Kimberly

The mist

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

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.

Not About Me

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.

Devotion

4th Month (After), After She Left 1 Response »

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.

Comforting Words from the Past

3rd Month (After), After She Left No Responses »

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

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

Stephen Ministries Part II

3rd Month (After), After She Left No Responses »

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.

Running to God

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

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?

2nd Month (After), After She Left No Responses »

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?

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.

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

Christmas Carolers

1st Week (Home), Alexandria's Life No Responses »

Dec 192011

Tonight there was a knock on the front door and the sounds of singing on our front lawn. Doug was finally taking a nap. I opened the door and found a large group from our church – adults and children. I knew they were caroling in a nearby neighborhood but they had made a specific drive over just to see us. Somehow they all managed to park on our street without us hearing anything. I gathered the kids by the open door to watch and listen. I wanted to pick up Alexandria and have her there in the doorway too for everyone to see but it was much too cold for her. We then watched as a huge procession of cars left our neighborhood. I don’t know how we didn’t notice you all driving in.

I want all of you carolers to know that you not only touched our hearts tonight but also our neighbors. They recounted to us later that their dogs heard you outside. They looked out and saw you gathering on our front lawn. They stood in their doorway, completely taken in by your act of love, watching and crying while you sang “Silent Night” to us.