Tuesday, June 22, 2010

Brain Injury Rocks!

For the life of me, I can't seem to think of anything I would rather do with my life!

I love spending all day, every day, 7 days a week, 365 days a year doing therapy.

I love the feeling of Aviana crying her eyes out as we do the things we HAVE to do for her.

The thing I love most of all, is when she is screaming her head off and we must keep going.  Sure has a way of making you feel like the BEST parent in the world.

I love being able to thoroughly enjoy the summer. Avi and I being held hostage in our home....it doesn't get any better than that.

To watch your family slowly fall to pieces or stumble their way through each day, I don't know about you, but I call that The American Dream!

I am looking so forward to fall, winter, the holidays, spring and summer again and again. It's nice to know exactly what you will be doing for what seems like eternity.

I bet all of you love to see your husband work his A*S off and then come home and continue to pretty much work until he goes to sleep.

Watching a 3 year old come off of hard-core narcotics is nothing short of exhilarating. Watching her become terrified and tense due to the smallest or biggest of sounds makes my heart sing! To be able to experience it about 10 times a day is epic!

Doctors' appointments, dealing with the pharmacy and trips to the shrink. Family outings, who could ask for anything more! Not me!

It's so liberating to not be able to go anywhere on the weekends.

It's awesome, if you even let the thought of going to someone else's house cross your mind, you get to shuffle through the endless catalog of items to bring with you. It's so worth the effort, because your not really exhausted enough, right?

I love having my house turned up-side-down and inside out. It has the most amazing calming affect. I never knew how good it could feel to live in disarray.

Have I told you lately how great it feels to not go to the movies, not go to the zoo, not go swimming, not plan a vacation, not run out for ice cream, and all of the various other things I sure don't miss.

Nothing puts a smile on your face like dragging your hurt child through the gauntlet of the day's activities.

There is nothing quite like not being able to go up and spend the day with my dad.

Balancing the truly fine line of having help and maintaining some normalcy in your home, it's got to be everyone's favorite thing to do!

Friends' falling by the wayside...yet another perk of this wonderful life we lead.

Did I mention, listening to your little girl scream bloody murder as she lays on her stomach, now that's my kind of day.

My favorite thing, one that I have always been great at....is putting people out! Constantly having to ask for help, it is my specialty. Being a taker and rarely a giver, that is what my life has always been about!

I forgot to tell you guys, we are to cook everyday, yes you heard me, everyday. Our highly efficient Sunday cook off has sadly come to an end.  I can't explain how good it feels to tear up the kitchen just about EVERY night AND get to clean it all up!  Wish us luck on ever cooking for ourselves again. That takes supersonic amounts of energy. I rarely have it.

I even got to cut our nurse down to fewer days, not because I still don't love her, but because I needed more time with Aviana. You know what that means though....yeah, more therapy for me! More scheduling of the revolving door, once known as my front door! Oh, what the hell, doesn't everyone have one? Privacy Shmivacy!

I can't help but feel lucky to not be able to go to a party, sit and watch my kid in the pool and drink a shot of tequila.

Ohhhh, I sure can't wait to go on vacation again. I am thinking.... Jamaica...no Alaska....no Cabo..... actually how about Philadelphia! That sounds awesome, and instead of sight seeing, I think I want to spend 10-12 hour days at The Institute....for a week!

I can't help but feel like a million bucks as my attention is always divided. There's a certain, I don't know what, to not being able to give your family and friends your time and undivided attention.

You know, I can't sleep at night.  I am just too amped on waking up and doing it all again!

Don't be jealous....I know what you're thinking....

I sure wish I were her, that girls got it made!


  1. Forgive me for being a bit bitchy here but thank you for showing that I'm not the only one who has shitty days sometimes! I know I should probably not post this comment but dammit, you are one of the few people who "get it", even though our circumstances are different.

    I love you dearly Jen.

  2. Oh Jen, I am so sorry. And so speechless. Utterly speechless. Sending love, hugs and prayers to you, as you continue to try to scale the mountain.


  3. Jen,
    I have not written here ever, but am coming out of lurkdom today. My gosh girl...I just wish I could give you a hug. And a break. Good lord how on earth do you do it. :(

    Keep swimming girl. You truly ARE my hero.

    And praying that all this work reaps a harvest of reward someday.

  4. I'm so sorry Jen. It sounds like such a lot of work, without an end in sight. I hope it helps a tiny bit to know that you have many supporters out here in blogland pulling for you.

  5. Jen, please let Michelle come more often, ask and receive more help, get a second nurse, take only 1 day at a time, take at least 1 day a month just for you and Dave, it's okay, going the way you are now you will just burn out and get sick, I don't care what the Institute says, if the caretakers get sick, Aviana will be no better off. Take care of you and Dave please... Fran

  6. It inspires me to see you honoring all of your emotions and letting it out, girl. We are all rooting for you and support you in the good, bad, and ugly. Sending love through the ethers.

  7. You write from your heart, and I hope that it helps you. I hope it helps to know that people are "listening" and praying for you. I won't pretend I know what it's like, and yep, now I feel guilty for just needing 10 minutes of blogging time as a breather from 3 healthy kids, one of which who has just decided to be an absolute brat. No nurses, (therapy yes), no Institute. . .You say your "Sunday cooks" are off. We're local and would love to bring you a meal or two or three. . .please e-mail me if you're open to it. I'm also off on Wednesdays and would be happy to pick up groceries, or help you run errands. I wish I could offer more to you. Don't be afraid to "take" - I'm happy to "give" - I'd be blessed to "give" if you'd allow. . .

  8. Keep going, get it all out!

  9. Oh Jen, I feel your pain and exhaustion. Is it possible, if only for one day a month to just take a day off. I know it's not in the Institutes plan but I think it's in your plan for you...and if you could even plan just one vacation with your husband for a long weekend or something once every six months or so just to give you a "carrot" for all this hard work. I know the real "carrot" is Avi getting better and she will...even if you take this time....Oh I don't know if this is the right or wrong thing to say but I'm reading and listening and offering a virtual shoulder to cry on. HUGS.

  10. Well I'm glad shrink was thrown in there, because I do not now how you hold it all together everyday, I suppose because there is no other choice. YOu are a really wonderful writer and hopefully that helps you because not having a life other then what you HAVE to do everyday does not give you any release.
    Even though I am one that cannot leave my daughter so I understand you need your time with Avi, if you could have a great nurse so that maybe you could have a bit more of a life I think you would have more of yourself to give back to Avi, beign stuck in the house all day everyday the same thing with no end in sight isn't good for anyone. Is it possible to move some of her therapy outside? I know you can't lug out all her stuff but at least you maybe could do some of it outside,I understand its important she doens't miss any therapy but it might benenfit her and her mindset to have a change of scenery too, she probably dreads the some thing everyday. Also what about some movement therapy in a pool? do you have a therapuetic riding center around (called hippotherapy)? I used to volunteer at one and actually had considered opening one myself someday, but the horses movement mimicks they way we move when we walk and kids seem to have the special connection with animals (as you know with Kama)
    I am not trying to throw more therapy at you just wondering if you could throw in a few different outside the house things that would mke it seem like you had more of a life with your daughter and that you were doing more together ( I know not as easy as just throwing her in the car) but still it might be nice for both of you.

  11. Jen I haven't commented in awhile and haven't seen you in like forever. Just wanted you to know I'm still here. You are one of the most amazing women I know. You have showed courage and strength to no end. I am sorry you have hit a rough patch. I wish there was something more I could do for you. I guess that mostly the Delaps will not fall to the wayside. You are stuck with us as friends. Aren't you just so lucky :0) Love ya, Sarah

  12. Jen, all I can say is that I love, love, love you and like Sarah said, you are stuck with the Zuveys as friends - we aren't going anywhere.
    I think it has to be good that you are able to vent, hopefully it helps to release a little pressure and it the act, know that you, Avi, Dave and Kama are still loved, always loved, no matter what, without a doubt, you are safe here. Other than that, I don't know what to say, I don't know what to do and it sucks!!

  13. Jen,
    I won't say I know exactly how you are feeling, because even though our situations are similar, each brain injury is unique and Audriana's recovery is different from Aviana's. But I will say this: the years we were on the program -- I was a complete hermit. We were in our home all day while life continued on without us on the outside. It would hurt my heart when I was yelling for my kid to do yet another crawling lap around the living room on a nice, hot summer day...when just outside our window I could see the neighborhood kids running through spriklers. Kids her age, doing what they should be doing at their age. Having FUN. But me and my daughter? I was just inside, working on getting her to walk again, to talk again. It sure wasn't fair, and it was no kind of life for her, or for me. And I hated it...HATED IT. But now, years later, I can say this: I would not go back and change what we did. All those days inside, all the time sacrifice where we basically put our lives "on hold"... well, it was worth it. I know it was worth it, because today she enjoys a much better quality of life, becaue of what we did back then. Because of the sacrifice we did then, she is now able to talk. She can now walk. Maybe she can't do these things perfectly, but you know what? There was a time that she coudln't do those things at all. So...yes...it's not a fun way of life. It sucks, to be honest. But I can only imagine what Audriana's quality of life would be like now if we had NOT chosen the hardest route of therapy -- the Institute's program. It's the hardest thing that I've ever had to do. There was much sacrifice. My days were spent indoors. My friends did playdates with their kids, fun things like that...but I had volunteers in and our of my home everyday to pattern my daughter. I wasn't happy about that, but it had to be done. It was worth it.

    Jen, it's very hard. You need to remember to get a break from it now and then. Remember, too, that you won't be doing this the rest of your life. There will come a time when you will know it's time to stop. Avi has more improvements coming. She's going to improve, in time and with all this hard program work she's doing. One day, you will be like me and will be able to look back on these program days and you won't hate them. They will be a good memeory because you will know that your daughter's quality of life is that much better because of all you did for her back then.

    Hang in there, my friend. We all admire you so much! You're doing an amazing job. You are a terrific mother :)

  14. What you have going for you is a way of connecting to strangers and sharing an unbelievable life-event in a way that is compelling. You should set up a camara and start filming a documentary. A day in your life and share with HBO.

  15. Like everyone else, my heart hurts for you Jen. Thank you for sharing your thoughts, frustrations and emotions with us. Just know we are thinking about you, praying for you and rooting you on girl!

  16. Umm, I hope it's not wrong to say this, but as sad as your post made me feel for you, that was AMAZING writing! Truly, your talent is there, even if you feel you are sinking into a life stuck at home doing everything you don't want to do. I am so very sorry for all the things that you wish were not part of your life, and I wish I could do something to make you feel happier. Shall I have someone make shirts that read, "Brain Injury Rocks!"? Cause I will...really, I will! And I will wear it and come over to bring you tequila! Love You!

  17. i'm here....

    i'm jealous (?) of the life you lead....NOT. but i am AMAZED.. INSPIRED.. AWED.. by all that you do day in and day out .

    i'm rooting for the home team! you are my heros

  18. "you never know how strong you are until strong is your only option"

    Hello my dear, I couldn't have written that post better myself and I understand everything youare going through. I always say that everyone's own problems are relative to them. However, I wish my daughter could make it down the ramp, could cry and be soothed, could swallow, move with purpose etc. All your hard work is paying off. But you are still allowed to complain about it. ((hugs))

  19. I used to help with the "patterning" of a young boy in our town and it broke my heart to hear his cries as we did what was "good for him." I can't even imagine it being my own child.
    I think about you and Avi often and pray for you when I do. That's all I can do or say.

  20. Sweetheart, you're not the best mom because of the Institute. You are the best mom because of EVERYTHING that you've done for her. You gave her a forever family. You fought to bond with her. You helped her blossom. When all hell broke loose, you were there for her, loving her.


  21. There is so much I want to say to you, but I fear it would be blasphemous. I hate that people have apparently made you feel that if you skip a day or a few days that Aviana will suffer or not progress. I don't believe that and I know there are studies that support my belief. Please, please give yourself the right to live your life with joy and fun and choices.

    If I knew you, I'd come sit on your couch anyway and I'd bring you ice cream (or Starbucks)....whatever makes the day better!


  22. Honesty is something hard to come by these days, scary to stick with, and can bring one to their knees.

    You, Momma-in-Shining-Armor, did a FINE job of finding honesty, sticking to it, and letting others know that your knees are scabbed and bleeding.

    There's alot of scabbed and bleeding knees out there that need more honesty so they don't feel so alone.

    Bad days (weeks? months? years?) suck. HOWEVER, I double-ear-dog dare ya to read your post, oh say, 6 months ago from today and see what your treasure was doing and LOOK WHAT YOU HAVE DONE!


    -all current movies stink. I've seen 'em.
    -my friends drop by the wayside too and I have no excuse! And it hacks me OFF!
    -parties are fun but they end. And usually the anticipation is the most fun which is stupid.
    -tequila makes ya fat.
    -nobody is taking a vacation in this economy.
    -having a consistently dirty house means you don't have to clean.
    -our westernized society is weird with privacy. If you lived most anywhere else, your front door would be revolving there too.
    -stained couches are a sign of good parenting :)
    -your OCD should thrive with having your entire next several years totally planned out, no?! (eyeroll)


  23. Jen,
    Are you close to Utah? Can I be your friend. You could use me, abuse me and we could still have fun. I could bring Sophia over an force her to do the same things Aviana doesn't enjoy just so she doesn't feel alone. :) And then, just maybe, for a moment, you could share the effect that would give me and how someone finally gets just a few seconds of your world. All I can say is, you beat me by a mile. And, if I was close enough, maybe I could cook a few dinners for you all so you could continue to rip you kitchen apart for Aviana. Really. I am not a good cook. But, like I said, if you are close to Utah...I could figure something out. Anything to lighten your load and let you know someone is there for you and your husband. (HUGS)

  24. Jen,
    You are such an inspiration to so many. I am not jealous of your life, but of the woman you are. I will continue to pray for you guys. Sorry I've been MIA...We were away in MI for 3 weeks and didn't do any of the program while we were there. I'm not looking forward to getting it started again...but I know I need to.
    Love you girl!!!