Wednesday, September 7, 2011

Standing On The Bridge

The moment we decided to carry on with Aviana's life, a number of terrifying things crossed my mind. I voiced all of them to my counselor, and she proceeded to teach me the most valuable lesson ever, and that is to cross that bridge when I come to it. Through trial and error, I eventually have had some success in this area ; )

Well, I am currently standing on the bridge. I am not sure which way to go. My feared moment has arrived, and it looks something like this....we had endless hope in the beginning. The world was so full of possibility, and we honestly thought she was going to knock the beast out of the park. Through a dear friend, we had just the program we needed. We were planning on devoting our every moment to Aviana's recovery, which included traveling back and forth across the country. We had a plan, and it was a great one.

It was difficult, but we knew what we were doing. We were driven by hope, and there was nothing stopping us. For 15 months on the program, we never really wavered. We were strict and had every single thing in order. There were of course bumps along the way, but nothing we couldn't manage.

Aviana was making huge physiological strides, but not much in the way of physical. We had heard some discouraging things, such as - she was the bottom 5% of the most hurt children they have on their program, and of course the normal awful facts from her neurologist, but we took it in stride and carried on.

We were supposed to start the program again yesterday, and we didn't for two reasons. I had a monster migraine, and we were not sure how to proceed. The amount of work we put in, compared to the amount of progress Aviana made, does not equate. It just doesn't add up. If you remember, this past time at The Institute Aviana's neurological age stayed at 19.2 months old. In 7 months, she did not budge one bit. We all know success creates motivation, therefore with little success, there is little motivation. And that is where we have found ourselves. It was sad to hear, but we knew she had indeed benefited from the program. The truth of the matter is though, our hope is dwindling, and for the first time we are teetering on the edge of acceptance. Moving into the acceptance realm does not feel the least bit comfortable to me...any day of the week. The truth is staring me in the face and telling me otherwise though. I can no longer ignore it.

I have talked extensively to my counselor because I am really kind of struggling. I had been feeling jaded lately. She said I am not jaded and am finally grieving. I laughed, grieving after over two years, really? Once she explained, it all made sense. She said I haven't had one moment to grieve, because I have basically been spinning around like a top. Fighting for Aviana while she was in the hospital. Protecting my family. Fighting for services. Making sure my Mom and Gary were okay. Fighting all of the entities. Killing ourselves on this intense program. Battling all kinds of other family drama. I have finally had a moment to breathe, and sit, and think, and boy it sure doesn't feel good sometimes.

So what to do? I don't know, but I started her program again today. It just felt right. They ramp us up nice and slowly, so we don't lose our minds right off the bat. It feels great to know I am again helping our sweet little one on this journey. That alone is sometimes the best feeling in the world, and I hope to never lose it. These past days have been good, but I am just not sure we will ever again go at the unrelenting rate we were at before. The minimal progress is just not worth breaking all of our backs for.

The future is a big unknown, and I am not sure which way to go, but we will figure it out...we always do ;o) That in itself is one constant I am so thankful for!

Please keep some happy thoughts for us. We are seeking all the guidance we can, and sure do welcome any positivity sent our way.

Thank you


  1. Positive thoughts being sent your way (everyday)!! Avi is so lucky to have you two on her side and knowing what is best for her! I'll be thinking of you as you start up the program!

  2. You don't know me, but I have been following your blog for sometime. I have fallen in love with your sweet little Avi. My heart aches for you when you are struggleing the most, and it soars when things seem better.I know that our Father in Heaven is aware of your family and that he will continue to bless you with the help that you need to endure. Life can be so hard, but so sweet too. You are a good mother and show such love for your little one. Thank you for sharing with me! Love to you and yours, S Fish, Orangevale, CA

  3. Whatever you decide, we love you and will be here to support you. *hugs*

  4. Time to think can suck, can't it?

    I love you.

  5. Here for you always ♥

    Sending positive thoughts your way always ♥

    Loving you all always ♥

  6. Holding your family in the light-always. Guidance: Do that rain dance you speak of in your blog title. We sure could use some here in Texas, wildfires and all. Other than that, research the amazing results seen from the following: Nutriiveda, The Anat Baniel Method and Pediatric Chiropractors. Sending you positive vibes and praying for your continued patience on your journey.

  7. your counselor made perfect sense with that, yes you have been grieving, but not really a let down grieving since you have been going full throttle all the time since the accident.
    Still all just sucks big time, I hope that somehow she has a big turn around, I remember my feeling of elation when you posted about doign the board and though who cool because at least she will be able to communicate. When you guys askedf her why she didn't smile she said "can't" broke my heart and it keeps replaying in my head.

  8. I am so disappointed to see this here. You are such a fighter; you've already made the right decision, you just can't see it clearly yet. Thinking of you x


  9. I think you have a wise counselor.

    I think parents are typically the best teachers for their own children because they care on a level that no one can or does. I also think it's OK to share the load with others. You don't have to do it all yourselves.

    Wishing you nothing but the very best!

  10. (this turned out to be very long and I've had to break it off into separate posts - sorry about that!!)

    HI Jen,

    I've been reading all your posts lately and haven't commented because the words just don't seem adequate. But today I will give it a shot.

    In the first few days after Audriana's accident, I was terrified. They didn't know if she would survive or not. It was so touch and go. That was the most frightened I have ever been in my life. Then, once we knew she was going to survive, I was filled with hope. I knew that she had a large mid-brain hematoma and that it would take about 4 weeks to go down, and in the meantime many of her functions were "blocked" because of this large hematoma. So each day as it subsided and healed, I would get slight improvements from her. So I was always looking forward to the next day. I kept imagining that once that thing completely healed up, her brain would just be normal again. But soon, I began counting down what was left of the 4 weeks with dread. After 3 weeks when she was no where near what I had hoped for, my hope diminished. Then once the 4 weeks arrived, I had to have a new plan: new hope. Because it completely SUCKED having no hope.

    We jumped full speed into the Institutes program after that. I had new hope again. Every single day for almost 3 years we did that program. I don't have to tell you how many hours a day that is. You know. And you know how driven you can getting those activities checked off each day can become like an obsession. Audriana kept having improvements, so we kept going. Then we reached a plateau after the second year. She was having new no improvements, yet we were working harder than ever with the program. It is VERY discouraging to work, work, work when you see no results! I know I don't have to tell you that, I'm just confirming what you've already said. After that second year, I will admit that I didn't give it my ALL anymore. I started slacking on the check-off list, not completing it all each day. We took more days "off" than we were allowed. I started looking into other forms of therapy to do "on the side" - just desperate to find something else that might work for her.

    It was at that point, at about the second year after her accident, that I finally slowed down enough to grieve. Up until that point I kept myself focussed and busy - just busy, busy, busy - so that I wouldn't have to see things for what they were. It was a form of denial, in a way, because although I knew her brian was hurt...I didn't want to accept that this was her new reality. If I stayed busy enough, I could make it better. If I stayed busy enough, I still had HOPE that I could get my old daughter back.

  11. Of course I didn't realize this back then, but now I can see that I had a very hard time coming to terms with what had happened to my little girl, and when we reached the two year mark, I felt THE WORST that I had ever felt, even worse than when it first happened. Because it was then that I realized that after all the work, work, work and all the busy days and the WORK we did...she still was very brain injured. She wasn't coming back from this. She was disabled, and it killed me to see it for what it was. It was then that her reality - my reality- finally slapped me in the face. WAKE-UP! it screamed, THIS IS IT! And I became very depressed. Very sad. Very angry. Not happy. And now I can look back and I can see that Audriana deserved better than what I gave her at that time. She deserved a mommy who enjoyed her IN THE MOMENT, JUST AS SHE WAS - after all, it wasn't her fault this had happened to her -- but instead she had a mommy who lived in the past and MISSED THE OLD HER so much that it clouded any happiness that I could give her in the present. I was in a big time FUNK and did not know how to pull myself out of it. I felt hopeless.

    How could I ever be happy again when my child is like this????? That was the fear that was in my heart every day when I woke up, until the time I went to bed. I thought it impossible. A life sentence for both me and her. And that made me so, so sad!

    And then one day, a brain injury newsletter of some sort came in the mail. And I opened it and read something that change me completely. I think I have already shared this verse with you before, but it's worth repeating:

    Life is a one-way street.
    No matter how many detours you take,
    none of them leads back.
    And once you know and accept that,
    life becomes much simpler
    because then you know you must
    do the best you can with what you have
    and what you are
    and what you have become.

    I remember reading those words, and dissecting each line to suit what I was going through:

    Life is a one-way street.

    No matter how many detours you take
    (no matter what other therapies I try on Audriana, no matter how much I try to wish it all away or to go back in time)

    none of them leads back.
    (she may have slight improvements but she will NEVER be the little girl she was before. There is no waking up from this nightmare.)

    And once you know and accept that
    life becomes much simpler
    (when you reach the bottom...there's no where to go but up!)

    because then you know you must do the best you can
    (find a way to be happy in your new normal)

    with what you have
    (a beautiful daughter who happens to be disabled)

    and what you are
    (the mother of a child with a disability)

    and what you have become.
    (a more patient person, a person who no longer takes the little things for granted, a strong person - I became all those things without even realizing it. Her accident changed me, for the better...but I was too blind by grief, heartache and disappointment to see it.)

  12. Jen, this hand that you have been SUCKS ROCKS big time. You have every right to feel the way you do. It's completely normal. And it IS what it IS right now, and you just have to go through these emotions but please know that they are normal. And I promise you this.... you WILL come through this. You will find a way to enjoy Aviana again.

    Right now...I believe you have hit bottom. You have realized your one-way street. I believe you are at this point. And as awful as it feels, it's actually a very good thing. Because you can only go UP from here. And you WILL go UP! Because you are strong like that.

    I think it's great you are getting back to work with the program. I DO HONESTLY believe that Aviana still has some improvements to make. What I would suggest to you is this: do some or all of the program with her, but also make the time each day to actually ENJOY her. I remember back when I was doing the program full force, that is the one thing that I never did with Audriana. I did not take the time to just appreciate and enjoy WHO SHE WAS AT THAT MOMENT. I regret that, because she deserved so much more than what I was giving her. Kids are very in tune to their parents' feelings. Especially brain injured kids, because a lot of the time they don't have too much else going on in their day EXCEPT their parents' interactions...and I know that Audriana knew that I was not happy. And I know that she knew that my unhappiness was directly related to HER, it was because of her that I was so sad. It hurts my heart right now to think of what she must have been thinking back then. She must have felt like such a chore to me, like she disappointed me. And the truth was...she did disappoint me. It wasn't her fault, of course... but I wanted my non-brain injured daughter back. On some level, she must have known that. I wish I could go back and do some things over.

    But after I read that verse, I changed. I really did. It was a wake-up call for me. And I began to take time to really be WITH her and enjoy whatever it was that she and I could do together, to enjoy her for who she was in the moment.

  13. Oh this comment is getting way too long, but I have one more thing to say. Maybe I already told you this before, too (I tend to forget what all I tell you!) so I'm sorry if this story is redundant....

    When Audriana was about 18 months old, I had an awful dream (I thought it was awful at the time, at least). In my dream I was walking on the beach, and I was holding the hand of a little girl...and as I looked down at her I could see that she was about four years old, and she looked up at me and smiled, and my heart jumped for joy! - I realized it was my Audriana! all grown out of her babyhood and four years old! In my dream I knew she was four years old. I remember that very vividly. She was so pretty, just skipping along with me, holding my hand. And I looked away as we kept walking. The sun was shining, and I was filled with such happiness. Then, about two seconds later, I looked back down at her...and she was still there, but she was translucent. I could see straight through her. She looked up at me again and smiled, but this time I was filled with dread. She was like a ghost. I could see her, but could anyone else? I could not feel her hand in my hand, but yet we were holding hands. For a moment I was filled with terror. She was not the same little girl anymore! How could I go on in life if she looked like this? What if no one else could see her except me? And then, just as quickly as that terror filled my heart, a complete feeling of peace filled me. I realized that although this was not the SAME, and SHE was not the same, she was still MY daughter. She was MINE and I was HERS and nothing could change that, not even her new existence. And I didn't care if no one else could see her, just so long as I could see her. I remember feeling such a calm, peaceful feeling. Acceptance. And that is when I woke up.

    It was a very short dream. It was probably just 60 seconds long, if that. (if dreams can be measured in time, I don't know) But I woke up from that dream completely confused, and a bit scared. I called my best friend and woke her up just to tell her my dream. She assured me it meant nothing. But I worried that it meant Audriana would die at the age of four (because some of my dreams in the past came true, so I worried this one was trying to tell me something) She was so ghost-like in the dream, what else could it mean? I hung up with my friend and immediately wrote the entire dream in my journal. Like I said, she was just about 18 months old when I had this life went on, and I forgot about the dream. Then, when we were in the accident, and my 4-year-old Audriana lay on that hospital bed with tubes all in her and her brain swelling by the second, and the doctors told me there was little hope...I remembered back to that dream. My best friend was with me, and I said to her, "My dream...remember my dream!" I was so terrified that she would die, that my dream would somehow come true.

    But she didn't die, as you know.

    And yet...didn't my dream come true? Yes, it did. And here is how I see it: I'm walking along in life with a perfectly unhurt daughter. Life is great. The next second, I "look down" and she's completely changed. I'm so scared, this is THE WORST THING EVER -- how can I ever enjoy her again? the way she is? But then I realize...I am still her mother and she is still my daughter. Nothing changes that. I still love her and she still loves me. And we need each other. And I don't care if no one else can see what I see. It is what it is, and the two of us will make the best of it. And I WILL be happy. WE will be happy. We deserve to be happy.

    (it took me less than 60 seconds to come to this realization in my dream, but yet it took me over two years to come to this same realization in my real life. Obviously, dreams cannot be in it was sped up for my benefit, LOL)

  14. That dream didn't make sense to me at first, but now...I can see it. I believe God gave me that dream so that I could remember it at a time when I was ready to make the comparisons.

    Jen, I pray with all my heart that Avi makes more improvements! Like I said, I really believe she still has recovery to be made. Her brain will grow and change as she gets older. There will be new things she will be able to do. But in the meantime, I pray that you find peace in your heart. I know that the pain will always be there. How could it not be? But you can still have pain and have peace at the same time. You can have pain and have joy and happiness, too. You will come to this at your own time, no one can rush you. Even my story and my words cannot make you feel what you are not yet ready to feel. But I know you will get there.

    I'm sorry for writing a mini-book. Like always, I just have too much to say.


  15. "At the end of the day, you can either focus on what's tearing you apart, or what's holding you together."

  16. Remembering I know nothing of the shoes you all wear, I gotta say, a 19.2 month old usually isn't able to spell what she wants on a letter board like your Avi. You are doing well just the way you are choosing to do it. It is your family, your time, your daughter and your future. You will do exactly what is right for all of you and I support you 100%.

    Damn it, you have done amazing things and your counselor is right...Cross that bridge when it comes and take the time to mourn. You have that right and it is good for your well-being in the long run.


  17. I will support you in every step that you take. Big bear hugs for you and lots of love coming your way.

  18. Thinking of you lots - we all have our own journeys and no two are the same. I know some how, it will all work out for all of us - with what works for each individual family. Hugs.