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,

 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
Mar 122012

I often look backward in time and think about the path my life has followed. What if I had made a different decision along the way? How would the course of my life have changed? Kind of like the “Choose Your Own Adventure” books I used to read as a kid. There are certain forks in the road where you have to make a choice and that choice has great weight and a different outcome.

There have been times in my life where major decisions needed to be made and I could sense that they were turning points. One of them was when we decided to buy our first house. This was before we had any children. We looked at and talked about two different options. Should we buy the nice forever house in the quiet suburbs with the wrap around porch and the white picket fence where we’d raise our perfect children in an award winning school district? Or should we buy the fixer-upper in the city, gut and rebuild it, and experience a life of unknowns to be able to say later we’d done something we’d always wanted to do? I got the feeling when we chose the city we were choosing a life of great highs and lows and it would cause us to grow into deeper individuals. A life that might be hard work but it would be worth it. A life well lived. If we had chosen the suburbs we would’ve been choosing the hum-drum, middle of the road, dare I say – a life with maybe not as much meaning? When we saw our house we knew it was the one. The seller changed his mind on selling it. Doug persuaded him. It all eventually fell into place. No matter the obstacles put in our path, the house was ours. Later we would surmise that part of the reason we were led to that house was Aden. The special ed services he needed were available at our city house, not at the house in the suburbs. What would’ve happened if we’d picked the suburbs?

Another instance was when Aden was five years old and it was determined he was not getting enough benefit from his cochlear implants to listen and speak. We had a choice to make – send him to the center-based county-wide cognitive impaired school or the local regular ed school with the cognitive impaired classroom. My first instinct was send him to the regular ed school. We visited the center-based school and I went home and cried. The center-based school was for moderate, severe and multiply severely impaired children. It was hard to see all the kids there that needed so much help. Even though I knew he had significant cognitive impairment it was a whole different thing to acknowledge it by sending him there. The staff at his current school did some digging around and advised us to take the center-based placement. They had heard nothing but good things about the teacher he would be placed with there. Though I didn’t think that was the path to take, we took that leap of faith and sent him. Looking back now we know that was just what Aden needed. It provided the stepping stone to place him in our current school district. What would’ve happened if we’d picked the local school?

Two years ago we were told Aden needed a school program that could challenge him more. We were going to have to move. We looked high and low for a house with our specifications in our price range. We wanted to be moved in before the new school year started. It took months and it was getting down to the wire, but we finally found a house we thought would work. We saw it several times. We even went in and took measurements and tons of pictures to determine where all our stuff would go. We picked bedrooms for the kids. We talked about all the changes we wanted to do to it. The seller seemed desperate. Their realtor even called us to see where we were on making a decision. We put in our offer and it was rejected outright with no counter offer. They did not want to hear from us again. We were hysterical. It was April and school started in just over four months. We needed residency in order for the school district to accept Aden and put all his services in place. I was pregnant with Ethan, due in August. We wanted to be moved in as soon as possible. There were no other options.

About a week later I happened to be looking through the listings and saw a listing I had seen many times before – a brand new house in a subdivision. The specs were exactly what we were looking for but I had not considered it because a) we loved houses with character – we lived in a 1920s house b) it was right next to the highway and we were trying to avoid highways, airports and train tracks and c) none of that mattered anyway – there was no time to build. I finally showed it to Doug on a whim and said “see, it even has the second floor laundry we love in our current house.” I had no idea he would immediately jump on seeing it. Turned out when he went to see it the house was almost finished but someone had bought it that very morning. The only available lot in the subdivision was in a location we were less than thrilled with. But during the time we were looking at it, the financing fell through on another empty lot across the street. One we liked. We immediately put down a deposit to hold the land for 48hrs so we could think about it and the rest is history. It’s just what we wanted and needed – in a good location, close to the school, has the layout we needed, located on a private drive so no worries about traffic for escape artist Aden, big backyard, friendly neighbors, tons of kids around. Because we had it built we could also put in other things to accommodate our needs like expanding the garage and putting in hearing-impaired smoke detectors. So much better than the house we put an offer on. What if that other house hadn’t fallen through?

When Ethan was seven months old I remember driving onto our street and thinking, this is it. It just can’t get any better than this. Doug has a good job, we have a nice, new house, three great kids, great school. Then we found out we were unexpectedly pregnant with Alex. At first I was scared. Ethan wasn’t even sleeping through the night so I was still a bit crazy from the sleep deprivation. Then I had an overwhelming sense that this was the way the path was supposed to go. We wanted four kids just not that soon. Someone at the time said “If you want to make God laugh, tell Him your plans.” So I was going to go with His plan knowing it must be better than mine.

I feel like some things in life are course corrections. That house we were going to buy was a sure thing. The only other offer was a land contract and the realtor said the seller wasn’t interested. It was like God stepped in and said “No, that’s not where your life is supposed to go. Here’s the path I’ve chosen for you.” I thought I knew exactly where our lives were going. I could picture it. There was a sense of relief in knowing. Then Alex’s life and death changed the course of our lives. We are on a different path than we were just eight months ago. It wasn’t my plan. It wasn’t what I wanted. It wasn’t what I thought would happen. Now I feel like I’ve lost my way, like I’m on a map where the road just disappears and there’s no way to know where it goes. I wish He would just tell me where to go and what to do. I’m waiting for the course correction that puts me back where I thought I was supposed to be. Will it ever come? What if His path and the one I wanted aren’t the same? How do I accept that?

 Posted by on March 12, 2012 at 10:31 pm
Mar 082012

A few days ago our video of Alexandria’s life was posted in a trisomy 18 facebook group.  We received a few comments on YouTube and as I began clicking on links here and there.  I stumbled upon a few videos from a family that was in the midst of having a child with trisomy 18.   Their I left a comment on one of their videos letting them know that I was praying for them.  A few days later we received a comment on our website from Aleisa with an interest in talking to Kim and I.  We exchanged a few e-mails and Tuesday night Kim and I went over their blog (http://iwillcarryyou.wordpress.com/).  Their story is very inspiring and many of the things they talk about on their blog are things Kim and I thought and felt.  I’d wish their blog had existed when we were going through all of this, I know it will help people.

Kim and I spoke with Aleisa and William last night for an hour and 40 minutes over the phone.  It was a great conversation and they are incredible people.  We shared many of the things we experienced with them and answered their questions as best we could.   I remember being where they are, and much of what they said were things we felt and feel.  I hope the information we gave them is helpful.  I pray that God will grant them time with their little girl.

It was a healing moment for me.   Talking to them, sharing Alexandria’s life, really made me feel better.  I hope we can keep in touch.

Side note:  I had them review this post prior to making it public, to make sure they were comfortable with me mentioning them.  We’ve been given permission to share their story and their blog (referenced above).  They are also hopeful that their story will help others, and I am sure that it will.


 Posted by on March 8, 2012 at 8:00 pm