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Wide White: March 2011

Wednesday, March 30, 2011

Rules for bloggers

I've been blogging for over 5 years now. The first blog I ever read was political and I was working in politics at the time, so when I started blogging it was all politics all the time.

I soon left the world of politics with a bad taste in my mouth. For the next few years, I blogged a few times a month, but with no consistency, and the subject matter varied widely, from a video I made for my brother's wedding to an in-depth analysis of the actions of a Northern Minnesota county attorney. I debated giving it up a few times, but whenever I voiced that to anyone I was encouraged to keep going.

I've made a lot of mistakes along the way and thought it might be worth sharing a few rules I now try to follow since I decided last October to blog more regularly again. These are listed in no particular order (actually, the 5th is probably the most important).
  1. Write like nobody's reading. This rule will cause most of you to ignore the rest of the rules. I guess that's okay. I ended my very first post with, "Let me hear your thoughts." No one ever commented on that post. I kept going anyway. When I became disengaged from politics, I quit blogging about it, moved to Minnesota and lost 75% of my readers as a result. While the direction of my blog underwent a major shift, the readers who stuck around have said they like it better now. And for those who care about the numbers, I now have more readers than when I was expressly political anyway.
  2. Be kind. This doesn't mean you can't be passionate or denounce what you believe is wrong or enter into the fray of politics and religion. But write as though you're talking to a friend who disagrees with you on the subject. When you write about the politician or religious leader or neighbor or family member you dislike, write as if they're sitting next to you reading it. I've broken this rule before and it's not good.
  3. Be consistent. You should set a course that maintains a fairly consistent pattern of frequency content. If your blog is political, stick to that. If it's photos, stay consistent. If it's random (like mine has become), at least make sense out of it. Jumping from a post on your favorite TV show's latest episode to a gardening tutorial to a scathing critique of your mayor may leave your readers a bit bewildered. Your readers are coming back because they like the content you've been posting. Changes will confuse them and cause them to abandon you. If you're going to change course (as I did in November 2006), at least communicate that to your audience.
  4. Set expectations for your readers. Each blog post's title should help the reader decide if it's relevant to them. This is a tough balance to find, but reading your blog is one of many things people can spend their time doing. If your titles don't adequately reflect the content, it's tough for them to decide what's worth reading for them and what isn't, and they'll shut you out completely. Also, your blog's description or "About" section should be informative. My blog's subtitle description has evolved over the years. It began with "Unfair. Unbalanced. Uncommon Sense." It was a corny play on a well-known political news slogan, which set the tone for the content of the blog. When I abandoned an exclusively political tone I switched to "Thinking out loud since 2/11/2006." The current subtitle of "Daily brain dumps" is similar but includes an expectation of frequency. (I'm not a big fan of my current subtitle and will probably just use an "About" page for this info when I switch to WordPress.)
  5. Respect your readers' time (and yours!). I like the way Jon Acuff put it:
    We'll say, "Well, they're just reading my blog or my Twitter feed, why should I worry about the quality or why should I be consistent with it?" The reality is it's free from a money point of view, but you're charging them the most expensive thing they possess: their time. ... So when you create whatever it is you create, create it understanding that this is going to be expensive for them. They're going to give me 30 seconds or 30 minutes that they'll never have back again.
    My goal is to post once a day at 6:45 AM. I came to that frequency and time based on what I thought my readers expected and what I could keep up with, but that frequency is different for every person based on their content and time commitments. If I happen to write a few posts in a day, I just schedule them to go out in the future. I don't want to bombard people with a lot of posts at one time, especially if they're longer posts. But if I don't have something worth writing, I'll let a day pass without a post. Yesterday I didn't post until 2:00 PM because I couldn't think of anything worth writing the night before, so I didn't write anything. It's not worth your time to publish something that doesn't matter or doesn't really interest you and it's not worth wasting your readers' time just to say you met your quota.
There are other rules but they are less significant to me. These are my 5 primary guiding principles.

What about you? Did I leave anything off this list? Do you disagree with any of the points here?


Tuesday, March 29, 2011

"Moving on"

Jamie sent me this quote that she saw on Facebook today and it really resonated with both of us:
"It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."
~ Rose F. Kennedy
Yesterday was our first day in over a month with no tears. For some that probably seems too soon. Others may wonder that it took so long. There is no formula for grief.

I had a dream Friday night - well, Saturday morning to be exact - that Kaylee Hope was born, but the circumstances were much different. Details of the dream are a bit foggy. She had some issues with the skin behind her neck and head. I think she had some issues with her internal organs. The issues weren't the same as what she actually had, but they were similar enough.

What's not foggy is that she was alive. She was breathing. She was going to be okay. I was able to hold her and watch her BREATHE!!

Every night when we go to bed we check on our kids. I always check to make sure they're breathing. There isn't a night that I don't feel a sense of relief when I see them stir or hear them breathing loudly through a stuffed nose or feel their gentle breathing as I touch my hand to their back, chest, or face.

Flowers that have been sent for Kaylee are dying or have died. Her name on one of my wristbands is fading, so I had to take it off. Meals aren't coming every day anymore. As we take each step, we leave a part of the grieving process behind us.

But we still have a whole lifetime ahead of us. Moving on is not forgetting. Moving on is just what we do every day. When people say, "Move on," they're simply saying, "Make forward progress."

So we move forward, with each day bringing fewer tears. But the memories linger. The joy of her life and the pain of her death remain. And as we move on, we will always carry her with us.

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Monday, March 28, 2011

What the internet has done for me lately

Last week I noted that we had a $600 travel voucher from a friend that expired yesterday. I asked for suggestions from all of you for where we should go and here's what I got:

(If it's in italics and underlined, we've been there together; if it's just underlined, we've each been there separately; if it's in bold, I've been there but Jamie hasn't.)

Savannah, GA (4x)
New York, NY (3x)
Washington, DC (3x)
Hilton Head, SC (2x)
Charleston, SC (2x)
Orlando, FL (2x)
California (2x)
Florida (2x)
Charlotte, NC
Roswell, NM
Yakima, WA
St. Louis, MO
Cheyenne, WY
Hot Springs, AR
Napa, CA
Chattanooga, TN
Whidbey Island, WA
Boston, MA
Maui, HI
Rhinelander, WI
New Orleans, LA
Bar Harbor, ME
Grand Canyon, AZ
Newport, RI
Grand Cayman
Aspen, CO

This is a great list and it was great to see which destinations were most popular. We even got an invitation to stay with some friends of my brother's in Savannah!

We ended up surprising ourselves and going with a destination that wasn't on anyone's list (unless you include the generic "California"): San Diego.

We've each been there but not together. Flights and hotels are reasonable and it's warm, which was a KEY factor.

My mom offered to watch our kids for us so we booked the trip for April and then got a hotel room through Priceline.

A few minutes after I booked the trip I realized we had tickets to The Civil Wars in Minneapolis on the first day of the trip. They're in town the day before as well so we could still see them but I needed to sell the tickets I'd purchased already.

I posted an ad on Craigslist at 7:52 PM last night. At 8:28 the tickets were sold. It took all of 36 minutes on a Sunday night to sell my tickets.

To recap, in the last 4 days the internet has delivered:
  • An email with a travel voucher
  • 27 ideas for where to use that travel voucher
  • A hotel
  • A buyer for our unusable concert tickets
  • New concert tickets on a day we could go
  • Daily updates from Wide White
(Okay, so the last one was lame.)

What has the internet done for you lately?

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Sunday, March 27, 2011

Protecting the TV

Thankfully we don't have a TV on our main level, but if we did I'm pretty sure it would look like this.

Oh, and it's scary to me how closely these kids resemble mine. If I didn't know any better I'd think they were mine.



Saturday, March 26, 2011

What you shouldn't do in class

At least his team seems to be winning.


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Friday, March 25, 2011

4 + 1 + 2 + 10 = 17

4 = Jamie, me, our kids; a normal night at home.
1 = Jamie's sister, Jessica, who's living with us for a few months.
2 = My brother Chet and his wife Priscilla, who called at 4:30 yesterday to say they were coming through town last night and needed a place to crash around 12:30 AM.
10 = The number of Michigan Tech University football players and other athletes with my brother who also needed a place to crash.

17 = The number of people who slept in my house last night.

I hope they all stayed warm (most of them forgot blankets or pillows).

And good luck to the Michigan Tech Huskies women's basketball team as they try to pull off a national championship win tonight in St. Joseph, MO! If nothing else, I know there are at least 11 Tech athletes who are happy to be skipping practice thanks to the big game.

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Thursday, March 24, 2011

If you could go one place...

A friend offered us a $600 airfare voucher through US Airways last night. We're still working out the details but we'd like to use it.

Problem: where to go? (Oh, and we have to decide by March 27th.)

So I appeal to you, my readers. If you could go anywhere for a week or even a weekend, where would it be? (Keep in mind that we still have to pay for 1 ticket and any potential hotel or rental car expenses.)

Thanks for your suggestions!


Wednesday, March 23, 2011

12 hours

I don't remember the last time I slept 12 hours, but I did last night. I crashed on the couch around 6:30 and woke up at 7 this morning.

I knew a crash was coming at some point. I've been a lot more tired than usual lately. I guess my brain is working overtime somewhere.

In any event, thanks to my wife for her graciousness in letting me sleep!

When's the last time you slept 12 hours?

(On an unrelated note, happy birthday to my Grandma J! She would be 72 today. I wish she were here so she could have met my wife and kids. I love you Grandma!)

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Tuesday, March 22, 2011

NCAA bracket strategy

I used to spend a lot of time filling out my NCAA men's basketball tournament bracket each year. I'd pick teams based on who was injured, who was riding a hot streak, etc.

This year I was too busy planning a memorial service to undergo my usual preparation. At around 2:00 AM on Thursday, just before the deadline to submit my brackets, I hastily filled out a bracket and entered it into 4 groups.

After round 1 I was in pretty good shape. I tweeted,
At 26/32 I'm in 1st place in all 4 brackets. With 4 Sweet 16 picks out though, I think that's coming crashing down tomorrow.
Sure enough, in round 2, 4 more of my Sweet Sixteen teams came crashing down. But with the craziness of the brackets this year, I'm in the same boat as a lot of people.

After 2 rounds, I'm currently ranked 3/6, 4/8, 2/12, and 19/120. I'm in a worse position than I was after the 1st round but am still in pretty good shape. Even with half of my Sweet 16 out, 7 of my Elite 8 are still going and my entire Final Four is intact. I have the highest possible score in all 4 bracket challenges.

What's my point? I didn't study, that's my point, and you really don't need to either. I just picked. And if you think I'm only doing well because of my institutional basketball knowledge, consider that my wife is currently tied with me (I have 2 more correct picks than her, but she did better in the 2nd round). While I have 8 of 16 Sweet 16 teams left, she still has 10 in it, along with 6 of the her Elite 8 picks and her entire Final Four. She has a really good chance of beating me. Two years ago, she won her entire company's office pool with over 200 people. Her strategy normally involves team colors and mascots for closely-ranked games. This year she didn't even employ that strategy. She just guessed, kind of like I did.

What makes all of this even better is an ESPN article on bracket picks that shows President Obama beating a number of sports personalities' brackets. Both Jamie and I are near the top of that list too, beating many people whose full-time profession is college basketball, like Dick Vitale and Tony Kornheiser.

I think my wing-it philosophy is going to carry over into future years. You can do all of the research in the world and you'll never be able to predict all of the upsets. All you can do is cross your fingers and hope your wife doesn't beat you for the 3rd straight year... (She almost beat me in her 1st try 3 years ago - it was a virtual tie - and beat me outright 2 years ago and last year.)


Monday, March 21, 2011

Moments of raw emotion

I'm not generally a very emotional person. A tear wells up every once in a while - maybe weekly? - at something simple like a sad story, but that's typically about it.

I haven't been very emotional about Kaylee Hope's death lately. It's made me wonder if I didn't love her enough, if she didn't mean enough to me, if our loss really wasn't that big of a deal. I actually questioned on a few occasions whether we should be doing a memorial service.

A friend says these are "little lies" that are a part of grief. Thankfully I had a few moments Saturday in which I was reminded that those thoughts really are just lies. Here are 3 of those moments:
  1. Shortly before Kaylee Hope's memorial service I was setting up a laptop in the back to run a video I had made for her. I was alone and took a moment to scan the sanctuary. I saw a few people taking photos of the table in the front that had some photos of her, a family photo of all 5 of us, a blanket of hers and some other things. I slowly started to lose it. It hit me in that moment: these people are here for my daughter. THIS IS SO WRONG!! This isn't how this is "supposed" to work. You're supposed to see pictures of someone with gray hair in the front, not a little hand the size of my fingernail forming the sign for "I love you." The eulogy is supposed to be given by a high school friend; the family member speaking on behalf of the family of the deceased should be a child. The father of the deceased should be deceased. I think that was the first time that the significance of the service really sunk in.
  2. I spoke at the service. I simply read letters Jamie and I had written to her over the last few months, some from before we learned of her diagnosis and some after. I was nervous about it ahead of time. I thought the letters might get boring or that that I'd be void of emotion as I read them. Whether or not the letters were boring, I certainly wasn't unemotional. I was reminded very quickly of how much that little girl means to me.
  3. When we got home at around 1:00 AM that night we found a package that was sent to us anonymously. It was a framed piece that had a purple flower, our daughter's name, and the meaning of her name and its origin. It was so simple, yet so meaningful to me. Oddly, I think the inclusion of the simple word "slender" is what hit me the most. I just stared at it as I sat in my car by the mailbox, considering the thoughtfulness of the gift and wishing so badly I knew who to thank for it.
Those were a few of my moments that day. They aren't all of them. There's no way to capture them all. And a post on raw emotions from my wife would look very different, as would a post from any other father who's not able to hold his child.

People ask a lot these days how I'm doing. Most days, things seem normal. I don't feel an ever-present sense of grief.

But there are moments with tears. The most seemingly random, everyday things make me think of my baby girl. And there are other reminders that life is not really quite "back to normal" yet. I've been getting tired in the middle of the day, regardless of how much sleep I had the night before or how well the day seems to be going. I wake up in the middle of the night for no apparent reason. And of course, we still have supporters bringing us meals, praying for us, and helping us in other ways. It's not that things are automatically back to normal when these people stop coming or when I'm sleeping through the night again, but these things serve as reminders that "normalcy" has not yet returned.

The only thing predictable about emotions in grief is that they will come. What's not predictable is when, how often, or for how long.

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Sunday, March 20, 2011

Aaron Rodgers photobomb

Apparently Aaron Rodgers likes to sneak into pictures of his team's captains. You can find 3 years of pictures like this here.


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Saturday, March 19, 2011

Remembering Kaylee Hope

I scheduled this post to be published at 1:00, when Kaylee Hope's memorial service starts. I made a video to remember her life and thought I'd share it with you here.

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Friday, March 18, 2011

A service for all the other services and parties

Jamie got an email yesterday from someone we've never met but who's walked this road before. She said,
I'm praying that saturday goes well. I know the feeling of pressure... of having only that ONE thing to plan! trying to pack every birthday, recital, graduation, wedding into one event.
That last sentence struck me. Jamie has said that numerous times. She was stressing out about the service and then said a couple of days ago that she realized why: "This is my only shot. This is the only chance I get to have a party for her. This is her birthday party and graduation party and every other celebration thrown into one. I want it to be perfect!"

The reality is tomorrow won't be perfect. Death is so evil and imperfect. While we celebrate Kaylee Hope's life, it's in remembrance and reflection of her death. Her life cannot be celebrated without acknowledgment of her death, and that is so painful, so wrong. This is nothing like a birthday party or a Christmas dinner. And yet we want so badly for it to be those things.

But we must celebrate her life. I was talking to my new friend Mark yesterday. Mark lost his son at 35 weeks a few months ago. Regarding the question of whether it makes sense to hold a service for a stillborn child, he asked, "Would you hold a service for your 95-year-old grandmother?" He let the question hang. I nodded, "Of course." The pregnant pause persisted and I understood what he was saying. If a 95-year-old life is to be celebrated and honored and remembered, why not a 22-week-old life?

For those considering coming to Kaylee Hope's service tomorrow, I want to reiterate 2 things.
  1. No matter how well you know us, please know that if you want to be there you are welcome to join us. If Kaylee Hope has impacted you and you'd like to be at her service, we want you to be there.
  2. If children are an obstacle to you coming, please don't hesitate to bring them! We're remembering the life of a child. Who better to take part in that than other children? Besides, our 13-month-old twins will be there along with my 5-year-old brother, so your kids will probably have some good, noisy company.
I have a strange uneasiness about tomorrow. I fear the thought of forgetting about my daughter after this is all said and done. I also fear the potential for more grief next week as we start to move on, as the cards stop showing up in our mailbox and people move on with their lives. I wonder if we'll feel left behind, screaming for someone to care as the rest of the world moves on. I wonder these things because I've seen grief take on these forms in others. I can't help but wonder what form it will take in my wife and me.

For now, I just hope for peace and joy as we celebrate Kaylee Hope's life tomorrow.


Thursday, March 17, 2011

A new kind of bracketology for 2011

I'm a huge fan of March Madness. It was always my family's favorite sports event of the year growing up. That first Thursday and Friday of the tournament were the only days of the year where we were parked ourselves in front of the television all day. Everyone filled out brackets, including my mom. I was usually the bracket master, keeping up-to-the-minute tabs on who was leading, who was losing and by how much. And every year, 90% of us picked the North Carolina Tar Heels to win it all. Anyone who picked Duke to even make the Final Four was scorned.

My wife has adopted this White tradition and has actually beaten my bracket 2 years in a row. In fact, 2 years ago she won her company-wide office pool with over 200 entries. She was decked out in Tar Heels apparel for that championship game and cheered every basket along the way as the Tar Heels gave her the victory..

This year I almost forgot about March Madness. We scheduled my daughter's memorial service for day 3 of the tourney and have been preparing for it ever since.

But ESPN, Yahoo! Sports, and CBS all have me on their radar. Their email reminders started coming in, telling me that duty called. 5 tourney invites later, I started to get the message.

So last night, after folding the laptop up and rolling over for some sleep sometime after 2:00, I decided I needed to get back out of bed and forge ahead with a bracket. I can't remember ever not filling one out.

So this year I tried a new strategy. It took more like 10 minutes than the usual 2 hours but involved no sweating out 8-9 match-ups, no Googling to see what the experts think. If my wife can beat me using common sense along with mascots and team colors, I clearly need to adopt a new, less basketball-oriented strategy.

As usual I'll try to check back here over the next few weeks with bracket updates. I have Duke, North Carolina, Kansas, and Florida in my Final Four. In reality I can't imagine a Big East team not making it there but hey, those are my picks and I'm not second-guessing them now!

Good luck to all of you filling out your own brackets! And to any of you basketball fans missing out on tourney action this Saturday to be at our service, thanks!


Wednesday, March 16, 2011

The little things

It's the little things that get me lately, that bring memories and thoughts of Kaylee Hope flooding back.

Keira isn't generally very cuddly, but the other morning she saw Kaylee Hope's stuffed lamb - a gift from a friend at the hospital that has come to sort of represent Kaylee Hope in our house - and she grabbed it and snuggled it up to her. Then she kissed it on the nose and cheeks, then snuggled with it again. We were moved to tears as we thought of how that should really be her sister she's holding, not just a stuffed animal!

Yesterday I read a line in a blog post that I've seen numerous times before: "Enter the daughter. Extra X chromosome musta been working." I'd never thought twice about the "extra X chromosome" joke. But it leaped from the screen, reminding me of that X chromosome that my daughter was missing, the missing chromosome that ultimately took her life.

A coworker was wearing purple yesterday. So are at least 5-10 other people I see every day. I always wonder if it's for Kaylee Hope. I wonder when I won't wonder that.

These are small things. These are trivial things. But these are the things that remind us of the daughter we no longer have.

Memories are necessary. They remind us that she lived, that she was with us. But they bring us to tears. As they remind us of what we had, they remind us of what's gone.

I love the little things.

I hate the little things.

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Tuesday, March 15, 2011

Pray for Japan

I've seen the tweets and clicked through to an occasional story on the earthquake and tsunami devastation in Japan. I've taken part in a bit of discussion on the nuclear reactors and whether nuclear power is safe or not. But I didn't really understand just what the destruction was like until I watched this video that Bill shared with me.

I normally reserve videos on this blog for Saturdays, but I wanted to share this as soon as possible. If you have the time, please watch it in its entirety. If not, at least watch the last few minutes. You can see people running away from the coming water or hovered on the tops of buildings, hoping the buildings don't collapse.

For more spectacular, devastating on-the-ground footage, click here.

Life is not easy for us right now and while this doesn't minimize the loss of Kaylee Hope, it does help put things in perspective. We aren't the only ones hurting right now. As you pray for us, please pray for Japan.


Monday, March 14, 2011

Generosity we never wanted (but couldn't live without)

On more than one occasion over the last few days after receiving a card or a gift, Jamie has looked at me with tears running down her face and said, "I never wanted this." I mumble back something like, "Never wanted what?" The gift? These circumstances? The card? And she responds simply, "I just want to hold my baby girl."

We've been overwhelmed by the generosity of others. But the visits, the gifts, the meals, and the babysitting serve as constant reminders of the little girl we're missing so badly. We never wanted this attention. We'd much rather just be that friendly family you see at church or the nice guy at work or the people you catch up with in their annual Christmas letter.

But the last few weeks have thrown us from that quiet, simple life. We've gone from elation at the prospect of meeting our baby on the ultrasound screen to planning a memorial service in less than 3 weeks.

Yet as much as those gifts serve as painful reminders of where we're at and the loss that brought us here, they also serve to lift up our spirits. They tell us Kaylee Hope mattered, that someone else loved her and wants her family to know that.

People have reached out in so many different ways. I'll tell you about a few of them.

I've said before that it's been difficult to tell people how they can help. We aren't sure what we need or how to ask for those needs to be filled. So, a friend who lost her own baby at 28 weeks gestation setup a care calendar for us and scheduled meals, babysitting, and date nights for the next few weeks and months. She knows what's needed in a time like this better than we do and is doing the asking for us.

And that's just one example of someone simply stepping up to fill a void we hardly knew existed.

One card read,
None of us understand what your family is going through right now. But, in the most trivial of ways, we all know what it feels like to not want to make dinner...or to have forgotten your lunch because your mind was somewhere else...or to have cried yourself to sleep last night and JUST NEED a cup of coffee. We hope this gift takes some of the pressure off at home while you're adjusting to your "new normal."

Our prayers are for you and your family."
Inside the card were 8 gift cards ranging from $10 to $30 each to various restaurants, coffee shops, etc. This came from a Bible study made up mostly of women Jamie knows from the church she grew up in but doesn't see very often any more.

After mentioning wanting a purple bracelet (I was thinking of simple string tied around my wrist since Jamie had purchased some purple string), we each received a silicone wristband that says "Kaylee Hope," a silicone wristband that says "Miss Beautiful - Kaylee Hope," and a bracelet with "Kaylee Hope" engraved in them. In addition to those gifts from 3 different people, we received additional offers to purchase silicone wristbands, but we thought the 200 that Jamie's cousin purchased would probably be enough.

Saturday night found us at a Mark Schultz concert thanks to friends who went to Praise FM and got us tickets and backstage passes to meet the artists before the show. While backstage we were approached by one of Praise FM's announcers (PK), who asked if we were Joey and Jamie. She told us she'd read my blog and had been praying for us.

Backstage with Mark Schultz

Jamie was going through names of people who had signed up to help us through the care calendar last night. Neither of us recognized one of the names. In the section where this person had entered their relationship to us they simply wrote, "friend of a friend."

These are just a few examples of how we've been blown away by the generosity, support, and goodness of others. I know I'm leaving out others that deserve mentioning. Hopefully I'll be able to thank each of these people adequately. But what's been so humbling is how time and again when we thank people, their response is, "No, thank you. It's an honor."

I don't think these people are saying that it's simply an honor to help us. I think they're saying that it's an honor to help love and honor Kaylee Hope. It's the kind of honor that's reserved for those who have passed away.

We want nothing more than to revert back to life with all 3 of our children. But so many of you are showing us that even in Kaylee Hope's death, her life can and must be honored. You're teaching us so much about the value of generosity, of how important it is to love those who are hurting, and of how meaningful and critical it is to help those left behind when a family member passes.

At the risk of repeating myself...

Thank you.


Sunday, March 13, 2011

CareCalendar - for those who want to help

We've had many offers for help and needed a way to coordinate those offers.

Thankfully, one of those offers came in the form of a care coordinator. Actually, a few people have offered to coordinate assistance and one actually setup a CareCalendar for us (thank you Jennifer!).

So for those looking to provide a meal, babysit, clean our house, or help us out in other ways that may come up over the next few weeks, you can check out the CareCalendar here:
The HELPER logon is used by family and friends
that would like to sign-up to help a loved one.

To access Kaylee Hope's personal CareCalendar site,
visit and enter
the following information in the appropriate spaces:

From what I understand, you can sign up to help and anytime we add a new need, you can sign up to fill it if you want to and you're able to.

Thank you Jennifer for setting this up and thank you to all who have helped us so far and have offered to help.

I could fill up a couple of blog posts detailing all of the ways people have reached out to us so far. We've been constantly blown away by the outpouring of support for our little family. "Thank you" is not enough.


Highway perspective

This must be on Charlie Sheen's car.



Saturday, March 12, 2011

The hardest week of my life

I haven't posted much about the events of this week. It's been the most difficult and emotional week of my life. Considering how much has happened, this isn't a short post, but for those who have been asking about what the last few days have looked like for us, here's a recap.

Monday: We scheduled a 3D ultrasound through Sustaining Grace, an organization whose mission is "To help provide non-medical 3D and 4D ultrasounds for the parents of babies that have received a fatal diagnosis." While the ultrasound is non-medical, we were unable to find a heartbeat and Kaylee Hope wasn't moving. Her lack of movement wasn't unusual from other ultrasounds, where she didn't move much, but the inability to find a heartbeat was concerning. Jamie thought she'd felt her moving on the way up and we thought we caught a glimmer of a heartbeat at one point. Jamie has wondered if we saw her heart beat for the last time. There's no way to know, but we think we lost Kaylee Hope on Monday. Regardless, we left with some great 3D ultrasound shots of our little girl.

Tuesday: We scheduled an ultrasound that morning to check to see if our little girl was still alive. The ultrasound confirmed that there was no heartbeat and she had passed. We cried with one another at the finality of her life and moved ahead with plans to deliver her.

Wednesday: We awoke at 6:00 to call St. Joseph's Hospital in St. Paul and see when they wanted us to come in. We arrived just after 8:00 and spent the entire day in the hospital. At 11:10 PM, Kaylee Hope was born. She was 1 pound, 9 ounces, and was 12 3/4 inches long.

Kaylee Hope was a sick little girl, so swollen from the fluid that had attacked her tiny body. We asked our nurse and midwife how bad the swelling was and they both said it was the worst they had ever seen. Most babies with her condition simply don't live as long as she did. She was a little fighter. Kaylee Hope was beautiful, but she had been battered and bruised and it was so, so sad for her parents to see.

When we first met her, Jamie wept. I simply entered into a place of emotion I've never been. I held my baby girl and just looked at her. I kissed her where I kiss Carson and Keira - on her forehead, cheeks, lips, nose, hands, stomach. After what seemed like forever but was probably just a few minutes, I gave her to Jamie. And then I sat there, aimless, not knowing what to do or where to go. I felt purposeless. Jamie said later that she'd never seen that look on my face before. She said, "You looked...," and her voice trailed off. She had difficulty describing that look. Words she found included "devastated," "stunned," "shocked," and "sad." All of those words fit.

That may seem odd given that I knew ahead of time that my little girl was gone. Yet there is finality that is brought about by birth that carries everything you already know to fruition. It is wonderful to meet your child when they come into this world. It is awful, gut-wrenching, painful, and even evil to have to meet your child after their soul has departed from their body.

Thursday: The first non-medical person to meet Kaylee Hope was Wendy Maybury. Her distinction as the first person to meet Kaylee Hope puts her in a special place in our hearts. We were introduced to Wendy at church through Molly Piper. Wendy is a photographer and comedian. We couldn't have asked for a better person in that moment. Simply put, she breathed life into that room. We found ourselves actually able to laugh. Wendy works with Now I Lay Me Down to Sleep, an organization that provides professional photographers at no charge who take photos of babies who are stillborn or born with little time to live. She said that in most cases, hardly any words are spoken as she's taking photos. In our case, we actually talked and were able to laugh. We needed that so much.

We finally fell asleep at almost 3:00 with both Jamie and I curled up together in Jamie's hospital bed. Kaylee Hope lay nearby in her bassinet.

The next morning our pastor showed up and we were able to talk for a long time. I think it was about an hour, but the concept of time wasn't very present that day. Through the events of the last few weeks with Kaylee Hope we learned that some friends (who also happen to have boy/girl twins a year or so older than ours) lost their own baby at 28 weeks just 4 years ago. I think I'll need a separate post to even attempt to communicate how much they've meant to us. They showed up at the hospital just before Pastor Steve left. Pastor Steve dedicated Kaylee Hope to God with only us and the Tuttles present. So many tears were shed in that moment. That moment was probably the most special moment of that day.

Two of our closest friends and their little girl came to visit in the afternoon. They're also expecting a baby just 5 days before we were due with Kaylee Hope. We were so excited about the prospect of having our next children come into the world around the same time (their oldest is just 4 months older than our twins). Instead, we grieve the loss of our daughter as we pray hard for the little Steward baby.

We had a break in the afternoon that allowed us to do some things with Kaylee Hope that we really wanted to do. We read books to her. A few were bought specifically for her while others were simply Carson and Keira's favorites. We took her blanket and her outfit and held them against her. Jamie gave her a gift to keep, a pin she had received as a little girl from her great-grandmother. We talked to her and sang to her. We cried for her and loved her.

Late in the afternoon Jamie's parents came with our kids. I've never held my children so tightly or smothered them in as many kisses. I imagine an unsuspecting passerby thought it was an odd scene. I was simply elated to see them. I don't think I even hugged my in-laws to say hello.

We took family pictures together with Kaylee Hope and then Jamie's parents took the kids back to the car while we said goodbye to Kaylee Hope. We were actually surprised by how much easier that goodbye was than we thought it would be. We thought we would be sobbing and would have difficulty tearing ourselves away from her. To be sure, we did cry, but they were more like tears rolling down our cheeks than anything. We realized that the lifeless body we were leaving behind was not our little girl. It had been occupied by our little girl, but that was not Kaylee Hope. Kaylee Hope is in heaven. Kaylee Hope is missing from our family, but she's missing from that body as well.

On the way home we stopped at Jamba Juice, just as we did with the twins after they were born. The Tuttles had given us a lavender-scented stuffed animal as a gift to remember Kaylee Hope earlier in the day. We took that stuffed animal into Jamba Juice with us.

As we left Jamba Juice, we were overcome with an overwhelming sense that a piece of our family was missing. As Jamie put it the night before as we were falling asleep, "Now we have matching holes in our hearts."

We took the kids home and Jamie's sister Jessica watched them while we left to show up at our church small group (an hour late). They gathered around us and prayed for us and I think Kleenex's stock went up a penny or two during that time. Everyone stuck around for a while as we told Kaylee Hope's story and answered questions about her. The more we stayed and talked, the more the conversation turned to other things and we eventually decided to get pizza and a movie. We watched The Little Rascals and didn't get home until 12:30.

Friday: We had to go to the funeral home to sign off on a paper Friday afternoon. A friend who we just met at Hope CC came to watch the kids so we could get out of the house. At the funeral home we asked to see Kaylee Hope. We were so glad we did! Her face looked better than it had before and we were able to get photos of each of us giving her one last kiss. Again, we had tears as we said goodbye to her, but we were keenly aware that we weren't leaving her behind. We returned home and some good friends brought us dinner and gifts. They helped us feel normal for a few hours.

Each day is just another step to take in many ways. Each step will get easier, but we're in the early stage and the steps are still hard. Thankfully, your love and support is making each step just a little bit easier.


Flute + beatbox = awesome

Even if you don't like flutes, you'll still like this.



Friday, March 11, 2011

Memorial service details for Kaylee Hope

For those interested in remembering our little girl and honoring and celebrating the life of Kaylee Hope with us, we will be having a memorial service. I still need to work with the pastors at our church to finalize details and will provide updates if any changes are made to our current plan, but here's our current plan:

Date: Saturday, March 19th
Time: 1:00 PM
Where: Hope Community Church, 707 10th Avenue South, Minneapolis, MN 55404
Parking: See below
Who's invited? EVERYONE! If Kaylee Hope has touched your life or you simply want to support us in this way, please join us! It doesn't matter if you're our closest blood relative or we've never met you before. We want to share this time with you. Children are welcome!

There is no dress code. Of course, if you're able to wear purple, that's awesome! I'm expecting everything from blue jeans and a Vikings jersey (if that's all the purple you have in your wardrobe, I will attempt to look past it) to suits and ties.

The map below shows the lots available for parking at Sunday morning church services. Please use the L-shaped lot directly adjacent to the church (enter from 7th St.). This is normally a paid lot that the church rents on Sundays but Allied Parking is providing it to us at no cost on Saturday. If we somehow fill up both lots directly adjacent to the church you have 2 options. You can park for free just down the block at 7th and 11th or in the ramp across 7th St. from the church (marked as "overflow" below) for $2.50. I can't imagine we'll actually fill up the lots adjacent to the church but want to put those options out there just to be safe.

We've had some requests about how people can help with the service. I'm sure there will be things for people to do both before and after the service, such as helping with any food or decorations. I don't have many details yet on what we need for this but I plan to post them as I have them.

We have no expectations of people to come but of course would love to share this moment with as many of you as possible.

Thank you for your love for our family. We are honored and humbled.


Wednesday, March 09, 2011

Hello, Kaylee Hope

Dear Miss Beautiful,

I love you Kaylee Hope.

That may be a given, but I do and you should know it - again!

We now know that you're gone from us. I'm so terribly sad about that. I've never cried like this before. I knew the end of your short time on earth was coming but I just kept holding on. I'm still holding onto you.

I'm your daddy. I'll always hold onto you.

I almost wrote, "Goodbye, Kaylee Hope," instead of "Hello," but your mom reminded me that we're really just getting to say hello to you. We get to meet you! I'll say goodbye soon enough - too soon.

You're a fighter! Most little girls like you don't make it more than a month or two. You made it almost 22 weeks! Nice work! Your daddy is proud.

And now I get to see you. We're heading into the hospital today to meet you! You've already found your way into heaven. It's time for you to find your way into our arms.

It's so cruel though. We're meeting you, but you're already gone. You're already playing games and laughing and giggling with other babies.

But we'll hold onto what we have of you. We'll kiss you and love you and cry over you.

And we'll say hello as we say goodbye.

I love you, sweet baby girl. A piece of our family will always be missing. I already know you're perfect. Now I can't wait to meet you.

Your daddy


Tuesday, March 08, 2011

Heaven and earth

A few people have said they're jealous of Kaylee Hope because she'll make it to heaven before we do. She won't have to live through the misery and pain of this world like the rest of us - pain like what we're going through right now.

I have to confess, I'm not in the same place as these people. I'm glad they're sharing their perspective. It's good for me to consider. I know I'm supposed to view heaven as this perfect place that we all want to be at right now. We're supposed to long to be there right now, free from the bondage of this world.

But I'm realizing more and more that's not exactly how I view heaven or this world. I'm not suggesting my view is right. It's just how I'm seeing things at this moment.

Yes, our world is fallen. Yes, our world contains a lot of pain. Yes, heaven is free from all of this!

But this world is beautiful too. I haven't seen a lot of it, but I've been to each of the 50 states that make up this country. I've watched the sun rise over the Sierra Nevada Mountains in California's Yosemite National Park and over a volcano in Hawaii's Haleakala National Park. I've seen the sun set over the Pacific Ocean on the rocky coast of Monterey and over the Rocky Mountains of Colorado.

And what about the beauty that's found in love between a husband and wife, or between a parent and child, or the bonds of friendship? What about the simple things, like just playing games around a table with friends or sitting on a couch on a Friday night with a bag of Doritos and a good movie?

If there weren't beauty in this world it would seem completely depressing to be here. We say it's better for us to leave this world - and fundamentally we know this is true - yet our departure from it is still so sad and bitter. We don't have to live for this world for us to love and appreciate the beauty God has created in it.

I have peace knowing that my little girl will be in heaven. But my peace isn't because she gets to skip life on earth. I'll always long for what could have been. I'll always wish she'd have taken her first step across the living room floor, seen her first baseball game, caught her first bass, worn her first prom dress, taken her first cross-country road trip, gotten her first job....

I don't find comfort in knowing she's missed out on all of this. I don't even take comfort in the fact that she's missing out on all of the bumps along the way in life.

I have peace that my daughter will rest peacefully and that she will be loved. But despite the draw of heaven, I'll always wish I'd had her longer here on earth.

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Monday, March 07, 2011

228 people...and counting...

I've been assembling all of the text messages, blog comments, emails, tweets, Facebook messages/posts/comments, and other forms of communication we've received from people over the past 13 days.

These communications include simple statements like, "Praying for you," as well as lengthy emails detailing others' personal stories.

I'm sure I'm missing people here and there, but by my count, 228 people have reached out so far.

This number is rather mind-blowing to me. I don't know a number of these people. Even with those I know, many are people I don't know very well.

Thank you.

I can't adequately express how much it means to us to have your support. Some of the most meaningful statements to us are short, simple notes of encouragement, as simple as, "We're wearing purple for Kaylee Hope today!" I've received at least 8 notes from people letting me know they're wearing purple...most of them brought me to tears -- good tears -- with those simple words. Such an intentional gesture is so meaningful.

If you're reading this and have wanted to say something but haven't because you don't know what to say, just know that there is no right thing to say. Nobody really knows what to say. I don't know what to say. Many people have started emails with, "I don't know what to say, but..." There are no right words to say. Yet the words so many of you have said have kept us going on so many days.

Thank you all so much. We owe more to you than we could ever hope to repay.

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Sunday, March 06, 2011

The secret to replacing the TP

Jamie sent this to me a month and a half ago. She knew I'd want to post it here for the rest of you to see.

(Click the image to enlarge it or scroll below to read the text in the picture.)

Want to know the secret to replacing the TP?
When the paper is gone, tear off the cardboard tube, revealing the hidden spring. Pull spring back, slide on another roll, and reinsert.
Congratulations! Now you too know the secret of the silly "anti-theft" TP holders. If we thought you wanted to steal the paper, we wouldn't put extras on top of each tank! Happy roll replacing!

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Saturday, March 05, 2011

The definition of karma

This is what karma looks like.


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Friday, March 04, 2011


I'm often asked how I'm doing these days. I don't mind the question. I'm glad people care and want to know. My typical answer is something along the lines of, "Okay." "Good" seems too positive. "Not well" seems too ominous and negative. "Okay" sums it up enough that most people give a knowing look and a conversation about the latest appointment or diagnosis ensues.

The truth is most of the time I feel numb. I give people updates on what's going on with Kaylee Hope but I don't generally get emotional about it. I hold my wife as she cries in agony and I stare blankly ahead, trying to be her rock, trying to love her yet feeling very little myself. I feel hurt for my wife and pain for my little girl. But mostly I feel nothing myself.

Then something flips a switch. The other day it was a coworker who stopped by my office to ask how I was. She was visibly sad for us and teared up as we talked. That got me going. And it was good to feel that human impact again.

Wednesday was a largely numb day. At the end of the day we started talking to a few couples we met at church about Kaylee Hope's story. We had been about to leave church. An hour and a half and a few tears later, the numbness was gone. Someone else was entering into our story, sharing in our grief, trying to understand the hurt we're going through.

That's what always seems to flip the switch for me. It's when I get a comment or email or text message from someone saying they're wearing purple or they're thinking of us or they're wiping tears away after reading about Kaylee Hope. That's when the switch is flipped. I feel like a normal human again, removed from the horribly depressing decisions I have to make, removed from the work or kids that serve as an often-welcomed distraction.

It's good to have that feeling. I'm glad it's not permanent. I don't think I'd function very well if my eyes were welling up with tears every 10 minutes. But I need that jolt that wakes me up.

My brother sent me a text message yesterday with a song that had been running through his mind as he thought of us. It's called "Waiting for the End" by Linkin Park. I'd heard it but had never really listened to it. I don't think I quite understand all of it and I'm pretty sure it wasn't written for a situation like mine, but some of the lyrics really grabbed me:
"This is not the end
This is not the beginning"
(This reminds me of my eye of the hurricane post 3 days ago.)

"Waiting for the end to come
Wishing I had strength to stand
This is not what I had planned
It's out of my control...."

"All I wanna do
Is trade this life for something new
Holding on to what I haven't got"

"All caught up in the eye of the storm
And trying to figure out what it's like moving on"
Here's the full song, in case you care to hear it (lyrics here):

(I find it somewhat ironic that this song comes from a band whose biggest hit is called "Numb.")

We had our first weekly follow-up ultrasound yesterday. There wasn't much good about it. Nothing looks better. If anything, things look worse.

For the 3rd ultrasound in 8 days, I held my wife as she cried. And once again, I stared blankly ahead, trying to absorb it all.

I love my baby girl with everything I have, but when I think of her being gone, I often just go numb.

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Thursday, March 03, 2011

Ultrasound photos

I thought I'd post some ultrasound photos in case you're interested in seeing what we've seen of our daughter.

The 3 on the left are from our first ultrasound on Tuesday, February 22nd. The 3 on the right are from the level 2 ultrasound on Wednesday, February 23rd.

Click the image to enlarge and then zoom in to see it full size.

Here's a summary of each slide:

Top left: Internal organs.

Middle left: Head profile. (You're looking at her right side and she's facing up.)

Bottom left: Doctor's notes from our first visit summarizing his findings.

Top right: Lower legs below her knees.

Middle right: Left arm.

Bottom right: Head profile. (Same angle as the middle left photo, though zoomed in more.)

These photos are tough for me. In a way they're precious. They're the only visible image I have of my daughter.

And yet they show so clearly what's going on inside of her. The middle right photo shows a puffy arm that's visibly swollen with fluid. The middle left photo shows the sac of fluid behind her head, known as a cerebral hygroma. The top left photo shows the fluid buildup around her organs. (For those not familiar with ultrasounds, anything dark is fluid. While the dark space surrounding her is normal amniotic fluid, anything dark inside of her is fluid buildup. For example, in the middle left photo, the large dark space behind her head - or underneath it as you're looking at the photo - is the cerebral hygroma, a mass of fluid that is larger than her head.)

Starting this afternoon we'll have weekly ultrasounds. We're excited to see our little girl again. Our expectation is that we will find no changes. However, I think we both have a tiny spark in the back of our minds that's hoping this has all been a mistake, that the ugliness of the last 9 days will be wiped away and we'll go home with a clean bill of health for Kaylee Hope.

Until then though, we'll treasure the moments we have watching her move around on that ultrasound screen.


Wednesday, March 02, 2011

Should I be mad at God?

Faith has been brought up numerous times by numerous people during the last 8 days so it seems natural to dedicate a post to it. Jamie read this post and noted that it looks more like I'm processing than actually concluding anything and she's probably right, but since many have asked or simply offered their own thoughts on faith in the middle of this, I thought it would be worth communicating where I'm at.

I think everyone who knows us is aware that faith in God is central to our lives. We were introduced to one another by a pastor's wife at a church business meeting, so you really can say it's been a part of our life together from the moment we met.

Of course, anytime a Christian is faced with some sort of adversity, people seem to be interested in how their faith is impacted. I'm not exactly sure why this is. I guess we assume that it's in our darkest time that we really test whether our faith is true or not, or to what extent we believe it, as if the rest of our lives are sort of a training ground for this dark moment.

I'm not mad at God. I don't know if people think I'm supposed to be, but I'm not. Jesus is the same today as he was 8 days ago. My baby girl's diagnosis hasn't changed that. I'm not the first person whose world has been rocked by devastating news. Maybe our world view is by nature so egocentric that we just don't look around us to see all of the pain that's happening each day until it eventually comes to us, which explains why many people lose their faith in God - or at least question him - in trying times.

But does my perspective mean I have a really strong faith in God? Does it mean I believe he is in control and whatever happens is what's meant to happen? Or does it mean I don't believe in a God who is all-powerful and could really heal my daughter?

You can go round-and-round about how what's best in God's eyes isn't always what's best in our eyes, and that's true. But it's still pretty universally accepted that losing a baby in utero is a pretty awful thing. No matter how much it makes you cherish life more, love those around you more, or makes you stronger, it's never, ever a good thing to go through.

So if I believe God can heal my daughter, shouldn't I be upset with him if he doesn't do it? I think this is the question most people get hung up on.

I realize that a miracle is possible. I realize there are examples in the Bible where people prayed for a miracle and got it. But I've never seen a case where a chromosomal abnormality was simply biologically reversed and I don't see a reason to think it will happen this time around.

And yet, I'm not upset with God.

Maybe it's because I don't view God as a slot machine for me to come to, pull the lever, and expect to be served with the best outcome possible. I also don't think God is a chess player with the world as his chess board and my daughter as a pawn he's about to take for his own.

I believe God provides refuge from the storm. He's someone to whom I carry these trials and lay them at his feet. I think he provides healing - not always physical, but certainly spiritual, emotional, relational healing. I believe he will take my daughter in his arms when she's lifted up to heaven.

I don't know why he's taking her so young. But do I need to figure out why? There's a lot I don't know about God. We spend so much of our lives trying to figure God out, but how can a finite mind ever know an infinite one?

I've often thought of Deuteronomy 29:29 in circumstances like this:
The secret things belong to the LORD our God, but the things that are revealed belong to us and to our children forever, that we may do all the words of this law.
There are some things we just can't understand.

So I put my faith in the God of the Bible, not to immediately fix all of the problems in this world or with my daughter, but to carry us through these times and to be a source of comfort, rest, and hope. I don't think I have to know why everything happens on earth - the good or the bad - to maintain my trust in him as my rock.

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Tuesday, March 01, 2011

The eye of the hurricane

Last night I told Jamie, "We need to talk to the social worker at the hospital. We've got to figure out what we're going to do with her." I was referring to decisions regarding what to do with little Kaylee Hope once she's gone.

Jamie responded, "Send her home in her cute little carseat? Okay!"

I love that attitude! Kaylee Hope is not gone yet and we need to remember that. Yesterday Jamie told me, "I recognize that it's our fault, but I wish people wouldn't think of her as dead already."

Jamie's right. It is our fault that people tend to think of her as being gone already. We're in a strange place right now. Kaylee Hope is moving around, very much alive and kicking! And yet we've been given a death sentence and we've communicated that death sentence to everyone else. Doctors aren't talking in terms of her chances at survival. They're talking in terms of how long we have until she passes.

Of course, we've communicated that because it's reality and we want to be honest. We don't expect our little girl to live. We hold onto a faint glimmer of hope that the next ultrasound will be clean, or at least better, and there will be a fighting chance that she'll somehow pull through. But we also want to be realistic and plan for what's expected.

We're also trying to enjoy her life while she's here. It's why she has a favorite color and is why she gets piggyback rides (via Jamie on my back). It's why I lean over and put my hand on her when Jamie whispers in the middle of church, "She's moving!" even though I'm fully aware of how absurd it probably looks to everyone else for me to so publicly be reaching my hand across my wife's stomach in church.

We love this little girl and we're savoring each moment we have with her. We feel as though we're in the eye of a hurricane. The first two days last Tuesday and Wednesday brought the heartbreaking, totally unexpected storm. Right now we're in the calm of the storm to a certain degree. At some point though we fully expect the tail end of the storm to whip itself into a frenzy. Once it's over, we know there will be hurt and pain and a scar that will never go away.

But for now, Kaylee Hope is with us. She's not gone yet. Death eventually comes to each of us. For some it's at 90, for others at 50, and for others it comes before they make it to birth. Yet we celebrate life while each heart is beating today. It's no different with our little girl.

Kaylee Hope's heart is beating. The one chamber left pumping is still going strong. Her little arms are stretching all over. She starts dancing when the car starts moving or when Pastor Steve starts talking in church. She reminds us of her presence every day and we do our best to remind her of our love for her.

So we hold onto these moments and we cherish this time. And please, think of our little girl as being very much alive until you see a post on here announcing her memorial service. We've certainly had our share of grief and mourning over the pending loss and will continue to carry that sorrow with us. But in the midst of the sadness, we're trying to have a better perspective of enjoying her while she's here and waiting to mourn until she's gone.

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