Dec 152015
 

I once read a poem about relationships and people… it talked about people come into your life for a Reason, a Season, and a Lifetime.   The idea was that God would place someone in your life for one of these timeframes.  The first was a Reason, a small amount of time, to get in and out and do what he needed.  You may know them, you may not.  The are there to do their thing and move on.  A Season was someone who stayed for a little longer, maybe months, maybe years, a season of life.   They and you contributed to each other, but eventually moved on.   Lifetime is pretty self explanatory.  I loved it.

In Alexandria we were given all three.  She is the Reason we’re at St. Matthew.  It’s hard to admit the failure I was in bringing my children and family to Christ.  I didn’t know how.  I didn’t have the instructions and teachings that so many do from early in life… and I didn’t look for it.  I was angry when Aden was born, I was angry and how our church at the time didn’t support us.  I no longer blame them, they didn’t know how…  but it and other events cause me to walk away.  I had often worried about Gabriel and Ethan’s relationship with God… but done nothing to nurture it.  Alexandria changed all that.  She brought me to my knees.  It’s ironic, you’d have thought I’d be angry again, that I’d have just lost my mind towards God…. but I didn’t.  I was wholeheartly drawn to St. Matthew without knowing why, to talk with Pastor Rob…  I had to save my family.  I had to get us help.  I had to find a way home.  I remember my initial phone call to Pastor Rob to setup a time to speak with him, I remember meeting him and pouring out everything we had gone through.  Looking back now it was a lot to lay on him… but he handled it with grace.  I attended the church alone that Sunday and pastor asked me to speak…  As I walked to the podium I had no prepared speech… but in front of a sea of strangers the words just came.  Aden, our challenges, and Alexandria.  My baby girl.   I never expected the reception I received that day, it still affects me to think about it.

Over the Season of the pregnancy Kimberly was welcomed and held by the women of the church.  They prayed over her, they gave her comfort and support that could not be matched.  After her birth our church family did everything they could to help us have time with Alex, it was and is truly amazing.  My family could not have asked for better examples of Christ’s love and sacrifice then what we received from these people.

The Lifetime…  she changed our lives.  She changed my life.  Not a day goes by I don’t think about her.  She’ll always be here with me.  She changed my focus on life.

She’ll be 4 tomorrow.  4.  She’d be in dresses, having tea parties, and watching Frozen until I tore my hair out.  Maybe that’s why I’ve never seen that movie… maybe subconsciously I know I can’t watch it with her… so I don’t watch it.  I so wish she could have known her little brother Michael.  I know they’d have had so much fun playing together.  I love her so much.  I miss her so much.

 

alexkim2

 Posted by on December 15, 2015 at 9:06 pm
Oct 202013
 

Today was a difficult day.

First, let me bring the rest of you up to speed on what everyone on facebook already knows.

Over the last year God changed my heart. Kimberly always wanted more children, but I was done. I did not want to go through the pain, or put another child through, what we’ve gone through again. We learned of new medical research and even found a plausible explanation for our children’s conditions, and a way to treat it. I was still done. But God’s a patient man. He changed my heart, and after a lot of prayer and placing our trust and faith in him, Kimberly is expecting in April.

Kimberly and I have had a terrific few weeks. We receive results of a “Harmony” test, a new diagnostic test that with a simple blood sample from Kimberly can tell us our chances of a genetic abnormality. Our baby, within 99.99%, is healthy. No chromosomal abnormalities. Our boy.  He used the research to put me at ease, and slowly gave us the courage to try again.  God is good.

So it’s been a great few weeks. I’d been waiting for this day for some time. You see, we’re building a new addition onto our church… a family life center. Gone is the entrance I walked Alexandria into our church so many Sundays, the entrance I carried her casket into and out of for her funeral. In its place is the shell of a fantastic new space that will be used in countless ways for the glory of God.   When they were preparing to tear it down we were offered pachysandra that was around the entrance, which I took out and planted around the front of the house. It grows around the flowering plant Kim’s parents gave us when we found out about Alexandria’s condition, and the Love Rose given to us by our small group in memory of her…   The boys run around the yard constantly, having fun, playing.  A scene I’ve pictured in my mind occuring in the new family life center.  They will play with their friends there, learn of Christ, have plays, shut-ins… but Alexandria would never get those experiences. It’s bothered me. A lot.

So as i said, we’re building this new addition, and a few months back we were told that the congregation would be offered the opportunity to write bible verses and prayers on the floor of the center, so that we could walk on the word of God. These would obviously be covered up by carpet… but they would be there. I knew what I wanted to do. I knew what I wanted to write.

I missed her so much this morning. I cried long and hard before we got into the van to go to church…  It brought back so many memories and briefly made me feel empty again.  But I have a wonderful family, a fantastic church family, and that feeling doesn’t linger long anymore.

When the time came to write, I found one of the main doorways and I counted 12 steps into the room, one for each disciple. I wanted to be able to find that exact spot whenever I wanted too again. I sat down on the floor and began to write. I wrote Mark 10: 13-16, “…And he took the children in his arms, put his hands on them and blessed them.” This was the top of the cross I was going to draw with scripture. The middle, Ecclesiastes 3: 1-8, 14. “…a time to weep and a time to laugh, a time to mourn and a time to dance…” The base of the cross is Psalm 23. “I will dwell in the house of the Lord Forever.”

These were the scriptures from Alexandria’s funeral service. They bring me comfort.

At the top of the cross I wrote Aden’s name, Matthew, Gabriel, Ethan, and Alexandria in the center, and Baby Vogt at the base. I also wrote a small prayer off to the side, which Kim and I both signed.

This church has given us so much. A debt I can never repay. I know this building will help them, help us, spread his word. God is good.

 

Scripture Cross on the floor of St. Matthew

 

 

 

 Posted by on October 20, 2013 at 10:50 pm
Jun 132013
 

I’m beside myself.

Kimberly and I lost our second son on January 26th, 2006.  Kim was in her first trimester… Matthew had triploidy and an additional 15th chromosome.  When we lost him, because he was so small, all of his remains were used in testing for these conditions.  We were told, at the time, that the hospital was required to keep them for 10 years, as a part of the hospital record.  The woman we spoke at the time was very understanding and she placed a note with his remains with our phone number and an explanation that after the 10 years were up they should call us so we could lay him to rest.  It was an extremely difficult situation for us to be in, knowing we’d have to wait so long.

A few days ago I had this feeling I should call and make sure everything was “ok” with him.  I called and didn’t get an immediate response, which is different.  Two days ago I received a voicemail message from Spectrum Health Bereavement Services asking me to call the hospital.  I wasn’t able to get a hold of them, but figured I knew what it meant.  I was sure they’d lost him.  Or they’d destroyed him.  For the last two days my head has been swimming in agony trying to connect and find out what was going on.

They called this morning.  They asked me exactly why I was calling and I explained the entire story from start to finish.  She told me, “Well, all of what you said is true, but there’s been a misunderstanding…”

“Here it comes” I thought.   Every possible horrible situation ran through my head… they lost him, they destroyed him, they were going to keep him another ten years…

she continued, “… if you come into the hospital and sign some forms we’ll release his remains to you, through a funeral home.”

They’re going to give him back.  I get my son back.  I get to lay him to rest, next to his sister.

I’m beside myself.

Proverbs 3:24 When you lie down, you will not be afraid; when you lie down, your sleep will be sweet.

 

 

 Posted by on June 13, 2013 at 8:49 am
Dec 162012
 

Dear Alexandria,

I miss you and I love you so much.  I pray that you know how loved you are and how many hearts you’ve touched, most deeply my own.  I still have trouble without you sleeping on my chest, feeling the warmth of your breath brush past… smelling your wonderful hair, holding you night and day.  I saw you today, in your mothers eyes.  She looked at me in such a way that I could see you, those wonderfully big blue eyes smiling back at me.  Gabriel speaks of you often, he misses you, as do Aden and Ethan.  I long to see you again, to hold you, to let you know how much I love you.  You are always in my mind, my heart, and my soul.  I love you baby girl… happy birthday.

Daddy

Alexandria and Me

Alexandria and Me at her 1 Week Birthday Party

 

 Posted by on December 16, 2012 at 12:05 am
Dec 102012
 

Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

After Kimberly and I were engaged my sister Marybeth pulled Kim aside and told her, “If you ever have a daughter, the sun will rise and set on her.”  I denied this with great gusto, but in my heart I knew she was right.  I wasn’t even married and I knew what I’d say to boys when they showed up to court her, “I have a gun and shovel, I doubt anyone will miss you.”  Granted I’ve toned down a bit over the years…

We spent our honeymoon in the mountains of Vermont.  The trees were changing color for early fall, it was postcard serene.  It was a beautiful small town, a wonderful inn, we had a great time.    We’re simple people, small town kids, and it was a warm wonderful getaway.  The trip felt like going home for Christmas during college; that cozy familiar feeling of home, with an air of newness.

Example Dollhouse

Example Dollhouse

One of the stores in town was a doll-house shop.  I know what you’re thinking, a doll house shop?  Sure enough, a business entirely dedicated to the building of custom dollhouses.  Life-like miniature houses with tiny furniture, carpet, even electric lights.  The gentleman that owned the place was working on an exact replica of this woman’s estate to give to her granddaughter.  There were houses of all shapes and sizes, alongside all the tools and supplies to build them.  Kim saw the gleam in my eye, I was going to build one of these someday.  I had modest carpentry skills, I’d built a small light-up church for the top of our wedding cake… but had no real tools at this point in life.  However, I was set on building any daughter a dollhouse like this, not buying… building, one with all the works, real lights, carpet, tiny furniture, the whole deal.  Kim didn’t blink, she’s always supported my odd endeavors.

A few years later we bought our first house.  It was an 100 year old craftsman 2 1/2 story with quartersawn oak floors and trim.  It was in rough shape though, and we gutted it down to the studs.  I saved the woodwork though, carefully cataloging it as we took it down and stored it in the basement.  We replaced the entire interior, except the trim, in a few months.  It was my first attempt as a general contractor, and was also how I began to assemble “the shop.”  The second floor trim of the house was a total loss, but we wanted it to look like everything else, so I build that trim from scratch in the basement.  That required tools.  🙂  Over the year I built and refinished all the trim in the house.  I honed my skills.  I did ok.

Before/after remodeling our first house

Before/after remodeling our first house

Kim's Hope Chest

Kim's Hope Chest

Time passed and Aden was born.  For a while our dream of a big family was put on hold, but eventually we decided to have more children…  and hopefully one day a daughter.  The dollhouse was still in my mind, but other projects popped into my head as well.  A trunk, for our sons.  Toys.  Every daughter needs a Jewelry Box.  A hope chest.  Kim didn’t have a Hope Chest, and that seemed like a good start… so I built her one for Christmas 10 years ago, complete with dovetailed sides, all out of good aromatic cedar.  Another project to fine-tune my skills, I believed I’d build another one of these.  One for a little girl.  One with secret compartments for a diary, or jewelry.  The daydreams became bigger too, like what would I build for wedding gifts… a bedroom set?  A dining room table?   I never seem to dream small.  Kim laughs that I never dream small.

Once Ethan was born I began to push those dreams into the distant future, they began to fade.  Kim and I had conceived four boys, the chance for a girl seemed less and less likely.  Instead of building them for a daughter, I began to think that perhaps it would be granddaughters who’d get a dollhouse, jewelry box, etc.  The hope of walking my little girl down the aisle began to fade…

But that changed on August 12th, 2011.  For twenty minutes my mind was swimming.  All of our dreams were coming true.  We’d just bought a new house, had great neighbors, a good new school for Aden, and now we were having a girl!  Everything I’d dreamt, thought, and hoped for with a daughter came rushing back.  All of the things we’d get to do with her, all of the things I’d build for her.  It was coming true!

And it all came crashing down.  Hard.

I can still hear Kimberly’s cry of horrible disbelief.  The anguish in her voice, and the waves of confusion, fear, and almost palatable nausea that swept through the room.  I do not know how we’d have gotten through it without Dr. VandenBosch.  She was kind, compassionate, and clearly cared about our well-being and the well-being of Alexandria.  She broke the news as well as is possible under those circumstances.  No doctor could have done better then her, we were very blessed to have her.  It hit us harder than anything prior.  We were having a girl, and she wasn’t going to stay.

The future, so often in doubt, became clear very quickly.  No dollhouse.  No jewelry box.  I wouldn’t get to walk her down the aisle, but instead I would carry her to the grave.  I had the skill-set though, I could make her something to protect her and sleep in for all time.  I’d make something worthy of her, I’d honor her by building her casket.

If you’re out there researching building a casket for a child on google or yahoo you’re going to be sorely disappointed.  I found plenty of sites that were willing to sell caskets, but extremely few that outlined how to build one or have designs.  I had an idea in my mind of what I wanted, but found nothing close to what I wanted.  Perhaps I was looking for something too specific…  there are concepts I had about the casket, some were simple woodworking ideas, others were casket specific.  I wanted that all in one place.  Something to help me think it through.   Maybe Google just… doesn’t have them indexed properly.  Maybe there aren’t that many like me… I don’t know.  I can’t be the first.

I won’t be the last.

I started out looking for a good wood supplier.  Most of the companies in Grand Rapids that used to supply wood have gone under.  I was able to find one that had what I was looking for, good Cherry stock, great woodgrain, it was perfect.  I didn’t have a complete plan for the casket yet, just an idea in my head.  I returned a few days later with a list of stock that I needed.  During conversations I avoided explaining the project, just that it was small, the sizing, etc.  Eventually while assembling the order the owner outright asked me what I was building.  I couldn’t avoid it any longer and told him, “A casket.”  He could tell by the look on my face, the requirements for wood quality it was important.  “This is for someone you really care about.”  “Yes.”  He figured out by size requirements what that meant.  He offered to give me the wood for free.  I thanked him for the offer, but said no.  I didn’t voice it, but I wasn’t going to take charity on this project.  I would pay for this with my own money, earned through my hard work, and build it with my own hands.

So building began….  Gabriel often came into the shop.  By the time she was to arrive he knew what a casket was.  “What’s a casket?”  “Well, it’s what your body is laid to rest in after you die.”  “Why is Baby Alex going to die?”  “She’s very sick, but not sick in a way you can get sick.”  We had that conversation a dozen times.  It helped him process it, come to grips with the concepts.  Vogt boys need to hear the same thing over and over. 🙂  Sometimes he’d work on “his own project,” which consisted of stacking some wood and banging it with a hammer.  Other times he’d help me, sand some parts or hand me tools.   He had a vested interest in it.  It helped us connect.  It helped me cope, and I think it helped him cope too.  “Won’t she be scared in there?”  “You aren’t scared after you die, you don’t feel fear, or hot, or cold.”  “What about when she wakes up?”  “She won’t wake up in here, she won’t be sleeping.   When you die your body no longer moves, you don’t eat, you don’t sleep, you don’t breathe.”  Words we’d been given to help him through counseling, through talking with other parents in our situation.  It’s hard to help a 4 year old grasp death.

Over time I had a few people (friends/neighbors/family) come into the shop and ask what I was building.  Some knew what to say, others were understandably awkward and said nothing.  I think it was too real for them.  There are people now that can’t talk to me about her, won’t look at her picture, watch her videos.  They don’t want to hear it.  I think the thought of going through what we did, with their own children, is something they just cannot face.  They can’t conceive of it, and it’s too close for them.  I needed that though.  I needed people to ask.  I needed people to be interested.  I needed to talk.  I’m thankful to those that could, that can.   I love talking about her.  I may cry, but I love talking about her.

As the casket progressed I began to think about what I wanted the inside to look like.  I asked Kim is she wanted to make the inside, the mattress, sides, and pillow.  That… was a little too much for her.  Kim did not want to see the casket until it was done.  It was too close and brought too much too close.  For me, making the casket, was therapeutic.  For Kim, making her blanket was.  Once I knew she did not want to make it I knew exactly who I wanted to do it.  My mother-in-law, Gretta.  She’s incredibly talented with sewing, has made all three boys wonderful teddy bears, has made quilts, you name it.  When she was visiting one day I pulled her into the shop and  showed her what I’d built so far.  She said all the right things, we cried a bit, and then I asked if she’d be up to making the inside.  She said yes, she’d love too.  I gave her a rough drawing of the inside measurements, that I would like white, and how big/thick I thought everything should be.  A few weeks later she returned with a mattress, pillow, and side-rails.  It was perfect.

 

Casket Mattress, pillow, and sidewalls made by Gretta

Casket Mattress, pillow, and sidewalls made by Gretta

I finished it shortly thereafter.  I often prayed that we would not have to use it.  I kept it in the shop for a long time, but did bring it into the house to take pictures of it once.  Eventually I wanted to make a set of plans for it, so if someone else was in my position they could use them as a guide… to have more information thanI did.

 

After she was born, I put it out of my mind.  In January I moved it into my office… the shop was cold, and I didn’t want this to be cold.  When the time came, if we did need it, I wanted it to be warm.  I knew what would need to be done when she passed on, Gabriel would need to see her laid to rest in it.

And she did.  She left.

We knew it was important for Gabriel to understand death.  To understand Alexandria was not asleep, she was not going to wake up, that she was gone.  We’d done our best to prepare him for that, to make him understand that this casket would be her resting place.  I included him in every step, from building, to the end.  “Do you want to help me lay her down?”  “Yes”  We carried her to the casket, which I’d moved into the dining room.  We laid her down, he tucked her in.

We closed the lid together.

“Can I lock it?”

“Yes” and I handed him the key.

Gabriel Locking Alexandria's Casket

Gabriel Locking Alexandria's Casket

He was begining to understand the finality.  We took pictures, so he’d remember the moment, so he wouldn’t think it was a dream or that she did not die.  That was difficult to do, but necessary for someone so young.  He “cleared the way”, walking in front of me out to funeral directors car, where we let her go.

Douglas with Gabriel, carrying Alexandria in her casket

Douglas with Gabriel, carrying Alexandria's casket to the funeral director's car.

So, over the last few months, on and off, I’ve worked on creating a set of plans for the casket.  I created a fairly close approximation of her casket in Google Sketchup, so that other people can benefit from what I learned.  Hopefully it will help others.

You never know the path your life will take.  You never know what God will call upon you to do.  Sometimes his plan is so difficult to see.  But we must have faith, he’s never let us down before.

 

 

Child Casket Woodworking Plan

Child Casket Woodworking Plan

Child Casket Woodworking Plan

Child Casket Woodworking Plan

The Google Sketchup file can be found here:  Child Casket Woodworking Plan

Hardware:

Full Mortise Small Box Lock

Full Mortise Small Box Lock

 

 

 

 

 

 

Woodcraft Small Box Lock

Flange Hinge

Flange Hinge

 

 

 

 

 

 

Rockler Flange Hinge

 Posted by on December 10, 2012 at 9:44 am
Dec 072012
 

Last night Kimberly and I went to a grief panel.  A number of individuals sit on a panel, all of whom have lost a child for one reason or another.  They answered a list of 8 questions, in round-robin fashion, explaining what happened, how people reacted, how they coped.  One couple is from our church and have lost two children.  We have spoken to them before, they attended Alexandria’s 1 Month Birthday Party, they are incredible people.  As I heard their story again, from them, they said something I had taken for granted.  They had/have a wonderful church family which has provided them with terrific support.  It naively didn’t occur to me until last night that everyone in that church knew what to say and how to help us, because they had walked that walk with them.  They had learned what to say, how to help, how to comfort, how to support.  I am so sorry that they had to be the “trail blazers”, but we benefited, Alexandria benefited, from it so greatly.  Perhaps that’s why God led us to St. Matthew, he knew this time we were not strong enough to be the trail blazers.  I feel guilt for that.  I hope they know how much their support and help has meant to us.  They are good friends.

I had a rough time throughout the evening.  It made everything real.  It was hard to push things away.  Which brings me to the most terrifying revelation of the evening.  We walked out, talking, and even joking about every day life issues with our friends.  One of them asked if I’d ever met “Nancy”, the woman who facilitated the discussion.  I said “No, I’ve never seen her before.”  Kim gave me this odd look.  “What?”  “That’s Nancy, the councilor,”, Kim replied.  Kim had taken me to see a councilor, someone I’d seen several times and even blogged about in Pentecost.

I had no memory of her.  I didn’t recognize her.  I didn’t associate with her with anyone I’d ever known.  Unconsciously I knew I didn’t want to get close to this person at the meeting, which now I understand.  My mind had completely blocked her out.  “Didn’t you think it was odd that she called you by name?”  “I thought she read my name tag.

That’s a bit scary for me.  I can pull lyrics from songs I knew in my youth from just a few notes, I have a fairly good memory, albeit not with names…  but I know when I know someone.  I realized I couldn’t even picture the face of the councilor I’d seen.

Not sure what to do with that.  Not sure what this means.

 

 Posted by on December 7, 2012 at 8:32 am
Oct 112012
 

A year ago today I walked into Pastor Robert Appold’s office at St. Matthew Lutheran Church.  I had called him several days prior, explained I was someone who’d attended his church once or twice, and needed someone to talk to… some help.  Kimberly and I had learned of Alexandria’s diagnosis two months prior and were in complete mental and spiritual freefall.

I laid everything out for him, and I mean everything.  I told him about Aden, how we found out he had Down Syndrome when he was born, his deafness, the difficulties we’d had over the years.  Our loss of Matthew.  Our struggle to find a church home.  Alexandria.  I was going to lose my daughter.  I had to get my family through this.    I wanted all of my children to know God, even Alexandria, no matter how much or how little time we were given.  I had to be able to explain God, the afterlife, and death to our extremely inquisitive three year old.  We were lost, we were drowning, and needed help.

I can’t even imagine someone laying all that at my feet in an hour.  I feel a little guilty about that.  I often wonder if this type of thing shows up in his office every now and then…  Either way, I am very thankful God sent me there.  There were things Pastor Rob said during our conversation that confirmed for me I was in the right place, things I believe the Lord knew I’d need to hear to be comfortable.  Trusting does not come easy to me.  It takes me time to open up to people.  We spoke for quite a while and he believed his congregation would welcome us without fail.  He asked me to come on Sunday and either he or I could explain Aden’s condition, his behaviors, so that people would understand him better… and share what I could about our family.

Sunday came.  I sat in the back, hiding myself away.  I wasn’t sure I could do it, I wasn’t sure I could stand up in front of 200 strangers.  I lack a gift of public speaking.  Pastor spoke briefly to the congregation, then asked me to come up.  I looked out at all of these people and did the same thing, I laid it all out, from Aden to Alexandria.  My family is in crisis.  I need help.  Please help me.

I did not expect the reception I received after service…  they flocked to me afterwards.  They opened their hearts, hugged me, I was overwhelmed with support.  There were families there that had experience with losing a child, people who knew sign language, educators familiar with the developmentally disabled…  It was, and it is, the right place.   Luke 9:11 “So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.”  I never had a prayer answered so quickly and so completely.  Each step of the way through our journey with Alexandria the congregation of St. Matthew has been there with us.  Even now, as I struggle with her passing, they are with me. 

That day, a year ago, changed our lives.  I can never thank you enough for saving us.

 

 

 Posted by on October 11, 2012 at 5:00 pm
Aug 272012
 

We are coming up on 7 months since Alex’s death. At this point it almost seems like a dream. If it weren’t for the massive amount of pictures and video, the clothes hanging in our closet, and the tons of memories we created with her, I might question myself on that. Was it real? It reminds me of the Imagination Movers concert we took the boys to last April. A year and a half later it feels like – did we go there? did we really meet and talk with them? did that really happen? 

I feel like Alex was a celebrity.  Picture it – The limo driving up for the red carpet. The paparazzi cameras flashing. The crowd trying to get a good look. Trying to get eye contact, a wink, a smile, a wave – to be noticed by her. We were the ones that got to ride in the limo with her. We were nervous but we hopped in the car. As with any celebrity meeting, you want to say the quintessential, most perfect thing. So many things we wanted to make sure we said to her. So many things we wanted to make sure to do with her. We were graced with her presence and tried to savor every single moment we had with her not knowing how long the ride would last before her driver would drop us off and she would drive off into the sunset without us. I feel so priviledged that I spent her entire life with her. She was a bright shining star who’s light went out so quickly; a candle who’s flame lasted long enough to blow it out. And for that brief moment in time, I got to see and experience a life that few got to witness or be a part of.

My Little Celebrity

My Little Celebrity

Life is so short. We can be here one minute and not the next. And we have no idea when that minute will end.

This all reminded me of the movie “The Usual Suspects”. The part at the end where he says “and like that.. its gone” http://www.youtube.com/watch?v=IkJqKOb0ZhY

and these bible verses:

Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:14 NIV

Man is like a breath; his days are like a fleeting shadow. Psalms 144:4

I know in relation to the beginning of time, our life, let alone Alex’s brief life, is just a grain of sand on the beach. But like birthdays when you were little and it seemed an eternity until the next one, it seems like such a long time until we can be with Alex again. And that it where the emptiness lies.

 Posted by on August 27, 2012 at 10:45 am
Aug 042012
 

She left us 6 months ago today, but I find myself thinking more about her birth then her death.  Not her springing to life after her baptism, or the gasps of the staff in the room, but more about the good moments afterwards.   She had such incredibility cute ears, it was hard to keep them under the hat we had for her.  New baby skin is incredibly soft, her ears were super floppy.  Tiny little floppy perfect little ears.

Getting her dressed for the first time was a challenge.  I was so afraid I’d hurt her, and let me tell you she was one strong little lady.  She had no interest in having her her arms moved into sleeves.  Alexandria felt so fragile, I wanted to be so careful as to not hurt her.  One thing she did love about the experience was the warming lamps she was under.  In the photo below I was sure my hair was going to catch fire.  She was very content there, very happy, calm, when she laid there, at least while I wasn’t try to wrestle her into clothes…

Getting her dressed for the first time (12/16)

Once the boys arrived they were very interested….  Well, some of them.  Aden wasn’t, he knew the drill and you could see “oh man, that’s a bundle of trouble” in his eyes.  Gabriel was thrilled though, he knew momma was having a baby again and it fascinated him.  Ethan… wasn’t so sure, his facial expression was along the lines of “Where in the world did you get that?”

 

Ethan and Gabriel approaching for a first look (12/16)

 

Alexandria and Kimberly (12/16)

 

 

I was so incredibly happy.  We were getting time.  We were getting to meet her, to speak to her, sing, hold, cuddle… to love her.  It was scary, she’d have episodes and it could all abruptly end, but when she was happy and cooing the way small babies do, I’ve never been happier.  Even when she scrunched up her face to let us know she wasn’t terribly happy with being pulled from the warm, quite comfortable home inside momma…. I still beamed with pride and happiness.

Douglas and Alexandria (12/16)

 Gabriel too was proud and excited.  With me and NILMDTS taking pictures he had to grab momma’s camera and take some of his own.  He wanted to be a photographer like his daddy, to capture these moments with his sister…

Gabriel taking pictures (12/16)

 

It was such a perfect day, the first of many.  The holy spirit filled up that room, it felt so safe.  We were wrapped in it.  We prayed thanks, we held Him up who’d granted us such a wonderful season.  Thanks be to God.

Kim and Alexandria and me (12/16)

 Posted by on August 4, 2012 at 12:55 pm
Jul 192012
 

I’m a sentimental man.  I tend to observe anniversaries.  I remember important milestones, probably more then I should.  For a long time the day of my mother’s death was a hard one.  There are a few more, along those lines, that are what I would call “not great days.”  I focus on the past a lot, I know more then I should.  I pray often that God will free me of the ties of the past, give me the strength to remember with love.

The date of Alexandria’s death, I thought would be one of those days…. but I’ll get to that in a moment.

Kim and I have spoken about a couple we know, Aleisa and William, who have a young daughter Nora with Edwards Syndrome.  God has blessed them with an abundant faith.  Aleisa has seen three birds, on more then one occasion.  Usually this occurs when she’s looking to God for a sign, an acknowledgement, and seeing them gives her comfort, lets her know he’s watching over her and her family.  She feels it is a consistent sign from Him.  There are people who would discount things like this, some are in awe of it.  I believe God speaks to us in ways we sometimes don’t recognize and often tailors his messages and signs personally to each individual, in a manner they can interpret.

I wasn’t looking for any signs.  I was reading a post a week or so ago on Aleisa’s blog and she mentioned seeing three birds again, in her doctor’s office.  For just the smallest moment I thought, wow, I could really use that right now.  I could use a sign.  But I didn’t ask for one, and in the back of my mind I got the feeling that if given one I wouldn’t like the message anyway.  God’s news isn’t always fun to hear.   A few days later a friend of ours posted that she was pregnant.   As I’m reading through the comments from friends and relatives about the good news someone asked her what her due date was.  February 4th.  It hit me like a brick.  The day Alexandria left.  The one-year anniversary to boot.  I immediately wondered what the meaning behind that could be.   Was it just a coincidence?  If not, I was just… well I was hurt.  Don’t get me wrong.  I’m extremely happy for my friends and that they have another child on the way.  But this day was mine.  Selfish, right?  No one should be happy about “that” day.  It was a dark thought, and unworthy one.  After considering it, and praying about it, I began to think…  maybe this is supposed to tell me that February 4th isn’t to be marked like that.  She went to be with Jesus, she went home.  This was, in many respects, a good thing.  I should celebrate her life, not focus on her passing.  It was a good message, a good thought.  Being as human as I am, I pushed it out of my mind.  I didn’t want to hear it.  I mean, seriously?  What were the chances that a friend of ours would have a due date on the day of Alexandria’s passing…  that wasn’t a sign.  I didn’t want it to be a sign.  Nice thought that came to my mind afterwards, but not a sign.  I would ignore it.

This past Sunday another friend announced that his wife was also pregnant.  Last night, on their post, someone asked her due date.

February 4th.

Ok… ok.  I get the message.  This day will be one that good things happen on, it’s going to be “ok.”  It may be rough, but new miracles will abound.  Remember her, let go of the pain, celebrate her life not her death.  Trust God.

“Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”  Philippians 3:13-14

 

 

 

 

 

 Posted by on July 19, 2012 at 10:28 pm
Jul 042012
 

Michigan has entered in a new law that allows a more… robust version of fireworks to be legally used in the state this year.  Not having to get them from another state is a nicety, but I learned today it’s not without consequences. 

Today is the 5 month anniversery of Alexandria’s death.  You’d think on a day like today I’d be more then happy to blow some things up, but I wasn’t really in the mood.  We’re planning our yearly neighborhood BBQ and fireworks show for this weekend, and since no out of state driving is required, Gabriel and I went to the local fireworks store to pickup some rockets.  They had a neat firetruck there, which I allowed him to climb all over.  He wanted to know about each type of firework, and it was a good time for both of us.  It got my mind off of things.  Until we checked out.

The cashier was a nice young woman and Gabriel, in regular fashion, flirted like no other.  She told him how cute he was, he agreed.  *roll of the fathers eyes*  She asked him if he was 4 years old, and he said yes.  She proceeded to tell him she had a sister who had just turned five…..  I knew exactly where this was going to go.  It was like standing on the edge of a lake, teetering on the edge, you know you’re going to go in, you know what’s coming, but it’s all in slow motion…….  Gabriel paused and said, “My sister is baby Alex and she died, I miss her a lot.”  The cashier said it was sad, I don’t know if she believed him, but he continued, “she was very sick and very little when she died.”  It was hard to hear his voice say that.  I didn’t lose it, which was a start for me.  But I didn’t make eye contact with the cashier from that point, I knew that would set me off.  I did my best to keep my composure, and affirmed his feelings, “Yes Gabriel, we miss her very much.”  And we left.

All afternoon Gabriel brought her up and I’d talk with him about her.  Eventually he said something about not seeing her anymore, and I said we can see her in the pictures and videos we have.  I asked if he wanted too, and he was overjoyed that he could share his “book” with me.  He and Kimberly have been working on a book of his favorite pictures of her, something we have been told in counseling will help him.  I think it is.

 

Gabriel sharing his book of pictures

 Posted by on July 4, 2012 at 9:47 pm
Jun 172012
 

We went to church today and before service the preschool class had a special craft day.  Kim and I spent time with Gabriel making a “Jesus Hug Rug”.  It’s a fun little project where kids have something to remind them that Jesus is always with them when they pray, a prayer mat of sorts.  We painted his hands with fabric paint, pressed them down, wrote his name and the date.  All of the other kids did the same and a few of us fathers were threatened painted hands and sly grins. 🙂    Before the craft we all prayed and the kids were asked what they wanted to pray for.  Gabriel, ever so softly said, “Baby Alex cause she died.”  It hit me hard.  It took everything I had not to fall apart there.  I worry about him, he thinks of her and brings her up often.  It weights on him.  I want him to be ok.

I bet he wants me to be ok.

I miss her, but I honor her by still trying to be a good father to her brothers.  I have work yet to do.  I spent yesterday at a church retreat where we discussed Deuteronomy 6:7, ministering to your children and helping them with their own faith.  Today we worked in the yard as a family, on the new garden, on the landscaping…  It was not the day I dreaded.  Today was ok.   One day at a time.   She wouldn’t want her death to destroy me.

 

 Posted by on June 17, 2012 at 10:39 pm
Jun 072012
 

Four months post Alexandria’s death and I am still trying to figure out where we go from here. Last April when we found out we were expecting it seemed like everything had just fallen into place. A perfect plan. We always figured some day we’d move to the suburbs; seven months prior we had. We wanted good schools for the kids; we had the perfect placement for Aden. We wanted four children; we were about to have four children. We always wanted a girl; we were about to have our one girl. I remember being in the van driving onto our street to OneRepublic’s “Good Life” and thinking it just can’t get any better than this.

Then it all came crashing down.

Now I’m left thinking – I thought there was a plan??

I thought I knew exactly what it was and where we were going. Now, one day I’ll think maybe the plan is we have our 3 boys and cherish the memory of our perfect little girl, who could never be replaced. The next I’ll think but what about the dream of having a little girl to raise here on earth? I am constantly fighting myself – happy one minute with what I have, the next wanting it back the way it was supposed to be.

In an effort to figure out why these trisomies keep happening in our family, we sought out the help of a fertility center. I wanted to know what their protocol was for someone who had multiple losses, because really, babies with trisomy are usually miscarried – not brought to term like ours. The first visit consisted of reviewing our history. The doctor said what we’ve heard before “You’ve had a lot of bad luck.” He said he hadn’t seen a case like ours in at least 10 years. The recommendation was to do some labwork to check for things like autoimmune issues and schedule a sonohystogram to see if any of the pregnancies/loss had caused scarring.

The sonohystogram showed nothing abnormal. The labwork, however, came back all clear with the exception of the MTHFR gene mutation testing. This testing is sort of controversial and there are a lot of differing opinions on what it means and what to do about it. It has to do with how the body processes folic acid. Some believe there is a link between MTHFR mutations and recurrent miscarriage. Having more than one mutation can put you at risk for having blood clotting issues. There may possibly be a link between Alzheimer’s and MTHFR. There may be a link between MTHFR and depression. A few sites mention research done to see whether Down Syndrome or Trisomy 18 are linked to the gene mutations – it sounds like some points to yes and some to no. I tested positive for a single mutation of C677T meaning I am heterozygous for MTHFR C677T. Reading about this on the internet, some say this makes little difference since it’s only one mutation. They estimate up to half the population is positive for any one of the MTHFR mutations. Well, half the population doesn’t have children with Down Syndrome or Trisomy 18 so..

Now what?

Driving to the sonohystogram, mentally screaming “why me? why us?” I was listening to WAY FM, a Christian station here… something I didn’t used to do prior to Alex but a change because of Alex… I wanted to be bold and ask for a sign that He hadn’t forgotten about me. That He has a plan for us. I don’t like to do that because I don’t think it’s good to “test” God. I just thought, if you’re listening, I could really use a meaningful song right about now. I only had about 4 minutes left in the trip so the next song was going to be all I’d hear before I parked the van. The song that had been playing ended and a song I hadn’t heard before came on – Anthem Lights – “Outta My Mind”.

“Feelin’ like I got a front row seat
to watch everybody be happy
Can’t even paint a smile on my face,
it’s so hard to not complain

Gotta try not to say
O God, what about me
‘Cause I know that’s not the way
that I’m supposed to be

Get me outta my mind and into Your heart
It’s not about me, it’s not about me
So I’m gonna start playin’ my part in Your design
Now is the time Get me outta my mind
Outta my mind

There’s a bigger picture on display
and it’s starting to come in focus
Causing me to see the ones in need
outside my little world
Gotta try, just to say
O God, what can I do
Doesn’t matter what it takes,
I wanna lead them all to You…”

HA! That obviously fit too perfectly. I think He was listening don’t you? 😀

Ok, so, as hard as it is, I know there is a bigger picture and I know I don’t have much if any control over it. I need to be ok with maybe we’ll have more kids; maybe we won’t. Maybe it’s in the plan; maybe it’s not. Whatever He has in store for me, for us, is a better plan than what I had in mind. I need to start playing my part. Because it’s not about me.

 

 Posted by on June 7, 2012 at 9:03 am
May 272012
 

Acts 2:25  David said about him: “‘I saw the Lord always before me. Because he is at my right hand, I will not be shaken.”

Lately I do not know what to say, or post.  I’ve started a few posts, but have no interest or will to finish them, mostly because the nature of them is dark.  Kim and I have seen a grief counselor a few times, but I just can not continue to go there.  I feel when I am there, and I can not keep things together.  My guard slips and the impact lasts for days.  I can’t operate like that.  I just need time.  I need to come to grips with this on my own terms.

Kim and the boys went to Midland this weekend so I could work on our garden in the back.  I have a few retaining walls that need to be built, it’s slow going, but I enjoy the work for the most part.  The house is too empty though.  It’s too quiet.

At Pentecost everyone was bewildered and amazed at what happened, and as Pastor Nick said this morning often times we ourselves are bewildered at God’s plan.  We want to understand and learn more.  Like him, I’m the type that needs as much information as possible, I like to know all aspects of something.  I know she touched and continues to touch people’s lives.  I have tried to help other families who are just starting their journeys with Edwards Syndrome, to help others with what we learned.    … But even so…  my bewilderment remains.  I feel I will not understand this, until I see her again.

 Posted by on May 27, 2012 at 8:08 pm
May 182012
 

I had to come up with a devotion for the women’s bible study I attend on Fridays. The thought terrified me especially because I come late to bible study and miss the devotion almost every week so many times I don’t know what was said or how it’s done. I was reviewing what the past week’s homework talked about (we are doing a Beth Moore study called The Psalms of Ascent) trying to come up with something fitting. Admittedly, writing is not one of my favorite things. But much like my blog posts  there is something that starts to take shape until I feel like my insides are bursting and the words need to come out. So here’s the text of my devotion. I could not read it without crying. These women have been my help when I thought I could no longer walk the road. I truly could not have made it through the last 8 months without them all.

=======================================

I have really enjoyed this bible study of the Psalms of Ascent. It was a good picture for me to think of life as a pilgrimage, trying to stick to the path on our way to Jesus. To think of life as a journey that will be over all too soon so make the most of it. I kept thinking of people back then traveling to the feasts. I pictured them walking along a dirt road. They did not travel alone, that would make them vulnerable. I could imagine someone strapped down with everything they’d need on the trip, walking down the road, side by side with family, friends, and strangers. I could picture that person suddenly  tripping, stumbling along the path and others rushing over to hold him up lest he fall and his belongings crash down around him. Once everyone was steady, they’d continue on their pilgrimage, the destination always in mind.

Carry each other

 Galatians 6:2 Carry each other’s burdens, and in this way you will fulfill the law of Christ.

 This study has given me a sense of clarity on what the purpose of life is. We are going through this earthly life and we will reach our destination at the end. But what are you doing on your journey between now and then? We are all on the road, carrying our belongings, making our pilgrimage. Sometimes the weight of our load is too much for us to bear. Sometimes we take a wrong turn. When the road gets hard are you going to give up? When you get lost will you find your way back? What are you going to do when you stumble and fall? And when it’s your neighbor, are you going to help them or sit idly by and watch them fall?

 Part of the US Soldier’s creed reads:
                “I will always place the mission first.
                I will never accept defeat.
                I will never quit.
                I will never leave a fallen comrade.”

Our family tried to go it alone for 10 years. I can tell you that is a very lonely road travelling by yourself, no one to help you. With no one to keep you focused on the destination, you get bogged down in the things that don’t matter. Quoting a website I found called the Journey: “You cannot do community alone. The Christian life is to be lived together. We need each other. There is no such thing as a Christian flying solo.” And another website called Hip Hop Devotions: “If you’re not a member of a church, then find one, especially one where there are people you can fellowship with; it’ll be one of the best moves you can make. Next to that, find other believers that you can build and fellowship with; you should be able to have them push you, and you should also be pushing them towards holiness. God wants us to grow together as a single body, but that is impossible if we continue to live and walk as if we’re in this all alone.”

I think that is true even of some people who go to church – they continue to live and walk as if they’re in this all alone. We need to lean on each other, encourage each other, place the mission first, never accept defeat, never quit and never leave a fallen comrade. I like to think of church like an AA meeting, except we’re there because we all sin. If we would just stand up, say our names and admit we’re not perfect, others can rush to our aid, pick us back up, and set us back on the right path. The more we go to the meetings, the less likely we are to fall off the wagon.

Hebrews 10:24-25
And let us consider how we may spur one another on toward love and good deeds. Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another–and all the more as you see the Day approaching.

Dear God, thank you for St. Matthew’s Church, for the community here and specifically this women’s bible study. Stand with us as we stand shoulder to shoulder, allowing no opposition to come between us. May we care enough to be involved in the lives of others, helping each other back on our feet as we continue our pilgrimage.   Amen.

 Posted by on May 18, 2012 at 1:03 pm
May 152012
 

A few weeks ago I began to consider what to do for Mother’s Day for Kimberly.  I know many families go out to eat on Mother’s Day, but the thought of being surrounded by many other mothers with daughters did not seem like a good idea.  What to do…  Last year I bought Kimberly a peanut butter cheesecake from The Cheesecake Factory for one of her birthday gifts.  She loved it, but when I went looking the cost to ship them was now astronomical (probably because of the holiday).  The cheesecake would have cost upwards of $70.  I didn’t want to break the bank, but she loved that cheesecake…  So I researched and found a recipe for the exact cheesecake she loved.  Bet I could make it for less then $70…  It took 4 days to build, 8 layers of peanutbuttery chocolate cheesecake goodness.  I made cards with the boys, carefully helping Aden spell out Happy Mother’s Day.  He worked so hard on it.  Gabriel created a few pictures and stamped a bunch of hearts.  During dinner he looked at Kim and said, “Don’t look in the cabinet, we made you cards and hid them there.”   🙂

On Friday, our friend Joy from across the street came by as the boys and I were playing out in the front yard…  “What are you doing for mothers day?”  Not much.  I told her about the cheesecake, but that’d probably stay home.  She hits me with this idea of getting some neighbors together for a mother’s day BBQ.  “Sure, why not, sounds good.”  We’ve done that before, and having all the kids run around playing together is always fun.  Before we knew it just about everyone was going to come, almost 40 people, with food, wine, quite a party…  We setup a ton of tables in my driveway and I grilled hot dogs and hamburgers, everyone brought a dish…  What an incredible time.  We could have been stuck inside, focusing on what was missing, on Alexandria not being here… but instead were given a wonderful day of food, of thanks, with friends.  It was a perfect, warm, sunny day.  I couldn’t have asked for a better group of people to have as my neighborhood, God has really blessed us with a fantastic place to raise the kids.

 

 

 Posted by on May 15, 2012 at 8:21 pm
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. 

http://iwillcarryyou.wordpress.com/

God Bless,

Douglas

 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.

Thursday

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.

Friday

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.

Saturday

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
Apr 042012
 

Alexandria just born...

Stephanie and Alexandria

I didn’t sleep much while Alexandria was here, but I vividly remember everything about her.  Her eyes, nose, wonderfully floppy little ears…  Kim’s favorite was when she would get “wrinkly forehead”.  When she’d stretch or look around her forehead would wrinkle, it was very cute (my favorite picture on the first page shows this).  The faces and names of everyone who came by and brought food, prayers, gifts, helped us at church, held us up, however…  much of that is a blur.  I feel guilty at times about that, I am so hopeful that I conveyed the gratitude and thanks to everyone as I saw them.

You can never know how much what each of you did meant to us.  Kim and I were given a gift that can never be repaid.  We would never have had the time we did with Alexandria if it hadn’t been for all of the help, the meals, the advice from Kim’s doctor, our friends, our family, and many people who reached out and helped without knowing us well.  Once, Kim and I went to an Advent service and all of a sudden she disappeared.  I couldn’t find her anywhere.  The ladies at her bible study pulled her into room and prayed over her and Alexandria, showered her with gifts and food.  It happened right when it needed too.  We were so exhausted that night, we almost didn’t even go to church…  but something whispered into Kim’s soul and pushed us out the door.  We so needed that.   Visits to Kim’s OB were much the same way… her doctor seemed to know what to say, how to comfort when we needed it, not only of Kimberly but of me as well.   The people that openly embraced me when I just couldn’t hold it together anymore….  So many people… how to ever let them know how much they meant?

Gabriel and Alexandria

Gabriel and Alexandria

God revealed himself through so many of you in her short life.  Thank you to all of you.  Those we saw and those we did not see.  For all of the people who prayed for us throughout the world, who walked this journey with us. 

Aden Kissing Alexandria

Aden giving Alexandria a kiss...

She left us 2 months ago.  Thank you for helping make her 50 days so special, so perfect, so filled with love, care, and joy.  You all made a difference.

Alexandria at her 1 Month Birthday

Alexandria at her 1 Month Birthday

In Christ,
Douglas

 Posted by on April 4, 2012 at 9:28 pm
Mar 312012
 

I am finding that my grief comes in cycles and has triggers.  Saturday mornings are difficult for me, hell the whole day just bites.  I wasn’t sure it was normal for me to feel that way, to grieve that way.  I almost felt like I didn’t have permission to feel that way, as strange as that sounds.  Either way, the day is just a reminder.  This past week someone else in my Trisomy 18 parents support group mentioned that they have that feeling, to which I immediately seconded…  soon I learned there were many other parents who had the same thing.  Those that were earlier on in the process, like me, found the particular day to be a problem every week.  Others, as time moved on, found it became less and less… just the day of the month.  It’s comforting to know I’m not insane… or at least no more insane then I usually am.

When Alexandria was born Gabriel went down with his grandparents and purchased a “Baby Girl” balloon from the hospital gift shop.  It survived the trip home.  It survived all three boys batting it around the house.  It eventually found it’s way into our kitchen.  He bought that balloon on December 17th…  It’s March 31st and it’s still up… but today it began to struggle.  Kim and I were sitting in the living room talking when she noticed….  “The balloon is starting to come down.”   “I know.”  I didn’t bother turning around, I had seen it earlier…  Watching it for a while she said, “It’s a real fighter.”  I thought about how much Alexandria fought, how much of a fighter she was… tears began to well up in my eyes…  reading my mind Kim looked me in the eyes and said, “Alexandria fought so hard to stay with us too.”  “Yes, she did.

All good things.

 

 Posted by on March 31, 2012 at 5:20 pm
Mar 252012
 
Alexandria, Douglas, reading I love you all the time, d50

Douglas reading to Alexandria (5:30am)

Ethan has begun to speak a lot more in the last few weeks.  His baby babble is just starting to map to English and he really enjoys having books read to him.

Sitting in my office this past week, with Aden and Gabriel were sitting at my desk playing on PBSKids, I stared out the window at the area that would soon be our garden.  Another one of those dreams, having a garden, something to teach the kids… something to teach Alexandria.  A chance I won’t ever get.  Ethan walked up to me, “book book book”.  I didn’t turn from looking outside right away and he became insistant, “BOOK! BOOK! BOOK!”.  “Ok,” I said, as I turned my head.  He was holding, “I Love You all the Time.”  The last book I read Alexandria.  It’s a book all of the kids adore.  I thought I put that book away.  I took it out of his hands and set it on the table next to us, hoping he’d lose interest.  He didn’t, he scrambled up onto the couch, grabbed the book, gave me his mad stair, “BOOK!!”  He flopped down in my lap.  I read it to him, but could not contain my emotions.  I started crying on the second page.  He looked at me with those big blue eyes, not understanding, but still kept turning the pages.  I continued to read.  Gabriel, got up from his seat and walked over to me… he started to pat my arm gently and say, “It’s gonna be all right.  It’s gonna be all right…  I miss baby Alex too.”

Ethan mimicked him.

I have such good boys, but I feel so bad that they have to deal with a father like me.  I should be the strong one, but I am so terribly empty.  I’m haunted by wishes.. I wished I’d done this before she left…. I wished I’d taken more video.

I wish she was here.

I took her crib down tonight.  I knew I’d never be ready, and I wasn’t.  But it was time.

 Posted by on March 25, 2012 at 7:46 pm
Mar 172012
 

We spent the last nine years looking for a church family. I knew what it felt like to have an extended family of people who cared and raised you up in a Christ setting along with your parents. I grew up in a small country United Methodist church where everyone knew everybody. The fellowship.. the helping each other through the good times and bad. We wanted that for our future family. Before Aden was born we had been members at a small country Lutheran church for a short time. For some reason we never felt like we were part of them. My pregnancy with him was difficult. I was sick and nauseous throughout so going to the church (which was a 25 minute drive away) was difficult. Our attendance decreased. After he was born we never went back. Our grief, coupled with the distance, Aden’s uncertain medical conditions, and a “not so great fit” made returning not seem important. We were also angry at God and at a loss as to what had just happened. He was supposed to be a healthy, typical kid.

We went to counseling and were told it was ok to be angry with God. He was God. He could handle it. I think that’s good advice. He’s your Heavenly Father. You’d want your kids to turn to you even if they’re mad at you right? Turn your back on God and He can’t help you.

As the years went on, we checked out other area churches here and there. It was hard to go with the kids because they were so young. We’d go when we had a weekend without them so we could really check things out. We mostly went to big churches that had special needs ministries for kids. Doug and I were both used to small churches though. We’d find a church that had a good special needs program but the service didn’t seem like a good fit for us. Or liked the service but not the special needs program. I felt like we needed to get back to our roots of small churches in the denominations we were used to.

One Sunday we checked out St Matthew Lutheran Church. It was a crazy, atypical Sunday and we unfortunately had the kids with us. Aden was freaked out over the people in costumes. They apologized over and over that this wasn’t a normal service. We went a couple more times and stopped when it just got too hard – it was winter and in our house that means sick kids most of the time. Then we found out we were pregnant with Alexandria. I have all day all nine months morning sickness. It just seemed all the more difficult to go.

When we were told about Alexandria’s diagnosis, I had many thoughts go through my head. One of my internet friends, who I’ve never met but knows more than any of my other friends what it’s like to be Aden’s mom, said even though Alex hadn’t been born yet I still needed to parent her. I didn’t really get at first what that meant. How could I parent a baby that wasn’t born yet? Then I knew – what if Alex wasn’t born alive? There were still things she could experience being in the womb. I could still set priorities. What would my priorities for this – or any other child – be especially if I knew they might not be here long? God. She needed to know God. Even inside me I could take her to church. She could still feel the presence. She could hear it. Just not see it.

Another thought was – what are we going to tell Gabriel? We knew even if we could explain what was happening to Alex to Aden, with his cognitive impairment, he would still not understand. Ethan was just about to turn a year old so he would have no idea either. But Gabriel. What to tell him? And then the realization hit that although Doug and I knew that Alex would die and go to heaven to be with Jesus and it would all be ok, Gabriel did not.

We desperately needed a church. We needed to run to God.

Doug, brave soul that his is and I am so thankful for that, met with the Pastor at St Matthew. He told him our life story and how we were in desperate times. We needed help teaching all our children to live Christ centered lives – even Alex, though we didn’t know whether she would be with us for any time or not. Somehow we would make it work for Aden. We needed to figure it all out and fast. The next Sunday Doug stood up in front of the church, poured out his soul and asked for help.

The Pastor and people at St Matthew flocked to us. Turns out they had already been through the experience of a family who lost two precious babies. They were ready.

People started introducing themselves in droves. I still have no idea most of their names which is rather embarrassing. There are just so many of them. Doug was directed to a men’s bible study. I went to a women’s bible study. We joined a small group and went every week with the kids (and continue to do so). People told us they were praying for us. People were asking us what they could do to help. They sent us Christmas cards. There was the “baby shower“. Pastor camped out in the hospital waiting room when she was born so he could be there during her first minutes with us and baptize her. When we came home, that first Monday night someone brought us a meal and we had carolers at our door. They set up a schedule where every week night someone would bring us food. We came to church and everyone surrounded Alex waiting to see her. Most of the people holding her in her video are church people. When she died, they planned and provided her funeral. They sent sympathy cards. They checked in with us to see how we were doing. It was very overwhelming to feel so much love from complete strangers. They made us feel welcome, like family. This was what we had been looking for all along.

I am so grateful to Alexandria that she led us to a church. It was her gift to us. We are so sad she isn’t with us anymore but glad that we have been given an extended family to help remember her and get us through the years to come. Thank you is not enough but thank you to everyone at St Matthew’s.

 Posted by on March 17, 2012 at 6:25 pm