May 032012

There were very few times when Alexandria was completely wide awake.  Most of the time that happened in the middle of the night, when I was watch, and no one was around to witness with me.  I’d took some video on occasion.  Below was a morning in early January, I’d planned on posting this to facebook but when I did facebook choked.  I didn’t have a youtube account yet, and this website wasn’t even a thought in my head until a week later…. so it was lost until today.

As those of you know, there is a couple we’ve been praying for who’ve been given the miracle of having their daughter, Nora, with them.  I read through their posts and I remember the pain, the fear, and the absolute joy… how intermingled they can be and how stressful it was.  You can go through an entire night of blazing pulsox alarms, exhausted, and then get a few moments like those below.  Wide-eyed, looking around, engaged, bring you so close to God. 

Tomorrow will be the third month anniversary of Alexandria’s death.  I spent a good amount of time crying today, even though it was my birthday.   I didn’t want to celebrate, but knew how important it was for the kids and how excited they were.   I did the due diligence.   I wanted so badly to have her here today, and am so thankful that we had so many wonderful days with her.  God blessed us with such a wonderful journey, and I see his work in Aleisa, William, and Nora… but it is difficult to understand, to accept, why this happens, and even moreso to move on.  I feel trapped in my grief. 

I love you Alexandria, and daddy misses you so very much.

Video from January 6th, 2012

 Posted by on May 3, 2012 at 9:32 pm
May 012012

It has taken me a long time to finally publish what happened the day of Alexandria’s funeral.  I kept putting off going back, reviewing it, finding the pictures that went with it.  I didn’t want to close that door.  We had my brother-in-law take pictures for Gabriel’s sake.  We wanted to make sure he remembered that she didn’t disappear, that she died, that it was final, that we did what is done after death.  Other pictures were for us…  One of the things our councilor has suggested is giving Gabriel a keepsake box, or a photo album that he can make himself, so he can go back and look at these things whenever he wants.  He’s been very excited by the idea and Kim and he started making an album today.  I guess that made me feel it was time, time to finish that week’s posts off.  To remember, but close it.

So I finished this post today, (4th Day After) Her Funeral, and thank everyone who helped make the day the celebration it was.


 Posted by on May 1, 2012 at 10:39 pm
Apr 282012

Aleisa and William’s daughter Nora Rose was born a little more then a week ago and a similar miracle occurred during her birth.  Unfortunately, like Alexandria, Nora has had some blue spells.  This evening Nora had a fairly bad one.  I remember the terror, the fear, when Alexandria would have an episode and then snap back to life.  I wish I had words of comfort for them, I wish I could make it all better.  I feel helpless, and now know how others must have felt around us.  It’s so much harder to be the parent, but I feel the agony of watching what they are going through and not being able to help.  They are wonderful parents, with a faith and love unmatched.  Dear Lord, please carry them, hold all of them up this evening.

 Posted by on April 28, 2012 at 11:57 pm
Apr 272012
Alexandria, Gabriel, 12/22/2011

Gabriel making sure Alexandria can see him. (12/22/2011)

One of our greatest concerns before Alexandria was born was how Gabriel was going to handle everything.  He knew Kimberly was pregnant, he’d been told that there was a baby in her belly, he’d seen Ethan’s arrival less then a year prior.  He was so excited that we were having a baby, even more-so when he found out it was a girl.  He’s quite enamored with the girls in the neighborhood, I think because they aren’t as rough and tumble as his brothers…  and now a sister was on the way.

He was going to remember her.

He was going to have feelings for her.

He was going to have to, at such a tender age, come to terms with her death.

While she was here he loved her as deeply as any of us.  He held her, he sung to her, he kissed her.  “I’m so excited she came out of mommy’s tummy!” he would say.  He still says that, but it is usually prefaced with “I miss baby Alex.”  After she passed he told us that she died, often.  He was trying to understand it, trying to connect the pain he felt with the reality of the loss he was experiencing.  No matter how often he brings it up we’re careful, we listen, we let him express himself, we talk to him about it.

Then he stopped.  He stopped mentioning her, he stopped telling us… until earlier this week.  Gabriel began making up songs.  Mostly to a tune that he knew, Mary had a little lamb, London Bridges…  But within each song he’d sneak her into it.  He’d mention her death.  This evening we sat down to dinner and we take turns saying grace.  Grace usually consists of a rendition of “Come Lord Jesus be our guest and let these gifts to us be blessed.”, a standard Lutheran grace my family has used long before I was born.  He announced that tonight was his turn and he was going to tell us a prayer that we’d never heard before.

Gabriel: Come Lord Jesus, we love you, we love mommy, and daddy, and sister, and everyone, and baby Alex died, and thanks for gifts…

Ethan: AMEN!

Gabriel:  … and love everyone and be our guest…

I looked up momentarily when Ethan screamed out Amen.  Never heard him say it so clearly, much less as loud, before.  Kim almost lost it muffling a giggle as best she could, the timing was just perfect.  We told him it was a wonderful prayer.  A light touch of humor from Ethan, against a sobering moment with Gabriel.  He’s finding ways to express his grief, his confusion, his pain.  He’s talking about her more often now, and Kimberly and I are talking with people to help us help him.  Please pray for Gabriel, pray for his comfort, and that is given the grace and understanding that has eluded me.

Gabriel holding Alexandria

Gabriel holding Alexandria

 Posted by on April 27, 2012 at 6:30 pm
Apr 242012

My cousin was kind enough to ask her grandmother for a copy of the story/poem-of-sorts that her church gave to her when her (the grandmother’s) daughter died:

A Celebration of Resurrection

If a tiny baby could think, it would be afraid of birth. To leave the only world it has known would seem a kind of death. But immediately after birth the child would find itself in loving arms, showered with affection and cared for at every moment. Surely the baby would say, “I was foolish to doubt God’s plan for me. This is a beautiful life.”

For us, passing through death is really a birth into a new and better world. Those who are left behind should not grieve as if there were no hope. Life is changed, not taken away. Our dear ones live on, in a world beautiful beyond anything we can imagine. With Jesus, they await the day when they will welcome us with joy.

“Do not grieve too much,” they say to us. “We are living and still with you.”


Kimberly, Alexandria, and Douglas the day she was born

Kimberly, Alexandria, and Douglas the day she was born

Alexandria… From our arms to Jesus’ arms… We can’t wait to see you again.

 Posted by on April 24, 2012 at 3:06 pm
Apr 222012

**Disclaimer: Friends and Family, this post is meant to be a help to anyone who finds themselves on this journey with someone else. You have been the most supportive people we could ever hope to have had surround us at this time. You held us up and carried us through this. THANK YOU! I also wanted to document this stuff so if I personally find myself in this situation with someone else I can refer to it. I truly hope I never need it. – Kim

Anyone wondering what we talked about for around 2 hours to the Stephen Ministries group? 😀

I hope none of you are self conscious enough to be worried silly thinking you said or did anything that upset us during this whole journey. It takes quite a bit to rile me up. I could tell you horror stories like the one about the funeral home employee Doug talked to prior to Alex’s birth who referred to her as a fetus, didn’t seem to get why we would want a funeral, and tried to tell him all sorts of things about funeral laws that weren’t true. The man had a serious chip on his shoulder. We happily found another, very sympathetic funeral home to handle her arrangements. You can go back and read here about one instance where I was initially offended but ended up more sorry for the person I was talking to. Or I could tell you about another person, who upon learning our baby had a fatal condition, asked me if I planned to get my tubes tied this time. I brushed it off – she didn’t know what she was talking about. She doesn’t have any children of her own. How could I adequately explain that each and every one of my children was worth any and all pain I may have felt physically and emotionally and I would suffer anything for the joy they have all brought me. How incredibly grateful I am for each and every child I have been entrusted with here or in heaven. Our experiences have, if anything, made me want more children.

It takes quite a bit to rile me up.

I was talking to a friend who herself has lost two babies. We were talking about things people say when you suffer a loss. There are lists all over the internet of what to say and what not to say. I think it really depends on the person though what words are helpful and which ones aren’t. One of the things parents complain about most when they find out their child has Down Syndrome is the people who say how sorry they are. I was one of the few I guess that actually liked it when people said that when Aden was born. I never took it as “I’m sorry your child was born.” I took it as “I’m so sorry things aren’t how you thought they would be.” An acknowledgement that something happened we didn’t expect. That it was ok to be upset.

Some highlights of our “things not to say” list.. some may surprise you:

God doesn’t give you more than you can handle. I’ll tell you, in the midst of the storm the last thing you want to hear is God thinks you can handle this so he gave you something REALLY hard to deal with. And if you’re not handling it well, then you are not living up to God’s expectations.

God chose you for this. Are we that special? It’s like saying we’ve been chosen to be struck by lightening. YEA ME! Why us and not someone else? Because what does that say about the person telling me that – that they’re not chosen or special? or that they couldn’t handle what we’re going through? That’s why we like the “God doesn’t give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength.” quote.

You are such strong people. It may seem like that but we don’t feel that way.  We’re scared, angry, tired, and full of anything but strength inside.  There is no way around this. No way over it. We have to go straight through it and hang on tight.

How are you? This might seem strange because “How are you?” is such a general question that everyone asks everyone else. But the social construct is you answer with the generic “fine”. Well, everything’s not fine. And do you really want to hear everything that’s going on or are you looking to hear the acceptable protocol “fine”? And if it’s someone we don’t know very well, do they know what’s happening or do they not have a clue? Are they going to be caught off guard if we say things really suck right now?

(If you said one or all of these things to us, first, the sentiment behind it meant a lot and was appreciated and, second, we haven’t a clue specifically who said these things to us so no worries. Grief apparently makes you hugely forgetful. Hopefully the following suggestions will help you help someone in the future.)

One thing we both agreed on was it was (generally) better to say something than nothing at all. The silence is deafening and makes you wonder if the person cares at all. It can make you question your relationship with that person.  I think a lot of people assume that bringing it up will cause you pain or make you uncomfortable. I can tell you from experience you’re not bringing up something that I’m not already thinking about. I thought about Alex every moment of every day. She is still never far from my thoughts. One of the best things anyone did for me was our neighbor who parked herself at my dining room table one day before Alex was born and basically said “How are you really doing?”

If you’re having trouble thinking of something, you can’t screw up with “I just wanted you to know we’re praying for you.” or the arm around the shoulder and the “We’re thinking of you.” Or anything that conveys “Your daughter is beautiful and has value and we will never forget her.” Or no words, just a hug. If you really want to be helpful, be specific about that help. “Is there anything I can do?” will most likely be met with “That’s ok..” But if you say “I’d really like to help. I want to do ___ for you (bring a meal, watch the kids, help you clean, do laundry, etc). When would be a good time?” One thing my friend said to me was “When you’re ready to get out of the house, I want you to come over and the kids can play and we can chat.” She then paused. “Do you need me to be pushy about it?” Yeah.. yeah I did. I needed her to bug me about it and reach out to me. Pull me out of my secluded comfort and rejoin the rest of the world. And know that she meant it and hadn’t forgotten about me.

So all the above plus the million or so obligatory stories about our beautiful, wonderful, fighter of a daughter and you have the synopsis of what we said at our Stephen Ministries meeting.


 Posted by on April 22, 2012 at 9:44 pm
Apr 172012

Please pray for our friends Aleisa, William, and little Nora.  Today will be Nora’s birthday and she has Edward’s Syndrome.  She’s being born to incredible parents, God has given them a wonderful faith and strength and I pray he gives them so much time as well.

God Bless,


 Posted by on April 17, 2012 at 7:12 am
Apr 152012

Kim and I sat down with the Stephen Ministries chapter of our church on Thursday.   This is a group of trained individuals that meet with people  in need, usually once a week, to listen and help.  They meet one-on-one with people, but in this case Kim and I met with the entire group.  They were interested in learning from us, about our grief… what people did that was good for us, what people did that was bad.  I wasn’t planning on doing much talking, I even told Kimberly before we went that it was my plan to sit back and listen to her talk.  She’s better at communicating than I am, at least from my perspective… and I was somewhat fearful that I would break down when discussing Alexandria. 

I rambled.  Probably much like I do on this blog.  I’m sure I dominated the conversation.  Any opportunity to talk about Alexandria… guess I just can’t pass that up.  But who could?   I hope that they were able to take away some things that will help others.   They all were genuinely caring people, and should anyone in our church need them I’d highly recommend speaking with Pastor.

It’s 2am and I’m fighting sleep.  I have this irrational fear that if I fall asleep I’ll forget something about Alexandria.  Isn’t that the oddest thing?

Dressing Alexandria for the first time...


She was and is wonderful.  I miss you baby girl.  I miss you so much.

 Posted by on April 15, 2012 at 1:10 am
Apr 082012

Note: Edited this a bit Sunday @ 7:18pm, wrote it quickly earlier before church today… made some corrections and clarifications.  God bless…

It’s been a mixed bag week for me, but a fantastic ending.

A year ago we had my parents over for Easter, coloring eggs with them and the boys.   Kim and I chose that moment to tell them that we were pregnant.  She wrote on some eggs in white crayon so that when grandma and grandpa pulled the eggs out of the dye they said the following:

Baby Dec 2011

Everyone was excited… we had no idea what was to come.  We invited all our neighbors over for an Easter Egg hunt and we told them as well, another kid coming to the neighborhood.

Fast forward one year.


On Thursday during service (Maundy Thursday) I started to dwell on the fact that Alexandria wasn’t with us.  She wouldn’t get an Easter basket, run around and find eggs, meet the Easter bunny, have an Easter dress… you name it, I thought of it.  And I lost hold of it, feeling tears stream down my face.  Thankfully the church was darkened.  I bolted with Aden out of the back of the church at the end of service as fast as I could to find a place to get a hold of myself.  I felt like a fool, embarrassed because of my grief, and that I’d allowed it to overflow where we were.


I was fearful that’s how the rest of the weekend would be, but it was not.  During the Good Friday service there were four “wash” stations setup throughout the church.  As part of the churches series on learning about Christ through all of our senses we were offered the opportunity of “touch”, to wash each other’s feet as Jesus had washed those of his disciples (John 13:1-7).  Now, I’m not one for having other people touch my feet.  I even leaned into Kimberly and said, “I don’t think I’m doing this.”  As almost on queue Aden stood up, grabbed my hand, and started pulling me over to the area of the back of the church were one of the chairs and bowls of water were.  He dropped to the floor and started ripping his shoes and socks off, looked up at me and pointed to me, then to my feet.  He may not understand many things, but somehow he knew what had to be done here.  He wanted my shoes and socks off and he wanted them off NOW!  As I took off my shoes and socks, Kimberly, smiling touched my arm and leaned in and quoted a previous sermon, “..unless you have the faith of a child…”.  It was in reference to Matthew 18:3 “I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.”

I got the message:  Stop.  Let go.  Take this experience in.

Aden allowed another church member to wash his feet, which stunned me.  Here’s a boy who doesn’t like to be touched by anyone allowing someone he doesn’t know well to touch his feet.  I then sat down and he washed and dried my feet.  I in turn washed Kimberly’s. 

I felt better.  I felt burdens lifting.


The following morning, laying in bed, I grabbed a booklet that Pastor had given me the day Alexandria died.  It’s called “A promise of life”… it was sitting on our bedside table.  I had not yet opened it, probably as a part of my resistance to confront my grief, even my anger at God.  I read through it and it was very good.  A few pages really stood out, including part of one about accepting God’s answer:

“God’s wisdom, His grasp of your situation, is unquestionable.  His love is not dependent on the size of your faith or the fervency of your prayers.  His love is.  It always will be.  Open your heart to the healing God chooses — peace in place of bitterness, calm in place of fear, hope in the face of death.  Open your faith.”

An accompanying verse:

Three times I pleaded with the Lord to take [this burden] away from me.  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong.”  – 2 Corinthians 12:8-10

I’ve had some sad moments this weekend, but I feel God’s presence again.  I feel very blessed to have the church and family I have.  Thank you Lord.




 Posted by on April 8, 2012 at 8:01 am