Balloon Release - Clearwater, Florida

Today was another hard day - BUT, I MADE IT THROUGH!!!  I never thought that would happen.  I am not sure if it is a good thing or bad thing.  But, I made it.

I look at the pic from the balloon release and find more reasons to be proud of Tash - she was able to touch so many lives.  There were balloon releases in at least five states today - people honoring the memory of my great girl.  I think Tash would be surprised at the number of people who continue to support her and honor her.  I think that if she knew how many people truly loved her and cared about her, she would have fought harder to be here.

There is not much to say tonight - not much more emotion left - I guess I wanted to write a little because I know all the grieved parents worry so much about the birthdays and the holidays - I did, too - I never thought I would make it through today - but, I wanted other parents to see that I did and that if I can, so can they...

Goodnight...one more happy birthday to Tash - I love you and miss you...as does your grown-up puppy, Prince!

It's finally here - the day I have dreaded for the last 206 days - Tash's 28th birthday - her first in heaven - our first without her.  I am not really sure how I should feel - what I should do.  This was the day I promised to meet her - but, I am still here.  Is that the right decision?  The best decision?  I don't know - and I don't know what that decision will bring.  More guilt?  Perhaps.

I worry about Tash understanding.  Is she okay with me staying here a little longer?  We talked about that in counseling a lot today.  Am I worried that she needs me?  Or, could it be for the first time, she doesn't need me?  Has it become more about me than about her?  Of course, like most of my other questions, there are no answers to these questions either. 

I wish that I could say that I have come to the conclusion that I have decided to live.  But, that's not true - I have decided to live for now  I have decided that I have things to finish and a husband to take care of - for at least a little while longer. 

A sign - that is what I want - what I wish for - just something to know that I am making the right decision.  And, I will wait for it a little bit longer....

But, for now, this is the day of her birth - NATASHA COURTNEY KNOBEL was born on July 31, 1984 - it was a Tuesday - ironic that the first birthday that she is not here to celebrate is also on a Tuesday - which means, that 5 Tuesday's from now, we will be "celebrating" my birthday - another first - another milestone without Tash - it will be the first birthday in I don't know how many years that I won't receive a phone call and hear her singing "Happy Birthday" to me. 

This is just from one year ago - Tash's 27th birthday.  We went parasailing and stayed out at the beach.  It was the first time we had taken her dialysis machine on a "trip."  It was sort of a trial run.  It is funny that we were staying at the beach - Tash had never been much of a fan of the beach.  But, it was her choice - and, she chose the beach.  True to form, when the water splashed her in the face and the waves overpowered her little body, out came the chin and the lip moved into the pout position.  We laughed so hard at her - which made her laugh as well.  We were so "busy" relaxing that we didn't take many pictures that long weekend.  I am really sad about that.

Back in the room, Tash worked studiously to hook up her dialysis machine - setting everything up just so - she soo desperately wanted to impress her dad with what she had learned during her training - how competent she was - and, wouldn't you know?  Something went wrong.  We tried to be quiet about it - we didn't want "him" to know something was going wrong.  But, finally, we had to admit it - something was wrong and we didn't know how to fix it.  So, admitting defeat, we asked dad to help us out.  He did a "little" grumbling as he set about to help us - and, OF COURSE, he found what we had missed - one clamp on one hose had kept the machine from running.  UGH!  How we both hated that!

But, we were off!  It was fantastic!  Not only could Tasha dialyze at home, now, we could take it on the road.  We talked about cruises - returning to Holland - what we would do for the next birthday - the one we would never get to celebrate.  That makes me so sad.  But, when I think about last year's birthday, I remember so many good things - we had such a good time. 

Because the weekend at the beach was the weekend after her actual birthday, we had a birthday dinner at Joe's crab Shack.  If you have an iPhone, you know about four-square.  Well, Tash decided to complete every question to earn every point - to earn every free thing she could possibly get.  She was driving her dad crazy, borrowing his phone to complete another task.  We took pictures, she hugged the waitress, she rode a stick pony through the restaurant, she did the scavenger hunt - but, it was funny - and, we have some great pictures and some even greater memories that will last forever. 

NOW, we work on her foundation as we face this birthday of hers alone.  There are no more family celebrations, holidays - there never will be a wedding, grandchildren, and there will be no more special shared moments.  We are alone, trying to find meaning - trying to answer the WHY'S - trying to make our way with a family that has lost its center, its soul.  We work to do what would make her proud - to build a foundation that does things that Tash would like - to build something she would be proud of - to celebrate her life - and all she meant to so many people.  For if we do not do something that honors and celebrates her life, then how we can justify all her suffering and pain???  There must be a reason to go on - to get up - to live again - I am not sure what it is yet - but, I am hopeful that one day - one morning - I will wake up in the morning and think: "There is a reason to get up today..."


If you are interested in seeing how we are working to put together a foundation in her honor or would like to be a part of it, please visit her foundation's Facebook page:
 www.facebook.com/TashasGiftInc

Her birthday... In just five days, it will be Tash's birthday - her first birthday that she'll miss. I cannot seem to get my mind off of it - it is consuming my every waking moment. How will I cope? What will I do? What should I do? I am not sure there is a right answer to this question. You see, I had a plan. I thought it was the right one - but, now, I am not so sure. I promised Tash I would meet her on her birthday. I have spent the last six months getting ready to keep that promise. I have talked about it with my counselor for hours - I have talked about it with husband for hours, trying to make him understand that it doesn't mean that I love him any less - it's just that I think Tash needs me more. And, I cannot even begin to count the hours that I have put in with organizing her stuff, setting up the foundation, trying to clean up and organize my own things. I do not want to leave Hans a mess to deal with. But, no matter how hard I have worked, I have not finished everything I need to do. My counselor reminds me that I promised to meet her on her birthday, BUT, I didn't say it would be THIS birthday. But, I feel like Tash knew I meant this birthday - how can I break this last promise to her? There are so many opinions on this - but, no facts. Some say that Tash would be happy in heaven - would harbor none of the negative earthly feelings. I am still not so sure I can believe that. Others say that she doesn't need me now - that God has her in his hands - her body is restored - and, that though, time seems to crawl by for me, it is but a blink of an eye for her until we are together again. Still, I'm not so sure. There are those of the opinion that if I take my own life, I will go to hell and will not be with Tash. I do hate the people that would tell me that Tash would want me to move forward and live a happy life. I just call BULLSHIT on that. That is not the Tash I know. I guess I just don't know what to do any more. I think I am ready to make a decision - I think I am okay staying here a little longer - finish the job of being Tash's mom - getting all her stuff done and organized. But, what if I am wrong? There is already so much guilt. How can I risk breaking this last promise to her? I just don't know. I read every book I can - I try to reason through it - but, what it all comes down to is that I just don't know what to do. And, there is no one left to ask. I have five days to make a decision - 5 days to determine what the right thing to do is. I wish I could have a poll - what would the world think if I employed survey monkey for this and sent a copy to everyone I know? I miss Tash so much - I just don't know how long I can live here without her and I don't know how long I want to -

Yesterday, I wrote to Tash - extolling the limitless list of "why's." Today, I am reading the book 90 Minutes in Heaven, and begin the chapter: "The Why Questions." This man died for ninety minutes, went to heaven and recounts his story - painting a glorious picture of heaven - and, now, he puts his story on paper to share with the rest of us. I get so mad at all the unanswered questions that swirl through my days and wreak havoc on my nights. But, here is this man of God, so secure in his faith and about his experience, and he still has questions. It's a sobering thought - I often feel that if my faith was stronger, I would have fewer questions - but, maybe that is not true. This man, Rev. Piper, talks about heaven in such a way that it almost makes me believe that Tash would be happier there, and would give no thoughts to my time here on earth without her. BUT, I AM STILL NOT SURE. If I died first, I would want her to stay here and be happy - continue her life and live to the fullest. That is the natural order of things. I am not sure it works the other way. Tash always wanted to be with me - hated me to be happy when she wasn't with me - was jealous of the time I spent with others. Sooooo, would she really want me to be happy without her? I just don't think so - I think she would want me to be with her. And, I am torn - I want be here with Hans - but, I want to be with Tash. I want to see her - hear her voice - hold her - see her restored. I still feel like she needs me. Am I wrong? Is it only my need that I am acknowledging? Is it selfish to want her back - even as she was - with pain - the dialysis - the waiting - the surgeries? I can't help it - I just don't think it should be this way - there has to be a reason for all her suffering - it surely couldn't have all been for nothing. What could be the purpose in that? I just feel like I know that she wouldn't have wanted to leave me - that she would want me with her. How does one move past that to live a life here? My life will never be normal - there is no chance that I will ever be happy again. All my life, all I have ever wanted was family and happiness and now both have been stripped from me in a single moment. So, what do I do? Stay and continue to live for the convenience of others? Go and rest with my baby, while relishing her new, healthy, restored body? Oh, Tash - this is an impossible decision - I don't know how to live without you - and, more importantly, I don't want to. I can't! My heart is broken into a million little pieces and I just don't know how to live this way. How can I do this? Why would I want to? I dreamed of a family my whole life - to make up for the lack of family I had growing up - I was only lucky enough to have one child - my Tash - it wasn't my dream of a big family - but, it was my perfect family. Now, that is gone, too. I have no parents - I have no children - I have become less than a nobody - with no purpose. I have done nothing to leave a legacy in this world - I have no reasons to get up in the morning - I have no reason to save things - no one to give them to - no one to care about the things I have collected, the pictures I have taken - I just live in a house full of treasures for an anonymous estate sale one day. I have lived for naught - the why's don't matter - only my broken heart matters - the soul that bleeds for my lost child - I'm just nobody now. I'm Nobody! Who are you? by Emily Dickinson I'm Nobody! Who are you? Are you – Nobody – too? This is the new story of my life. I fought so hard for our lives - for her life - now there is nothing to fight for....

Dear Tash, As always, I am really missing you tonight. After six months without you, I still have the same questions I had the night you left me. Most of them start with the same word: "Why?" - Why did you leave me? - Why did you have to go through everything you went through? - Why wasn't I a better mother? - Why didn't I call you that day? - Why didn't I know the truth about all you were going through? - Why did you go to the hospital January 1? - Why didn't you fight harder? I miss you so much - I just cannot believe how much time has passed since you died. I cannot believe that I continue to wake up - to breathe - without you here. A parent should never outlive her child. I, especially, should not be here without you. You were my best friend - my everything. It is only through your birth that my life began to have meaning. I cannot even begin to list the things I miss about you. I wanted to write you a letter, telling you all that I missed about you, but, no matter how much I tried, I just couldn't get the list together. Mostly, I miss just knowing you are here. I know it would shock you, but, I really miss your phone calls. As much as I hate talking on the phone, I regret every minute I rushed you off the phone and every call I missed. I should have listened better - taken it all in - and enjoyed that time together. Even when you called me eight times a day, I should have been happier to hear the ring of the phone. The silence of that ringer now breaks my heart - I would give anything for one more call. Although, we both know, it was only a couple of weeks ago when I received such a call - but, I'm not ready to share that with the world just yet. I miss the sound of your voice - talking - giggling - even crying. I find myself listening for it - still expecting to hear it. I call your phone and wait for your voice mail. When it finally picks up, my heart skips a beat when I hear your voice - it's almost like having a little piece of you back - but, then my heart realizes it is not to be. It is just the recording of your sweet voice - making a promise to call me back - a promise you will never be able to keep. I miss your face - every pore - every freckle - even your little chicken pox scar. Those beautiful brown eyes with the little green specks - so expressive - no matter what you were feeling, you could never hide it - even if you tried - not if I could see your eyes. You know those cheeks you hated? I miss them - oh my gosh, how I miss them! Your little nose - so much like mine - it was perfect - no one else can carry that little perky nose - the one that matched your personality. And, that mouth - all that mouth on that little body. What I wouldn't give for the opportunity to run my finger across those lips once more - one more kiss - just one more...but, we all know it's not to be. Even through two bouts of braces, you still had that little space between your teeth. But, what a smile you had - it lit up your whole face - and my world. Oh, Tash, there are so many things I miss - this short list doesn't even begin to start the list. I miss so many things - I always wonder if you really knew how loved you were - how loved you are. I know I was hard on you last year, pushing you toward that independence you needed - but, I didn't want to push you away. I wanted you to be strong - as you were closer to graduating, gaining a stronger hold on independence. I was so proud of you - watching you get stronger - watching you get your shit together. You were almost there - and, now you are gone - and I just feel like instead of pushing you toward Independence, I should have been holding you close - relishing in every minute we had together. I never thought that, in the end, you would lay down, close your eyes, and leave me. I thought this was our year - a year to celebrate - your independence - your graduation - a new job - possibly, a new kidney. Instead, I'm left here alone, asking all the questions that I have no answers for. Tash, I love you - I'm trying to learn to do this without you - I would say I am failing miserably - I think you might have taken everything good with you when you left. I miss you - and, I'm still not sure what you would want me to do - 8 more days - I need some answers. MOM

28 weeks.... I cannot believe it has been 28 weeks since I have seen you - held you - heard your voice. It never gets easier. I still look for you every where - hoping for answers that never come. A weird thing happened yesterday... One thing I am scared of is a loose dog. Yesterday, while I was running, I saw a big, white, fluffy dog running toward me. I crossed the street and looked to see where the dog was - IT WAS GONE! It was as if it had never been there - it couldn't have just disappeared. At the time, I wondered if I was having some kind of heat stroke. But, as I rounded the corner, where I would have been running if I hadn't crossed the street to get away from the "white dog," stood two big dogs who were not too happy to see me. But, their owner was able to call them back. Had I not crossed the street, I would have run right into them and their owner wouldn't have been able to call them back. So, what was the white dog? A warning? A premonition? Tash? I sometimes think I am crazy and making up things to make it seem like it's Tash and not just coincidence. I just don't know. There seem to be so many "coincidences," that they seem more like "on purposes." I want to think it was Tash warning me - protecting me. How do I know what's real? What's not real? I wish I knew what to believe. I sometimes feel as if Tash is so close and other times, I feel lost without her and like I will never have contact again. Tash's birthday is in eight days and I am still not sure what to do - what she would want me to do. There are always so many more questions than answers. If your only child died, what would you want to do? That's what I want to ask everyone. I feel so lost - so without purpose - I don't know what I am supposed to do - how I am supposed to live. I feel like I walk around in a daze - putting on an act of being okay whenever anyone is around - giving them what they want/need. But, what about what I want and need? I don't even know what those things are. There is no feeling more isolating than grief. I miss being a mom - I miss Tash.

I'm sad...

That is all there is to it - I am sad with no relief - just trying to fake it everyday - reassure everyone I'm okay - I'M NOT! 13 days....

HOW AM I SUPPOSED TO DO THIS? That is the question I continually ask myself? I know it would not make it easier if I had more children, BUT, how can I can on without my only child? If anyone could answer that, I would listen. 15 days.....

She always sang as if no one could hear her...

...And, most of the time, it was a good thing they couldn't. I used to tell her that some people sang in a way that it hurt people's ears - Tash sang in a way that made my eyes feel that they might bleed at times. And, she knew every word to every song - no matter the genre. Thousands of songs remain on her ipod - unused - waiting for her to bring it to life.

If you went to see a show she had seen before, she would say all the lines with the actors - if it was a musical, she sang every song. I always tried to be irritated, but, ended up laughing - her joy was infectious.

We have passed the six month anniversary of her death - and now, we count down the days to her birthday. There is no relief. I leave town - and there is no escape - her face is everywhere - everything I see pulls another memory from the recesses of my mind. I don't want to forget her - I don't want to lose her - but, for one day, I would like to be able to shut down my brain - just relax - think of mundane, trivial things - FOR JUST ONE FUCKING DAY!! One of the things no one understands is that there is no peace when your child dies. Yes, people go back to their lives - and, there are no more plans to make - but, your brain never shuts down.

In the beginning - which is where I am - it's not the good times that run through your head 24/7 - it's the what-ifs, should have's and wished I would haves that rule your days and claim your nights. Of course, everyone tells you: "There was nothing you could have done" or "You did everything you could."  But, what they don't know is THAT IS A LIE!!!  There was so much more I could have done - I should have done - had I done my job as Tasha's mom, she would still be here.  Now, how does one live with that?  I guess they would live with it like I do - with little appetite, tons of guilt, daily thoughts of giving up, and the inability to sleep.  And, what I want all those people with all the answers to answer for me is: How do I get past that?  How do I come to terms with the fact that I failed my daughter?  I was not there when she needed me the most - she had to take her last breath alone - was she scared?  Did she call for me?  Did she fight to stay?  Or, was she relieved to be done with the life that had let her down so often?

For nine--and-a-half years, she had suffered through dialysis - and, if I was being honest with myself, there was no end to it in sight.  She may never have gotten another kidney.  Her body hurt, she was lonely, she was tired - had she had enough?  Am I selfish to wish that she had fought harder?

She really was my best friend and I think I was hers.  I cannot get over the fact that she left me - I do not understand how it could be.  There are days when I feel like I could go crazy - because I cannot accept the fact that she is not here - will not be here - will never celebrate another birthday.

I have seventeen days left in which I must make a decision.  In seventeen days, my baby would have turned 28 - now, she will forever be 27.  I miss her so much - I wish I had been a better mom - she deserved a better mom - she deserved a better life.

I love you, Tash...

Do You Want to Help Me Grieve?

I am a new person

One I do not like

It's not who I want be

I try with all my might.

Please be understanding

Please be patient

Maybe you could just sit a while.

That is what I need.

Lost in the world without direction

My daily life offers no guidance

And I can no longer do all the little things

That I used to do.

There are places I cannot go -

There are things I can no longer do -

Shopping for groceries breaks me heart -

As I see her favorite foods down every aisle.

McDonald's is off-limits

The smell of her favorite place diminishes me to tears.

It was always her favorite -

Breakfast, lunch, and dinner.

Please say her name -

Say if often -

It is music to my ears

Even though it often reduces me to tears.

I need to know she is remembered

I need to know you care

I need to know she mattered

And that  there was purpose in her few years.

When you say her name and I tear up,

It is not you that causes me pain.

It is the loss of my love,

my daughter, my Tash.

What can you do, you ask?

There are so many things -

But, none, I have the courage to seek.

Just be there for me.

I can always use a shoulder on which to cry -

Sometimes I need an ear,

It's okay to call and just let to me hear you breathe -

This is the hardest part.

I cannot come to you -

I cannot tell you what I need -

It's too hard to overcome this weakness -

I just need you to be there, friends.

This road is long and I am still trying to find my way -

My heart is ripped to shreds.

All you have to do is acknowledge my pain -

I can't tell you how much that would mean.

Someday, I hope to share her pictures -

Without the threat of total collapse -

I want to share her stories -

Especially the ones that made us laugh.

Twenty-seven years were not enough -

Not for the child of my heart -

The love of my life -

My beautiful, wonderful Tash.

They say this pain will ease -

It will not leave,

But, we will learn to live together -

This terrible pain and me.

Please be patient with me -

I will never be the same -

Your help is always welcomed

But, this grief has changed me into a new me

So different from the one I always thought I would be.

Six months ago...

That was the last time I saw your face - heard your voice - hugged your neck.  You were so bouncy - so excited about going out that night.  I couldn't even get out the door all the way because the dogs had screwed up the rug, pushing it up against the door.- but, I remember everything - what you said - what you were wearing - your Snooki slippers - what I was wearing - and, that stupid stack of boxes - the dialysis supplies that I thought would keep you alive.  Little did I know...

Tomorrow, it will be six months since you died - I am not sure how to go on racking up the anniversaries.  I don't want to count the days I haven't seen you - I want to count the days I see you - I want to see you!!  How is it possible that I could live years without you?   

I wonder about every minute of that last night.  Yes, there are pics of you dancing - pics of you with your friends - but, what was going on with YOU?  What did you think?  I have read the texts you sent at 3:30 in the morning - but, now, I have also read the medical examiner's report and I know you were not drunk.  What was wrong?  What happened?  I guess I may never have the answers to those questions while I am here  on earth.  Maybe, I will never have them at all.  But, knowing that answers possibly lie beyond this realm, gives me hope - and makes me anxious to learn those truths. 

It's July 6 - 25 days until your birthday - 25 days until I have to make a decision whether or not to answer that promise I made to you.  Twenty-five days for you to try to come through - to answer me - to tell me what to do.  Did you REALLY know how much I love you?  How much I needed you?  You may have thought that you needed me - and, maybe, that is true - BUT, I NEEDED YOU, TOO!!!  You completed me - you gave me purpose - you lit up my days - and, now, I lay here, thinking: 6 months ago - how could it have been six months?  How can I take another breath when you are not here?  Yet, my body betrays me - it lives on - while the most vital part of my life has left here.  How is that possible?

I love you, Tash - I hope you know how much - I hope you always knew how much. 



By Faith, Not by Sight

I first saw Scott MacIntyre on American Idol.  It was there I saw his ability, his strength, and his attitude that seemed to hold him back from nothing.  I had to know more...

Reading that before American Idol, Scott almost died from kidney failure, made me stand up and take notice and he explains how he used the experience to do what  he felt like he was meant to do, all the while honoring God.  Scott's own words tell his story, taking the reader through his childhood and beyond his American Idol experience.  Throughout his story, McIntyre introduces is family and shares their strong faith in God. 

Scott's story is like a visit from a friend - as his words are read, one could imagine him sitting on the sofa, sharing his story - the ups and the downs.  Many times, when it seemed like doors were opening to Scott, he found them shutting before the full opportunity presented itself.  But, he never gave up, never stopped believing in God to do His will.  Scott McIntyre has never stopped stepping out of his comfort zone, facing his fear head-on - he continues to push the boundaries in his attempt to fully experience his life.   

Through his story, one finds an immense respect for his parents.  Realizing their son's love for the piano at an early age, they encouraged him at every turn.  Home-schooled throughout much of his education, his parents sacrificed to build his self-esteem, his skills and his ability to believe in dreams.  At the end of the book, while the reader knows she has just finished reading about a young man with a handicap, the real story is of a man with a strong faith who has many more abilities than disabilities, and uses those abilities to glorify God.  Inspiration does not even begin to describe this book.

I am so glad I read this book.  It reminded me of Tash -  her journey and the impact she made on people.   It's the story of a man who lets nothing hold him back, much like Tash.  I am a fan for life!

July 4, 2011

Our first July 4th without Tash - it was never a big family celebration - BUT, Tash loved fireworks! 

It's not getting easier.  In fact, I would say, with the six-month anniversary of her death coming up on Saturday, it is only getting harder.  I am not sure how or if it ever gets better.  Did I mention her birthday is July 31?  It's the day I promised to meet her - we have never spent her birthday apart.  How do I break this promise?  I broke so many promises to her in life - I do not feel like I can break one in death. 

If you have ever had anyone close to you die, I am sure you have heard someone say: "I am sure he/she would want you to be happy."  BULLSHIT!!!  How would they know?  No one was closer to my daughter than me - and I don't even know what she would want.  If I did, my life would be so much easier - not any less sad, but easier.  But, the truth is, Tash only wanted me to be happy when I was with her...would that change in death?

Tash was a 100 hug-a-day kid.  She could never have enough attention and that never changed - at least, not as it related to me.  If she found out I was out eating dinner, she would call and give me as much guilt as she could for not taking her.  The vacations I took without her were often celebrations of guilt - she couldn't believe I could go places and have fun without her.  I taught high school - and my relationships with kids drove her crazy.  She always took it as a slight to her.

HOW COULD SHE NOT KNOW SHE WAS ALWAYS NUMBER ONE IN MY LIFE???  No other person could have ever taken her place - no one will ever take her place.  She woke me up to what life was - what it could be - she opened the doors I had never had the chance to and I was able to see the world and excitement through her eyes.  She was everything that was good about my life.  She really was my sunshine...just like the song says...

As the day gets closer - 27 more days - I have to make a decision.  The questions continue - and they overwhelm and they frustrate - all questions - no answers.  My counselor says it's okay to break this promise - my husband begs me to break this promise - and, I...well, I wait for an answer.  There has to be a RIGHT answer - and, it has to be the answer that I can truly LIVE with.  What would Tash want?  Does she need me?  Does she want me there?  Does she want me here?  AM I living for two now - as I did when I was pregnant?  Is there a purpose?  What ever could my purpose be without Tash here?

From the time I looked into her face for the very first time, I believed my purpose in life was to be Tash's mom.  Without her, I have no idea who I am or what I am supposed to do. I say these words over and over - and, yet, I never feel closer to an answer to that issue.  I AM TASHA'S MOM!  I do not want to be anything else - I don't want to wake up everyday, knowing that I won't see her face, hear her voice.  How can you continue to live - to breathe - to think - when the purpose of your life has been ripped from you?