Tuesday, November 16, 2010

Beaten, Battered & Bruised

I am physically, and emotionally deflated. I feel exhausted in every way possible. I have found myself in this current state for a multitude of reasons.

I have much to be thankful for, but for the past few days I seem to be focusing on all of the negative in our lives. Every time I strive to snap myself out of this funk, within seconds I am in tears, and back to square one.

I feel I am constantly running uphill. It is as though all of the exhaustion since the day of the accident has hit me like a ton of bricks. We have been working our fingers to the bone, and I finally feel like all I'm left with is bone on bone!

Today is Kama's 8th birthday, and instead of celebrating like we normally do, I brought my best friend home in a wooden box yesterday. I placed her lovingly in my nightstand, with her collar hanging on my side of the headboard. I want to keep her as close as humanly possible to me. I miss her so much. The pain is unrelenting.

I also picked her brother Zander up to watch him for two weeks while my brother is away. I was driving him to my house, and every time I looked in the rearview mirror, I saw Kama riding with me. I have been in tears.

I am also having a bear of a time adjusting to our new program. I am really not sure why. Well except for the nutrition part. There will be much more to come on this, as her new program has become my nemesis!!

I am also severely struggling with some very hurtful comments made to me by someone very close. These comments have sent me reeling. They have made me want to crawl inside myself, and shut everyone out. Even those who have done nothing but help me. I am so sad, on so many levels right now. Have you ever had the great pleasure of being kicked while you are as down, as down could be?? I have only been hit below the belt a handful of times in my life.  I can honestly say, it is an indescribable feeling.

I am also having a really tough time seeing Aviana in this state lately.  I am saddened that this little girl has to work as hard as she does. All responsibility falls to Dave and I, but we are 2. Aviana is one, and while one of us may have a break, she never does.

I am so sad that she has to work from sun up to sun down 7 days a week.

I am also desperately sad for Dave and I. We don't have anything that even remotely resembles a normal life. We work, work, work, work, work, and work more. I learned early on in counseling to not travel down the future path of our journey. I learned the hard way, as I kept doing it, and I would spin out of control, like one of those tops!

Lately, a few people have brought up the future, and I couldn't help but think about it. The thought is, quite honestly, devastating to me. I cry just thinking about it. Sometimes, Dave and I look at each other and say, "Can you believe this is what has come of us??" "Can you believe this is our lives from here on out??" It is mind boggling, and depressing.

I am in the worst slump. I have wonderful people who offer to help pattern, great nurses, etc. but all I want to do is shut my door and just 'be.'  I am so tired of everything.

I am sick of the program, I am tired of having food coughed in my face, and all over. I am sick of not being able to go anywhere. I am disgusted that we cannot take a vacation. I am horrified by the amount of cooking we have to do, and that I can't simply just make a peanut butter and jelly sandwich, and get on the road to our nieces softball game. I am sick that Dave and I don't get to spend time by ourselves, but instead one must stay back to be with Avi, and finish up her therapy, while the other goes out.  I am tired of spending every waking moment thinking about keeping Aviana's recovery headed in the right direction. I am tired of preparing materials. Shopping for the endless amount of food. I am sick of spreadsheet among spreadsheet among spreadsheet. I am sad that Aviana can't reach her hand out, and pet our new puppy. I am beside myself that she can't express her grief, and sadness over Kama in a precise manner, and has me guessing and not exactly knowing. I am sick of spending our nights after she goes to bed ordering more hepa filters, more patterning tables, researching and buying water filter, upon water filter for the house. I am tired of supplements. Which comes when? Is it Milk Thistle, or the Probiotic? When is it that I need to take her back for blood work?? Patterning teams make me nauseous. My sacred home as a revolving door, a mess.

Yeah, I get a break, let me go get my head shrunk.

Sacrifice, sacrifice, sacrifice is all we do. Don't get me wrong, I know she's worth it, as this was not her fault. And she is what keeps us going day in and day out, but eighteen months of this is enough to flatten just about anyone.

Crawling under that rock, has never sounded so appealing.


  1. (((Big Hug))))..I am so glad that you have a place to come and spill it all out! I don't have any great words of wisdom for you. I wish I did. I really do. Just know that your blog friends are here to 'listen'. I will pray for the strength that you need to get you through this super tough time!

  2. Oh Jen...I'm so sorry. I've been to that place. It is NOT a fun place to be. I've been bawling off and on after seeing the neurologist again. (Nothing he did...but I'll tell you about that later.) The future can be so scary when you're feeling like you just want to hide under a rock.

    I totally understand how someone close to you being insensitive is, too. It's like a hit below the belt. You just want them to understand and be comforting...but they never can *really* understand. I still get hurt by comments, but I try to sweep them under a rug and move on. Easier said than done, I know. Sometimes I wish I had a remote control to mute them.

    Please take care of yourself. Make sure you're eating well. If you can't eat much, try a good vitamin. (I like Alive!) Get some exercise, even if it's squats while you're doing your hair. I know this SUCKS, but you'll get through it. The future comes one day at a time, and all we can do is focus on now.

    My family and I are here if you need ANYTHING. *hugs*

  3. I wish I could help you!!

    To that person whoever it was who said hurtful things -- they don't know what it's like to be you. People can look in at your life and say what they would do or how they would feel blah blah blah...but no one really knows the emotions of it all UNLESS they have BEEN THERE BEFORE themselves! I always hated when people would tell me how I should be handling our situation when Audriana was brain injured. I was told "advice" by people who really could never, ever understand how I was feeling because THEY had healthy children! So how could they know? How could they possibly know the heartache I felt when I thought ahead to her future? How could they know what it felt like to look in that sweet face of hers and feel such a deep sadness. How could they know what it was like to answer to a timer every 5 minutes of the day, doing a program on my brain injured daughter, when I'd rather be a "normal" family taking trips to the park, going to Disneyland for the day, or simply just flopping in our big family bed watching movie after movie on a rainy day? Can't do that stuff when you are on the program. Marriage is harder. Family life is harder. Being a mother is harder. Being happy is harder. Finding joy in the day is harder. Being grateful is harder. Being content is nearly impossible.

    Oh Jen...I do hear you on all that you wrote in this post. I truly do understand. Yet still, for me it is not he same. No two brain injuries are alike, and Audriana's brain injury was different than Avi's. But yet, I can relate to so many of your emotions.

    Like I said, I really wish I could help you. But I can't. Simply put, right now is the time for Aviana to be on the program. Right now you are doing the best thing for her and for your family. Trust me when I say this. In another year, or two, or three... you may feel differently. Only you and Dave will know when it's time to stop the program. That decision was a hard one for us to make, but I will say that I have no regrets by making it after being on the program for 3 years. It felt great to finally resume a more "normal" life. That day will come for you as well. You'll see.

    Thinking of you


  4. Sorry that you are feeling so down. You have every right to feel exactly the way that you are feeling. I would be right there with you, no doubt. This wave that is beating you against the rocks will calm, as waves always do, and you will begin to feel relief and find peace when it does. Many hugs to you Jen!

  5. ((((HUGS)))) you ARE succeeding in small steps but succeeding nonetheless

    the road is long and bumpy with many twists & turns but together you are navigating uncharted waters with nothing more than a compass to lead you on

    vent away expel the bad feelings & thoughts here so that you can face each day just a little stronger

    i'm with you .....we all are ....cyber-wise. every step


  6. Oh Jen I'm so sorry someone said unkind hurtful things. I am so very sad that you are on the downward plunge on this unending roller coaster ride you've been thrust into. All us readers are here with you. We may not have the right words. None of us have an answer but we love you and Avi and Dave and Kama and Rainey too. She is super cute by the way. And Avi made a perfect vampiress! She had the look down to a tee. Hope to meet the newest member of you family soon.

  7. I'm very sad for you and rather angry at The Institute. Anyone who works with children who have special needs and their families should know that families are in this for the long haul. They don't get to walk away at night or take a break on the weekend. I believe that programs should also be written for families, programs that give them a break, a day off, a weekend away, a chance to just be. I hope you give that to yourselves.


  8. I am so very sad to read this post. I'd like to say a few words to the person who hurt you. You are going through so much right now. You only need support and encouragement. I hope you are feeling that from most of the people in your life. Please reach out to those around you and ask for help. I don't remember if you are taking any type of anti-depressant, but about 8 months after Blake died, I became very depressed. I was against drugs, but for me it allowed me to function again. I know the Institute takes a ton of your time, but I would encourage you to get out each day for at least a walk. We made ways to take Blake with us everywhere we went. We took him biking by using a Burly trailer with a car seat in it. We took Blake x-country skiing in a backpack while having Blake wear a life jacket that held his head up! I'm just hoping you can see there are ways to get out and do things with Avi. I know your whole day is filled with therapy, but you ALL need to be healthy. Please take care of yourself while caring for Avi. Please know I am not saying this out of judgment, but support and encouragement for you.

  9. Jen, I have followed your page, and have both laughed and cried for you and your family. My sister came to live with me last month. Although it is not the same, her husband had a devastating stroke a year ago after surgery and has been strugling ever since to gain his ability to communicate, walk and try to have some sort of normal. She had done his caregiving alone for over a year...lifting, moving, using a feeding tube....for about 6 months...and she was about to go over the edge. Your blog has given me insight on how to help her and her husband....there are improvements...here and there... and then there are days when it is nothing but many steps backwards. Your frustration and anger is normal. I am glad that you have this blog to release these feelings when you can. You and your family are in my thoughts and prayers.... and again, thank you for your blog. You are teaching others without even knowing it.

  10. Awww sweetie, this breaks my heart! :-(


  11. It is always good to vent when you need to...and it is so nice to see all the encouragement and understanding that is being sent your way. Keep breathing, vent when you need to...and know that your sweet family is in the prayers of so many.

  12. You are an inspiration to so many! I don't know how you do it all... sooo understandable that you'd feel like this, more often than not! Please know that even us that don't know you, but follow your stories and think of/pray for your family daily, are behind you. Hugs and prayers, especially at these times!!

  13. Friend....

    Your honesty is helping others in your situation.

    Helping others feel less isolated. More "normal" that they are OVER IT.

    Not apples to apples here, but I have had moments when I was trying to bond with Tye (chinese son) with NO sucess AT ALL ... that I wanted to run for the hills.

    Effort, of any kind, over a matter of time breaks you down.

    If you were a car...you'd be due for an oil changed, tire rotations, new shocks, new fluids, detailed in and out ... comin' out smellin' like roses.

    But, alas, we are not cars. (durrnit) and we have to push.

    Your ARE pushing. You are pushing through barriers that others told you not to even consider.

    Whatta they think about cha now?! eh?

    Sista...Not sure where you stand on the whole God-thang...but some peaceful "God" music or some classical music could soothe your soul during the day.

    Hitting a punching bag and pretending it was that "friend" that hit below the belt might help too.

    I have been hit below the belt...in a horrible, horrible, horrible way....by someone who is supposed to protect, nuture, and guide me..

    It was not "abuse" but it was words that stung when they were said three years ago and they still sting to this day. I will never forget the hurt and I PRAY I never do that to anyone else unintentionally...though my -mother- did this to me inetionally. nice, eh?

    Punch, kick, blog, cry, escape, lock the door, take a day off, hug Rainey, and know that YOU are an AMAZING woman who is being tested with FIRE right now....

    Win Jen. WIN.