Friday, February 11, 2011


From the moment we made the decision to carry on with Aviana, there was a certain specific point that I feared. It's been a few months coming, but I have arrived.  I am currently standing in one of the toughest moments since the accident. I am at a place where I have realized that therapy is really not doing too incredibly much, and acceptance is inevitably on the horizon.

I feel I am standing in the center of my very own feared crossroads. I am not sure which way to go. I see the 2-year mark in my mind, and have to be completely honest, the improvements don't look too much different than the year mark, or even the six month mark.

I don't want to be a complete downer, but when I really look around, this is what I see ~ physiologically, she has moved in leaps and bounds. She is not vomiting. She is off all medication, and has just reached her goal weight of 33.7 pounds. That is a TEN pound loss from her highest. She is eating all of her food by mouth, and is able to move on the flat floor (backwards, I might add :o) up to 18.5 feet. We have asked her to kick it into drive, but she much prefers reverse.

Don't get me wrong, these are all wonderful things, and I am happy she has advanced, rather than declined. What kills me though, is when I think of the most basic functions of life. One of them is holding your head up, right? Well, it has taken us almost 2 years, and a crap load of work, and this simple little task is occurring minimally.

Some may think I am unappreciative, and honestly I feel that very same way about myself from time to time, but anyone living the life we lead would completely understand.

We have literally worked our fingers to the bone, both day and night. 365 days a year.  The facts are staring us straight in the face, and it's getting harder and harder to look away. The results are so small in comparison to the astronomical amount of work we have put forth.

I am sad to say, that hope has been withering away. Our motivation is dwindling, and I am finding myself sliding into a tiny little bit of acceptance. All along, it was against my will, but slowly, but surely, I have to face the facts.

I have always had full faith in The Institute program, and still do, but I think certain kids can only progress so much. Sadly, we have come to the bitter realization that Aviana happens to be one of these children. I sure hope she proves me wrong though.

We felt very comfortable with what we were doing, and whole-heartedly believed it was our best chance. We have always felt that if it didn't work, we had done our best, and we would make peace with our situation.

The funny thing about finding yourself in a place of hopelessness is you begin to entertain other ideas. Ideas you didn't think you would explore.  In my heart, I feel we are truly grasping straws, but we have been seriously contemplating stem cell. We are also looking into a variety of other options as well.

We have a lot to think about, and I have no idea which way our road will turn, but I do know one thing....the intensity of what we are currently doing is not the right answer. For if Aviana were making strides, not even huge, we would be motivated to intensely continue this program for years on end.

We are definitely not going to stop the program, but we are going to carefully tailor our own days based on what we are seeing.

Please keep us in your thoughts, as this is one of the worst places for parents to find themselves.

Thank you :o)


  1. Continuing to pray for your sweet family and the decsions you need to make. You and your family will always have prayers and encouragement in Delaware!

  2. In my thoughts....I understand this crossroads...I go back and forth to it all the time....hugs and thoughts and prayers all headed your way. Remember there is not right or wrong path right's just YOUR stay true to yourself.

  3. I believe you will make the right decision....for you and for Aviana.


  4. We will surely pray for the wisdom, guidance and peace that you need to make such big decisions but I have no doubt that ya'll will do the right thing becuase you have thus far. You both are such wonderful and dedicated parents who amaze me to pieces!! You will do what is best for your baby girl. That, I am sure of!!

  5. We will certainly pray for you and Dave as you make your decision. Such a hard place to be in to have to make that choice! But you have been in a hard place anyway! I have been following your blog for a long time and such courage and honesty you have for posting your innermost thoughts and struggles here are amazing! God bless!

  6. Whatever decision you make will be the right one. You know best, never doubt that for one second. I know the amount of time and thought that you are constantly putting into making these decisions is overwhelming. That alone takes a lot out of you. I am glad to hear that you are considering your options. You are in my thoughts and prayers as you travel down this new road. HUGS!!!!!

  7. Your family is always in our thoughts and prayers. Lots of love - Jill

  8. I'm so sorry for the pain you are going through. I understand how hurtful it is to realize these things. Follow your heart. Continue to make the best choices for Aviana and your family. Hugs to you.

  9. I sound like a broken record but I cannot imagine what you go through day in, day out, day in, day out, 24 hours a day, no time off. I second what Dixie said, there is no right road or wrong road, only YOUR path. As far as stem cells, hey, if there is ANYTHING at all that MIGHT help, do it if it feels right or if you feel you need to do it. Trina did anything and everything to fight cancer. Jen, if I prayed, I'd be praying constantly for you and Aviana. But instead I think of you constantly and know that you will do whatever is right for you and Aviana and Dave. I stand behind you and support you 100000000% and you know I will kick anyones ass who tries to put you down!!!! I love you!

  10. Praying for you as you choose which way to go. I can't even imagine all the choices you and Dave have to make. Hugs from Canada, Deanna

  11. Understanding you and holding your virtual hand. ;-)

  12. I'm with Shauna. I really do get it - we are just past two years, and I feel much the same way. Hugs.

  13. crying.

    My heart. For you all ... it's breaking. I am just reading this due to being out of the looop for a bit.

    This crossroads. It's more than just a decision, yes? It is chosing a new way of life potentially. It is making life decisions for another person.

    I wish 'writing in the clouds' were real. that answers to horrible questions could come that easily.

    I wish. Dang I wish so much for you.

    I wish for easy days. For easy smiles. For easy picnics, trips to Tahoe, and loads of easy memories.

    My friends...I think you are truly insightful and amazing. That you are able to step back and survey the forest for the trees and make difficult decisions as a result.

    I feel it speaks LOADS for you. I do not see it as a "we are tired" action. I view it as what all parents need to have the ability to do.

    To look at what we are doing for our children and deem if it's working or not.

    Your decisions are exponentially more difficult than others but I screamingly applaud you for having the guts to do what it takes for Aviana to amke progress.


    Oh man...the wishes...


  14. Always thinking of you guys are amazing parents to Avi. Praying that you find clarity in your day to day routine. Hugs

  15. Thank you for writing this--very cathartic. Glad to be back in touch at such a challenging, disorienting and exciting time. Praying for you all!! <3