Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Tuesday, August 9, 2011

Details.

Okay, today I'll put up some details about the conference.  Personally, I don't think I'm much of a details kinda person, I'm more of a "big picture" type of gal.  But I know (oddly enough) that some of you like a bit of the nitty gritty of what exactly went on, instead of just "It was fabulous and I spent the whole time visiting." 

Don't say I didn't warn you though.  This might be boring... Details are a lot more fun when you are the one experiencing them, not the one reading them.  Unless you are a Victorian reader.  Then you love em.  But none of you are Victorians, right?  So, if the details are too much, skip to the end.  There are pictures there.  Oh gosh, now it sounds like I think you are children, offering a picture book, instead of a novel.  Sorry.  Just do what you want and I'll get to writing out the details!

So here I go.  We left for the conference on Friday and if I were an ancient Roman, I'd say it was not an "auspicious" day for travelling.  I'm not at all superstitious, but it did seem like things were not going our way.  We got out of the house later than I planned.  Then we were almost clear of the city when Steve (fortunately) asked if I remembered the passports.  Guess what?  I hadn't.  So that was another half an hour to our trip.  We ran into lots of construction right off the bat.   The border went OK, but when we stopped for lunch (having only reached Grand Forks!!) we had some issues with the car wash that we decided to "quickly" use.  Instead of adding 10 minutes, it added more like another half an hour.  There was construction, construction, and even more construction.  And it was crazy hot and we don't even have air conditioning in the car.  It was sort of a grumpy day, I might add.

Finally, we ended up at a nice little hotel in Watertown.  We had left at 9AM and we got into the hotel somewhere between 5 and 6pm.  Making what was supposed to be a 5 or 6 hour travel day to be 8 hours and only half way there.  Boy was I glad we had decided to break the trip up.  But the hotel had a pool, there was a fantastic breakfast in the morning, and the next day (even though we had a tense hour after missing a detour turn and there was still some construction) went much more quickly.

We ended up at the conference hotel at exactly 3pm on Saturday.  And as soon as we stepped in the door we ran into friends at the front desk, so cool!  The conference didn't technically start until 3pm the next day.  So I hung around and visited while Steve and Caeden did their own thing in the room (which means watch cartoon, read a book, etc.)  I went to the coffee shop and got a Starbucks and a book, and then went and sat in the lobby to stalk greet people as they got in.  I got very little of my book read, but I did get to welcome a lot of people. 

I ended up in Pam Marshal's room, with her and her boy, Ethan, and another "new" friend, Vicky Maag, and her little girl, Kenna.  I say "new," because we all had met awhile back through the online group, but this was the first "in person" meeting. 

Finally a group of us ended up in the hotel dining room for a supper together.  Both the Alfaros and the Whitneys were there, two other families that had lost children.  Supper took a long, long time, but I very much enjoyed the visiting and sharing.

There was some pool time that evening, and then I invited myself over to the Alfaro's room (which was right beside ours!) for the rest of the evening.  (Are you sensing a trend here?  I just invited myself all over!)  I managed to keep them up visiting until about 1am while my wonderful husband watched my boy and TV in the next room.  We had a great time visiting.  At least, I had a great time visiting! 

The next morning, after a breakfast with some more PBD families, we decided to check out the "Fontanelle Forest," a big park with boardwalks and displays that was nearby.  I would call that decision an error in judgement.  Because it is HOT in Omaha.  Really, REALLY hot.  It was 38 degrees and the humidity felt like close to 100%.  Oh yeah.  We made it around the first series of boardwalks just barely.  And then we did the sensible thing, and went back to the hotel and the air conditioning.

There was some lunch with the Gambles and the Edgars.  After that, there was a lot of "mingling" on my part, there was a quick prayer time with some of the other parents who follow Jesus (which was good, and next time I'll plan it sooner), and then before we knew it the conference "officially" started with an amazing buffet meal.

After that, there were presentations, which is when my skipping out started.  I am sure the presentations were good, but as I mentioned before, I good reason for sort of taking a pass on them.  Instead I visited in the hall and watched the younger children with some good friends.  Caeden had a wonderful time playing with his two new best friends, Jose Jr. and Griffin.  I had a wonderful time chatting with the moms.

This is a long, LONG blog, isn't it?  See what happens when I get into details?  So I'll try and pick up the pace.  The next morning breakfast and then I went to the break out session for parents whose child/ren had died.  It was led by a group of ladies from Compassionate Friends.  There were five families there with children in heaven.  And I was really glad to see a few people with living children who were brave enough to join us for some of the day.  The best part of it was actually the afternoon, because after lunch we just had an open time to discuss and BOY did we have LOTS to say!  We could have used another day, I tell you. 

There was an introduction to the Parent Panel at 3:45, and I was on it.  Then the memorial service.  I did a reading for that, and while I cried, I managed to get through it.  There was a beautiful video of the many, many children who have died of a PBD, done my good friend, Carolina Alfaro.  And then we all composed ourselves, washed off the tears and headed out to the State park for a fiesta and more visiting.  We came back to the hotel, Steve and Caeden headed to bed, and I hung out in the lobby visiting until 2:30 in the morning.

I'm finally going to stop.  I already wrote a bit about the next day, which was Joel's birthday.  And I think you have been detailed to death.  But now you know.  The details on what I actually did.  Give or take a few.  Wish I could mention ALL the people I met and talked with.  But that would be very long.  I did want to give you a few names, though. 

Why?  Because instead of just talking vaguely of "friends" I wanted you to have some names since names make it more personal.  So it really hits you that there are lots of other, special people out there, and I love them.  They have names and faces, and that's why I am so sad when another child dies.

To finish off, maybe I'll put up some pictures of some of the people.  I took really awful pictures, I couldnt' seem to master the settings on the camera, but I'll put a few of the good ones up for you.


This is Carolina, or Caro, and her son Jose Jr.  Caeden LOVED Jose.  They were our neighbours at the conference.  I have a picture of Jose Sr. somewhere too.  The Alfaro's have two children in heaven, Diego who died shortly after I joined the group and then Adrian, who died this past winter just a bit before Joel did.



This is Caeden with his other best friend, Griffin, and Griffin's little sister, Skylar who was "too little" to know how to "play right."  Sorry Skylar, and you were so nice to him too.  The Edgars (Heather and Geoff) are fellow Canadians, and they are awesome people.  They couldn't bring Ben, he doesn't travel so well, but I have seen lots of pictures and I can tell you, he is a sweet heart.


This is me (of course) holding Jordan.  I cuddled him several times.  I wish I could have cuddled him a lot more, but I also had to share him, plus he really did prefer his mama to me.  Sarah is not in this picture, I don't seem to have a good picture of her anywhere....  anyhow, the other person in the picture is Jordan's dad, Kenny.

Ok, I'm realizing that this will take a long time, so I'm going to stop and continue it later.  The pictures I mean.  Not the details.  Don't worry, I'm done with those.  I'll just put up the pictures.  ;)

1 comment:

  1. I must be a Victorian reader...I loved the details! :-)

    ReplyDelete