Thursday, December 27, 2012

winter happenings

I would apologize again for waiting so long to blog, but I know thats getting old and obviously I'm not that sorry or I wouldn't do it anymore. Moving on...

A couple of weeks ago Gabby turned one. Can you believe it? I can't. I know its often that someone makes a comment about time going so quickly. I guess they do because its just so true. I am LOVING this stage of growth and maturity in Gabby. I feel like she is learning (and saying and doing) something new every day. Many of those times its learning (again and again) what NOT to do which constitutes her poised to do something "wrong" saying "no no" to me, and then doing it anyway. I appreciate her tenacity, but those are not always fun times. I did have to inform her the other day that its too bad for her that the only person in this family more stubborn than her is me. She'll learn to love me for that-- one day.

We had a little party for her and interestingly enough, she fades to the background a little with so many people around. Must get that from her father.

We tried to start some new traditions with her for this holiday time. We, of course, were not really sure what to do. The last few years around Christmas Liv had been too sick for us to go many places, so we had to take a cue from our friends. We spent a day (her birthday) at Crown Center. It was great. She, of course, is interested in everything, especially if its lit up and shiny. Lucky for her...

We spent the weekend before Christmas in Joplin with family, including her cousin who is 10 weeks younger than her. They were a hoot and kept every entertained, for sure.

As you would expect, parts of the holiday season were difficult for us, being the first Christmas without Olivia. We are definitely going to blog about that more in the coming days. We had to peek open the door of blogging just a bit with a fun and easy post.

Hope everyone enjoyed their holiday.

Thursday, November 22, 2012

Written in stone

So, I know its Thanksgiving and I'm probably supposed to write some kind of a post about that. I think we'll end up there-- I think. But thats not where we're starting.

Last Friday I was driving two crabby girls around in the back of my car waiting for them to either lighten up or fall asleep. I had 10 minutes to spare before I had to be someplace, so I stopped by my old "sure-fire waste 10 minutes" place-- the cemetery. I like to go at least once a week, mostly a few times. It had been a few days and I drove on in hoping I could escape the car a few minutes to visit Liv's patch of grass. Before I even pulled the car up I saw it and my breath caught in my chest and the hysterical tears began.

I hadn't been expecting it. They hadn't said that they would call when it came in, I just figured they would. But they didn't, and I couldn't pretend like I hadn't seen it. Thanksgiving to Christmas had been the time frame-- I guess it came a little early. Nevermind that they forgot to attach the vase...

After I finished my hysterics, a phone call to Brian and my mother, and a visit to Liv I really looked at the headstone. It seemed a bit plain, but then again, thats kind of our style. All the information is correct and I began to really focus on that sentence at the bottom. We really struggled for a while with what to add to the stone. We could have put the "you will be missed", "she was beautiful", "and angel among us" type sentence and none of that would really be wrong. But Brian and I thought that we would be the ones looking at it-- not Liv. We will always remember her silly, ornery attitude, that she was SO beautiful, and what her short life meant to us. We thought, though, there might be days-- either days or decades from when this stone arrived-- that we might be tempted to feel entitled, to wag our finger at God, or to be angry with Him that he shorted our family. We thought that lyric from Liv's song would remind us of what we really need to know when we visit her.

We needed to remember that the promises of God are certainly true all the time and are the ONLY thing we can really trust in in this life. He does not promise a happy, easy life obviously. But His promises are so much more expansive and long lasting. They are promises for the soul and not so much for the body. Those promises are what I am thankful for. Late at night when I'm thinking of Liv and the loss that we an incurred when she left, I have NOTHING else but the promises of God to hold onto. He is faithful-- all the time. It is against His nature to ever be contrary to that. There is so much consolation in His word-- not only consolation, but joy.

So, Happy Thanksgiving.

Saturday, November 10, 2012

A "good" Livi day

I love my daughter and treasure so much the memories I have of her. But (much like our view of God) often the intensity of her spirit dims and the scope of her touch shrinks when I don't have others perceptions of her. Today I have been loaded up with the words of people who loved her-- not because they had to, but because they loved to love her. This surplus should last me for a while.

The way Olivia touched mine and Brian's life will never leave me. It will always be at the forefront when I think of her, which is often. But how she reached out and touched others without having good muscles or words to do it with is beyond me. I do understand that after someone dies its everyone's instinct to make them some sort of a "saint".  Olivia did have a nasty attitude from time to time and did plenty of "naughty" things-- don't get me wrong, but she was a very special girl who had the intense pleasure and incredible opportunity to connect with others.

Today I was reminded that hosts of people at Children's Mercy Hospital here in Kansas City, other patient families and especially staff were truly touched and honored to know my child. They all still remember her and tell stories of her sassy little attitude and determined spirit. I am SO proud to be her mother. After that very touching phone call with a CMH employee I got to turn in my volunteer form to CCVI (Children's Center for the Visually Impaired) where Liv attended preschool. It had been several weeks since I had walked into that building and honestly I was a little worried about how emotionally overwhelming it might be. There were a few small moments that I saw Liv so vividly in that building, but it was a beautiful array of memories and happy, not sad. Again, we were welcomed by everyone in the building who knew us. They wanted to say "hello" to Gabby, but also to hug us and remember all the things we both loved about Liv.

These people who have surrounded us for years, both at the hospital and the preschool, are part of what our family misses so much about missing Liv. They were family to us and spurred us on to care for our daughter well and to never, NEVER underestimate her. If someone did once, they never would twice, that is for sure. Thank you, if you are reading this as an employee of either facility. We dearly love you and miss you tons. Thanks for your care for Liv and our family, and especially thank you for keeping her memory alive--we are astonished and flattered.

And, just because I can't help it...

Monday, November 5, 2012

3 course meal

Here is the appetizer: I'm sorry. I've done it again. This time I sort of have an excuse. I honestly haven't been feeling well the past few weeks. I'm not a very good "rester" though and its difficult to say if "taking care of myself" doesn't feel just like lazy. The lines are blurry for me.

Since I last posted Brian has turned 30. We had a wonderful party with all of our friends to celebrate the man in my life that I am most proud of. Also, I am about 8 months younger than him, so I get to rub it in for a bit.

Gabby is NOT walking, though we are walking around the house holding just one of her hands now. She usually walks in a kind of circle when we do this, but its too cute to pass up.

The main course: You wanna hear one of my biggest problems? Its fall. Thats not the bad part, I love fall, but I think I love fall because its crazy busy. The bustle of the holidays starts earlier every year and now blends right into getting ready for school and Halloween. I LOVE football and all the outdoor activities you try and squeeze in before it gets really cold. My problem is I don't slow down. I don't stop and I don't think. Honestly, my attempts at quiet or thoughtful time lately (only when Gabs is napping) is full of making a list of things I haven't done yet. No lie. Its super depressing and super discouraging. I'm not writing this post because I found a solution. I 'm writing it because I haven't. Because every day I wake up with incredible intentions and fail them one after the other. I'm guessing you're not too different. Maybe we can work on that together?

Lord, I like to have a full calendar more than I like spending meaningful time with you. Please, help me!

The dessert: So even though Gabs isn't walking, don't mistake-- she is doing PLENTY of funny things. Here is a sweet treat.

Friday, October 12, 2012

Skinny jeans, bird caller wrestler, and cableknit

So listen, I keep thinking I need to be thoughtful enough to put together some kind of really deep and meaningful complete thought. Apparently I can't. Our life is crazy busy right now, which is good. It doesn't leave too much time to think, which is also good-- sometimes. We've been in and out of town a ton lately, but here is a conglomeration of things happening in our house--when we've been home.

I usually go jeans shopping by myself. Honestly, its been since I don't know when since I've bought jeans. Long enough that my favorite pair now has holes in both knees. I feel comfortable (the last 3 years) being slouchy and wearing clothes that are a little looser. I guess I would rather people not look twice at me. Odds are I'm not wearing make up, I haven't showered, or I've been crying-- or some combination of those. So, Brian and I went on a date the other night and after eating dinner we went jeans shopping. If I were shopping alone I would find the closest regular bootcut jeans in a size too big and take them up to the register. This time however, my husband swayed my purchases and we came home with two pairs. One (and my very first) pair of skinny jeans and some kind called "sexy bootcut". Guess who voted for those.

Brian and I have decided that Gabby's wrestling name should be (in megaphone voice) THE BIRD CALLER. All she does is jump up and down and make these insane movements all the time while making several variations on this silly guttural yelling. It sounds like she is trying out every kind of bird call that ever existed. God help us, I hope this is a short phase. On a side note, if you babysit or love my child at all, if she is unhappy I have found that multigrain cheerios will cure any ail. Seriously. Keep some in your back pocket in case you encounter THE BIRD CALLER.

The cableknit part needs only two pictures. They are actually almost the same age in these pics. Compare and contrast--or something.

Monday, September 24, 2012

Trying to be like her

People still ask us all the time how we are doing. The funny thing is, it'll be 2 months since Liv passed away this Thursday and I wonder what they mean. Do you mean just generally? Or how am I doing since my daughter passed away recently? So, if you're inclined to ask, I'm not sure the answer you're looking for, so clarification in your expectations would help.

To answer the question, namely the second one, good, I guess. I'm never sure how to measure things like that, since its all very relative to our particular situation and what we would consider "good" having no measuring stick or previous experience with that. We're eating and sleeping and exercising some. We laugh a lot, but we still cry plenty. Usually, I find, in the quiet (which only happens when Gabby is sleeping) and I have time to think or read or look at the pictures of her all around me-- those are the times I cry the most, but a lot of times the moments I treasure the most and find the most healing.

Often, because the weather has been amazing lately, I find myself reading or spending quiet moments on our porch. A lot of the time I lay flat on my back and stare up at the tree--Liv's tree. I think about what she liked so much about looking at that tree and I try to appreciate and praise God for those things too. That tree, the monstrous ancient one outside our house will always be Liv's tree. But, there has been a second one added to the collection now

I try and look up when I go visit Liv here too, at the cemetery. I don't lay flat on my back on the ground (I feel like that might draw a crowd at a cemetery) but I look up at the recently very blue sky and the half live/ half dead leaves on "her tree". I listen to the wind whipping through the branches that sounds just like applause. I slowly begin to understand. It is not slowing down for the sake of slowing down. It is slowing down to notice and appreciate and understand the world that God has given us--a world that is desperately broken and sinister and decrepit, but that is full of wonderful things and moments like these. Thats what and who Liv was. She was the victim of a very broken and decrepit body. Many days were painful and difficult and sad, but always, we were grateful for any time with our little girl-- even the bad ones. And in those moments we take to appreciate her and who God made her to be, even in this sad world, we are like her and we draw closer to the heart of God.

I am continually finding it difficult to fully explain the role of faith in how we are "doing". I know, but it would be next to impossible for me to find appropriate words. Thankfully, God gave us books. I am reading this book by Nancy Guthrie called "Hearing Jesus Speak into Your Sorrow". I've read some other books, even others of her books, and while some of them are semi-helpful, this book has helped me think the things I am feeling. This is how we are doing...

Most of us have known what it is like to be full--to be full of ideas and full of promise, to have a full plate. Full feels good. But now we know what it is to be empty. And empty doesn't feel so good. One of the main ingredients of sorrow is emptiness--a deep and devastating emptiness left behind by empty promises, empty arms, an empty womb, an empty bank account, an empty place at the table, an empty bedroom, an empty bed. But as bad as empty feels, sometimes emptiness is actually good. God can work with empty. Over and over in Scripture we see that God fills emptiness with his own power and life.

We are feeling empty. But, are completely hopeful, and even expectant knowing that God will fill us again. Maybe soon. Maybe differently than we expected (in fact, probably) but having full faith that he will fill us with himself. 

Sunday, September 16, 2012

Gabba Dabba Doo: the nine months edition

Every time I start to write this blogpost (that I promised a while ago, I know) I think of all the pictures and all the stories I owe you and I chicken out and put it on the bottom of the pile of things to do. Yes, apparently I'd rather clean my bathroom than update you on Gabs. And not because I don't want to tell you, but because my crazy girl is doing so much. There are so many stories and faces and milestones I know I won't remember them all. Here is a shot...

Gabs is crawling. She has been for several weeks. She's nutty and doesn't crawl like other kids--my mom calls it Quasimoto crawling--one foot and one knee to the ground. She is preparing to run.

Or climb stairs. Left her in the foyer for about four seconds by herself a week after she started crawling. Yes, she is blurry and the stairs are, well, permanently (or so it seems) under construction.

Also doing this. On about every piece of furniture we own.

She LOVES the park and being outdoors. Its a good thing. Otherwise I would think she wasn't my child.

She also has two teeth now, but still wants to stick with baby food.

She is still teeny tiny, but completely fearless. I think its a rule those two things have to go together.

Gabs has been saying "momma" for a while now. She CAN say "dadda", she just chooses not to. Poor Daddy. The last few days have been better for him, though. She has stopped referring to him as "momma".

Gabs is SUPER fun, but at that age and with that personality that Brian and I are learning a ton about discipline that we didn't have to exercise with Liv. Its a constant reminder of how impatient I am. I have reverted to giving Gabs and I pep talks about being more patient. I sound out the word while she stares intently at my lips PA-TIEN-CE.

Funny things about Gabs:
--For a while she thought all books had braille in them because our boardbooks were sent from a group that supplied Liv's school with books. She would run her hands down the pages of all of those books. I think she became disappointed enough that she just stopped.

--She commits to whatever it is she wants to do 200%. If she is planning to play in the dog's water bowl, dangit, she does not care that you're yelling "no" and running at her. She WILL put her hands in that bowl.

--She dosen't play "with" other kids. But she will play with the dog. Go figure.

--When she wants to put something in her mouth and she knows she is not supposed to she shimmies her legs and turns her back to you to try and sneak a taste. Seriously?

Gabs, we adore you. You are so fun and so naughty and you definitely keep us on our toes. You are adorable--and you know it. We are so blessed and privileged to be your parents. Please, heed our spankins, never bring home a boyfriend, join a convent, and never call us from jail. ok?

Wednesday, September 5, 2012

The Empty Room Down the Hall

Due to the fact that she still isn't sleeping through the night, a couple of times a night Kelly and I go into Gabby's room to change her and most of the time feed her a bottle. While I sit holding my crabby, hungry little girl in the glider, I have a lot of time to think, pray, or sometimes fall asleep while I wait for her to polish of her bottle. Most nights I sit and stare across the hall into the newly empty bedroom...Olivia's room.

The bright security light outside the window illuminates everything in the room...

  • The chair that we bought a few months back so we could comfortable rock her or so the home health nurses had a comfortable place to sit as they sat night after night watching her so we could sleep. 
  • There is also Olivia's "big girl bed" which she got for Christmas, complete with cute bedding meticulously picked out and coordinated by my wife. 
  • There is a dresser purchased by Kelly because Olivia had to have a cute dresser to go in her little girls room. This dresser started a small tiff 3 years ago when we bought this house and were in the middle of renovations and I thought my wife had paid a but much on a First Friday shopping excursion...but what do I know, fashion over function right, Kel? 
  • There are letters made by her G-Ma and Aunt Mal that hang there to let you know just whose room it was...WAS what a sad word. 

Every night I walk past this room on the way to my bedroom after feeding Gabby, trying to imagine that Livi is in there...probably not sleeping and playing with her Christmas lights, with the night nurse watching her so we could sleep and with the familiar hum (that was more lawnmower-esque than a simple hum) of medical machinery in the background. Every night I realize once again that it is empty and that the little girl who once lived there isn't there.

I've learned that empty rooms and empty beds in and of themselves don't mean anything by themselves. I mean, I never lament the fact that our guest room is empty (In fact, if it wasn't empty, where would we put laundry when we don't want to put it away?).

Empty rooms only feel empty because someone once called them home. Empty rooms matter because of the people that give them meaning.

Empty rooms matter because there was once someone you loved who you would find playing in her bed in the middle of the night. Empty rooms matter because of the countless times I read "Goodnight Moon" before bed time, sang "Great is Thy Faithfulness" because it was the only song that would calm her down,  or simply prayed and cried while I waited for my little girl to fall asleep.

I'm sure that as long as we live in this house, I will stop by that room every time I pass by it and miss the little girl who - despite the brightness of the security light - lit up that room.

Some nights I smile when I remember her. Tonight I cried.

I hate grief and its cycles - they are unpredictable. But most of all, I hate grief because it means the room down the hall is empty.

Tuesday, August 28, 2012

1 month, "the video", and $67

Yesterday marked one month since Liv left us. I desperately want to say it was the shortest month and it just seems like yesterday, but it doesn't. Sadly, it seems very far away. One of my biggest fears, I tell Brian often, is I'm afraid I'm going to forget. Forget the small things about Liv, forget what it was like taking care of her, seeing her smile, what she smelled like, how she held her hands. Even now, I feel like they are fading from me. I am frantic to hold onto anything I can.

We have some amazingly talented and gracious friends who volunteered to take pictures of us in our home before Liv passed and again at the funeral service. Those pictures have been put into this beautiful video and given to us as a gift to remember our darling Liv. The song is beautiful. The voice over is Brian's sermon on suffering several weeks back. This video has been instrumental in my grief and in my joy in remembering Liv, how she held her hands, her beautiful eyes that say so much, who was at the funeral, the pain and the joy of that day, and most importantly the promises of God amongst all that.

Also, funny things crop up when someone dies. Most of Liv's stuff we've donated--therapy things and expensive equipment that others can use. I haven't touched her room yet, but have the rubbermaid bins all ready in the middle of the rug. You KNOW they're purple. While I haven't put things away, I was rummaging around in there the other day, thinking of things I wanted to put in Gabs' room. I found Liv's "my first piggy bank" and emptied the contents on the bed. $67. Thats Liv's money. I have thought for two weeks about the appropriate thing to do with this money. Donate it? Brian's suggestion was to "will it" to Gabby. I guess either way I didn't get around to getting her something I should have. 

Next post, I am saying with confidence, will solely be about Gabby. In my sad postings you have missed so much: stanky leg crawling, pulling up, and a tooth. What a maniac.

Thursday, August 23, 2012

kelly's stages of grief

I know its been a while. First we were out of town, then I was reorganizing the house, and then I was just avoiding you. There is both too much and too little to say about the last 4 weeks. Where do I begin?

Everyone knows the Kubler-Ross stages of grief:

1. denial
2. anger
3. bargaining
4. depression
5. acceptance

I know grief is not a linear thing. We have been grieving Liv's health for three plus years. I have learned a few things about grieving. Let me tell you my 4 stages of grieving her death over the past 4 weeks.

1. shock (which actually lasts through stages 2 and 3 and probably comes back again and again)
Shock is how you stand next to your child's casket during the visitation for two hours without losing your mind, how you decide you might get up in the morning-- like it may all be untrue, and how you seem literally surprised everytime you see their name next to a birthdate and a date of death. You did, in fact, go to the funeral and bury her, but its like going to your own wedding-- you remember almost none of it.

2. public crying.  Public crying is allowed to happen for two reasons: 1. you're beyond consolation, so you're going to cry all the time anyway 2. people let you cry in public because you just started doing it, and its still pretty with tears

3. private crying. This is the WORST stage. Private crying HAS to happen in private because its been a few weeks since the death and people are tired of you being sad. But mostly, it has to be done in private because its the "ugly crying". Your face contorts, there are no tears left, and you do this hiccuping/ gasping thing neither you nor other people appreciate. Yuck.

4. melancholy. I think this stage is partly due to, finally, the exit of adrenaline. The only way you can physically get through stages 1, 2, and 3 is adrenaline. Instead of exhibiting your grief by tears, which is exhausting, you just "feel sad" a lot and look tired. Seriously, I had to start wearing mascara again for the first time since January because I looked so horrible (and I wasn't really crying much anyway).

If you think I have dark humor you should read C.S. Lewis on grief.  He makes me look like Mother Goose.

Honestly, there has been a lot of crying, and just tiredness and sadness, a lot of avoiding you, both on the Internet and in person. There have also been some (and increasing) laughs about memories of Liv, and laughs at Gabby. When I need a gut check I read the blog I wrote about her last few days, or look over her memory book from the visitation/funeral (thanks jami), or watch a video our amazing photographer friends put together and we will be sharing some time (thanks parsons), or I just pack up in the car, drive 5 minutes down the road and sit on the ground next to where she is buried and we have a chat. Almost every time it results in ugly, private crying. But, at the end, I mostly feel resolved.

I think I thought the grieving part would be easier if I believed she was in heaven, that grieving just for me losing her (and not having to grieve her pain any more) would make the whole thing "tolerable". I tell you what, if you have to grieve for yourself AND the deceased, you might just whither away to nothing.

Most days now are fine. We are functioning. Brian is back at work. We are sleeping and eating fine. We are actually exercising for the first time in 3 years. We cry some. Some days we cry alot. We are so thankful for many things: your prayers and support, the many ways we have of remembering our time with Olivia, and the HUGE distraction that Gabs is--she is doing something new every day. If you want pictures of her recently you might check out Brian's instagram feed on "follow us". You were lucky to get words from me today!

Sunday, August 5, 2012

6 Years Later...An Anniversary Post

Six years ago today...this happened.

Since then...

We have moved to Kansas City.

We bought a dog.

We have lived at 4 different addresses in Kansas City.

We bought a house.

We have completed graduate school.

We have had two babies.

We have had two miscarriages.

We have lost one of our babies.

In the middle of all of that, we have fallen more in love than we ever thought possible. We have grown in grace toward one another. We have spent long nights talking, worrying, praying, and crying. We have grown in our commitment to God and to one another. 

Things started off a bit rough (I hear this happens to many people). But the truth of the gospel and its implications for our lives have not only kept us together, but it has filled our marriage with grace, forgiveness, repentance, and joy.

I am so thankful to have the woman who is the primary author of this blog as my wife. There is no one else that I would want to be married to. There is no one else I would rather have in the trenches with me.

I love you Kelly Key. Here's to many more years with you.

Saturday, August 4, 2012

Her last days with us

Thanks for allowing Brian and I time to stop and begin to process what the last week and a half has held for us. We are ready to tell you about Liv's last days with us.

Two weeks ago Liv began sleeping more. We expected it, but just one day it happened and she didn't ever gain her energy back. As far as we could tell she wasn't sick, but I think she was starting to feel it. That was a Sunday. That night Brian gave her a pep talk. The next day we were scheduled to finally go to the aquarium (with free tickets before it actually opened for the day--HUGE thanks to Annie). We thought if Liv wasn't up to it we wouldn't take her, though we had been looking forward to it for weeks. Brian told her she didn't feel better we wouldn't go. Monday morning came and she was as bright-eyed as could be. So we rounded up the troops and left for Crown Center.Our dear friend Rachelle came to document the trip. We are completely indebted to both her and Annie for making this incredible trip so memorable. It was one of the highlights of her last weeks at home.

Tuesday she continued to sleep more, but her awake hours at home were filled with play time and enjoying the porch.

Wednesday, after a visit from the Hospice nurse Liv woke up from her nap coughing. I thought maybe she just needed to cough up the after-sleep stuff, but she just kept coughing. That night, Brian and I knew this illness would be it for her, but we had no idea how long it would take. We prayed for it to go quickly--it did. Wednesday night she did ok, and thankfully we got some sleep while her nurse watched her carefully. Thursday morning she was struggling a little more to breathe and we called the Hospice nurse to come check on her. In just twelve hours of apparent illness, Olivia's lungs were mostly filled with fluid.

That morning Brian and I struggled with our decision to keep her home. We had turned off her feeding pump and her machine that tells us how well she is breathing-- it was just alarming all the time anyway. We tried keeping her at home, but the morphine regimen was stressful for us to maintain--every hour counting her respiratory rate and deciding if she then needed more medication. By the middle of the day Thursday we decided to take their open room at the Kansas City Hospice House. We are monumentally glad we did. After transporting her in the car to the house we were met with a child-decorated room and an incredibly helpful and kind staff. They began to give morphine via sub-Q (a small needle into her fatty tissue, since they do not do regular IVs there). Olivia calmed down very well with the medicine then and Brian and I focused on just being mom and dad instead of caregivers. That night we were allowed to sleep in her bed with her and we took advantage and took turns. The pictures below are the last pictures we have of Olivia, from Thursday evening.

In the middle of the night it seemed apparent that Olivia would be leaving us soon. The nurse gave her an extra dose of morphine about 2am and we stayed up for an hour to sing to her, read scriptures, and prepare ourselves for her departure. Brian slept in her bed from 3am to 5am when we woke up again to the nurse giving more morphine. Olivia's body was trying to fight so hard, and we let her know for the millionth time that it was ok to relax and let go. At 5:30am I laid in bed with Liv and fell asleep listening to her erratic breathing. Brian stayed awake for a while, eventually giving in to heavy eyelids a few minutes later. At 6:20am I was awakened, by apparently nothing in particular. I laid awake looking at the ceiling listening to---nothing. I rolled over and Liv was gone--sneaking out in the few minutes we were not keeping watch--probably the Lord's kindness to us. After waking Brian up we took Liv's oxygen off and just stared at her, both thanking the Lord her suffering was over and wondering what to do next.

The rest of that day was mostly a blur: showering, cemetery shopping, probably eating, lots of family...about 2pm the funeral home finally came to pick Liv up from the Hospice House. Brian chose to perform his last fatherly duty by picking her up out of bed and placing her body on the gurney to be taken away. He rolled her down the hall and into the chapel, where we had a brief family prayer led by one of our friends and pastor, Kris.

Since then, there are a million people to thank, tons of stories to tell, but very few pictures. On the list of people to thank is you. Thank you, for praying, for crying, for agonizing with us. For rejoicing, for thanking God, and for celebrating Liv's freedom. Her life was very short, but incredibly purposeful and amazing by any measure. Brian and I are beyond grateful and very honored to have been the parents to Olivia Grace Key while she was here on earth. She has changed us in profound ways. Perhaps on a selfish note, if there is any memory or treasured thought, or way Olivia has changed you, we would love to hear it and celebrate her life with you. Feel free to leave a comment, please.

Olivia's death is not the end of this blog. Though it was mostly about her, and started as a way to keep people informed of her medical progress, in honor of her we decided to keep it going, to be honest about where our family is and how we are doing with life, with grieving her death, with the incredible escapades of Gabby, her sister, who is 100% her own person but like her sister in so many ways. We hope you'll stick around.

Sunday, July 29, 2012

Finally at rest

After 36 hours of an illness Olivia passed away Friday morning at the Kansas City Hospice House. Brian and I will write more details later, but we wanted to at least share the service times.

Visitation is Monday evening from 5pm-7pm at Redeemer Fellowship at 3921 Baltimore in Kansas City. The funeral service is Tuesday morning at 11am also at Redeemer Fellowship. We would love for anyone who is able to and felt touched and changed by Olivia's life to attend.

Friday, July 20, 2012

Too busy liv'n life to blog

Wow. So sorry to leave you guys hanging after that last post for so long. Every day I think, "today I will totally blog" and then after eating dinner at 9:30pm I just want to hang out with my hubby and you get neglected. Sorry. Honestly, probably the best way to see what we're up to day to day now is to follow Brian on Instagram. You can go to the top of the blog to the "follow us" and once you click on that  you can click on "Instagram".

So, Liv has been home and doing well for 2 weeks now. We have been busy spending a lot of time with friends and family, snuggling, and doing things the girls love to do. I will surely post A LOT of pictures from the past few weeks sometime soon (wink wink) but I have to go through them all and there are tons of them.  Just to wet your appetite...

She has that look on her face because we made her sit in between her sister and her 5 month old cousin that day for pictures. It was not her favorite thing. Doesn't she look annoyed, but pretty? Gosh, looking at it, she also looks old.

Here is the deal on her medical status...she is healthy and not infected with anything right now, which is great. She also is dealing with having sicker and sicker lungs. Right now she is retaining more carbon dioxide in her lungs than usual. If we were following the path we were previously taking, she would be on bipap at home. But she is not. Brian and I have decided to admit her to the pediatric Hospice program here in Kansas City and to follow more of a comfort care path for her. Instead of more labs, needles, hospital visits, etc... we are dealing with any medical issue here at home with the help of our wonderful nightly nurses and the Hospice Carousel team. She is very happy to be with us all the time and we know we have made the right decision for everyone, especially Olivia. Right now the only difference in Olivia is that her sleeping patterns are erratic (thank you, hospital) and though we are trying to straighten that out, we're kind of just letting her do what she wants (thanks night nurses!) With that said, we know that at some point in probably the not too distant future Olivia will get sick again with the MRSA or something else. We will continue to treat her at home unless we cannot control some unforseen pain issue with an IV. The carbon dioxide build up in her lungs will eventually become a natural anesthetic and cause her to be sleepier more of the time and also keep any pain to a minimum. There will be no labs, no needles (again, unless we cannot control some pain issue), no scans, no tubes, no hospital. 

In the mean time, we are busy living life: riding on boats, going to preschool, swinging, park visits (VERY early in the morning--stupid heat), and lots of hanging with friends and family. We are having the time of our lives, and we can tell Olivia is too. Now, finally, fun comes first and meds and treatments come next.

Thanks for all of your support, love, and prayers. We appreciate it all so very much. Our community is so strong and active that people are coming over to help clean, bring meals, and help me balance both girls while Brian is at work. All of these things give Brian and I the sweetest gift ever: more time with our family. Thank you from the bottom of our hearts.

I will try to be more regular with the blogging thing. Lastly, I will brag on my husband. He preached at our church last Sunday on suffering (go figure) and killed it. Here is a link to the audio if you wanna give it a listen. Scroll down to the "sermon" section and he is on July 15.

Friday, June 29, 2012

ICU--the staph re-return

So last Friday (yes, a week ago) we had to bring Liv back to the hospital. At that point she was having some fevers, but mostly just having constipation. It was decided later that she had an infection in her bladder that was causing the fevers. Yep, you guessed it-- staph. After a day and a half on a regular floor and just trying to get her to clean out her intestines, Olivia started to having respiratory trouble. After a swab of her sputum from her trach, the test showed she had virtually "everything" growing. Now, I'm still not exactly sure what that means-- they haven't ever told us that before, but suffice it say that she was very sick.

I'm not exactly sure because the stress and lack of sleep had burred the days, but I think it was Sunday when Olivia was taken to ICU for respiratory trouble. One lung was really hazy on the x-ray. She was also having massive fevers and still stomach problems. Sunday and Monday were very concerning for Brian and I. Obviously because Olivia was so sick--they put her on bipap and she had to be on 100% oxygen, which is really bad. Also, because we have been struggling a lot with how to maintain Olivia's quality of life through illnesses. We decided a while back that we would not let her suffer like she did in the long admission (from January to April) being sedated for most of that time, and paralyzed and on the ventilator for a month. We were concerned (and still are some) that we would need to make decisions for Olivia to stop her curative care and concentrate on making her comfortable-- essentially taking her off supportive breathing machines. I think it was Monday or Tuesday they put her on the ventilator and some gas to help calm her pulmonary hypertension and she was needing less and less oxygen.

She has since stopped having fevers, has been taken off the gas for hypertension, and has had her oxygen turned down to 35% as of this morning. However, now both lungs are affected and she is
still on the ventilator. The trach makes this admission appear WAY different than the last one--she is on a small amount of sedation to help with anxiety and pain, but besides that is awake--she has no tube down her throat, it just connects to the trach. These changes make things more comfortable for Olivia, but also, I think, make the seriousness of her illness look deceiving. Even I felt that the ventilator was no big deal on the trach--it doesn't look scary at all, but that doesn't mean Olivia isn't still suffering.

It seems that Olivia is improving from earlier this week. Brian and I are concerned, though, that the staph will keep re-infecting her and she will continually be in the hospital, which is certainly not what Brian and I want for her, and I don't think what she wants for herself. If she doesn't let her lungs heal all the way between these admissions she will continue to get weaker and weaker.

We have never needed your prayers like we need them now. Please pray for Olivia, for total healing, for comfort, for strength. Brian and I are also desperate for your prayers. We need comfort as well, and wisdom and insight that only God can provide. We are so broken and want desperately to also make the right decision for Olivia, even if it is a difficult decision for us. We can make decisions to limit Olivia's care, but we need help knowing when and how and IF we need to do that.

Bet you hadn't bargained for this much honesty when you started this blog post. Sorry I didn't give you a heads up-- I hadn't planned on writing all that.

Wednesday, June 27, 2012

Happy Birthday to My Bride

I have an amazing wife.

That is really the understatement of the millennium.

Today is her birthday and I want all of you to know that words cannot truly express how thankful I am for her. The ways that she cares for our girls is incomparable to anything I have ever witnessed. She is mom, nurse, therapist, and advocate all wrapped up in one person.

You are all witnessing something special in my wife. I am a very blessed man to be able to have her in my life and my girls could not have a better model of what a wife and mother should be like.

So, with that said...Happy Birthday Kelly Suzanne Key. I love you more than words will allow me to express. I am thankful for you. I hope that in spite of the circumstances we find ourselves in currently that today is a special day for you.

Monday, June 18, 2012


Ok, so here's the thing. I try really hard to post really positive and upbeat things most of the time on the blog. Honestly, if I complain I am worried people will think we're not grateful--and we are. We so are. But sometimes I'm in the mood to throw a can of Pediasure or kick an oxygen tank. If I tell you about it, you won't think I'm ungrateful, will you?

I HATE that I have to walk up the stairs to check and see if Livi has woken up from her nap every 15 minutes or so. She hasn't learned to talk with the trach yet, and even if she had, I'm sure she could NEVER make a noise loud enough to be heard over those frigg'n machines running in her bedroom all the time. And, I HATE that I don't mostly walk all the way into her room to look at her and see if she is awake. I walk up just enough to see that stupid sat monitor and I can tell if she is awake or not depending on what the heartrate number reads.

I HATE that my dining room table perpetually looks like this

that the back of my living room looks like this

and that by sheer repetition, I have taught myself the varied times, amounts, and colors of these (I know this is the "hate" part, but on a good note, we have gotten rid of about four of these)...

I HATE that I either have to schedule play time around nebulizer and cough assist treatments or I have to trust that Gabby can play either in Liv's bed where I have to give the treatments or downstairs by herself for that 15-20 minutes. It has NEVER been done.

I HATE that there are bookcases for books, files for papers, pantries for food and toy rooms for toys, but that I still have not figured out a good "out of the way" place to put our monthly supply order of durable medical equipment (including, but not restricted to: tubing, sponges, wound care supplies, trachs, trach ties, trach kits, suction catheders, trach connectors, g-tubes, feeding bags, 4 palates of pediasure, hme's, med syringes---you get the picture), 8 oxygen tanks, meds, walkers, adaptive chairs, etc...

I HATE that it takes me at least 3 trips to get all of our "traveling" bags and the girls to the car.

I HATE turning on the suction machine in public because it scares kids and makes people stare even more.

I HATE that every time we go to the hospital at least one person asks me how long I've been in the medical field.

I HATE that Gabby has to know what all this crap is.

Most of all, I HATE that Livi has to go through this--the whole thing.

Luckily, even when I think about all the things that I hate doing, I remember one thing that I love so much that it makes it all worth it a thousand times over.

Saturday, June 16, 2012

Milestones for both girls

Gabs, you're up first.

You are now 6 months old. I have no idea how that happened. I remember your cranky little newborn self and rocking you at night thinking "I can't wait until she's just a little older". I feel so guilty about that now. You will probably grow up faster than you should, just because you always want to be doing something you're not quite supposed to be able to do yet. That makes me sad, but so excited because watching you grow up just this little bit has been incredibly entertaining.

You are sitting independently now. That was going well for about a week until you decided you wanted things out of your reach and are now lunging forward from sitting and landing smack on your face. Maybe someday you will learn not to do that, or perhaps you will just start crawling.

You LOVE eating. Your 12 lb. 9 oz. frame would not lead people to believe that, but you make 3rd percentile look good, girl. You caught on quickly and now "help" me feed you by grabbing the spoon and pulling it into your mouth. Your hand-eye coordination is not stellar, so you usually get a little messy.

Our post-eating exercises consist of giving you the spoon and the empty bowl to help calm you down from being done eating. You chew on the bowl a while and hang it over the side of the chair where Tugger is faithfully waiting for you to drop it for him. When the bowl is gone, you pick up the spoon and practice ramming it into your face--that usually gets dropped for Tugger too.

Gabs, you are SUPER inquisitive and have to know whats going on with everyone all the time. You are starting to be affectionate now and hugging and "kissing" those who are close to you, which usually ends in slobber bath.

For weeks now there are two sure-fire things that will calm you down when you get upset. 1.going outside (there is just SO much to look at) and 2. "practicing" walking. And no, I don't let her walk down the steps. Now when you want to choose a toy or something to do, I hold you by your fingers and you walk there. At first the steps were small and really silly-looking. Now, though, they look like real kid steps, and you're scaring the crap out of me with them.

You drive us absolutely crazy and create tons of fun-- probably how it should be.

Now, Liv. She is finally out of the hospital again (Monday) and is doing great. She started back to summer preschool Thursday for "splash day" and LOVED it!

All the kids wore their swimsuits and played in the kiddie pools and sprinklers. This new trach momma was apprehensive to let you even near the sprinkler, but the staff there is so great and got her just close enough for her to get her feet and legs wet. She loved it! She even had therapy outside and played with toys in a shallow tub of water. She had the best time, but of course was too cool to smile when mom was around with the camera.

Its nice to be back at school and some of her friends from the fall are there on the same days, so she was LOVING the attention and fun.

Things are back to "normal" crazy now, and even though I am exhausted by 3 in the afternoon, I wouldn't trade it for anything. The girls and I have such fun!

Tuesday, June 5, 2012

Psalm 107

Hey this is Brian.

I know it has been a while since I promised I was going to write more. Forgive me. My lovely wife and adorable girls keep me pretty busy. Anyway, I just wanted to share something that I read this morning that rocked me.

Psalm 107:1-2
Oh give thanks to the Lord, for he is good, for his steadfast love endures forever! Let the redeemed of the Lord say so, whom he has redeemed from trouble...

I (we) spend a lot of time grumbling. Why are things the way that they are? Why don't we have this or that? Veiled behind those seemingly innocuous questions is a much bigger question...

Hey God, don't you love me? (Veiled commentary behind this question: If you did, things would be way different than they are.)

This psalm threw me back on my heels this morning. It is a call for those who know the deliverance of the Lord and his unceasing covenant faithfulness to his people to respond in...wait for it...thanksgiving. We aren't very good at thanking God for the things that he does for us, but we are good at blaming him, or at least questioning his active goodness on our behalf. How about you? Are you struggling here too?

The psalmist is really good at jogging our minds for worship. After he calls the "redeemed of the Lord to say so," he tells four tales of the struggles of God's people. At the end of each tale, the refrain is...

Then they cried to the Lord in their trouble, and he delivered them from their distress...Let them thank the Lord for his steadfast love, for his wondrous works to the children of man!

Between the mention of the people's cries and the call to thankfulness, the writer tells of God's deliverance of them - how he displayed his steadfast love that endures forever (see vv. 7, 14, 20, 29-30). For our story, there are countless reasons to be thankful. Many times we have cried out. Many times God has answered. However, I am not sure that the posture of our heart is always as thankful as it should be. The truth is, we have much to be thankful for and I am praying that God gives us the grace to reflect, rejoice and "say so" today.

What about you? What is your story between the cry and thanksgiving? Where can you be thankful today? Where are you still waiting for that deliverance? If you are still waiting, can you still give thanks to the Lord for his goodness or are you struggling to do so? The good news is that even when we struggle to see him, believe him, trust him, he remains faithful to his people - he doesn't waver or change. His steadfast love endures forever! Let the redeemed of the Lord say so!

Friday, June 1, 2012

Where we've been

So, I realize its been a month. I am horrified at my unintentional and unannounced hiatus. Lets cut through the crap and we'll just tell you whats going on...

The first three of the last four weeks have been a blur of medication, bottles, lots and lots of diapers and tons of fun. I was wiped everyday from hanging with my ladies. Here are some pics...

Oh, sisterhood. Doesn't Gabby look like she is just trying to do whatever Olivia is doing?

We've had A LOT of trips to the park. That and Target are the only place both girls will be quiet and entertained--like mother like daughters.

I got some plants from a friend for a very early birthday present. Liv and I had a fun and interesting time potting these during Gabs' nap. Livi's "helping" ended in several leaf tragedies.

I know you're waiting for it...a week ago we had to take Liv back to the hospital for trouble breathing. Turns out it was more bacteria from the trach, but this time she had pneumonia. The first few days things were very close to getting back to ICU, but God answered our prayers and spared Liv this time. She is still in the hospital, but honestly looks great. She is breathing well now, but of course her tummy is taking some time re-adjusting to food from IV fluids, so probably a few more days.

Gabby is not the most low-key hospital visitor, but she is doing fine. Allowing me to get an hour or so in with Liv about every morning at least. 

Looks like she feels fine, huh?

Friday, May 4, 2012

New Adventures in Motherhood

For a lot of reasons I feel like a brand new mom. I guess because Livi is so different and has many more scheduled needs (medications, treatments) than she did before January. Gabby, God bless her, poses all new issues for me than I ever had with Olivia. Issues like, when do you start feeding food? What do I do if she wants to stand up ALL THE TIME? Why isn't she napping well? Seriously, with all the drooling? Well, ok, to be fair we had that last issue with Olivia, but for different reasons.

The last few days have been an absolute God-send. Obviously because our entire family is home and well--finally. Also, because in His graciousness, the Lord is both showing me that I cannot handle both girls well without His help, and that "handling" them is the wrong idea. When my girls grow up I don't want them to remember me stressing out and never having fun. Granted, when I decide to take them both out of the house together by myself, it literally might take half the day, but I don't want to hunker down and only stare at each other in the house because its easier. There is a definite routine that both girls need, especially Olivia. Lets be honest, she needs her medication and breathing treatments on time, otherwise I'm not taking care of her. But if we're playing at 1:30 when she needs her cough assist, unless she is having breathing trouble, I don't have to freak out at 2 because we haven't done it yet. Doing it alone, I would have freaked out the last couple of days ALL day because I have them by myself-- and they are, in fact, a definite handful. Yet, I have laughed more in the last couple days than I have in a long time. The Lord is giving me joy for Him and for my family and trying to teach me to be a little more laid back. So, here are some pics from the last few days...

This one is kind of blurry. Probably because I'm laughing, but changing two diapers at the same time is interesting. Livi is whacking Gabby in the face and Gabby is trying to grab Livi's arm so she can teeth on it--and she did.

 Thank you, Gma for saving my life. Gabby LOVES to stand up and walk. Yes, walk. As in she is not 5 months and if you hold her by the hands she will stand and take alternating steps across the room. This is the only way I can occupy her without walking--so bless you, Gma for buying the exersaucer.

 This is the first "finished" picture of the ramp. We still haven't put the railings on yet, but isn't it beautiful? Thanks also to my friend Elizabeth for going along with my crazy idea to bring both girls outside. It took longer than it should have. This is the first picture of Livi on her porch.

Livi on the porch. She LOVES looking at the trees when the wind blows. Yay for fresh air!

Thursday, May 3, 2012

she's home!

At the risk of it being another few days before can actually put together a legitimate blogpost--
Livi came home on Tuesday night. everyone is doing well, just totally tired from our new schedule.                        

Monday, April 30, 2012

Peekaboo, I see you

So, it turns out that this second admission to the hospital is from bacteria from having a trach-- something they told us would happen, I guess I just didn't expect it so soon. Honestly, she probably got this bacteria before she left the hospital a week ago, but who ever knows. So, Livi is doing wonderfully-- though she needs suctioned quite a bit now. She was coughing up nasty looking stuff over the weekend, but with the help of some heavy duty antibiotics is feeling pretty much herself. Know how I know?

 This is her pretty face. I like to think she isn't trying to actually "make" a face here.

 This is generally what we refer to as her "pirate face" because it usually come with one eye closed. Whatever it is, its sassy. Sorry Brian. You kind of look ridiculous in this one too--innocent bystander.

 We can't always be sure, but this is usually what her silly smile looks like. She gave all the cute smiles out before I got the camera out. She's not angry--I promise. Didn't anyone see that episode of Friends? She's just like Chandler--when she tries to smile it just comes out wrong.

This one is new. I actually don't know what this is exactly except maybe surprised?

Sorry, honey. I know I just slathered the internet with naked pictures of you looking ridiculous, and you're 3 now and probably too old for that. I just couldn't help it. So, Livi's facial affect is generally less than other kids. I don't know if its part of her brain that the seizures get a hold of or what, but mostly Brian and I see a lot more of her silliness than you probably will in public. So, here is a myriad of examples of the silliness from about a total of 10 minutes time. Needless to say, Brian and I had a FABULOUS visit.

Also, we expect her home either today or tomorrow. And we may be providing you with pictures of her coming in the house differently this time-- you know "rampish".