Dear Jace

It's been a year since I told you you couldn't spend the night with me.  I will regret that for the rest of my life.  If only I said yes, you would still be alive.  He wouldn't have hurt you.  My heart wouldn't be broken.  I know wanting you to be alive is selfish.  You're with Jesus.  I miss you every day, but most days I'm too scared to open the box of pain I carry around with me.  I know if I do, it might eat me alive.  I still can't watch the videos of you.  It hurts too much.  I'm so sorry you died.  I know it isn't my fault, but still I'm sorry.  I'm sorry I didn't protect you.  I'm sorry I let that bad man in my house.

You taught me so much the short time I had you.  You taught me how much better life is when I am not living just for my self.  You taught me how valuable and vulnerable the life of a child is.  You taught me I am stronger than I thought.  You taught me how strong love is.  It never mattered to me if you were "special needs" or sick forever or whatever.  You were perfect.  You taught me I was loveable.  Every time you were happy to see me and told me over and over "I love you, Stacey." You let me see how someone could discover God with a child's faith.  You believed God loved you and God would make you and papa and anybody "better" just because I told you so.  My favorite sounds in the world were your laugh and your singing voice.

My small finite brain cannot understand heaven.  I love Jesus so much, but I can't wrap my brain around this mystery.  I guess I have trouble trusting what people tell me about it, when God tells me so little.  I can't fathom something beyond time and space and that maybe you can see me or something, but then I think I don't really want you to watch me when I'm going to the bathroom or watching the Real Housewives on TV.   I trust that you're there and you're happy, and that you get to be around my dad and maybe even Andrea's mom, but really I just don't get it.  I just have to wait to find out I guess.


I just hope you know how much you changed me.  How much I love you.  How I promise to try and make your life worth it.  I promise I will try and stop other children from hurting.  I will try and be a better person because I knew you and not a worse person because you died.  I know someday the pain of missing you will grow less stinging and the joy of knowing you will grow more comforting.  I hope I'm not letting you down by still hurting so much.



I love you too much. 

Walk On

Grief is like a constant companion.  It's always with you.  Sometimes I get to take a break and laugh and joke around and be obnoxious, but the ache is still there.  There are different kinds of grief.  The stabbing shocking tearing loss of having a child ripped from your life.  Then there is the dull sweet ache of looking at your dad's chair and knowing he'll never sit there again.  The ache that lays there as I look at the snow and know my dad won't come shovel me out.  That he wasn't much of a conversationalist but that he would do things like that to shout I love you at us. 

I think one day I'll hide it more, even from myself, but I also know it will never completely leave me.  It's kind of like when you are a kid and realize your heroes are flawed or that Santa isn't real.  You're never the same again.  When Andrea's mom died, I told her I felt like I was losing part of my best friend too, because the sadness would change who she was.  I had no idea I'd be missing myself so soon after.  I'll never be that person.  It's like I have this secret knowledge that not everyone knows and that I didn't want to learn.  I know now that the worst thing imaginable could happen any second.  No Bible no optimism no army can protect me from pain. 

I'm supposed to feel better because of heaven.  I try to.  I believe in it - I do. The problem is I believe in it, but I don't want to see Jace and my dad someday on a golden street or in a house with many rooms when I'm 83, because women in my family never seem to die.  I want them now.  I want to hear them laugh and sing.  I don't know much about heaven, but I know it will never be like it was.  Like what I miss so much.  I suppose it will be better, but I can't picture it.  I can't imagine it.  I don't know how to fathom a place without time or bathrooms. 

I'm not alone.  Plenty of other people are in this club.  They understand what it means to be sad.  To be in this shadow.  Sometimes we reach out to each other, but a million words or hugs don't change who I am now.  I know I'm not alone, it just feels so much like I am. 

In the end there's only one thing to do.  Keep walking. 

The Best Gift

I don't know why, but when my mom woke me up with a phone call at 2:59 am on June 13, and told me Jace was in the hospital unconcious and they were paging a neurosurgeon, the first thing I prayed when I hung up, was, "Thank you God for the gift you have given us in Jace.  Every moment with him has truly been a beautiful gift."  I'm not saying I knew he was going to die or anything weird like that, I just felt overwhelming thankfulness for every hug and every kiss and every second of listening to his laughter. 

This Christmas is not very merry.  We can't buy presents for our baby.  My mom put a tiny Christmas tree on his grave instead.  In the end I am still thankful for every kiss and every hug and every second of laughter.  I could say a lot of depressing stuff about how life sucks, because its really not very enjoyable anymore.  Instead I will tell you that God exists in the valleys and on the mountaintops and on the mountaintops that we foolishly mistake for valleys. I will tell you that loving God does not mean living a life free of pain.  I will tell you that all children should be cherished.  I will tell you that the most important things in our lives are not things at all.  They are people. 

God didn't send a bigger house or a new car to the earth to save us.  He sent us his son.  Someone we could know, touch, hear, and feel to earth to save us.  Our relationships need to be treasured and nurtured and not taken for granted.   During this difficult time in my life there have been many people who have reached out to me and comforted me and helped me.  I am grateful to each of you for what you have done.  There are a few outside of my family who have gone the second mile for me, and I want to thank them. 

Andrea Keown has prayed for me.  During the summer, when the last place I wanted to be was home, she flew me to Seattle and let me stay with her for 10 days.  I was not the happiest or funnest person to be around, but she let me cry and be depressed all I needed to, and bought me a fan, because it was hot outside, and took me to Canada instead of her mom's house.  She baked for me and ate Canadian brussel sprouts with me and bought me a lot of coffee. 

Valerie Lahmeyer is one person outside my family who can come close to understanding my pain.  She has made sacrifices for children, and right after losing her own child, flew to Tulsa to be with me during Jace's funeral.  She stuck by my side that whole week.  She has recently become my roommate, and has put up with my irrational tantrums at her putting up Christmas decorations and random crying spells anytime the conversation turns to a reminder of Jace. 

Erin Roberts is not good at talking about my pain and loss.  She gets really awkward when I get sad and gets kind of therapisty with me.  She gets this "oh no" look in her eyes, but that's ok - she deals with it and lets me talk anyway.  In the meantime, she has spent about a bazillion hours over the last two months helping me make quilts out of Jace's clothes for my family.  Seriously a bazillion hours.  Let me tell you, its not exactly fun making stuff out of a dead kid's pajamas.  It's depressing.  I don't know anyone else who would do this for me, and Erin doesn't even love Jesus (yet). 

Andrea Duntley has just been the best best friend of all best friends in the history of best friends.  She has talked, laughed, cried, listened, let my wipe my snot on her shoulder, made her kids hug and kiss me, rolled her eyes at me less, and has shown me by example how to still love God even when I don't understand him. 


Who are your gifts? 

Looking at the Moon

I am sorry I stopped blogging.  Sometimes it hurts too much to think.  To try and sum up something so precious like Jace's life in a few words seems cruel.  It is hard right now to think about even the happy memories, because each happy memory compounds the depth of the loss - the great chasm in the world.  The place where Jace belongs but no longer is.  I can't think about the the happy memories and be happy to have them yet, they all just scream at me that Jace isn't here.

Some times I feel loved and supported by friends and strangers.  Like they are holding me up when I don't have strength to stand.  Other times I feel completely and utterly alone.  Like no one knows and no one cares and no one wants to be bothered with my sorrow.  People say dumb and insensitive things.  That doesn't bother me that much, because I know there is nothing that is right to say.  Other people stop saying anything at all.  They act like it never happened or expect me to act normal.  I still feel like nothing will will ever be normal again.  Not the morning, not the night, not my family, not my heart, not even God.  Nothing in the world will ever be normal.  A small part of me thinks this isn't true.  I hope it isn't true, but the sting of the loss seems to hurt more with time so far and not less.

Friends and family feel distant.  It is a hard thing to really carry another's burden, and hopefully this will teach me how to do that for others.

Right now I'm still too sad to save the world or fight the darkness.  The best I can do is not to let it swallow me whole.  The time will come though.  The weight of this pain will lessen and we will move forward.

Today we had court.  The preliminary hearing.  The Doctor and the Detective testified and gave the judge enough evidence for him to say there will be a murder trial.  Murder.  I shouldn't be at a murder trial.  This should be on Dateline or in a novel.

When we first got Jace we worried he might die.  If only his lungs or his health problems would have grown worse and he would have died that way - it would have been bitter sweet.  We would have been sad, but we could take solace in the fact that we made his days on earth sweeter for the short time he was here.  But for him to be murdered takes away all reason and most of the peace.  He was stolen from us.  A million different things could have happened differently and he would still be here.  But wishing him back won't work, and no matter how hard I pray to wake up and find him alive, I think that may be a mountain God won't move.

I know this is depressing.  I didn't mean to write all that.  I just feel so bad.  Really really bad.  I just miss him every minute.  I can't wake up without crying and I can't go to bed without crying.  During the day I have to try and forget about him or I won't make it through work.

I cry every single night lately when I take the dog for a walk.  The moon has been out and visible in the sky.  Jace loved to look for the moon.

One day early in the morning I was driving him to grandma's house when he said from the backseat, "Look, Stacey, a ball."

He was pointing out the car window to the moon still hanging in the early morning sky.  I explained to him the moon comes out when the sun goes to sleep and then the moon goes night night while the sun is awake.  The rest of the car ride he was looking for and pointing at the moon.  From then on almost every night we went outside and looked at the moon, or for the  moon.  Sometimes it was hiding.  I hope at night when I see the moon now, he is looking at it too and remembering me.  I'll never see it and not remember him.

I love you too much, Jace.

Jace's Life: Age 1

On Jace’s 1^st birthday we had cupcakes with just the family at my mom and dad’s house.  My cousin Andrew and I thought Jace would love some silly string, but he really really didn't.  I’m not sure if it was my mom’s singing or the silly string, but he was terrified and cried and cried.  Poor little guy. 

Jace’s big birthday party the next weekend was ridiculous.  We had enough food for a few hundred people and planned about  a million activities.  For some reason – to celebrate the birthday of a little boy on oxygen who couldn’t even walk, we were convinced we absolutely needed to have a Jupiter Jump.  Jace mainly hung out on the patio because of his oxygen, but all the other kids had lots of fun.  He got WAY too many toys, and we all yelled at my sister for planning an outdoor birthday party when it was so hot outside.  

I feel so sad that so much time of his short life is such blur to me.  I thought there would be billions more moments to cherish.  I never imagined there would be so few.  Now trying to write this, I hate that I can't think of more.  I should have held each second closer.  

Many many times a day and night, his oxygen alarm would go off, meaning he wasn’t getting enough air.  Most of the time it meant the tube was out of his nose, and we just had to put it back in the right spot.  One day, I think around Christmas, we noticed it was not in his nose and the alarm wasn’t going off.  WHAT!?!  We waited and waited and waited and for most of the day he was off the oxygen.  It took a little more time, but soon the home health people rolled away all the cumbersome medical equipment.  I think it was even sometime before he turned two, that he stopped needing breathing treatments.  He went from “worst lung’s the doctor’s ever seen” to not even having symptoms of asthma.  

Sometime during that year he started crawling.  Jace did everything late, but his physical therapists insisted he needed to crawl, so he did.  We were in so much trouble.  The cute little baby we used to hold and rock and put on a blanket on the floor, was now a one man demolition crew.  He had about a million toys, but he wasn’t interested in them.  He was more interested in playing the remote, the laptop, the laptop cord, the candles, the books on the shelf, our shoes, our purses, our keys, the dvd player, the coasters, the pots and pans - anything but toys.  If I thought it was tiring taking care of baby Jace, it was exhausting taking care of crawling Jace.  

With Jace’s development we were so worried.  Things seemed like they were taking forever.  We worried he would never sit up, never crawl, never talk, never walk.  Now looking back, I can barely remember those worries.  He overcame every obstacle.  

On March 20^th, 2008, Jace was adopted and became Jace Alexander Burgess.  His adoption party was miserable.  It was at a park, and it was FREEZING outside.  Leslie is a terrible party planner.  All our family and best friends braved the harsh conditions to celebrate the addition to our family.  There was an adoption board my mom made showing a picture of Jace when he was born (he was about the size of a thermometer) compared to Jace at 21 months.  Such a miracle.  

I wish I could give you some idea of what Jace did for our family.  Having him made every hard thing we had ever been through okay.  Leslie and I had long been on the road to spinsterhood.  (I mean not intentionally - anyone who wants to date me feel free to call.)  Anyway, my mother not very subtly often let us know that all hr friends had grandchildren and that she felt left out.  Jace fixed that for her.  He was apple of my parents' eyes.  I don’t think any grandchild has been more worshiped in the history of the universe.  I'm not kidding when I tell you our lives have been difficult.  I could list all our troubles for you, and I promise you would feel more sorry for us.  We’ve had more than our fair share.  But Jace was the perfect gift.  He was the reward for not giving up.  He was happiness and life and peace for us all.  It didn’t matter anymore if things were hard, because at the end of the day he would wrap his arms around you and kiss you and make you all better.

 

We used to joke about what would happen if Leslie, Jace, and I still lived together when he to school.  The poor kid would get strange looks from the teachers if he told them he had two moms.  One day I had friends over for dinner.  I was sitting on the couch with Jace, and all of the sudden he looked at me and said “da da.”  That one got a lot of laughs. 

Jace’s laugh was probably the most precious part about this age.  You can hear it in this video from the day he was adopted.

If you are wondering how my family is doing, the answer is not great.  Things aren’t getting easier.  I'm pretty sure they are getting harder.  It seems we are living a nightmare.  Every day I feel farther away from him, and he is the only thing I want in the world.  Sometimes I don’t want the pain to stop, because in some ways I feel like the pain keeps me connected to him.  The worst times are the down times.  The sit at home with nothing occupying me times.  The times I can think.  Another hard time for me is at church during worship.  I imagine Jace in heaven singing at the same time, which is beautiful, but I so desperately want him here.  Sometimes I wish I could be there.  I don’t understand how life can go on without him.  It will.  It has to. All we can do is trust God for more hope and more peace and more life. 

Jace's Life: Birth - 12 months

The other day, my sister pointed out that people are so focused on Jace’s death, that I don’t want them to forget how he lived.  How he was a miracle.  How he changed us.  She’s right.  Some of you don’t know much about him.  You deserve to know him.  I’m going to try and write 3-4 posts about his life.  What a short biography.  He deserved more.  This is only my version – we could probably have the four gospels of Jace written by me, my sister, my mom, and my dad.  That was not meant in a heretical way :)   

Birth-12 months

The first time I saw Jace was in the PICU.  Sadly, the last time I saw Jace was also in the PICU.  That first day in December of 07, I walked into his room, looked at him, then looked into my sister’s hopeful and expecting eyes and said, “He’s kind of ugly.”

Jace had been in the hospital since being born at 25 weeks.  My sister and I had talked about fostering, but could never agree on it at the same time.  Finally, she wanted to bring home Jace. S he told me that if we didn’t take him he was going to a nursing home for kids, and that he would only get worse there.  I kind of didn’t want to, because I was scared, but I said ok.  When he came home at just over six months old, he was on about 14 medications, had to eat through a feeding tube every few hours, have breathing treatments every four hours, was on oxygen, and we had to use this scary loud sucking machine to get any boogers out of his nose.  It seemed like he went to at least one appointment every day.  

I guess his mom had problems with addictions.  Am I glad she struggled?  No.  Am I grateful she gave us the opportunity to know her son?  Yes.  She created a miracle.  She must have a lot of goodness inside of her to have made something so wonderful.

The first night we had Jace at home, I worried about what we had gotten ourselves into.  I have never been so great with babies.  I’m kind of scared of breaking them.  Kids – I’m magical with kids, but babies freak me out.  My mom and sister brought him in with all his machines and tubes.  He seemed so fragile.  Almost like it would be difficult to really hold him with all the cords and things attached to him. 

When it was time for bed that night, his alarm kept going off.  Leslie, my sister, kept turning up his oxygen that needed to be in the high 90’s, but it kept going down.  88, 85, 82, 79.  She started to freak out.  She was on the phone with the Doctor.  He told her to go to the pharmacy and get something.  So she left me home, alone, holding a sick baby who was barely breathing.  I started sobbing and thought he would die right there in my arms. 

Christmas was a week later, and he was the best gift ever. 

It seems like I can barely even remember those early days.  I’m pretty sure they were hard.  There were times I thought we couldn’t handle it.  My sister was working with sick babies at work and then coming home and doing the same thing.  I was working a stressful job, and then every weekend, while my sister worked, I was home alone with Jace, and it exhausted me.  When my sister went to work during the week, she would get up at 5 a.m. and lug all his machines and oxygen and equipment across town to our parent’s house for them to babysit.  I wanted so badly for him to get better.  When he first came home, he would only kind of stare up at the ceiling.  We had to block his eyes with our hands to get him to look down at us.  He was so used to being in the hospital, he didn’t know how to be part of a family.

I was scared his feeding button would fall out, or that he’d stop breathing and the alarm wouldn’t wake me up.  I was worried he would have problems his entire life.  Doctors sent my sister to get Jace a million tests.  They said his lungs were the worst they’d ever seen.  One time when the oxygen monitor broke, we had to stay up all night watching him to make sure he was still breathing.  They sent him for scans to see if his brain was messed up.  They sent us for tests to see if his heart was messed up.  They sent us for tests to see if – I don’t know, but he went to the doctor a lot. 

It was hard, and it was scary.  But the most amazing things started happening.  My sister became a new person.  She lived to make him better.  And he got better.   I don’t want to give away the end of the story, but if you could have heard what the Doctors told us Jace would be like, compared to what he became, you would be so proud of her and of Jace.  My mom was so happy to be a grandma.  I was ticked off that my sister was officially the favorite again for providing them with a grandson.  My dad, who doesn’t get excited about anything, was excited to see Jace everyday when he got home from work.  The times were hard, but there were more smiles and more kisses and more good feelings than ever before. 

I remember the physical therapists told us not to let Jace stand up – that he had to crawl first and he was working on the wrong muscles, but he loved to bounce on his legs while we held him.  It was so cute and so hard not to let him.   I remember the first time we put him in an exer-saucer.  He looked at us with a look that said, “Is this some sort of joke?”  I remember the nights that I would rock him to sleep, because I was the baby whisperer.  I remember fighting with Leslie over who had to do the 4 a.m. breathing treatment and sometimes pretending like I forgot she was working the next day so I wouldn’t have to do it. 

I remember the times he wouldn’t stop crying, so we would sing to him, and it would seem like it was working, but then it didn’t.  I remember dreading having to go anywhere, because it was so much work to take the oxygen and monitor and everything places.  I remember how we didn’t leave the house with him for about six months except to go to doctor’s appointments, because if he got any kind of sick, it could be deadly for him.  I remember when my sister was discussing adoption, and I thought – if she doesn’t adopt him – I will, because there is no way we can lose him now.

I regret that I can’t remember more.

When I do therapy with kids who have been through a major trauma, I always tell them – in some ways this incident will define who you are.  You have a choice now.  You can take what happened to you and let it make you a better person or you can let it make you a worse person.  You have to pick which path you are going to go down.  I have always been kind of proud of myself for picking the path of being a better person after I got shot.  I’m pretty sure Jace was wise beyond his years, because he had a traumatic birth.  It could have ruined him, but he picked the better path.  He let it make him a better person.  He was growing into someone amazing and kind and funny.  According to the doctors he shouldn’t have had a chance to be any of those things.  I’m so grateful that they were wrong. 

Oh, and by age 1, he’d grown completely out of his ugly stage – PTL. 

Freedom

Last week my family sat in the conference room at the Victim-Witness Center in the DA’s office.  We talked about what we could expect over the next year.  He told us it would be a long process.  Done in a year if we are lucky.  The Victim Advocate reminded us that even then it won’t make everything better.  We already knew that.  No matter what happens – Jace will never be back, and that is the only thing we want. 

The ADA talked about life sentences and how sometimes it can be hard for a jury to come to grips with someone young spending the rest of his or her life in prison.  I wanted to stand on the table and scream, “WHAT ABOUT US!  WE’VE BEEN SENTENCED TO A LIFE OF UNHAPPINESS!”  We are locked in the prison of our pain. 

There have been moments over the last six weeks that I felt death would be a blessing.  That I would only be able to spend the rest of my breathing moments waiting for my time to leave this world and this pain behind.  There have been times I felt envious of my dad.  He has a 60% chance of getting to see Jace in the next year if the cancer wins. I don’t want to have to feel like this.  No one should have to feel like this.  This is no way to live. 

The thing is, I haven’t been found guilty.  My life doesn’t have to end, even though it feels like it’s over.  If I continue to let pain bind me forever, it will be because I refuse to use the key I’m holding to unlock the chains.  So I’m not going to sit around waiting to die.  I’m going to do things that make me happy.  I’m not going to spend time being hurt by people I don’t need or getting angry about things that won’t matter next week.  I’m not going to hide for fear of what others might think.  I won’t feel guilty because I’m alive or because I can smile when the sun hits my face, because in living each day – I glorify God. 

I will write.  I will sing off key and laugh too loud.  I will tell jokes that everyone will have to stop and think about before deciding they are funny.  I will play with children.  I will give money and time away to  people who don’t deserve it.  I will go to church.  I will eat pizza and feel guilty for not feeling guilty.  I will cuss because I want to be funny but never because I’m angry.  I will make everyone I just ate dinner with put their hands in the middle of a circle outside the restaurant and shout, “Justin Beiber!” on three.  I will drink Starbucks.  I will spend time with people who make me feel good.  I will travel.  I will cry at the Wailing Wall and swim in the ocean.  I will wish I hadn’t when I can’t get all the sand out of that crevice sand should never go in.  I will get lost in good books and long for someone to kiss me goodnight. 

And I will cry.

I will mourn.

I will let the sadness have its moment each day.

 I will miss him and dream about him when I sleep.

I will get choked up when my best friend’s children get on the phone and say, “Hi, Aunt Stacey.”

These are things I must do.  This is what is right.  This is how I will be set free.