She will never let go.

And God did not hate me back or reject me; God allowed me to come to Her as my mother.

“For this is what the Lord says… As a mother comforts her child, so I will comfort you.” Isaiah 66:12a, 13b

God’s power has never been about being King or Father. God’s power comes from being Love. And love is a source of power – unending and unyielding – to anyone who will choose it. Love is no respecter of persons. Love has no gender.

This helped me to fall in love with God in a new way. It helped me trust God again as I continued to pray and believe for Brody. God reminded me that she feels the pain of my mommy heart. She sees my child and wants the best for him the same way I do, and she knows how it hurts to watch your child struggle or suffer. She even knows what it feels like to watch Her son die.

She was not then, as she is not now, afraid of my tears or my wounds. She is my ally, my confidant. She is pure, powerful Love. God my Father and my Mother.

“Calling a friend whose child has just died,” is one example of something that makes people feel vulnerable.

I read that recently in Brene Brown’s book, Daring Greatly. It caught me off guard. People feel vulnerable calling me?, I thought. What risk are they taking? I am the one who should feel vulnerable.

Then I thought back to several situations when I questioned my ability, even my worthiness, to support someone through a difficult time. I remember thinking of ways I could show kindness but, far too often, deciding each idea was insufficient. I regret every time I did nothing when I could have done something – however imperfect that something might have been.

And I am incredibly grateful for each person who has chosen to reach out to my family in some way – despite the time it took, despite the uncertainty. Thank you for sending a text message you agonized over for 10 minutes, or a letter you rewrote five times. Thank you for the specific suggestions of how you would like to help, and the offer to call you at any time of night.

Please know that not a single card or text or Facebook message has offended me in any way. I value each one, sincerely. I consider each one worthy.

But, full disclosure, there is one line people sometimes say that does make me cringe. It expresses a belief that I think feeds right into the hesitation people feel when they consider reaching out. It’s anything synonymous with: I just have no idea what you’re going through.

Truthfully, I hate that. I don’t judge anyone for saying it – I probably would have said that five years ago to a friend who lost a child. I just hate hearing people say that because I think it is an insidious lie.

Ok, so, yes, nothing I experienced prior to Brody dying has shattered my heart the way this has. I can think of many reasons why losing a child is considered life’s most unfair and challenging loss. But, even still, many experiences offer glimpses into such great pain.

If you know what it is to love someone, you can imagine what it would be like to lose them. If you know what it is to lose someone you love, then you can certainly relate to the pain of another’s loss even while acknowledging profoundly different circumstances.

If we want to be a light in the darkness, we need to focus on what connects us. And I’m saying that to myself as much as I am to anyone else.

Because on the other end of all those kind texts and letters and offers to help, is me, feeling so vulnerable to accept help or to say thank you. I often agonize, even to the point of giving up, over how to respond to invitations, thoughts and questions. I fear I will sound too happy, too eager, too depressing… that I will fail to meet people’s expectations of a sincere, grieving mother.

But that’s just not helpful.

I do not want to be secluded in some ivory tower of pain. I do not want to feed the misconception that I am in a special category of suffering beyond the normal human experience. There is something tempting about wearing that badge, but I don’t think it offers me any meaningful reward.

I can get through this. I will never get over it, but I can get through it. I can be joyful and hopeful, I can even love my life. That is every bit as true for me now as it ever was. I don’t always feel that way, but I didn’t always feel that way before Brody died. We all have moments when life does not meet our expectations. We all need to practice gratitude to dissolve disappointment.

And we all need to be vulnerable to know love – to help one another and to be helped. We need each other desperately and any lie that keeps us from connecting must to be dragged out into the light and exposed as the one that is truly unworthy.

God wants us to go to Her for comfort when we hurt. I believe this.

Psalm 34:18 tells us: The Lord is close to the brokenhearted and saves those who are crushed in spirit.

But all my questions make it tough to find comfort right now.

I wish there was a story in the New Testament where someone with faith prayed for healing and didn’t get it. That would comfort me. It would help confirm that those of us who don’t receive the miracles we pray for aren’t failures.

During Jesus’ life on earth, the only people we hear of him not healing are those who didn’t go to him or those who didn’t believe. Where is the story for those of us who do both those things and still have to watch our child die?

When I was praying about this recently, God asked me to remember the story of Jesus dying on the cross. It’s a story, God reminded me, of a person with perfect faith not getting what he asked for.

I deeply doubted that I was hearing God in that moment. I know the story well, and I really wouldn’t describe it that way. I considered ignoring this prompting, but I didn’t.

Instead, I remembered Jesus, praying in the garden before he was arrested, calling out to God, concerned about the future and sweating drops of blood. I remembered that he asked God to change the plan, to spare him the suffering he knew he was about to endure.

But God didn’t do that. God knew the plan required suffering. God, motivated by magnificent love, didn’t change course.

And after that sincere and trusting prayer in the garden, everything in Jesus’ life appeared to go horrifically wrong. The suffering he endured is beyond what any human before or since has experienced. And after being beaten mercilessly, humiliated and crucified, he asked God “Why?! Why have you forsaken me?” Or, as we might say it today, “Where are you, God? Why has this happened to me?”

I thought about that. And it did, in fact, bring me comfort. But only for a moment.

Because I go back to God and remind Her that as much I can see how Jesus didn’t get the easier road he asked for and I can clearly see that he knows what it is to suffer… it’s still different than what I’m going through.

Because Jesus knew he needed to die. He knew he had a greater purpose. What purpose does Brody’s death have? And, furthermore, as I understand it, Jesus’ died so that Brody wouldn’t have to – so that he could be born healthy and live long on this earth.

Don’t you see God? Don’t you understand what frustrates me? How can I get comfort from this story? The way I see it, it just amplifies my pain. It is a reminder that Jesus did so much for me and I failed to accept the gift.

And seeing my own thoughts before me now makes me indignant.

Because I think the cross is exactly what we’re meant to look at when we suffer. Christ’s death and resurrection is this incredible story of love, purpose, trust, suffering, struggle and victory. And remembering it shouldn’t bring me shame.

Today, I asked a friend to come over and help me survive. Jensen went back to work yesterday, Bryson is at my parents’ house, and for the first time in a very long time, I was going to have something I’d wished for repeatedly – a day home alone with no kids.

I remember complaining to Jensen that I never had days to myself. As a shift-worker, Jensen has a few days alone every month. My days off were always with the kids.

But, I don’t wish for time to myself anymore. Brody turned 18 months old today. And this was never a day I wanted to live without him.

So, I had to admit to myself and to my friend that I needed her to spend this gorgeous, sunny Thursday helping me check mundane items off my to-do list.

Admirably, she had no hesitation. She brought enough snacks and lunch and supper for two days. She made phone calls for me, helped me go through stacks of paper in my office – she sat with me and watched me write emails. She gave me sound advice and made me laugh.

It was humbling to be so needy. I felt selfish taking this day from her when everyone’s life has challenges and I should suck it up and look for lost library books on my own. Even acknowledging that I needed to be home and get stuff done instead of watching movies or going to the park made me uncomfortable.

But I’m proud that I was vulnerable. I’m thankful that I asked for help. I wish I didn’t need it, but it’s okay that I do.

I’m learning more every day that the willingness to be vulnerable is a tremendous strength.

For me, today, it took strength to lean on someone. And for my friend, I imagine it took strength to share advice when there are no perfect words, or to laugh with me when my situation is the furthest thing from funny.

Without vulnerability, I would have wasted this day suffocating in the darkness. I am glad I didn’t believe the lie that I deserve that. And I am glad for friends who are brave enough to share their light.

I threw out a tub of low-fat yogurt today. It expired May 7th. I still have a carton of egg whites in the fridge door. And every time I get milk for my tea, or grab a cheese stick for Bryson’s lunch, I see the jar of applesauce, the low-fat margarine that I always thought was kinda gross, and the pharmacy bag with Brody’s leftover medicine.

I’ll have to throw all of that out eventually. I never bought egg whites or low fat anything before Brody. I don’t expect I ever will again.

There are three overripe bananas in the fruit bowl. I can’t bring myself to bake anything with them. I just think of how proud I was of the nearly fat-free banana muffin recipe that I came up with. I loved watching Brody enjoy those muffins. Now I can just make normal muffins with as much fat as I want. And that’s devastating.

He’s really gone. I don’t get to feed him any more.

Of course, I can’t deny that I have moments when I’m relieved I don’t have to manage that disease any longer. I hate those moments though. Brody was worth it. I love him. But I hate that disease. The lowest point in my life was when Brody was diagnosed with Glutaric Acidemia Type II, and the specialist explained how his little body was unable to metabolize fats and proteins and thus could not function or grow. I was shocked. I thanked the doctor and asked him if he believed in miracles. He said Brody was very sick, but he believed there was always hope.

Even after Brody came home, and showed miraculous improvement, I had so much fury toward God. Nothing has shaken my faith more than that diagnosis. I screamed and swore at God until I could finally forgive Her for not answering my prayer. Brody wasn’t born healthy, but I could still choose to trust God that he would thrive throughout his life.

I found an old journal today from right after Brody was born. In it, I wrote Bible verses and prayers and statements of faith. I’ve always enjoyed encouraging myself by writing out positive statements. I wish those prayers had come true.

I used to carry a recipe card around with me. I wrote it a few weeks after Brody came home. It says what I wanted from God for Brody and then what God wanted from me. I would share it, but I’m not brave enough. I can’t read that card without crying. The last lines are: “God has given me hope that is greater than fear, peace that is greater than torment and joy that is greater than pain. We are God’s favourites!”

There are moments when I measure my effort, when I hold my faith up to God and ask Her why it wasn’t enough for Brody to be born healthy. I really trusted Her. Isn’t there power in that?

Then I consider all the gifts God has given me. I remember the words God has spoken right to my spirit – right to me. I relive the moments when God’s presence was undeniable.

And I realize that my focus needs to rest on God’s goodness. No peace can come from dwelling on what I did or on what God didn’t do. I did what I could do. God did what she could do. In the end, that disease still killed my son.

I don’t understand, but I won’t forget all the victories because of this defeat.

Yesterday at dinner, Bryson told us that he had one more plan – one final idea for how we can see Brody again. We’ve apparently convinced him now that Brody is not coming back to life, so he’s been thinking about what else might bring us back together.

“I miss him as much as you do,” he said. “I love him as much as you do. And I have one final idea and that’s to kill ourselves.”

My incredible husband stayed completely calm. He got out of his seat and went right next to Bryson to help explain to his hurting heart that it just doesn’t work that way.

I lasted about 25 seconds before I left the room and cried.

I recognize that Bryson isn’t suicidal. He loves life. He knows he’s loved. But wow. What a thing for a kid to lay in bed and think about. What a plan to make to see your little brother. My heart aches.

After dinner, Jensen led an object lesson with Bryson and me. He had us stand on opposite walls of a protruding corner so we were close to one another but could not see each other. Then he took Bryson’s hand and then my hand so we made a three-person chain. Bryson and I could each see Jensen, but we couldn’t see each other. He explained that Jesus is with us and he is with Brody. Just like Bryson and I were connected through Jensen, we are all still connected through Jesus. He told Bryson that he can talk to Jesus, and he can still talk to Brody too.

I am thankful for this. Sometimes I am deeply comforted by this truth. But sometimes it just does not feel like enough. I want more connection with my son than prayers and love letters. I want a relationship. I want to watch him grow.

Today, I took Bryson to the Forks to eat fish and chips and play in the splash pad. Being with him feeds the good wolf and reminds me that I will enjoy this life. He is a bright and beautiful light.

While we were eating, Bryson said, “Jesus is so powerful mommy, but he can’t do one simple thing!” Clearly exasperated he explained, “He can’t make Brody come back to life!”

“Jesus is so powerful,” I agreed. “He is the reason Brody can be in Heaven now. And even though Jesus didn’t bring Brody’s body back to life on earth, Jesus is the reason we will get to spend eternity together one day.”

But I also told him that I get it – I get how he’s feeling. It is frustrating and confusing and it takes a lot of faith to say that God is good, God is powerful and Brody is dead.

I keep telling God that I trust Her with all of this. I trust Her to help me parent Bryson through this tragedy. I trust Her with my aching heart. It feels entirely unfair, but I guess if it were easy and obvious, it wouldn’t be faith.

One month yesterday.

Several friends have asked me why I decided to write this blog. They’re not meaning to suggest that I’m crazy for doing so – at least I hope not – but they do seem genuinely surprised that I’ve chosen to share such personal details of my life.

I haven’t had answers for them except to say that I knew within hours of Brody’s death that I needed to start blogging. I just knew.

As I read brilliant, honest books; speak with friends and reflect, I begin to see that creating this blog was a generous and healing gift to give myself.

In Brene Brown’s book, Daring Greatly, she writes that “the act of not discussing a traumatic event … could be more damaging than the actual event. Conversely, when people shared their stories and experiences, their physical health improved.”

Really? Are you sure Dr. Brown? Choosing not to share our painful stories does us more harm than the painful event itself? I struggled with this idea when I first read it. Surely having Brody die has done more harm than not talking about it could.

But, I think she might have uncovered something true and very powerful actually. Because  “the act of not discussing” creates secrets, and secrets bring shame. Shame, or the fear of  disconnection, can isolate us and draw us into ourselves. If shame endures, I think it can do more damage than trauma.

Instead of hiding feelings of guilt, or being ashamed of my questions and doubts, blogging encourages me to shine light on fear and shame. It helps me cull and tame wild thoughts and cultivate clearer, healthier ones. It leads to self-discovery and self-awareness.

Of course, not everyone who experiences great loss needs to blog, but I think we do all need to share our stories. We all need to expose and question the lies in our head before they take root in our heart. We don’t need to tell everyone everything – that’s what best friends, partners, therapists and God are for – but vulnerability invites closer connection with community.

“Shame derives its power from being unspeakable,” Brown writes. “Language and story bring light to shame and destroy it.”

And I want to live in the light.