Tuesday, February 16, 2010


I woke up disgusted.

Disgusted in every way possible.

Disgusted by the fact that Aviana can’t walk.

Disgusted that she can't talk.

Disgusted that she can't enjoy any food.

Disgusted that she can’t run around and play with Kama.

Disgusted that she cannot dance around to her favorite music.

Disgusted that I do not know what she would be into now. Would she finally like Hello Kitty? Or would she love Thomas like her best friend Lily? Who knows.....

Disgusted that she cannot draw a picture for the fridge.

Disgusted that she cannot laugh until her heart's content.

Disgusted that her life was ripped away from her.

Disgusted that we do an obsessive amount of therapy 7 days a week.

Disgusted that my parents worked their ASSES off to reach retirement and now cannot truly enjoy it.

Disgusted that such a smart, opinionated little girl was left speechless!!!

Disgusted that Dave has a long day at work only to come home and do therapy.

Disgusted that Aviana’s best friends lost their best friend.

Disgusted that it is so difficult to take Aviana anywhere and everyone has to come here.

Disgusted that we are stuck to our house.

Disgusted that I am completely obsessive about Aviana’s therapy, to the point where walks and time to love on Kama became boxes on the Excel spreadsheet per my counselor.

Disgusted that she can’t smile and tell me she loves me.

Disgusted that people pity Aviana and all of us for that matter.

Disgusted that my memory of the “old her” is not fading fast enough.

Disgusted that I am having to learn the worlds harshest form of patience.

Disgusted that everything is so, so, so, so, so, so, so, so, so, so, so, so, so slow!!!!!!

Disgusted that I had to go through and form piles of old clothes to give away...with the folding of each outfit, a glimpse of my girl passes before me.

Disgusted that the only time we really get out is for doctor’s appointments.

Disgusted that her wheelchair weighs 50 pounds.

Disgusted that sometimes I don't know which way to turn for happiness.

Disgusted that she cannot even crawl.

Disgusted that I have not been to the gym since the morning of the accident.

Disgusted that I can't listen to her sweet voice and her beautiful self point to a bird and say, "Mommy, birdie singing."

Disgusted that I don’t know if Aviana is happy.

Disgusted that she worked so hard and was potty trained 2 weeks after her second birthday, only to return to diapers on June 17, 2009.

Disgusted that I had to finally go into her backpack and see what it was she last left inside.

Disgusted that she has to tolerate an obscene amount of therapy every single day.

Disgusted that she has to sleep on a masonite board.

Disgusted that we had to make life and death decisions for her.

Disgusted that I have to ask for help as much as I do.

Disgusted that my family has had to endure one of life's greatest tragedies.

Disgusted that it is a huge production to run the simplest of errands.

Disgusted that my life is ruled by "ticky tacky" boxes. Day in and day out.

Disgusted that I cannot dress Aviana the way I did before.

Disgusted that I cannot sign her up for swim lessons or gymnastics.

Disgusted that, once again, I have to walk through the aisles of kids clothes, toys, etc. with a sadness looming in the depths.

Disgusted that I have no energy.

Disgusted that when I don't feel like making "28 meals," we still have to.

Disgusted that today, my Mom and I had to sit and listen to the neurologist say that Aviana’s ventricles in her brain may be expanding to fill all of the areas where her brain "died" and there is vacant space. He said it much more eloquently, but believe me, I picked up exactly what he was puttin’ down.

Disgusted that many times I feel lonely, but don’t want to be around anyone. Every time I feel this way, I think of one of my favorite lyrics, “Leave me alone, I’m lonely. Alone, I’m lonely.”

Disgusted that I can barely shop for Aviana anymore. I try, but there are only so many bows a girl can have.

Disgusted that when Avi decides to take a nap, I have visions of all of the therapy I am losing out on written all over my face.

Disgusted that I can’t pull Avi into the shower so we can spit water all over each other.

Disgusted that we do not have the luxury of getting pregnant, if we did decide on another child.

Disgusted that if we decided to have another child, we would have to come up with another $30,000 to adopt.

Disgusted that I cannot even fathom another child because it would cut into Aviana’s therapy time.

Disgusted that Aviana has no siblings to grow up with.

Disgusted that I do not know who will care for Aviana when we are dead and gone.

Disgusted that I cannot bring myself to write Aviana’s foster mother in light of what happened. I’d rather her not know and think we lost contact, than be completely heartbroken by the cold, hard, truth.

Disgusted with being disgusted.

I hope that I have sufficiently purged all of this negative energy out of my system. I hope I can carry on as I normally do. Optimistic, hopeful, full of love instead of anger, and of course with the usual sadness that finds its way in and out throughout the day!


  1. just sending love your way.

  2. ditto from me Jen. Lots of love heading your way today. You have every right to be disgusted and tired too for that matter. I am tired just looking at your spreadsheets. You are doing amazing things for your baby girl each and every moment of the day. Big giant hugs to you and Dave and Avi.

  3. I don't know what to say. I'm so sorry.

    I always told sissy (I learned this after years of therapy), and she would have to tell me this sometimes too, that there are times that it's easier to just give in to the negative thoughts.... for a bit. Because there are times when you fight them and fight them, to keep them at bay and spend so much time fighting them and then they come anyway that at times it's easier to just let them come, be pissed off, be angry and get it out of your system. I know sometimes I would spend days fighting off shitty feelings, not wanting to have them and they would come anyway, vs. just giving in for a few hours and then get back up ready for life again.

    I know our situations are not the same, I know that, and this is probably the exact WRONG thing to say but you know me, I'm gonna say it anyway, lol.

    Love you Jen.

  4. Um...ok, I got nothing funny for you this time. You caught me in one of those "I don't know what to say to make you feel better" kind of moments that we've talked about. I wish I could take some (or all) of of the disgust away so you wouldn't have to deal with it. :(


  5. I actually did just realize something and have to point it out, because maybe, just MAYBE??? it will make you laugh (even if just for a split second)... Blogger let you have SPACES!!


  6. Girly I know that I have nothing to say that will make you feel better...You do have every right to be disgusted with everything you have said...All of your lives have changed so much...One thing I CAN say for sure is that ya'll are wonderful parents doing everything you can and more for Avi...I hurt for you guys....Big Hugs...

  7. Please know that people care about you. I know that is very little but people feel your pain and care.

  8. I don't know what to say except I hear you...I'm praying for you.

  9. We don't know each other so that gives me no rights to comment, but I'm old and I spent 25 years working with families who had children with disabilities.....so here goes. 5...10...20 years from now, it will not matter one little bit if you skipped a therapy session or even a whole day of them. Put some joy back in your life. Go do something fun. You need those memories, too!

    I'll shut up now....after I send you a hug!


  10. Please, please do something fun just you and Dave. Let your mom watch Aviana. Don't worry about missing therapy. I'm sorry the doctor has to speak in "realities". Don't be so disgusted that you kill the joy you and Dave could feel as a couple. Share kindness and love w/ each other. Go rent funny movies, have you heard of roku? Put on makeup, put on something pretty every day,life isn't a drag no matter what. Feel joy, spread joy, grieve but look forward. Please don't spend the rest of your life and Aviana's grieving for what once was I think that doctor was trying to tell you not to spend all your time doing therapy sessions,love what you have.

  11. Your post was anything but disgusting. I'm glad you shared. I hope it helped, even if for a little while. I am sending virtual hugs and big, sloppy, DISGUSTING kisses to you!

  12. Thats some deep stuff Jen, just remember our conversation at Starbucks, its times like this that makes it hard. I agree, Dave and yourself need to go out and have fun, eventually all this will wear you down and become a black hole, step away for a moment and look outside. I would even come watch Aviana for you guys...Ill be the Drill Sergeant..."do some push ups Aviana....roll left...roll right..." just kidding, keep your chin up Jen

  13. I wish there was something I could say to take away even one ounce of your pain. I am disgusted for you at those things and wish you didn't have to endure such pain and loss. I will continue to pray for you my friend!!! Love and hugs!!! Amy

  14. I follow your blog religiously and the other day stumbled upon something and thought of you and your family. It is a non-profit organization that helps families that have a child/loved one with a disability. It's called UCP of Greater Sacramento. I called to find information out and they were really helpful (first good sign!)Apparently they only take referrals from "Alta California Regional Center" (www.altaregional.org)- you first have to be signed up with Alta through Avi's physician (you may already be signed up?)- you will be assigned a service coordinator. You will have to have your service coordinator contact UCP of Greater Sacramento (www.ucpsacto.org)to have access to their services. The organization provides in-home care so you can step out and run errands/go the the gym/go on a date - the services has no cost to the families. I can't imagine the nervousness of using a program like this for the first time (lack of control, etc., not knowing what to expect) but know that these programs are there to help and help families such as yours on a daily basis - I felt I would be doing an injustice if I did not share the information...

  15. OMG! Dave and Jen, I just don't know what to say. I just sat here and cried after reading this feeling so helpless for you. Wishing I could just come over and put my hands on little Aviana and God would make her all better. You don't know how many times in my life I have wished I had that kind of power or healing properties in my soul. I know in my heart things will get better it is just going to take a very long maybe, but they are always coming up with new stuff. You and Dave are the strongest couple I know. Although the trials and tribulations we go through are not always fair just keep hanging in there. We love you and think of you everyday and pray she gets better soon.

    Love Becci and Angela

  16. Love you guys, we are here for you if you need us.

    Steve Remedios

  17. I'm so sorry :(
    I am disgusted for you, too. Reading all that makes me angry, too. It makes me hurt, too. Because it's just so dang unfair!
    Just know that although it may not seem it now, things will get better as she gets better.

    Today is the 13th anniversary of Audriana's brain injury. February 17th is never a happy day for me.

  18. This is heartbreaking. I'm so sorry you have to go through all this, Jen. I follow your blog every day and am praying and pulling for Aviana and for all of you! I don't have anywhere near the right words to say, but please just know that your story, your words, are an inspiration to people who have never even met you! Seeing the pictures of your little angel and hearing how she's progressing... it's wonderful.

    Love and prayers for all of you!

  19. I'm so sorry have not been writing for so long, to be honest, it is because I, myself, feel so helpless how to make you feel better. I feel so sorry for all that you and your family has to go thru, as I know there seems no end to it. But, I do want you to know we are all here for you, even if in heart and I do feel so much love for your family. Please just continue to vent it all out and also find time to enjoy some pleasures in life, because life does have to keep going strong for you else you cannot be strong enough for Aviana.
    My love and blessings to you always..Deborah