Sunday, August 15, 2010

Jace's Life: Age 1

On Jace’s 1st 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 20th, 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. 

Tuesday, August 3, 2010

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.