Thursday, July 14, 2011


Boy, I must admit that this word has come up quite frequently this week. I'm finding the older I become the less I like change and the more traumatic it seems to be for me. I'm not sure why this is. You would think that God would install us with the opposite being an adult. I think growing up and growing older , we should be given the ability to change with everything and to learn to accept change. Instead of feeling like giving up on humanity and crawling up into a little ball. At least that's how I feel when change comes about. I'm sure most people have their own way of feeling and dealing with it. I'm not sure how I deal with change , but I know how I feel about it.

But its just not that way. I've yet to understand really why God does what he does and the plans he has. Yet it is what it is and to move forward and to progress we must change.

Some change is good: We had a wonderful week in Washington D.C. I can't put a price on what its like to go to the VACTERL Network Conference. I call it a super vacation. You have to pack in all you possibly can in two days. Talk and meet with everyone that you haven't seen in a few years in a matter of two days. Try to see as much sight seeing that you can, if you can, when you can in two days.
We did manage to go to the Pentagon Mall, see the Pentagon since we were only not very far across from it. I can say the view was stunning from the room we had the Meet and Greet and where the pool was.

Priceless is the time you get to talk with 'old' friends and meeting new ones.

We did get to see a few photos of us in Washington. It was extremely hot and we could only walk so far in one day. So we saw as much as we possibly could. We went to the Arlington Cemetary, saw JFK's burial along with a few others but we never made it over to the Tomb of the Unknown Soldier as it just was all up hill and pushing a stroller was pretty tough in the heat. So we turned around and walked over to the Lincoln Memorial. Saw the Washington Monument and of course the Reflecting Pool had no water in it! LOL I wait all my life to go to Washington DC and there's no water in the Reflecting Pool.
After that we made it over to the Vietnam Wall and that was all we could take of the heat and our feet were ready to fall off. Even though we never made it to the Smithsonian or anything like that I was very grateful for what we did get to see that Sunday. WE did see the Capital building and saw the President come in on his helicopter when we were walking at the Lincoln Monument. We never did get up close because Maggie fell asleep. She slept right after we left the Arlington Cemetary, and didn't wake up until we were walking back to the van. But we have pictures and really it didn't matter because she won't remember it.

JFK's Burial Site

Women's Memorial Site

Arlington Cemetary

Lincoln Memorial

Marilyn and Daddy standing in front of the Reflecting Pool. See, no water! LOL

The Vietnam Wall

We have so many pictures that we possibly couldn't post them on here. But those are a few that we managed to take. Priceless. It was so nice to be able to take Maggie and Marilyn there. I hope that Marilyn always remembers our trip to DC. It was nice for her to go because she learned that there were so many others out there just like her sister. She told me she had no idea. So for those of you wondering how siblings feel.... well they feel just as alone in the world as their parents do. Alone meaning they feel they are the only ones with a sibling with VACTERL. But it was refreshing because Marilyn learned that these kids are just as fun as any other kid out there.

Next after we got home, we of course unpacked and began the process of settling back into home life when we were called by Pumpkin( Grandpa) and was asked if the older three wanted to go to Camp! How fun is that?? Of course the girls were up to that. Marilyn was a little nervous but Katie and Hannah were all for it. They had fun and enjoyed it so much. I mean who wouldn't have fun at a Wild West Camp for a week?

Marilyn and Katie's Cabin ( Marilyn slept on the left side and Katie on the right)

Hannah's Cabin , the whole camp town was like a set off a Wild West Movie. LOL

Hannah vaulting on a draft horse.. yes, Grandma just about had a cow! LOL

Great change there.

Our next change was a rough one. It was the loss of a very sweet little friend. Granted we never got to meet them in person we felt very connected to them. I guess its that VACTERL family connection. We are just all there for each other whenever we need advice, to vent or whatever.
Maggie felt very connected with her friend Eithene. I think it was because she knew Eithene was like her. She had to deal with tubes and medicines and hospitals and doctors. They just know.
But it was the very last day we had to pick up the girls , and our father in law's birthday that our sweet little Eithene passed away. She also had mitochondrial disease and it just shut down her poor little body. It was a happy day to pick up the girls but a sad, sad day for her family and a sad day for the VACTERL Community as if a family loses a loved one with VACTERL we all feel the pain.
We are glad she is in the sweet arms of Jesus and is free but its the families left behind that have to grieve that is the most painful.

Memorial to Miss Eithene

That was our first not so good change. We will miss you Miss Eithene and the updates your mommy sent out. You were a precious princess who was a great example to us all about life, love , and strength.

Next, Pumpkin( grandpa) had eye surgery and the surgeon who did his surgery totally botched it terribly. He is having a tough time seeing through his eye and Tim and I have been helping them while they can see if they can find another surgeon to fix his eye, if it can.

Our next change is that we'll be homeschooling once again. Its always a mixed bag of feelings for me. We aren't supported with homeschooling our children so traveling this less beaten path has always been very difficult when we haven't had the support we've needed. I love homeschooling the girls , but at the same time with my own health not being the way I wish it were, I just worry about my own energy levels. Yet we really don't have much of a choice in the matter, we will make lemonade with the few lemons I have so to speak.

If you've gotten this far we did meet up with a VACTERL family this past weekend. It was wonderful to be able to talk to someone that just gets it. We didn't have to explain ourselves to each other. We just knew.
We met at the zoo here by where we live and just had a great time seeing the animals and just visiting, visiting, visiting.

Braydon and Maggie

In the midst of that we had a not so great change. Our beloved priest Father Tom is going off to new territory. Meaning he's leaving the church and going to a new one. Fr. Tom is well loved by many in our community. I don't think there isn't a soul who knows him around here. He will definitely be missed by everyone in our community that's for sure. I had a wonderful time getting to know him this year.

With all of that up and down change this month I definitely can say we sure need another vacation on top of our summer vacation. I just never know what is going to happen from one day to the next. Only God knows that, but I guess in the meantime if all this change is going to happen. I think God could cushion the blow a little bit for us 'older' folks who resist it so much.

1 comment:

Sara H said...

So sad to hear of the loss of the little girl. We were in a support group for our 2nd son's birth defect and it was definitely close & supportive despite most of us never meeting each other. I hope the CLE group can be somewhat of a support to you in your homeschooling. It's difficult to go it alone, I know. I basically am with my near high schooler as we have no friends homeschooling that age. Will be praying for your fil. That's just horrible what happened to him.