We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Wednesday, April 30, 2008

Online at long last!!

Just a quick note to let you know that we are online at our new home! John called Michael tonight and got it fixed. Yeah! I felt like I was trying to function without an arm.

I'm exhausted tonight. Will post more soon. I've been installing shelving and such in the kitchen for the past two days and every part of my body hurts. I'm not one to necessarily use the words "take pride" in a project well done, but this time I feel that I must use the phrase with reckless abandon. I did the whole thing by myself and at this moment feel positively giddy with delight. God bless Ikea. I want to find and hug the designer who thought up their rail system. All of my dishes and cooking tools are neatly attached to the walls of the kitchen. It's just brilliant. The kitchen is so small that I can almost plant one foot in the middle of the room and reach the sink, stove top and fridge if I just turn in the proper direction. But it is the most efficient kitchen I've ever had the privilege of cooking in!

I am sorry about the lack of pictures. I've been working steadily, but it's been spread out throughout the house and I can't seem to just finish one room. I really am trying. I can't wait to give you pictures, but I just want you to see a whole room done. Thanks for your patience!

Saturday, April 19, 2008

Just call me the "USS Mommy."

Hi all. Thanks so much for the sweet comments! I haven't been posting because we are still not connected to the Internet over at the house. The reason is just that John's been busy. Either he's working or home getting all of the miscellaneous projects done. Hopefully, his next project will be the Internet. Since John's been working the past two days, Ethan and I are hanging out at the "big house". Ethan's been enjoying other people to talk to and play with and I've been sewing and enjoying the TV. Ethan has also been sick this week, but is finally getting over it, I think. Other than a nasty cough, he's feeling better today.

There's not much else to report. We are still loving every minute in our home. The other day, I was making supper and Ethan walked up to me holding a tiny picture that I had put in the living room. It was a picture of Ellie's hand, making the sign for "I love you." We talked about how it was like Ellie telling us that she loved us. I asked Ethan if he liked it, and he nodded and said "I'm taking it to my room. I want it." So off he went. I'll have to make another one, because I want it too! :-)

There is something so wonderful about our new place. Even though Ellie never lived there, I feel so close to her there. She would have loved it. I can sometimes picture her dancing through the house, exclaiming over every detail. I can hear her saying "Ohhhhh, I just feel so normal again." That was Ellie's greatest wish before she died - to feel normal. That's how our home makes me feel - normal, and peaceful. I was lying in bed the other night thinking about the strange sensations that I get sometimes. I mostly feel peaceful and joyful, but sometimes a memory of Ellie will come on when I least expect it. And close on the heels of that memory, comes the realization that she is gone from us forever and I feel like a metal submarine that has been hit with a hammer from the inside. I swear that I can sometimes actually hear the "clang, clang, clang" of metal against metal and feel the reverberations blasting through my body. It must be because I don't feel sad all the time, that when the jolt comes, it takes me by surprise.

You'll have to pardon the submarine reference. My dad was in the Navy and served aboard the USS Barb. I just looked it up in Wikipedia and found a story that Dad frequently told. If you're interested, it is under: USS Barb (SSN-596). It was July, 1972 - two months before I was born. The USS Barb was sent to rescue some downed fighter pilots, just after a typhoon. Dad's telling of it was much more interesting than Wikipedia's. The things that they had to go through to rescue those pilots was unbelievable. The sub was not equipped with a crane to pull people out of the water, and the seas were so choppy that they couldn't get close enough to the men in the water to simply shoot a line and pull them out without crushing them. Dad said that the ship was rocking so hard from side to side, that it would have been impossible to simply pull them aboard. So they lashed a man to the mast to shoot the line to the pilots in the water. The man was HUGE - very tall and about 300 pounds (if my memory of the story is correct). Once the man in the water was secured to the line, they waited until the ship rocked all the way toward him. Then all the men below deck pulled out the slack in the line. As the boat rocked the other direction, the man in the water popped up and flew toward the mast of sub. The man who was tied to the mast, caught the pilot in mid air and lowered him below deck. They did that with each of the men they rescued. I believe that one of the men who was rescued woke up that morning in his life raft to see what looked like a big black cross coming towards him, and thought he had died in the night. So he jumped out of his raft and tried to swim away. They had to send a diver after him. I also believe that at least one of the rescued men said that being rescued that way was much more terrifying than being stranded at sea.

Well... I guess I did have more to say than I thought. That always seem to happen. I will be back when I'm able. Hopefully sooner rather than later. :-)

Sunday, April 13, 2008

We are home!!

I'm sorry for not blogging sooner, but we don't have internet at our house yet, and we've been living over there for the past three nights!! We should be online in the next day or so. I woke up this morning and couldn't take it anymore, so came over to the "big house" to get online. Whew. I feel much better now. :-)

We are so happy to be home! It feels wonderful. I'm sorry that I still don't have photos... there are a few more pictures and curtains to hang... I'm just lucky to have gotten the piles of stuff off the floors. I don't want to give you pictures until you can see the full effect.

The night before last, I cooked our first meal in our new home. The three of us sat around the table for the first time and joined hands to pray. Before John could utter even one word, Ethan piped up and said "Can we pray without speaking since Ellie is not here with us, and we miss her?" (This from a boy who has never heard of the customary "moment of silence" to honor someone.) So we bowed our heads and each prayed silently. I finished first and looked across the table at John's thoughtful face, and then over at Ethan, and my heart just filled with love. Ethan sat quietly with his eyes closed and face upturned and tilted just ever so slightly, with the same look that he had in the pictures of his imaginary hug with Ellie. We spent an amazing time at the table talking about our day. John and Ethan dreamed about going camping when the weather warms up a bit, and Ethan nearly came out of his chair in excitement, telling his daddy that he has a loose tooth. And about halfway through the meal (one which was, miraculously, loved by all) Ethan proclaimed "This is the best meal ever!!" Later, Ethan had the saddest look on his face, and when questioned, admitted that he just missed his sister. After dinner there was milk and cookies, and then books read together on the sofa. It was the perfect evening. I wish I could say that all of our evenings will be so idyllic, but those of you who know about my sporadic cooking tendencies know that will not be the case! Still, it was a great way to begin living in our new home.

It may be a few days before I can get back on the computer, but hopefully there will pictures very soon! (I said, hopefully...)

Monday, April 07, 2008


Thanks for praying for Gary! Mom said that the surgery went well and he's doing fine. He will probably be in some pain for a while, but he's getting around carefully without crutches! Thank you for your concern.

Sorry I haven't posted pictures of the house yet. I'm still not finished with the living room - some projects are taking longer than I thought and we've decided to move in this week while John's off. I'll put the finishing touches on the livingroom once we live there. I will be sure to get pictures out - I just want to wait until it's just the way that I can see it in my mind's eye.

Who knows... maybe my next post will be from my home!

Sunday, April 06, 2008

Prayer Request...

I just wanted to let you know that my step-dad, Gary is having surgery on his knee tomorrow. It is at 3:00 p.m. EST. I would sure appreciate your prayers! We love him and hope that all goes well during the surgery and that his recovery is quick! Thanks so much.

Saturday, April 05, 2008


I have a website for you that has two of the children I mentioned. Our friend Melissa started this to keep track of the children that many of us know from the Ronald McDonald House in NY. She has been there with her son Dylan (who has NB) from Australia for at least two years. Melissa got permission from the parents to list their websites. "Austin" is the 6 year old boy and "Courtney" is the 6 year old girl I told you about. There are many other children featured on that page if you feel like checking them out. We know a number of them (including Austin and Courtney), and we also know a few in the "Angels in Our Hearts" catagory. I don't have a website for you for the 9 year old boy. I don't know that family personally and don't feel comfortable contacting them during this time. I met Austin and his mom on our last trip to NY. We shared a kitchen and lived across the hall from them. They are a sweet family who have been fighting for a long time. I have known Courtney's family longer. They would come and go for treatments while we were living in NY, and Ellie was able to spend a little time playing in Courtney's room once. Her mom has given me so much encouragement and understanding over the months. They too, have been fighting NB for a very long time. Thank you so much for including them in your prayers! This is so hard. The longer we go from Ellie's diagnosis, the more children we watch die. It will continue to be this way.

This is the address for Melissa's site:


Friday, April 04, 2008


Someone asked about links to their sites, but I don't know if I can do that. Some people are more private than we are in giving out information and web sites. If I can get permission to do so, I will give you that information. That is why I didn't even give out names. I'll see what I can do. Thanks so much for all the concern.

Prayer request...

Loretta, John and I have been following a number of blogs for other children with cancer - most with NB, but some other kinds as well. Right now there are three children (that we know of) with NB who are in the final stages. There is a 9 year old boy who has a younger sister. We are told that he may only have a couple of days left. There is a 6 year old boy who is in the hospital. His parents are praying for a miracle. He has 4 siblings (I believe one brother and three sisters). There is a 6 year old girl who is in a great deal of pain right now. She has an older sister. Please pray for these dear little ones who are going through so much right now, and for their sweet siblings who are being so brave and yet hurting so much. And also for the parents who cannot bear to see the pain, but who cannot stand the thought of what is to come. We have appreciated your prayers so much - thank you for adding these other children to your list!

Wednesday, April 02, 2008

Feeling the love

You know the pictures I just posted? This is what he was feeling...


Tuesday, April 01, 2008

Hugs for Ellie

Reni and Ethan took a walk around the property this afternoon. Bless Reni's heart, she took her camera along! They had a conversation that went something like this...

Ethan: I want you to call me Ellie even though I'm a boy. I want to remember Ellie and if I have her name, I won't forget her.
Reni: If Ellie was here, would you give her a hug?
Ethan: Yes
Reni: Go ahead




That boy's grief process is a wonderful thing to behold!