Sunday, December 20, 2009

Silent Night (and Day)

Trying to summarize our weekend here on Sunday night. Where do I start....Jerad and the other kids were gone for the weekend. I stayed home with Ally. And I would love to paint a Norman Rockwell-esque picture of Ally and I doing all kinds Christmas merrymaking...but it just wasn't meant to be. I will just be grateful that we made some good holiday memories earlier in the month. Ally really seems to be suffering from the steriods...now we have two full weeks worth put into her body over the last three weeks. They really bring her down and we spent almost the entire weekend in utter silence. Emotionless. No smiles, no words, even pulling away from both Jerad and I as we try to give her a little squeeze or a kiss. It is almost as if she has a fog all around her, and I can't get to her. Communication is pretty hard...about the only time she spoke was to ask for a certain food. She was asking for all kinds of grand foods almost every hour. And making food all day long can tend to get to me too....but it is better than the alternative I always remind myself.

I know it could be much much worse right now. It is sort of sad to say, but that is what I focus on sometimes. Instead of thinking about better times, I instead think about worse times and try to rationalize in my head that everything is all good at the moment. Even though it could be worse, it could really be so much better too. We could have our normal lives back and not have to deal with any of this. I have to say it is quite painful as a Mom to see your child in the state that Ally is in. ESPECIALLY at Christmastime when most kids have all that magic dancing in their eyes and you can just sense their excitement building. We don't really have any of that. When all the other kids line up for Santa, we pretty much have to pull her over and she painstakingly goes through the routine with him. Every picture I have taken lately is of her with this really forced smile. You will see it in my video below.

I should not complain, but it has been a really hard weekend for me. Seeing my daughter like this hurts. Being confined in the house during the holidays...VERY DIFFICULT. I missed going places with friends and family and doing all the things normal people do. Ally's counts are so low right now...we had to skip some of our favorites: WSU game, church, shopping, parties, etc. I do owe a huge thank you to Lisa Wygant for having Ally over to her condo on Saturday so I could do some last minute Christmas errands(...and I am still not done. UGH.) And I owe another huge thank you to my elf friend Jenny Zollars who stopped by, picked up a load of gifts, wrapped them all, and brought them right back. People are so kind to help us through. And thank you to all the other offers I got too...

Last week we were driving around looking at Christmas lights and a song came on the radio. It is called "Better Days" and I distinctly remember listening to it last year...with everything going with Mom...and hoping that this Christmas would be different and better in 2009. I even copied down the words and sent them to my friends Suzanne and Nicki one night. But that was LAST year. And no, things are not better, but worse. I remember thinking that the only gift I wanted was my mom...and I got it momentarily, but then that was it. So this year, when it came on, my wish has changed. The only gift I want this year is my daughter. I want my Ally back and the cancer to be gone forever. The gift that only God can give me. She is ultimately his, but I would like to borrow her for a very long time. Here are the words....they hold so true for me. And the song is the in the slide show below.

And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

'cause tonight's the night the world begins again

And here is a slideshow I created of our past two weekends in pictures. To remember. Because I am all about remembering....

video

9 comments:

  1. Great slide show! We did miss you all today. I loved your arrangements! Praying for you all!!

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  2. Better days are coming my sweet. Thank you for sharing those great pics and the song, one of our favorites too, and so true.
    Glad the family is all together again, and we're praying for a good week for you.
    Love to you all

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  3. Janel - What a great slideshow!!! Better days ARE most certainly coming for you and your sweet family! Prayers and hugs from Alabama!

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  4. AMEN! Great posting and LOVE this song too! I play it constantly and usually sob my eyes out. Better days have to be ahead for all of us cancer families watching our children and ourselves go through EXACTLY what you have said. You are not alone! Hugs to you all.
    Diona Guy
    www.caringbridge.org/visit/allisonguy

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  5. I think remembering times that are worse is normal and a good way to stay focused on what you do have. The fog will lift . . . This part of the ride is worse than some of the others,but it will pass. Keep the faith Janel.

    {hugs, always}

    Amanda

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  6. Beautiful slideshow and that song is so powerful. I loved seeing your home decorated for Christmas and thanks for showing me the ornaments that your Mom painted. Better days are ahead Friend.

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  7. Mindy ( Bradens Mom)December 21, 2009 at 7:37 PM

    Janel, What a beautiful post. I sit here crying listening to this and Braden is holding my hand. Our kids are so strong. I am so glad to have you and ally in our lifes we love you guys and miss seeing you. God Bless you and Ally there will be better days. Janel Merry Christmas.

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  8. The slide pics were great. Can't believe all the things that your Father thought of for the kids. He had been working on it so long and it was a great success. Loved watching the kids ice the cookies etc. I am blessed to have such a wonderful family. Love Bam Bam

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  9. Wishing you all better days because you soooo deserve them! Merry Christmas!

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