Sunday, September 4, 2011

And Beyond

You might wonder why it is that we love our dog so very much. Well, we are dog people through and through. We were put on this earth to have dogs for the rest of our lives. One after the next, after the next.

For us, the truth of the matter goes so much further than that though. For all of you who have kids, imagine how much they bring to you each and every day. Think of all the funny, quirky, sweet things they are constantly doing to fill your soul. Think of all the non-stop action they provide, running, jumping, hopping, spinning around all goofy and crazy. Think of the laughs, giggles, smiles, and back and forth exchanges of love and life. Good or bad, just think of one full days two way suddenly, take that all away. Take away every single thing I listed above. What are you left with? Not much.

Now, don't get me wrong, there is a difference from before I had kids, because I was absolutely fine with what I am about to say, but now and in light of having had one, this is how I feel. There is not much that fills a day. The house is quiet. The two way interaction is pretty much non existent. And, often times, a lonely feeling is what I am left with.

But here's the clincher, not only take everything away, but leave the child that cannot do any of these things. Leave the child, so you have a visual reminder of what you had before, and what you will never have again. Leave the child, so you can pour every ounce of your being into rehabilitation until you are both frustrated with the total lack of physical gains, and exhausted from trying as hard as you have to give this girl the quality she so much deserves!!  Leave the child that cannot show happiness. Leave the child who cannot tell you what she wants or needs. What about the FC Board? Well, you can strike that out too, as that is almost never happening in this household. That does not carry any sort of consistent weight, at all. But wait, she can eat all her food, and enjoy it, right? The truth is, feedings are the biggest nightmare of the entire day. I swear she does not get hungry, and I double swear that she does not open her mouth, oh and I triple swear that they are the highlight of misery in our household. So, for the record, go ahead and strike that too. Aren't I lovely? Right about now, are you wondering why you come and visit us here at all ;o)

This is all too much to try and explain. This whole thing is really hard to put into words, even if you spent the day with us, or visited often. Those are merely snapshots and then everyone else has some distance from this harsh reality. Well, I guess it is the same with every challenging situation. You don't fully understand unless you are in it.

How is one to wrap their brain around this way of living? How is one to shut down everything you know of a life, and carry on? I have done my absolute best to make peace with this situation, but it is getting harder and harder with each passing day. More to come on that, but I just don't know how to do it. It has been over two years, and now is harder than it has ever been for us. From the moment we made the decision to carry on, now is the time I feared most in my head. Now is where I hoped we would never be. Right here. Right now.

Anyway, for all of the above reasons, this is why we love Rainey so much. She is life. She is constantly filling our broken souls. She is our interaction. She is able to show happiness, excitement and love. She is the one who is bouncing off our walls, and doing crazy funny things. She is the light that has not gone out.

As I write all this, I of course have tears streaming down my face. I know darn well this is not Aviana's fault. I know if she could, she would. I know she doesn't want to be like this, or be unable to do all this. I know she is just trying to have a life too. I look at her, and cry as all she wants is some joy too. I know she would never have chosen this life for herself. I know she, of all people, does not deserve this. I know she wants what we all want, love and happiness. I know. I know she just wants to be loved. I know. Is it Aviana's fault that others can express themselves and she can't? NO! Is it fair that Rainey, or anything or anyone else can fill a soul so completely and she can't? NO! I know. I know. I know. I know. I know. I know. I know. I know. I know. I quadruple times infinity know this is not her fault!!

I have all day to think about the nuts and bolts, and every single angle of this whole entire thing. And you know what, that doesn't help, because in the all doesn't matter because this IS, WHAT IS. We cannot change what is, and therefore we keep on going. We keep on doing the best we can, but that is not ever going to stop me from saying how this feels. That's what I always want to know from others, what does that feel like?? Well, this is what this feels like to us!

We of course love Aviana, but it is just so different. We love holding her and loving on her, but she doesn't feed us in a certain way. And there is no way around it. Well shouldn't the point be you feeding her? Well, we always do the best we can. She is sweet and cute, but all of the stark reality surrounding her is just too much to bear sometimes.

If you are here ~ ~ ~ ~ I know this was all over the place, but that is how I feel lately. Thank you so much for staying with me, and listening to me.


  1. The only words I can think of right now are, I love you.

  2. I wish I could reach out and hug you tight. I can't take away the pain...but I wish so badly that I could.

  3. I have been reading your blog on and off for a while, but have never commented before. Your story really touches me, and you write so honestly and beautifully. I am so sorry for your hardships and struggles. You, your family, and Aviana especially, do not deserve it.

    You haven't written about this before (as far as I can tell), but prior to Aviana's accident, did you and your husband consider having (or adopting) additional children? I only ask, because another child would bring that life back into your house. It would light up your life, and Aviana's.

    Obviously, this may prove impossible given your schedule, Aviana's therapies, etc. But have you ever thought about it?

  4. Jen,

    How I love you and your honesty. I LOVE that you are so real, you put everything out there in a way that lets us, the ones who cannot possibly BEGIN to IMAGINE what you deal with every second of the day with never one second off, see a glimpse into your day. You are sooooo right, nobody can understand until they've been in it. I have no idea what you go through. NO CLUE. And I would never begin to give you advice about something that I'm so ill equipped to deal with.

    I think it's GREAT that you have Rainey. I think it's GREAT you are dog people. I think it's GREAT that you have a sliver of life with Rainey.

    I'm also so sorry you have Rainey. I wish you had Kama. I am so sorry you had to have Rainey because Kama is gone. I am so sorry that Kama can't give you your sliver of life.

    Because I'm so ill equipped to give you advice about something I have NO EXPERIENCE with (and I hate it when Joe Blow, or worse yet, a grief counselor who has never lost anyone close to him) tries to tell ME what to do and what will make it better for me (because really, nothing makes it better, some things just make it bearable) I will simply say what Christie said:

    I love you.

    I love you just the way you are (isn't that a song?).

    And start a countdown to meeting Gary Allen! I'm going to have to look him up on Wikipedia since I know nothing about him. But I'm glad you and Dave will have a night out to just RELEASE. RELEASE EVERYTHING!!!!

    I love you.

  5. holy crap, didn't realize I was writing a book. So what do I do? I write some more, haha.
    ♥♥♥Love you♥♥♥

    (the hearts were just for you ☺)

  6. I think of you all when I get a hug from one of my kids.

    I think of you two when one of my kids says "Love ya Mom."

    I think that you do NOT get this. Your parental "bucket"is empty.

    The bad days around here are balmed by the good days or good memories or even something funny a kid said an hour before.

    You don't get that.

    You have no ointment to rub on your broken heart. No balm to soothe the sting of what was stolen.

    I can only be immensely grateful that you do have Rainey (and memories of Kama) and that Rainey DOES feed you in a certain way.

    With nourishment...people fade away.

    You must fight to find that nourishment in ways other than from Avi right now.

    You said yourself, "She can't do it."

    I was in PTSD therapy complaining about how my husband "never this" or "never that" or "does get this" and "doesn't say that".

    My therapist looked me straight in the eye and said, "How can one person do all that you are asking? Spread out your needs. People will fill them. Let up on your husband for God's sake."

    And I did. And it helped.

    Find nourishment from God, an astounding book, painting your toenails a funky color, watching favorite movies, delicious food (that YOU eat)...

    Just like the stewardess' on airplanes inform parents to put their 'oxygen masks on first' (b/c a parent who can't breathe can't put a mask on a child)...

    You need to put your oxygen masks on. Let Rainey help. FORCE yourself into a different area of interest....

    I KNOW you don't have the time. Make it.

    Things that are not nourished....fade.

    We will not let you fade Jennifer. Not happening.


  7. My heart just aches for you. I can think of a lot of things I could say, but I have no idea which of those things would be helpful and I wish I could be. I guess mostly I want to tell you to take care of yourself. You are loved!


  8. I will never understand what it is like to be you and to live what you live every single day. I really would do anything to take it all away for you.
    I am not surprised that it is getting worse now, two years later. Now you have had years to let it totally sink in, the newness has worn off, the reality has set in. You have drained yourself of all of your positive reserves. It is all natural. That is how the grieving process works for many people. You finally hit the realization in full that life will never be the same. Just know that it always gets worse before it gets better. A wave will bring you back up to shore and let you breathe again. Just try to keep your head above the water until that happens.

    Dogs really can help heal the soul.

  9. Wow. You did a great job explaining what Rainey means to you and why. I can't begin to understand what your day to day life is like. Just know that all of us who read your blog think you are amazing. Your dedication to your daughter is felt through your writings and I know that Aviana feels it too. She is lucky to have such dedicated parents....and especially a mom who dedicates all of her time to her. You may not think she's making improvements...but she is. Who knows where she'd be if it wasn't for all you've done for her. You are amazing. Don't be so hard on yourself. Like the above poster said...spread out your needs and let others fill them. Sounds like you have a great start with that with Rainey filling needs that a child would normally fill.

    Question...have you ever considered Equine Therapy for Aviana? Might be good for her (and you too!). Just a thought. I honestly don't know much about it or if she'd even be a candidate for it. Just thought I'd throw it out there.

    Hang in there! You are making a difference in her life and the lives of other people out there who are struggling with the same struggles you are.

  10. Also....probably a stupid question....but have you ever thought of joining some sort of support group for people in a similar situation? In person would be ideal but even online would be helpful I'm sure.

  11. You are an awesome mommy! And if Avianna could I am certain she would tell you THAT twenty times a day and also that she loves you to the moon.

  12. Audriana did horse (Equine) therapy. It was WONDERFUL for her. I know that her brain injury is not the same as Aviana's, but I saw so many levels of disabilities while we were in that program, and there are some just like Aviana. The therapists will hold the child on the horse, if necessary. It is SO good for them! Do you know if there is a facility that does this near you?

    Trina :)

  13. Still here. And I get it. So sorry for every hug, smile, kiss, and giggle that is missing. I hope Rainey knows how lucky she is. :) <3

  14. Jen,

    You do need to take time for yourself. My sister is living with me with her husband who had a horrible stroke. It was in May 2009. It has been over two years. He still does therapy...but sometimes he does not want to. He cannot communicate....He tries to walk...but still clings to the wheelchair. He cannot be left alone. He does not want to go anywhere, so my sister, gets up every day, feeds him, showers him, takes him to the bathroom.....never gets a full nights sleep. Just so you know. We have four dogs. They keep laughter in our home. I know it is not the same....but my heart and prayers go out to you and your family.