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. 

Huge Love

I started this blog to tell you what was happening with Jace. I want to continue it to inspire and make people feel good and make everyone understand Jesus better. There isn’t much I can tell now about the case and updates about my day to day would pretty much say – I get up. I cry. I work. I cry. I sit around waiting to go to bed. I cry. I sleep. I want to write, but how do I try to be inspirational when I just feel like crap? So I’ll go on with this blog writing about whatever comes to mind from day to day as I go through this. I’ll talk about God and loss and faith and sorrow and gratitude. A recent conversation with Tim Roberts had me thinking about God and Christianity.

So yes – I feel like my life is crap right now. Did you know it is possible to love Jesus and feel like crap? You can love him and have a bad day. You can still love him and act like a jerk sometimes. You can love him and not say hallelujah at the end of every sentence. Sometimes Christianity seems like a product that is marketed to people that haven’t bought into it yet. People are told – get happy, healthy, and wealthy – just by coming to church! Other times it is marketed as a set of rules: don’tdrink, don’t have sex, don’t use major cuss words (minor ones are ok sometimes depending on the context and as long as it’s not on Sunday). If you do use a major cuss word on Sunday, you will probably burn for all eternity.

I’m convinced that being a Christian isn’t so much about what I do or don’t do. It’s not about what I get out of the deal – not about my return on investment. It’s not about me keeping or breaking the rules. It’s about the fact that God loves me. He loves me. He loves me. He loves me. I used to roll my eyes at my mom before, when she would tell me I couldn’t understand how much she loved me. She loved me so much that when I made bad choices, it made her crazy and willing to do anything to get me back to being safe. I think through my relationship with Jace, I started to understand what a parent’s love is like. I wasn’t his birth parent. I didn’t even adopt him. But I was there singing him to sleep, getting him up and dressed in the mornings, and alongside my sister , mom, and dad, trying to teach him to be good. I understand going a little crazy wanting to protect him, because I loved him so much, and now that he’s gone, I understand the immense pain of losing a child. I know maybe my feelings aren’t even as huge as if he had really been my son, but I can’t imagine them being any huger. I know for sure my feelings aren’t as huge as the feelings God has for us.

In helping to raise Jace, I really wanted him to share. I wanted him to say please and thank you. I wanted him to be a good friend and to be kind to people. I wanted him to do these things because I knew it would make his life better. I knew his life would be easier and more fulfilling if he followed the guidelines we set out for him. That is why God wants us to be “good.” Not because he is ready and excited to pounce on us and punish us if we are “bad” but because our lives will be better if we stay within his guidelines. Messing up – treating someone badly, gossiping, punching someone in the face, lying, cheating, stealing, killing - doesn’t mean he loves us less. Do you love your kids less when they break your rules?

It’s not about rules. It’s not about being one way or not being another way. It’s about the fact that he loves us. Kids ultimately don’t like to disappoint their parents. I remember crying more because my mom was unhappy with me than because I was getting spanked. That is why I want to be “good.” Not because I am afraid of going to hell. Not because I will be struck by lightning if I sin. Not even because the Bible says I should. I want to be “good,” because I know Jesus loves me, and I know it hurts him when I don’t do what he asks of me. He loves me so much, that I don’t want to disappoint him. I want to help other people, be kind, and do good things, because I think it makes him proud of me.

That’s what it means when people use the cheesy saying, “It’s all about a personal relationship.” I am thankful that loving Jace helped me understand God’s love for me more. Loving Jace has made me a better person. My sister said,“I want to live a life that makes God and Jace proud.” That’s right. I don’t want to take the gifts that God and Jace gave me for granted. I want to take the huge love that I learned from Jace and make my life worthy of his love and the love that God gave me through his son.

It's not Fair

It’s not fair that God answers other people’s prayers and not mine. It’s not fair that when other people face losses, they have husbands and kids to hug them. It’s not fair that more bad things happen to me than anyone else. It’s not fair that Jace was the only good thing in our lives, and he was stolen from us. It’s not fair that we rescued him only for him to be murdered later. It’s not fair that I have to cry while everyone else is happy. It’s not fair that my world has ended, and everyone else’s is still turning. It’s not fair that some people can eat a lot and be skinny. It’s not fair that everything works out for some people and nothing works out for me. It’s not fair that my dad has cancer. It’s not fair that my immune system is attacking itself. It’s not fair that the day before Jace died I thought life was finally looking up. It’s not fair that I work with parents who don’t take good care of their children but those kids will all get to grow up. It’s not fair that my mom doesn’t get to be a grandma. It’s not fair that I had to be Jace’s aunt and not his mom. It’s not fair that when my friends talk about their kids I don’t have one to talk about. It’s not fair that when I do talk about Jace, everyone acts awkward. It’s not fair that the person who loved me more than anyone else is dead. It’s not fair that the person I loved more than anyone else is dead. It’s not fair that no one ever listens to me. It’s not fair that I have to hurt so much. It’s not fair that I have to question God. It’s not fair that people I thought cared about me act like nothing happened. It’s not fair that Jesus gets to hold Jace, and I don’t. It’s not fair that some people’s lives seem easy. It’s not fair that people whose lives seem easy think they have it bad. It’s not fair that I have to rely on myself. It’s not fair that I don’t have more vacation time. It’s not fair. It’s not fair. It’s not fair.

End Tantrum.

People always say to do what your heart tells you. That’s not possible for me right now. My heart is broken. It’s not working right. My heart feels like no one cares, like I’m all alone, like the sun will never come out, like God has abandoned me. So I’m living by what I know – not what I feel. I know I am loved. I know nothing can separate me from the love of God. I know it will not always hurt this much. I know good will win.

Big Picture

Sorry for the lapse in updating. My sister and I went with my parents to St. Louis for the long weekend. Getting away from it all with four really sad and grouchy people wasn’t exactly a vacation, but no one got hurt. Tuesday morning my dad had an appointment at the Siteman Cancer Center at Barnes Jewish Hospital to discuss a stem cell transplant. (Not the controversial stem cells – they get these from grownups). My dad has Myelodysplastic syndrome which is a blood and bone marrow cancer. This transplant is the only way to “cure” him, but it in itself is very risky.

I’m sure you can imagine my family’s stress at the possibility of two huge losses in one year. Right now it’s really hard to pray and believe for miracles, but that doesn’t mean we aren’t going to. The thing about God is that he knows the big picture. You know how when you were in middle school that girl named ____ made your life a living hell? You thought it couldn’t possibly be any worse. You thought the world was over. You thought the pain would never end. Now looking back at middle school, I bet it is barely a blip on your radar.

Now I can smile as I remember the time I fell walking home from the bus stop, and the boy I liked asked me if I had a nice trip. I didn’t think it was funny then. But the horrors of middle school came and went, and now in the big picture of my life – those things that happened weren’t really that big of a deal. I bet that’s what our present lives are like to God. It’s almost scary to think about, but compared to eternity our earthly lives are barely going to be a blip on the radar. Right now everything hurts, but one day when I’m happy and free and skinny in heaven – all this pain isn’t going to matter so much anymore. So even if everything in this world falls apart – it’s going to get better. It won’t last forever. It’s temporary.

Still – I want to see the goodness of God in the land of the living. (That’s in the Bible)

Every night before Jace went to bed he would pray. He would do the usual thanking God for all the people he could think of – Thank you for Mommy, thank you for Stacey, thank you for Gama, thank you for Papa, thank you for Anoo, thank for Manda, thank you for aunt Nancy, thank you for Jack (the dog), thank you for Camon, thank you for Dani, thank you for Tommy, thank you for Domi – ique, thank you for the gas man (the plummer), thank you for Miss Sandy, thank you for Miss Pat, Thank you for Donnie, thank you for Ani – a, thank you for Regan, thank for Cracker (Kiefer sounded just like cracker – I don’t know???), thank you for Mickey Mouse, thank you for my ears, thank you for my monster truck, thank you for my dino. At the end of his very long thanks, he would always end his prayer – “And please make Papa all better.”

My mom told me that she is pretty sure Jace is telling Jesus to make Papa all better now. I can picture him tugging on Jesus’ pants (I think he probably wears pants now – it’s the 21st century) and telling him, “Hey! Make Papa all better, RIGHT NOW!” He was going through a bossy stage right before he died.

I still miss him every second. I wonder if life will ever be ok again. I still wake up every morning hoping this isn’t real. The pain is so sharp and so acute that I tend to start balling at random moments – like right now when I’m sitting in Starbucks typing this. For those close to us – I know it’s hard and awkward, but thank you for your hugs and your time and your help. It can’t be fun to be around people who periodically break down and cry and talk about weird things and tell you stories about a dead kid, but we need it. Thanks for reading this. It helps me to write it.

Go Ahead and Try to Stop Me

Notes:  There are few things I want to tell you about Jace and about what my family is going through.  Some things I can say now, some things will have to wait until later. 

Cody Sartin plead not guilty to first degree murder, and the preliminary hearing has been set for August 10^th.

A few times in my life I have felt like I stood in the presence of greatness.  The governor came and had lunch with me at school when I was 16.  I touched Oral Robert’s head once when I sat behind him in the Mabee Center (just to say I did it). I met the mom of Rachel Scott who stood up for Jesus during the Columbine shootings.  I got the thumb print autograph of one of the men who killed the missionary Jim Elliot and later became a believer in God.  I went to a New Kids on the Block Concert when I was 12.  All of those were trumped today by an 8 year old girl. 

I am friends with the grandma and mom of the Broken Arrow Angel, a little girl who was kidnapped and sexually abused three years ago.  This family has shown amazing strength and dignity in the midst of this nightmare, and I have respected their faith and perseverance.  Today, I was in the court room with them when the man who did this was sentenced to six life sentences plus 40 something yearsfor what he did to this little girl.  Everyone was nervous when the little girl got up to read her statement to the judge and the perpetrator.  She didn’t look nervous at all.  She looked powerful.  I wish I could accurately describe the way the girl stood up, read her statement, and with the last sentence, looked directly at the man who hurt her and said with stern determination, “I'm going to be what God wants me to be and nothing's stopping me, especially you!”

It was so freaking awesome.  I wanted to stand up and clap, but no one else did, so I cried instead.  This family  didn’t let what happened destroy them.  They fought back.  They are overcoming.  They are letting good come from evil.  What you do when you’re handed something awful in life is your choice.  Whether someone in your family is killed, you get diagnosed with cancer, you lose your job, or your baby wakes you up at 4 am every morning, you decide what you do next. 

When your family member gets murdered, you can run to God or away from him.  I’m running to him.

When your family member gets murdered, you can you can let your anger consume you, or you can let it fuel you.  My anger will result in lives being saved. 

When your family member gets murdered, you can stop living too , or you can live your life so that it honors his memory.  I plan to make Jace shine. 

When your family member gets murdered, you can hate, or you can forgive.  I’m going to find a way to forgive, because if I don’t it will hurt me more than it will hurt him.  I won’t let him hurt me again.

(You can insert your own bad thing for ‘when your family member gets murdered.’)

I feel like I have had more than my fair share of bad things happen to me in my life.  I’ll give you the list later.  But today I want to look Satan in the eye and say,

I'm going to be what God wants me to be

and nothing's stopping me, especially you!

I’m glad I have such wonderful role models in this little girl’s family.  I’m humbled by their strength and courage.  I’ll post her entire statement below.  She deserves to be heard and honored.  The family reads this blog.  Tell them you’re proud of them too. 

Statement:

You need to respect your punishment,

that was a bad thing you did.

I don't want you hurting anybody else

that's why you should be in jail forever,

so accept it.

God made you but you are not like God's person,

you are the devil's person.

You should have been on God's side

and this would never have happened.

Back then I was the little angel fish

and you were the great white shark.

Now I'm the great white shark

and you're the little clown fish.

I'm going to forget all about you

and go on with my life how I want it to be

without any bad person stopping me.

I was only five years old, now I'm eight.

I'm going to be what God wants me to be

and nothing's stopping me, especially you!