After She Left – Page 2 – Alexandria's Journey

Running to God

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.

On the Right Path?

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?

Crossing Paths

2nd Month (After), After She Left 2 Responses »

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.

My Different Place, One Month Later

1st Month (After), After She Left No Responses »

Mar 042012

She left us a month ago.

Mid week this past week we met with Jessica and Dawn from hospice and I couldn’t stop crying. It was the first time they came to see us at the house since she passed and it was as if every wall I’d carefully built to hold myself together just crumbled. I’m glad that we saw them though, it was good to see them. They told us that our pediatrician has asked the head of perinatal-hospice to speak at a conference of family practice doctors. It’s good to know the existence of the program is being spread so that others can be helped by HoM. The last few days have been rough for me. I’m not handling it well. Both of them could see that, I couldn’t keep the curtain up to hide it in front of them. I can hold it together for work, I can put on the good show, most of the time. It’s not a good distraction any longer though. There are times it’s unbearable to be in the office. Getting up, getting dressed, brushing my teeth seem pointless. But, I have a family that depends on me, and two mortgages to pay. So I get up. I brush my teeth. I go into the office. I hate it.

I look at pictures of her… and I can feel her in my arms. I can feel her weight, the softness of the blankets, her smell, her sounds. No matter how much it hurts though, no matter how much I want her back I won’t get her back.

I think that many of us hope that when we pass our loved ones with be standing there, waiting. They’ll hug us, love us, and walk us into heaven. For a long time I’ve hoped my mother will be waiting for me.

I’m not hoping for that anymore. I’m not even praying for it. I’m not afraid of death. I’m not even concerned with the pain of dying anymore. I’m praying that God will put me back there, back to February 4th, 2012. I’m praying that he’ll put me there, so that when she dies I’m waiting for her. I’m there to pick her up out of my own arms. I don’t want her to be afraid. I want her to open her eyes in the afterlife and I’m smiling, arms open, and will carry her in my arms into the next life. It’ll be like she fell asleep and awoke in the most beautiful and comforting dream with me still holding her.

I hope he grants me that prayer. I want nothing more in this world or the next.

Angels Among Us

1st Month (After), After She Left 1 Response »

Feb 282012

I feel the need to go back in time 9 years, 3.5 months ago and share something that happen to us even though it may seem like it has very little to do with Alexandria. Actually, a little farther back than that.

At that time I was pregnant with Aden. I was wonderfully, blissfully unaware of his diagnoses. I was 26 years old. My triple or quad screen (can’t remember what I had done) came back just fine. We came out of our 20 week ultrasound knowing we were having a boy and they had seen dilated kidneys. We were told not to worry. It was a common thing and they would just do another ultrasound in a few weeks. I don’t remember doing any research on what that meant. Remember – blissfully unaware that problems could occur. When they did another ultrasound the dilated kidneys were gone but one of his arms measured smaller than the other. What?? The family physician/OB said he was probably laying on that arm and they didn’t get a good measurement. Still, blissfully unaware.

One Saturday we went shopping for baby things at Meijer because they were having one of their “Super Saturday” sales. We went to a Meijer that was not our “regular” store. I remember standing in the rather long checkout line twiddling my thumbs. I think I was 7 or 8 months pregnant so my condition was rather obvious. There was a woman in front of us who looked a bit frazzled, tired, buying school supplies and other misc things. She looked at me for a moment and then asked if we were having a boy or a girl. Then she told me about her kids – an older girl and a younger boy who had Down Syndrome. I said to her “I’m so sorry” (which I now know is something you DON’T say when someone tells you that.) She talked about how hard it was, how she quit her business to stay home with him, how money was tight. We talked a bit more and then it was her turn to checkout so she wished us well, got through the checkout, grabbed her things, smiled at us and left. I would not remember her or this story until after Aden was born. And then I would never forget her, wanting to go back and tell her she was not alone.

The day Aden was born I could arguably say was one of the worst days of my life – much like August 10th was with Alexandria. It was diagnosis day and his birth day all in one. Doug pulled the Dr aside and said “He has Down Syndrome doesn’t he.” She wasn’t sure because in true unique Aden fashion he tried to stand up when they weighed him. He then failed his hearing test. I spent days in the hospital bed, holding Aden who seemed suddenly like some alien being rather than my flesh and blood, and sobbing my eyes out. I remember hearing Aero-Med landing on the roof and thinking to myself – perspective.. remember, someone else has it worse than you right now. The hospital social worker came in and all I could talk about was how all our dreams were shattered. We couldn’t have anymore kids – what if they had this too? That meant no future grand-kids. Our family would end here. And how in the world were we going to raise this child? Think of all the problems he’ll have, how hard everything will be for him. For us. There would be no “empty nest” everyone talks about. We would have a perpetual child. We would never be alone again.

Aden was born on a Sunday afternoon. Monday, another baby – a girl – was born also having Down Syndrome. Her parents knew ahead of time. How you might ask? Because their 20 week ultrasound had shown a massive heart defect – something Aden was blessed not to have and also why his condition went undetected. They had a lot of preparation time and worry time, time to read up on Down Syndrome, time to talk to the Down Syndrome Association, time to meet other kids with Down Syndrome. They also had lots of time to stress over the fact that within hours of birth their daughter would need life saving open heart surgery. In their time of uncertainty they reached out to us and talked about how we needed time to absorb all this.

I went home on Wednesday. I think they were afraid to send me home before that since I wasn’t handling things so well. Aden had jaundice and they wanted to keep him overnight still. When we went to pick him up the next day the nurses told us about another woman at the hospital that just had a baby. She and the nurses had been talking about how she had a 2 year old son with Down Syndrome and now just had his younger (healthy) brother. She agreed to meet us and talk about her story.

We finally went to get Aden all packed up and ready to go home. I gave the nurse his special “going home” clothes to put on him. As she was dressing him she mentioned her then tween daughter had Down Syndrome. We bombarded her with questions as we had everyone else we’d talked to. Her answers were different though. They seemed vague and had a hint of “we don’t think about her Down Syndrome much anymore.”

I believe all these people were sent to us. The woman at Meijer was sent to prepare us, to plant the seed that things don’t always go as you think and life could be a struggle. The woman at the hospital who knew ahead of time was sent to give us a glimpse of how stressful things could have been had we known ahead of time and health issues we could have been dealing with. The woman with the 2 year old was sent to show us that some day maybe we too could reclaim the dream of a bigger family. (Oddly enough, we figured out we had met her before as a customer a few months back at her antique store.) The discharge nurse was sent to show us that this might all seem like a big scary deal right now but some day maybe it wouldn’t. What are the odds of all those people being at the hospital all at the same time as us? By the way, the discharge nurse told us it was not her usual day to work.

“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.” (Unknown)

And that’s what He did for us. In the midst of our weakness, uncertainty and fear He sent us people to give us strength. It was quite an elaborate plan. I saw instances of that in our journey with Alexandria too. With Alex there are stories like us showing up at church and being told “You have to meet this couple that goes here. They went through this too.” Or the day we didn’t have anything to eat for lunch and were debating one of us leaving the house (a scary thing in those first few days) and a friend called to say she was having food delivered. Or my despair at realizing I’d never bought her a “1st Christmas” ornament but when I went out to the mailbox I discovered a friend had sent one to us. And all the emails, phone calls and visits all at times when we needed them most.

When you think you are all alone and God isn’t watching, look back. Were you really alone?

(On a side note, last Monday we showed up for a new session of Aden’s adaptive swimming lessons. There are always 2 kids per session. The other kid in our session turned out to be none other than the then 2 year old mentioned above. We had not seen his mother since Aden was 1 year old – we visited her antique store a few times after seeing her at the hospital but then lost contact. This was the first time they had ever been at this pool. I wonder why they have been sent to us this time?)

In a Different Place

1st Month (After), After She Left 2 Responses »

Feb 242012

Doug has posted a couple times about how things have been since Alexandria’s death. I figured I should also document my perspective because, as we are two different people, we are also in two different places in grief.

People ask us all the time how we are doing.. with an “it must be so hard” look on their faces. I have to say, August 10th – the day she was diagnosed – was the hardest day for me on this whole journey, not February 4th when she passed away. One minute Doug and I were discussing girl names and how the family would change with a girl presence. The next, I remember sitting in the OB’s office with my mouth hanging open while she explained the things they’d seen on ultrasound. I remember thinking “Oh my God.. this can’t be happening.” I remember Doug leaving the room for a moment (to call my parents to get them here asap) and me turning to her and saying “I don’t know if I can do this again.” I remember dry heaving… coughing… choking. When I finally had it together enough to go home, I remember being unable to go back through the waiting room where all the other pregnant women were sitting. We returned home without our kids (who were being watched by a friend in our old neighborhood). As the van door closed, Doug called out to our neighbors to come quickly. He left to get the boys while they sat with me hugging me, holding me as I sobbed. Then there were the phone calls to family. My parents came to look after the boys while I stayed in bed unable to be a part of a world that was going on as if this horrible thing had never happened.

Some mothers who carry babies with fatal diagnoses will tell you many times the diagnosis is more scary than the thought of losing their child. I think partly because it’s the day you find out the world as you know it is completely different than you hoped and dreamed for your child. It’s a day of complete unknown. By the time you get to your child’s death you’ve had months of anticipation of that very day and it’s no longer the huge shock it was when you found out.

I also think men and women have very different experiences. Women carry the baby in their bodies for the duration. You get to know your child in utero. There was not one second of one day that I could forget about Alex. She was with me all the time. Her diagnosis was with me all the time. There was no escaping or forgetting about it. Every kick, every hiccup. Every morning I’d wake up and maybe for a split second I’d think “We’re having a baby!” and then came the realization of the nightmare we were in.

With men, they really don’t bond or get to know the baby until birth. They go to work and get distracted. Maybe be able to forget about it for a while. It’s not living with them.

I spent 4 1/2 months anticipating Alex’s death prior to her birth. The Drs kept saying she could die at any time. At first I didn’t want to hope for her to be born alive. It seemed impossible. There were 20 more weeks to go. Doug and I went in weekly for heartbeat checks and I held my breath waiting for the Dr to find it each time. I read story after story of women in the same situation who lost their babies after carrying them 22, 28, 32, 36, even 41 weeks. The closer we got to her due date the more I feared that my hope of her being alive would suddenly end – that she would be stillborn and I would never look into her eyes and have her hear how much I loved her. How much I wanted her.

We finally made it to our induction day. Even then I knew the odds of her making it through birth were not the greatest. We listened to her heartbeat a couple times but ultimately decided not to have heart monitoring during the birth. We felt if she started to have trouble there would be a franticness to the birth, perhaps a sense of helplessness if we knew she was dying as she was coming out. When she did make her way into the world she opened her eyes wide and looked around in wonder. I don’t remember any of my other kids doing that. They placed her on me. She was not breathing. I had an awful feeling she would never take a breath. She would die like this, laying on me, looking up at me while I looked back, unable to help her. When miraculously (and I do not use that word lightly here.. it WAS a miracle) with no intervention, she started coughing and breathing at the word “Amen” after the Lord’s Prayer, I knew that every single day she was here would be a gift. In my mind she had died. The joy I experienced when she “came back to life” is indescribable. What I thought would be 5 minutes turned into 50 days I never thought we would have. I think about her life and sometimes I’m sad at what we are missing but most of the time I smile.

Contrast that with Doug, who expected her to be alive. He had a never-ending hope I did not have. I’m glad he did. I needed to see that and subsequently develop hopes and dreams – “the bucket list” – for her. We needed to have memories and important events to look back on and cherish after she was gone. But now he is left mourning her because he didn’t have that time before she was born.

We are in two different places. And that’s ok.

Fair Day

After She Left 2 Responses »

Feb 232012

Today was an ok day for me. Work and other situations kept my mind occupied. I spoke with a friend, Scott, about Alexandria and we talked a bit about her story. It was good to talk about her in a happy way, we talked about how miraculous it was to have her start breathing after saying the Lord’s prayer. That moment was incredible, and I play it over and over again in my mind. It was a great moment.

I almost called him while we were in the delivery room, right before she was born. He’s a photographer and a few weeks before she was born he showed me some of his work and he offered to take pictures for Kimberly and I. It was a very nice offer, but we’d already setup to have Whispers be there. When their wasn’t anyone to take photographs and they weren’t sure they could get someone in time I was about to phone my boss so he could find Scott and ask him to come to the hospital. I was taking my phone out of my pocket to make the call when a nurse came up and told us that a photographer had arrived.

It was good to share a moment about her life with someone, especially one of my favorite moments.

Kim and I received a bill specifically for just the NICU doctor being in delivery today and after she opened it she said to me, “Hey, after insurance it cost us $20 to pay a NICU doctor to witness a miracle.” Best $20 we’ll ever spend. 🙂

Pain

1st Month (After), After She Left 2 Responses »

Feb 212012

Alexandria and Me back when she was 4 days old

It’s 4am and I am in such horrible pain. Overwhelming waves of grief, sadness… It’s difficult to think, like a massive thunderstorm and the sound of the rain is utterly deafening.

I want her back.

I want to hold her.

I would give anything to feed her again. To be up just calming her down, holding her hand, playing with her toes. She loved sleeping right under my chin… I’d shave a lot so it’d be smooth and comfortable for her. I’d lay on the couch all night and listen to her breathe. Rub her back when she’d stop. Tell her about her mother and I. Tell her how glad I was that she decided to stay. How wonderful her blessing was… how much I cherished being with her… Being tired didn’t bother me. People didn’t think we could keep it up but I didn’t give a damn. I loved her and love her and would do anything, ANYTHING for her. We never put her down. It was so hard to put her in that casket. It was so hard to actually put her down, to let her go. I can’t let her go. I still can’t let go.

Two weeks and change… and it’s unbearable tonight. I was doing so well. I hadn’t cried hard in a few days. I was able to work. I can barely breathe now.

I want her back. She’s not coming back.

Please Lord, let me know she’s ok. Help me through this.

Two Weeks

1st Month (After), After She Left No Responses »

Feb 192012

It’s been two weeks and I still can’t sleep. I still can’t write. I have a post for the day of the funeral and one the day after that still haven’t really been finished. I flushed out some notes, basically sentences here and there… maybe I should just post them as-is. Maybe then people can see how completely scatterbrained I’ve felt.

We went to small group for the first time without Alexandria this past Sunday. At the start I was overrun with emotion. I’d always had her in my arms, held her while we ate, etc. My arms were empty. I had to step away from everyone and pull it together. I can’t stand falling apart every few minutes in front of everyone. I feel weak. That’s the kicker isn’t it? I work hard to make sure Gabriel understands that it’s ok to cry, I cry in front of him, I tell him it’s ok, I share my feelings around him…. but put me in a public setting and I’m blanketed in shame. I feel like I’m burdening everyone. Tack that on to worrying that my losing it makes it hard to support Kim and you’ll see a never ending cycle of guilt and pain. It’s comical and pathetic all at the same time.

But we did laugh that night. We laughed. For a few moments we stepped out of grief. I don’t remember why or about what, but who cares, we enjoyed a light moment in life with friends.

I shared some of my problems answering Gabriel’s questions, especially his question about Heaven. The next day one of our small group members showed up at our house with a book for us to read with Gabriel…. such incredible people.

To start the first “regular” week off Kim, Aden, and I all contracted Ethan’s flu. I had the entire living room covered in plastic tarps to keep Aden under control, Kim kept Gabriel and Ethan on the second floor. I just want a nice long boring break.

Went to work this week. Had lunch with the same friend who had told me he was afraid I was unprepared for Alexandria’s death, that I wasn’t facing reality. We talked a good bit and he thinks I may want to talk to a doctor about my depression. I think I’m doing better, at least better then last week. I’m not one for pills. Work has been a good distraction, for the most part. It can be difficult to concentrate at times, others it gets my mind off things.

I don’t know why, but after putting the boys to bed last night (Friday night) as I walked down the stairs I thought I had to take care of Alexandria… for just a split second. It had become such habit… That was a hard hit. Kim said she knew how I felt, that it was something we did for so long…

I had some horrible nightmares this week when I did sleep, nightmares centered around her after she’d passed. I’d like some regular dreams, nice dreams, dreams of holding her and taking her to church.

Kim and I spent some quality time together after the kids went to sleep tonight. It’s important to stay close, talk, breathe. Always remember to breathe.

Video of her Journey

1st Month (After), After She Left, Alexandria's Life 6 Responses »

Feb 142012

We had 50 wonderful days to spend with Alexandria and I captured many of those moments on film, and I took enough pictures that Kimberly called me “the daddy paparazzi.” I put together a video of many of the moments and people who shared the journey with us, with her. It’s hard to believe that it was two weeks before I was comfortable allowing other people to hold her, so worried about how fragile she was… but she just had to be shared. The video begins with her birth and baptism and follows the timeline of her life, day by day. Below is an updated copy of that video, it’s best watched full screen but with 480p quality. I’ve found the youtube HD quality setting lags a bit (click on the snowflake looking icon in the lower right-hand corner after it starts playing):

Valentine’s Day

After She Left 3 Responses »

Feb 142012

Happy Valentine’s Day. In my mind this was the next milestone for Alex, the next thing to look forward to. Another bucket list item – give her Valentine’s cards and maybe share a box of chocolates with Mama 😉 But unfortunately she would not make it this far. Too bad. Valentine’s Day is a fitting holiday for her. All she knew was love. So many people loved her. Even people who’d never met her.

Instead, today I cleaned. All of us but Gabe had the flu this weekend. Time to get the Lysol out and eradicate any germs. Good thing we didn’t have this when Alex was here. I don’t know what her fragile little body would’ve done with that.

I started with the refrigerator because the kids were asking for food and I needed to figure out what was still good. I haven’t been grocery shopping since before the funeral. Our neighbor was kind enough to run to the store yesterday for emergency food since we were stuck in bed. I opened the door and started moving things around. There in the back of the top shelf was a bottle of formula that was mixed and never used. I guess it’s time to throw that out.

I noticed even after I put the dishes in the dishwasher something didn’t smell that good. I started going through the funeral flower bouquets and clipping the stems, changing the water, throwing away the flowers that were past their prime. One bouquet had started to mold. Ah, there’s the smell. Time to throw that one out.

Later on I decided to mop the floor. I vacuumed, then decided to use an old towel to mop the floor so I could really scrub at it. I got to the place where some of Alex’s one month birthday cake had been smushed into the floor. Bright pink fondant. The towel went over it and suddenly it was gone, erased from the floor.

There are reminders of her everywhere. So many of them are being thrown out or erased from existence. I struggle with that. I don’t want her to be forgotten. I don’t want to forget her. But the pink fondant on the floor must go. The plaster on the bathroom floor from the molds we took of her after she was gone. That can’t stay there forever. Eventually all the Christmas cards I have taped to the dining room window trim will be taken down. That would include the “Granddaughter, it’s your First Christmas” card too. I wish I could leave it all just the way it was when she was with us. Maybe then it would feel like she was still here.

I think I’ll make the nail polish that spilled on the carpet in the living room an exception. At least for now.

Happy Valentine’s Day Alex. We love you and miss you so much.

Love, Mama

A little over a week…

1st Month (After), After She Left 1 Response »

Feb 122012

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

We received a post-card junk mail from the florist down the street today in Alexandria’s name telling her that she’d recently received flowers and it included a 10-20% off coupon. I drove down their store and asked for a manager. I thought I could keep it together long enough to tell her why we’d no longer like to receive junk mail in her name… but I couldn’t. I wasn’t mean, I just explained who it was addressed too, that she was gone, and through tears that we’d no longer like to receive advertisements addressed to her… She (and I think half the staff) started to cry as I left. I know it wasn’t their fault, I know it wasn’t intentional, but you think there would be an option to mark what delivers are for and when it’s for the deceased those names/addr would not get into their advertisement mailing computer.

Worked on finishing up a new version of the video I made for her funeral. This one will be for her website. Added some video of her, and some pictures from the funeral.

I could watch video of her today and smile. I still cried a good amount. But I could smile. I could get through a few without crying and just smiling.

Gabriel is beginning to use Alexandria to stall at bed time… He’s a smart little bugger. Not sure how to nip this though… don’t want to encourage him to use her to manipulate for time, but also do not want to hinder him opening up and talking about it.

Tomorrow is our first church service since she’s been gone.

3rd Day After (Day of Visitation)

1st Month (After), After She Left 2 Responses »

Feb 102012

(Written on the day of Visitation, but slightly edited and Published two days after funeral, trying hard to get up the energy to do this…)

It was a long day. My brother, his wife, and their twins arrived late the night before. The kids had trouble adjusting to the trip from Chicago and cried a few times during the night, I felt bad for them. I, of course, was awake staring at our ceiling. We gave them Gabriel’s room and Gabriel slept in our room in a “tent city” he’d created which included a “living room” and “bedroom”. What he wants, within reason, for now.

So, funny story: I finally give up and get up at 4 in the morning or so and decifde to just go downstairs and work on Alexandria’s video for the funeral. I get downstairs and it’s pitch black, but I hear the telltale snoring from the couch and figure it’s Michael with a twin on him that he finally got to sleep. I walk over to my office, open the door, there’s a pack-in-play in there. YIKES! Close the door. They’d placed one kid in there to keep him happy and away from everyone. Damn. Understandable, but damn. So I walk out to find my laptop, but it’s been moved and I couldn’t find it in the dark (probably to be kept away from the kids). Damn. Understandable, but damn. I decide to just go into the bathroom downstairs, open the door, and there’s a pack-in-play in there with the other twin! Doh! Shut the light off and leave quickly. I immediately thought, “If I go out to check the mail, what would I find?” I was at least glad they (Mike and Lisa) were able to separate the two so they didn’t keep waking each other up and were able to get some sleep themselves. 🙂 Found my laptop and began working on editing the prior days’s writings… didn’t get to the video until after everyone was awake.

I spent all morning putting together the video for Alexandria’s funeral. I’m hopeful it shows how great her life was, how many people brought her joy. Not just how many people she touched, but how many people touched her. How many people gave Kimberly and I hope and time. Kimberly and I wanted to put the days on each of the pictures to mark the progression of her life, but I just didn’t have the time. I had Michael (brother) review it and he said to not change a thing. Pastor Nick is going to meet with me after the visitation tonight at the church to make sure the video plays on the monitors at church, it’s so nice of him to take time out to do that for me.

Went by the funeral home to get more picture boards for Kim.

Went to several places around 2:30 and bought them out of papers.

Midland Daily News, as usual, screwed up and didn’t run her obituary today. That’s 3 for 3 now; the spelled my name wrong in Grandpa’s obituary in 1991, they didn’t format my mother’s obituary in 2004 so it was all broken up in mid-sentences, and now they didn’t run Alexandria’s obituary at all. Kim says to me later, “Well, it isn’t called the Midland Daily Mistake for nothing.” Isn’t that the truth. So now her obituary won’t be run in our home town the day before her internment, or even the DAY of her internment. What a complete let down. If there is one thing, ONE SMALL THING, a newspaper should take care to get right, it’s the freaking obituaries.

BTW, GR Press, nice color picture, all one unbroken column both days, well done.

Visitation

Literally a 3 hour tour. So many great people showed up. One in particular was a gentlemen (name withheld for privacy) whom I’d met several months prior who lost a daughter many many years ago. His compassion and story moved me so that one day I’d searched him out at church so he could specifically hold Alexandria. I kinda felt like someone was telling me, “Find him, he needs to hold her.” So many people. Couples that have lost children. I don’t know how they handled being reminded of what they went through by coming to support us, but what strength to see and it gave me hope that at some point this overwhelming pain will be manageable. Friends. Family. I was all cried out after the two hours. Just when I thought I was done someone would say something and I’d fall apart again.

At the very beginning Kim and I were standing near Alexandria’s casket and a small line was forming near us. Gabriel picked up on that and as people began to walk in, he started telling people, “You need to get in line!!!” I’m getting my public education money’s worth, the boy knows lines and their importance. Kim and I heard him say that and it was a good reliever, but I told Kim we should probably move down a bit so people could mingle around and not be herded by our 4 year old. 🙂

Everyone said how great parents we were to her. I kept telling people we got the better part of the deal, and that’s absolutely true. She was such a great blessing to us, I feel like she gave us so much more then we could ever give her. I have this hole feeling I didn’t do enough for her. Three things I didn’t think of until it was too late for her bucket list: Passport, Shoes, Barbie. Didn’t realize the Barbie thing until today. I was walking Gabriel through the store and saw some, it just crushed me for a minute, what father doesn’t get his daughter a barbie?

50 days wasn’t enough.

I was very moved at the number of co-workers that came out, even one that just had triple neck-bone surgery days prior. My uncle Bill commented, “I think half of Meijer showed up for the visitation.” 🙂 What a great group of people. I’ve never had a more supportive employer, they’ve really been outstanding.

After everyone was gone we went to say goodbye again to Alexandria. They did a very good job making her look good. I remembered the funeral home saying something about putting ointment on her ears to “help”, wondered what they meant, so I touched her ears. Mistake. I’ll just say they were “different”, they weren’t (understandably) the floppy little ears they were days before… I wanted to make sure her ring was on her finger, but afterwards wish I had not. Her ring was on, but her hands had not been “prepared”. Everyone else who had died in my life had their hands clasped at their chest, but hers were at her sides covered by her blanket…. so I checked for the ring. It is a tough call to get closure to know how much time to spend with them after they go. I don’t want her “being dead” to be the images burned into my mind. I also need that finality. As insane as it sounds, the day after she was gone, it was almost as if they were was a hope that it was all wrong, they’d call because she wasn’t really dead and we could go get her. But she’s definitely gone. My mother told me several times when I was young that if she ever died she’d want my sister and I to see her at least once without anything done to her by the funeral home, so that we would know she was definitely gone. She felt kids needed that finality, and part of her career as a nurse I know she’d seen many kids who were denied the chance to grieve. It was very important to her, probably one of the reasons I’m so careful to make sure Gabriel is included, understands, and does see her, but glad she “looks” somewhat like she did while she was alive.

I was concerned that an open casket would be a mistake. It wasn’t. Gabe walked by her a few times, he needed to know she was really gone. I think seeing her changed helped.

We took Aden up a few times, explained she was gone. I think he understood. Something in his eyes told me he understood.

They had a good room the side for kids to watch videos, glad it was there, really helped the kids.

For visitation at the church Kim and I will go alone, the kids will join us for the funeral.

Gabriel told me today in the car again that he was happy, not sad. He didn’t like crying. He told us on the way to the funeral home that Ethan was sad that baby Alex was gone… projecting his pain onto him I suspect. A co-worker with a psychology degree brought that up too, which I think was kinda the confirmation I needed to know we should watch it closely. Gabriel did say during the day he wanted to go to the funeral home because he hadn’t seen baby Alex in a long time. He was so close to her, he misses her, it is so hard to see his difficulty expressing it.

We had some nice moments at night with family all sitting around the dinner table talking and eating very good chocolate brought by Uncle Bill and Aunt San.

4th Day (Funeral)

1st Month (After), After She Left 2 Responses »

Feb 082012

I wrote some of this on February 14th, 6 days after the funeral, and more as the weeks past. I should have written more while it was clear in my mind, but it was too difficult for me to do so.

————–

Alexandria's Church Banner

We woke up and the house was buzzing with people, which was nice. The busier it is the the less I concentrate on losing Alexandria. Kim and I needed to be at the church early for the visitation. As we were leaving Gabriel ran up with desperation saying he wanted to come with us, I wasn’t about to argue with him, not today. We got him into the car and made it to the church.

When we arrived no one from the funeral home was there yet, but they pulled up shortly after we did. I walked out to their van and carried her casket from the van into the church. When we assembled in the front area of the church, Pastor outlined the best way to position things in the small entryway. We placed Alexandria’s casket to the left near the entrance to the chapel and setup the picture boards around the room. A good friend of ours pasted some pictures on a large “A”, which we setup on a table on the other side of the chapel entrance.

Phil, one of my best friends, and Marlene, a friend of both Kim and I, were the first two people to arrive. Because of work projects and everything going on with Alexandria I haven’t seen a lot of Phil in the last few months and it was good to see him. It’s amazing the weight that can be lifted off your shoulders when the presence of friends is near.

A lot of people came, many friends, church members, and even a woman who had read our story on the baby-center website that Kim had posted on. The funeral was beautiful. Pastor’s message was great. He and I have spoken a few times and it’s interesting to have his perspective on her birth. He did not know that Alexandria wasn’t breathing when he entered the room, he only knew he was told by the staff to hurry. I can still feel myself holding her hand while we prayed, and her first breath after we said Amen. It is so hard to accept she’s gone.

After the service many people had to leave, only about half that I had expected to stay for the lunch did stay. I know that many people had to get back to work, or home to their kids. The food was very good. I felt rushed though, knowing that we had to leave for the cemetery in an hour in order to make the timing deadlines with the cemetery. I spent a good amount of the lunch time trying to get loose ends tied up so that we would make it to Saginaw on time. During lunch Gabriel asked to see Alexandria again. I took his hand and we walked through the church and into the chapel. I unlocked her casket. He looked at her briefly, spoke a little about her, and said goodbye again. It was hard to know what he was thinking, he’s so quiet, but I knew that when he was ready he’d talk. We returned to the lunch area where he quickly disappeared to talk to… well to just about everyone. 🙂

Alexandria's Casket

As time got close for us to leave, Kim and I went into the chapel alone. Finality began to sink in. We taped photo’s of the family into the top of her casket and decided to say our final goodbye’s there in the church. We did not know what the situation at the cemetery would be like, but we did know we would not get the privacy the church afforded us. I made sure her baby ring was on her finger, and her cross was secure around her neck. We prayed, we cried, and then prepared to leave. Aunt San and Uncle Bill’s flight was leaving in a few hours, so making the trip to Saginaw wouldn’t be possible for them. They very graciously took care of assembling all of the flowers and food and getting it back to the house.

We put photos in the top of her Casket

Gabriel asked to ride with Kimberly and I to the cemetery. I initially didn’t want him to ride with us, I wanted to talk to Kimberly about what was going on in private. However, after looking into his eyes I could tell this wasn’t a request that should be put off, and we all piled into our car. I realized a few minutes into the trip he was going to have questions and Kim and I were definitely the two to answer them. He had some questions about why she died, where she was, etc. We continued to tell him that she was very sick, but not in a way that he or we could get sick… and that she was in heaven now.

Gabriel saying goodbye at the Cemetery

When we arrived Gabriel told us he wanted to see baby Alex one more time. I took him to the van where her casket was, took the key out of my pocket, unlocked, and opened it. He paused for a moment and then said to Kim and I, “I need to pray over her.” He laid his hand on her head and prayed his favorite prayer, “Come Lord Jesus be our guest and let these gifts to us be blessed. Amen.” It was a surreal moment, one I won’t soon forget. He’d seen Pastor pray over her a few times (other prayers obviously), that clearly sunk in. 4 years old going on 50.

We said goodbye, closed and locked her casket, and I carried her to the grave-site. Pastor Rob gave the graveside service. There were a few people there from Midland, but not many. We later had the feeling many people felt the graveside service was family only, we probably should have made it more clear to people that it was open to anyone.

After the service I handed her casket to the cemetery workers and they laid her to rest in her tomb. Kim, Gabriel, Aden, Meghan, Robby, and I all dropped flowers into her grave. Gabe asked to drop another one because his first went into the dirt and not on her tomb. Anything he wanted…

Lowering her Casket

We each dropped some dirt onto her closed vault, and then one of the cemetery workers and I began to close the grave. After the first load of dirt I asked Michael to help and he and I closed the grave together. It is very much a closure thing for me, to close the grave myself, much like building her casket myself. It was my role, as her father, to take care of her from cradle to grave. Today many people shy away from this part of the cycle. Some don’t even go to the cemetery when they bury their loved ones… for me, putting the dirt on the grave myself, is very important. It may sound morbid to some, but when I closed her grave there was a peace that came over me, a knowing that I’d done all that could be done. We loved her, we gave her everything we had, and now I’d seen her home, that I’d made sure she was safe.

Michael and I closing her grave

As we were closing the grave Gabriel asked, “Who’s going to die next?” We told him hopefully no one will die for a long long time.

Afterwards I just sat down next to her grave and cried. It was done.

4th Day (Day of her Funeral, 4am)

1st Month (After), After She Left No Responses »

Feb 082012

Been working on posts for the first few days after her…. editing what I’d said, adding detail.

Still can’t sleep.

The house is filled with family though, so it feels… less empty. It’s so nice to have them all here.

We tested the video Kim and I made for her funeral out at church last night after visitation, but it skipped once… hope it doesn’t do that today. I hope everyone sees that it’s not only the people that she touched that is such a miracle, but also all of the people that touched her life and ours that made this journey. So many people who helped us, it’s impossible to thank them, to repay their gifts.

At some point I’ll finish yesterday’s post… but need to try to get some sleep… the rest of today is going to be hard.

2nd Day After (Monday)

1st Month (After), After She Left No Responses »

Feb 082012

We let Aden go to school, good to keep him in his pattern and he wanted to go.

We asked Gabriel if he wanted to go to school, he waffled a few times during the day, announcing he didn’t, saying he did… he eventually decided to go.

Got there, he told his teacher about that we were going “somewhere” tomorrow, but he couldn’t remember the place… he struggled for a bit… I knew what he wanted to say, and when it became clear that it really bothered him I said, “the funeral home?” “YES! The funeral home cause baby alex died!” She said something to him, something good about talking about it later if he wanted too… I was temporarily blinded by emotion to hear her words. I felt compelled to explain to his teacher he really did want to come to school… She understood.

Gabriel began asking question after question after question today, which is natural. We were patient and answered them as best we could. He asked me “What’s a funeral?!?” in one of our discussions and the following just flew out of my mouth, “A funeral is like a church service where we go to church and praise God for the days we had with Alexandria, we sing some songs to her, and then we tell her goodbye.” It was weird, because I hadn’t really thought about what a funeral was, what I was going to tell him… it was like someone else just took over “Here, let me answer his question for ya…” After I said it I thought to myself, “Hmmm, that’s a pretty good answer, wonder where that came from.”

“Where is heaven?” “I’m not sure.” Not sure I’m ever going to have an answer for that one.

Several times throughout the day he told me how he wasn’t sad, how he was so excited she came out of momma’s tummy.

This was the first day I’d gone without physically seeing her. I stopped by the funeral home with some cards to see if they made them like they did when my mother passed, and they are going too. I thought about asking to see her… but something told me not too.

1 Day After (Sunday)

1st Month (After), After She Left No Responses »

Feb 082012

I can’t sleep. I’ve been up most of the night. Kim and I slept in our own bed tonight and the house doesn’t seem like ours anymore. It seems so empty. We laid there talking about for over an hour in the dark, remembering how wonderful she is.

At 3am I came downstairs, I couldn’t lay there anymore staring at the ceiling. There is no comfort here. It is so cold. The house is so empty without her.

Worked on the post about the day before she passed on the blog to pass the time.

Everyone “got up”. Gabriel said a few times that he was sad that baby alex had died, and we immediately told him we were sad too, that it was ok to cry, etc.

Went to the funeral home, made preparations, including all of the paperwork for burial, visitation, and service times. The funeral director, Bob, who helped us had also lost a child many years prior. He was extremely good at his job and very helpful. Found out about finger print stuff. Gave them the working obituary and had them add the dates/times to it and send off to the newspaper. GR Press is now only delivering on Sundays, Tuesdays, etc… so if we had the funeral on Tuesday it wouldn’t even make the paper.

I couldn’t stand to eat dinner at the dinner table. I did it anyway, but for most of the time while she was alive one of us ate with the boys while the other held Alex and ate in the living room. It’s terribly ironic that I thought it was difficult to eat with her, squirming around, turning my head to the side so no food would fall onto her… eating without her in my arms is much more difficult, it’s almost unbearable. Sleeping without her is just as impossible.

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