Alexandria's Journey

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?)

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.

(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.

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.