Alexandria's Journey

(Written at 4am the day after she was gone with editing the next few days)

Alexandria had a rough Friday night, episodes throughout the night where her heart and her respiration would crash.  It hurts so much knowing she’ll never fall in love, she’ll never get proposed too, never married.  I so wanted to walk her down the aisle… that sounds so selfish now, but it’s been a dream I had.  Kim and I pushed the couches face to face together so we could lay next to each other, but still have the safety net of the couch backs to keep ourselves from rolling around if we fell asleep.  We traded her back and forth during the night.

Around 4am she and I danced around the living room for the last time.  She didn’t step on my toes once.  I could barely hum the tune through my tears, all I could think about was how it was the closest she and I would ever get to a father-daughter dance.

A little after 5am I began reading books to her, “One Duck Stuck”, and my favorite book “I love you all the time.”  I had Kim video tape me reading to her.   Her episodes were getting more frequent, but were spaced about an hour to 45 minutes apart.  I decided to take a quick shower after one before 6am.

Around 7am the boys were beginning to wake up and I knew that Gabriel was not going to be able to handle seeing her have an episode.  It would scare him at best, but more then likely give him nightmares for years to come.  Her coughing and jump-starting back, especially as Kimberly and I cried and said how much we loved her every time it happened would be difficult for us to manage with him.   We talked about where we thought would be best and decided that taking her upstairs would probably not be the best option.  Our bedroom upstairs would be the only place we could take her, and how would we handle the memory of her dying in our bedroom in the years to come?  We moved one of our couches into the office on the first floor, somewhere we could go and be secluded behind closed doors, but allow the kids to come downstairs and watch TV, play with their toys, etc.

She had a few episodes between 7 and 8am.  By now her pain was managed enough that she did not appear to be in any discomfort, but it was definitely stressful for her every time it happened.  It is such a difficult thing to know that time is short, that the day is at hand, and this is all you get.  This is it.  But you push that back and hold her and love her and let her know how cherished she is.

She had a peaceful time for about an hour between 8:00 and 9:00am, but then had another, but brief, episode.  Her heart dropped into the thirties and her respiration was difficult to measure.  She then bounced back and held the 120sbpm and 20-30Brpm for a while.  She seemed good. I was almost wondering if this was a good rally that might last.  Kim decided to take a quick shower in hopes to get in and out quickly prior to the next episode.  I laid down with Alexandria, and held her on my chest as I had for the last 49 days, snuggled in her “Daddy’s Sweetheart” onesie, wrapped in a blanket, snuggled up close.  Around 9:45 she began to have an episode, but her heart went down pretty far, then began to shoot back up, then down.  It wasn’t a pattern I had seen with this quick a change.  I called Gretta and asked her to ask Kim to hurry, figuring she was probably done in the shower and could just come downstairs.  Her heart dropped to 19, her breathing stopped.  I got her up quick, grabbed the monitor and walked into the kitchen, and asked if Kim was on her way.  Gretta told me she’d told her to hurry…

I paused for a second, considering our earlier conversation….   if this was it, and I take her up there, would Kim be mad?  I figured she’d be more angry if she wasn’t there, so I went upstairs with her.  The episode got worse, I knelt down on the floor and told Kim to come out, that she was having a very bad episode.  Her heart dropped to 0.  Her heart started again while Kim rushed out of the bathroom and joined us.

She died there in my arms.  That was it.  We would get no more time.  I have never felt such pain and anguish.

We cried and held her back and forth for the longest time. I stepped out of the room only briefly to call Jessica.  Jessica, thankfully, called Dawn, who showed up shortly thereafter.  Unimaginable pain.  Jessica showed up, and they both spent some time with us, comforting us, holding us together.  She died at 10:00am, Jessica did second pronouncement at 10:54am.

Found Gabriel, explained that she had now died, took him up to see her.  He asked why she was “green” (she wasn’t green, but it’s how he perceived her color at the time), why “she changed color”, and I explained that it was one of those things that happens when you die.  You don’t eat,  you don’t breathe, you don’t cry, etc.   “She went to Jesus.”  “Yes, she’s gone to be with Jesus.”  “I’m so excited she came out of momma’s tummy!”  “We were too, we love her very much, and we’re very sad that she’s gone.”  “I’m not sad.”  We didn’t press this response because we knew he didn’t understand, we’re sure he would as it sunk in.  After a while of seeing her and talking with us he stood up and said, “I’m going now.”  We told him OK, and he left with his signature, “OK, See you later!  Have a good week!”

Found Aden, did the same thing.  I knew he wouldn’t understand, but just as with Gabriel this is also his first cycle of life.  Perhaps as others pass on he’ll begin to grasp and understand this confusing world around him.  We signed to him, “she died.”  He signed it back to us.  We signed yes, she died, and he signed OK, then immediately stood up and left.

We sat with her for quite a while.  Holding her, telling her everything we’d said while she was alive over and over.  Unable to let go.  No matter how much I wrapped her, no matter how close I held her, I just couldn’t warm her up.  She was growing so cold.

We had purchased some pottery and paints from Naked Plates and we added her hand-prints and footprints to them.  Later on we’ll add the other children’s.  We did the same with some glass Christmas ornaments as well.

I gave Alexandria the first bath she had when we came home, and I gave her the last bath now.  She hated baths, always squirming, until I got to rinsing her.  I’d get the water at just the right temperature and then gently hold her under the flow of water.  She was never as calm as when I was rinsing her during bath… I think being surrounded by the warm water reminded her of being with Kimberly.

I dressed her in one of her favorite outfits and wrapped her up tight in her blanket.  Kim and I spent some more time saying goodbye.  Around 1:30pm we called Metcalf to come and get her body.  We were told by Dawn that they would probably want to pick her up and transport her in her carseat.  Kim was very afraid that Gabe would misunderstand that and think she was still alive and just going somewhere in the car.  We decided to send her with them in her casket, so I placed it in the dining room before bringing her downstairs.

I brought Alexandria downstairs took her into our living room for one last goodbye with the boys.  Ethan walked up, “Baby.”  “Yes, baby Alexandria.”  “Baby.”  .. He smiled and he walked away.  I later told Kim that Ethan would probably be a great reminder of her in the days and weeks to come, saying “baby” and probably looking for her.

When Metcalf arrived I asked Gabriel if he wanted to help lay Alexandria to rest in her casket and he said yes.  We walked over and laid her down. We slowly closed the lid and he asked me for the key.  He wanted to lock the casket, and I let him.  I then asked him for the key back, which he surrendered.  4 years olds have such short memories and wild imaginations… we took pictures of the goodbye so that down the line, when he can’t remember, we can show him that she didn’t just disappear, that she finally did pass into God’s hands and we said goodbye and let her go…

 

 

I carried her casket out to the car and passed her body into the hands of the funeral director in the front seat.  I handed him the key, but told him, “When this is all over, I’m going to want this back.”    The key to our treasure belongs to us.

And she was gone.

 

Very hard night.  Many episodes.  Alexandria continues to fight, she is the strongest, most beautiful girl I have ever known.