Wednesday, May 25, 2011

Something's Gotta Give

I have talked about this subject over, and over, and until I am blue in the face. And, I truly have come a long way, but there is still a much longer way to go.

Sadly, often times, when I look at Aviana, all I see is work. Work, work, and more work. Unfortunatley, I know she looks at me in the very same way...."Here she comes, the freak with that damn plastic bag...." Sure, we get in our time together, but sometimes I wonder how much of the day is true, quality time.  I am scared to add it up.

My days, and nights are spent mulling over the program, devising a new master plan on how to beat this brain-injury beast, talking to Dave, putting a new, and improved plan in place, explaining it to Lesya, and all others involved, ordering more lab tests, working on yet, another report that's due. Then, just when we think we've got it.... we find ourselves going back to the drawing board of finding more non-therapy time, calling the various entities of, "The Village" to make sure everything is straight, and in place, and that none of the various objects juggled overhead are about to come crashing down.

We all know what hands on time is like. Now, I run the risk of sounding ungrateful here, but I am just being honest! The most frustrating part of my day is feeding Aviana. I try to be very calm, but at various times, you should see the thoughts bouncing around my head. They aren't pretty!  My patience level has come a long way, but when I am feeding her, it is the first to go. Shouldn't I be happy she is eating through her mouth? Yes, I am, but the frustration is alive, and well!!

My logical mind knows it's not her fault, and she is doing an amazing job, but it's just so much. To feed her three meals, two snacks, and her water, all day long is exhausting in itself, but then to add all of the therapy, etc. is insane!  It is so incredibly frustrating when she won't open her mouth for the bite, and the worst is when she blows her food all over your face, the couch, and everything else in its path, including Rainey. Everything gets caught in the cross fire. Nothing is off limits. All of this is not even a mention of what it is like to feed a 32 pound child with little head control.

When I am in this space, I think of the scene in Say Anything, if you are familiar, you will know what I am talking about. Often times, I reflect back on that in order to calm myself down.

"Maybe their mouths don't work as good as yours...." 

When I feed her, I am constantly thinking of all of the time I am losing on the rest of the program. It's a downward spiral from there, because my mind always goes to the happier breakfast, and lunchtime place of making something fairly quick, sliding it across the table, and going on my merry way to do other things, while she eats. Ahhhhh, the feeding frustration is endless!!!!

Even when I am not, hands on, my mind is rifling through at almost all times. Even when I am away, I am still here. Like I said, I have a long way to go, and I know it. The problem is getting there. I am finally on my way though, and that's a great start, frustrating, but great. It only took a a year, two months, and a few meltdowns to finally start down the right path.

The place I want to be is simple, and it looks like this:

I want to be able to look at Aviana, without seeing boat loads of work.

Geez, balancing is so much easier on a level playing field, or when you are ahead of the game. When you are miles behind, in every way, it can be ridiculous!

I have to admit, the closer we get to leaving to PA, the lazier I am getting!!!!

I hear her, gotta go feed the sweetie! I will forever be thankful that she sleeps in ;o)


  1. I remember when we were doing the program I felt like I didn't ENJOY my daughter but rather just got through the program each day like I was supposed to. I was so busy, so on task. No time for enjoyment. And I had a lot be to grateful for. She was walking again, and talking again. But still. I was impatient at times. And it was just work, work, work. I, too, saw her as "work". And I'm quite sure she saw me as the same, lol. Of course I loved her beyond words, and I wouldn't have chosen an "easier" therapy just to save me from frustration or work, but still. The feelings were there. I think it's a normal feeling.

    Aviana might see you as "work" but she also know that by all the work you do with her, you LOVE her. She feels the devotion you have to her and that equals love. I know this because Audriana is old enough now to tell me how the years on the program affected her. She understands all that we did with her and why, and she knows how much work it was, even at the time, and she tells us that although she hated the program (because let's face it, it can be hard and the same thing everyday can get boring, right?) but at the same time she loved spending so much time with me. Mommy is a child's favorite person, and to know she had 100% of my attention each day was a good thing. She knew that every single day it would be ME there with her all day. That's a secure feeling for a child. Audriana and I have a special bond to this day because I was the one who rehabilitated her all those years. It was me and my hands and my tears shed and my smiles she saw each day, going through her work with her each day. It was a special time, now that I look back at it. I sort of miss it. (sort of!) Her and I have many laughs about our memories of the program. To this day, whenever we hear a timer going off somewhere... beep, beep, beep! beep, beep, beep! .... we look at each other and say, "time for a mask!" Ahhh, good times. Good times. (good because they are behind us now, of course! at the time...didn't feel so good!)

  2. Dang I love your honesty.

    Here goes my "flow-conscious-writing" style so watch can be a gentle wave or tsnumani and I never know till my fingers start!

    You are not alone in this feeling. You should not feel guilty over these feelings.

    You are in 'trench-warfare' SoulSista ...

    Symbolically, your nails are dirty, your hair is a hot mess, your clothes are tattered, your life feels foreign, your brain is close to shut-down, your spirit feels drained, and -YOU- feel beat up.

    In WWII it was called "Shell Shocked". A true medical diagnosis when a soldier had spent so much time in the trenches that he would 'shut down' per se.

    Your shell-shock hits at feeding time...How could it cussin' NOT? There is no human who ENJOYS getting spit upon, fighting to feed someone who desperately needs the food but who doesn't understand that need like you do.

    You start out TIRED - and....your day certainly does not give you ANY room for recharging.

    So, what are some temporary band-aids for feeding time?

    1. Let someone else do it (not sure of Program rules though) at least occassionally.

    2. During feeding, PLAY a your BEST song collection on your Ipod/computer/Cd. These songs are ONLY played during feeding time. A 'reward' for you and your efforts.

    3. Pray before you start feeding her.

    4. Wear a trash bag (smile) and go in prepared with an anti-spit a mini-umbrella!

    I used, and still do at times, look at my most special needs child (Tye) and think..."Because of me and my laziness, he will never get to where he could if someone had him."


    A big fat, "WHY?".


    Some days when Tye is being lazy, mean, manipulative I find myself forcing the "like" factor to try and stay "on". It doesn't always.

    that is when Andrea removes herself and lets the world continue on without her for a bit.

    Jen - you are oh-so-right to dread feedings. It is work. hard work. messy. But, you have done it this long...and we all know u are going to keep doing it b/c that's just who you are.

    I'm going to PM you on FB with some more thoughts..cuz if I keep going on here people are going to start asking you "Who's the preachy chica on your blog that thinks she knows so much?" :)

    MUCH love...

  3. Don't you sometimes just want to throw the bowl in the sink and say "Just starve"? Oh wait....that was me. Not my proudest moment, for sure!

    I think we do our best most everyday and someday our best is better than other days. Truthfully, I don't think in the long run of life, it's going to matter if you missed a step here and there.

  4. I know from my own experience feeding time was always my most frustrating time of the day. It is beyond frustrating when they wont eat and throw their food, etc. I know that it is even more frustrating for you! Plus you have that GO, GO keep moving personality :) Hang in there! I like the idea of having others split the feedings with you.
    Don't feel bad and sad about seeing her as work and vise versa. Work=Love. She knows it and you know it. There is nothing you can do about it at this point. Someday you will get to the place that you want to be and it will be amazing.