More rambling...

Tomorrow, we are off to our friends cabin that they are so generously allowing us to use for 5 days, so after today I am really going to take a break from writing (except in my journal) Really! We won't have internet access out there.  I think it will be really good for us to get away for awhile with each other.

Before we go, I wanted to say thank-you again for your emails, notes etc... I have been so encouraged by them.  It will probably be awhile before I can respond personally but I wanted you to know how thankful I am for your support.    

We brought the last paychecks to our respite workers this morning.  We are so thankful for them!! They loved Rachel so well and we often told them that we believe they were God's gifts to Rachel and to us.  I know that their hearts are sad too because she is gone.  We will sure miss our nightly and morning chats.  At the Wednesday funeral service, these beautiful women helped us to place some toys on the casket at the front. 

Abigail seems to be needing some extra tender loving care today.  She is having more nightmares and periods of being inconsolably sad.  Not sure how much this is connected to Rachel being gone.  But Dave and I feel so sad for her too because she doesn't have a sister (here) anymore.  And she was such a good big sister.  I wish for her that she could have had a sister here to grow up with and do stuff with, like I did. One thing on our list of things to do, is a new bed for Abigail.  We have needed to move her to a bigger one anyway.  But now we wonder if she is associating it with Rachel's death?  Shortly after Rachel died, we all gathered on Abigail's bed to say good-bye.  If we had been thinking, we would have brought the kids into the living room.  But of course, we couldn't think clearly - it all seemed like such a shock at first.  And then I noticed soon after, that Abigail was almost unusually distraught about being in her bed.  And she couldn't tell me what was wrong. I think it's a bit better now but I'm sure that sometimes our kids won't even be able to voice why things don't feel right.  Us adults can feel that way too....     

Most of the time we are really doing ok here.  We still laugh. There are plenty of things to Give THANKS for! We laugh about special things that Rachel did and what we miss.  The hurt is usually more of a dull aching, but there are times when the sadness feels so big. I guess I will just have to accept that this will be how our life will be for awhile.  Yesterday, we were getting ready for friends to come over to have a small (belated) party for Abigail's birthday...and as I was working in the kitchen, around 3:45, I started crying.  I had this incredible urge to burrow myself in her things. So I told Dave I was going downstairs to the respite room.  I lay on the bed with her clothes and toy and other things - and listened to her sleep machine (a sheep with the sounds of rain that I often played for her when she napped) and held her blankets and wept.  Maybe it was the subconscious realization that it was almost exactly two weeks since she left us.  Or the curly ribbon I found from her birthday party that she loved so much. Maybe it was looking at the pictures and imagining what it would be like to pick her up and kiss her again.  Maybe it was just time for a good cry. 

Mostly we are finding that our grief is disorienting....as if we don't know what end is up anymore. A few days ago, Ethan asked me straight faced if I would move Rachel out of the office so that he could play on the computer.  When I reminded him that Rachel was gone, he laughed a bit and said, "oh yeah, I forgot".  Sometimes for us too it feels like she should still be here.  I started thinking I could hear her crying yesterday and during the night.  One time it even seemed that our respite worker was running up the stairs and I actually got out of bed to check.  I haven't had that happen in so long.  


Caring for Rachel was a full-time job for so long.  Some people have asked us whether we felt relief.  But truthfully, we can't say that we have felt relief at her passing -so far we have just felt sadness.  I think a big reason for this is that she was doing so very well those last few months. We had come to a kind of acceptance of the way our life was, and her needs weren't a burden to us.  I think it would be different had we been in the middle of a hard stretch of spells and eating struggles.  I have heard other parents say that they felt relief afterwards and with that, came guilt for feeling this way.  And I was prepared to deal with the same.  Maybe it will come yet, and it wouldn't surprise me.  But right now I just wish more than anything, to hold her.  I know it is far better for her where she is, and I don't wish her to have one more spell, but it still hurts.

I will say that it does feel very strange to have a sense of enjoyment at being able to do things we couldn't before - and yet still feel incredibly sad at the same time.  I remember the first time at my parents when I realized that I could walk to the garden with the kids, not having to think of Rachel.  (I could never be far from her in case she had a spell) Sometimes I think the kids almost seem happier because they have more of our attention than they have had in a long time.   

Now we are making plans as a family of four.  Another thing that feels strange is to be able to do things that we normally would feel excited about, but now we don't.  I can say that we look forward to things but we don't have the same desire for them as we once did.  We feel like a family of five with one missing.  So, please don't be too surprised if you hear that I am not feeling excited.  It's just how things are right now.  It is going to take us some time to wrap our minds around the fact that Rachel is gone.  

ok, that was a long ramble...if you read this far, Thank-you.