Friday, October 25, 2013

Night Rider

When Aviana took a turn, everything changed. We took her out of school. Dave no longer went to work. We became somewhat stuck like glue. There were a couple days in the beginning where Aviana slept more often than not, but after that, she has been awake most all the time! She stays up until 11 or midnight. Often times, she is up early in the morning. So, we spend all of our time with her. I've written about most things we do. She has been so alert and attentive. Despite the obvious difficulty, it really has been nice. Lately, we've been taking her on walks, and up to the park as well.

For the first six days, I didn't leave the house once. Not because I couldn't, but because I just didn't want to. I wanted to be here every second, if ever she needed me. That's not to say we don't give her space though. We do.

One thing we learned early on is - she absolutely, positively doesn't like when we sleep with her. She doesn't mind if we lay with her at night before bed, or in the morning after she wakes up, but never sleeping with her. It's one of her rules...from the get go. I've got stories from before the accident that would make you laugh, and at the time, made us want to rip our hair out ; ) So...we make sure to let her sleep alone.

After six days, I felt it was time to give her more space, just in case. Even though I didn't want to, I forced myself out the door. Each time, I have this mantra on repeat, "it's about her, not you." You know you're in deep when you grab your brother, go to Target, walk around aimlessly and all you have to show for your trip is a box of Fruity Pebbles and Cookie Crisp. We're talking Target! That's it?! No tiny, little Halloween shirts, and matching leggings. No starry night skirts, perfect for school. I had to slam my eyes shut, just like I will forever.

I am a Night Rider. I go on Night Rides. I leave an hour, to an hour and a half before the stores close. I put my music on blast and crawl into the songs. I have gone three times in the last week, to give her time if she so desires. I walk the stores, for nothing. I talk to Adam, my right hand produce man. I tell him, "I swear, I will be so sad if she dies and I am sitting her at Whole Foods killing time." But the reality is, if that's what she wants, I will find peace in it. I will be fine.

I know the truth, and the truth is a slight slant on that old Stones song - you don't always get what you want, you get what you need. I know she will give me exactly what I need. Somehow, she always does.

16 comments:

  1. Mom waited until I left the room. Aviana knows you are there for her. Be at peace.

    ReplyDelete
  2. Aviana's lucky to have such a tuned-in Mama, who respects her wishes. Much love your way.

    ReplyDelete
  3. "Do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand". Isaiah 41:10

    ReplyDelete
  4. My heart is breaking for you...you are an amazing Mama. Thinking of you.

    ReplyDelete
  5. I'm over here carrying on in my busy days like I always do, just typical stuff ....and over over there you are dealing with that. How is it fair? How is any of this fair. Life...is all but fair. Fair is a silly, made up word that doesn't exist. I'm almost convinced of that.

    I'm constantly thinking of Avi. She is on my mind and in my heart. She will forever be in my heart.

    ReplyDelete
  6. I've read every post and every comment over and over these last few days, trying to think of something helpful to say, something that someone else hasn't already said, better than I could. But, you say it all so much better than I ever could. I believe, as you do, that Avi will go on her terms, when she is ready. And, I believe you and Dave will be OK, sad of course, but ultimately OK because you two have given her everything you had to give and it is enough. Please give her an extra kiss from me and know how much I love all of you.

    Love,
    Dixie

    ReplyDelete
  7. Don't know what to say...can't imagine. You're in my thoughts daily!

    ReplyDelete
  8. I haven't checked in as often as I used to (computer issues). I am praying for you and your precious baby girl, your whole family. That's all I can do

    ReplyDelete
  9. Are you letting her starve herself?

    ReplyDelete
  10. I think about each of you through out the day & just had a "late night" thought about getting a kit and make imprints of all of your hands together! Avi is an amazing child that has brought so much love, smiles, & education to many on what families go through. Love and hugs to all of you! You are my Pie hero!
    Julie n Texas
    .. P.S. Anonymous right above me, go back to 2009 and read the beautiful story of Jen, Dave, Kama, Aviana & Rainey - you will LOVE it!

    ReplyDelete
  11. Jen and Dave...I also have been reading your posts, as always...but haven't known what to say. I can't imagine what you are facing. We have recently gone through a very difficult situtaion with one of our kids...shocking, sad, grevious. But we saw that God was with us through all of it. I learned more about what shock and grief can do to people. But it does not compare to what you are going through, as you prepare yourselves for living on without Aviana beside you. You are in my prayers...and my heart is with you all, as I read your brave words, describing these days. I do know that you have to do what is best for all of you, to see yourself through this difficult time. In our situation, again not anything like you are experiencing, we saw that the most difficult days were alsovery precious and treasured days, because the three of us (my husband, daughter, and I) needed to pull in and spent a lot of time together. If that makes sense to you, I pray that your difficult days are also very special because you three are drawing even closer through this time. Again, didn't know what to say and probably haven't said it well. Your thoughts and actions during this very difficult time, your consideration of all things Avi...truly show your deep love and commitment and respect for your daughter. May you know God's peace during this time.
    Nancy in the Midwest

    ReplyDelete
  12. have no idea what to say. thinking of you.

    ReplyDelete
  13. Oh my dear soul sista. I want to fly back rent a convertible and scoop you up. We would put the roof down, ( if Aviana were feeling up to it bring her as well) play all her favorite songs and sing them as loud as we could all the way to Target. Give her a few spins around the store and if she sees something that makes her eyes light up, it's hers. They say everything looks better in the day, pish posh. Bring on the night. Everything looks all muted and blurry, your mind is tired and your feeling a little numb, numb is good. I have always done some of my best emotional healing and receiving answers at night. Just as you have always taken care of Aviana and her needs in this life. She will do the same for you in her death. I do believe she will go in a time and way that will bring her family the most peace. With out a doubt I believe she will be joyful and welcomed in by her loved ones. Yes, I absolutely do believe that includes our animals. Kama, raining down beautiful doggie kisses on yuor beautiful Aviana. What could be more right and appropriate than to be met by mans best friend? God gives us what we need in life and death. What I know to be truer than true is that he will not leave us without. He is all consuming love and compassion. Letting yourself be cocooned in that love will allow you to be able to endure unimaginable heartache. As always prayer for you and yours. Peace out Hodders

    ReplyDelete
  14. I think of your family many times throughout the day. You are all an inspiration to me and have made me a better person because of your story. Please know that Avi and your family's story have positively changed the lives of others. I will continue to think of and pray for your family often.

    ReplyDelete
  15. Jen and Dave, I'm so SAD to hear about Aviana, she will be missed so much. The cliché, time heals doesn't describe the loss, but you learn to go on and realize GOD sent you that angel and treasure all the time you had with her and know she is back with GOD, in an unimaginable better place and you will see her again one day. You are in my thoughts and prayers.

    ReplyDelete
    Replies
    1. from Aviana's school bus driver, Lisa

      Delete