I lost my life six years ago…

There she is – my beautiful daughter. Growing up, I never knew who I would be – where I would go – or how I would build a life. Then, this baby was born and it all started to come together.

All I wanted from the time she took her first breath was for her to be happy. From the beginning, it was just US!!!! I was married to her father, but, he was pretty useless. How I treasured those late, colicky nights that everyone professes to hate. It was our time together. Once she was soothed, I would rock her and talk to her and tell her how much better than mine her life would be. I would tell her all the things she could do – all the places she would go.

Six weeks after she was born, we found out that not everything was as perfect as it seemed. After her check-up, they sent us for tests and the results were she had Polycystic Kidney Disease (PKD).

What did that mean? The doctors assured us it didn’t mean anything in the short-term. The form of the disease she had probably wouldn’t affect her until she was in her 40s, if it ever did. They were wrong.

She was 14, having a yearly checkup, and we were handed the news we never expected to hear – her kidneys were failing. It was time for meds and to start thinking about future plans.

There were tears – especially at the mention of needles – but, Tasha handled it like she always did – when she finished crying, she put a smile on her face and charged forward.

Two years later, there was a transplant. And, I was so proud to be her donor. It was all so easy…until the side effects hit. There is nothing worse for a teenage girl than the side effects brought on by steroids and immunosuppressants. But, still, she smiled.

There were bad days…there were mean kids…there were the stereotypical teenage woes. But, she made me so proud with her strength and tenacity.

Finally, off she went to college and to grab life by the horns….only to be pulled back down to earth by a failing kidney and be handed a lifestyle of dialysis and medical problems that plagued her until her death at 27.

http://www.tampabay.com/news/obituaries/natasha-knobel-didnt-let-her-illness-define-her/1211614

And, now, six years later, I still struggle…to find my purpose…to understand life without her…to make sense of the choice people made when they walked away when I needed them most…

So, now, the struggle is still there and these days never get easier…

Tash, I love you – I miss you. I know life wasn’t fair and you suffered more than your share. You deserved better. You fought so hard for so long – I really thought you would win the battle. And, it breaks my heart to remember all the pain and suffering you went through. It’s all another reminder that life isn’t fair. I needed you and I still find myself needing you and wondering what I could have/should have done differently. But, I hope you know how very I loved you and love you and will continue to do until my own drink breath.

3 thoughts on “I lost my life six years ago…

  1. What a beautiful bittersweet story you have shared of Tash. Many of the things she endured and you talked about bring back Bittersweet Memories for myself. Garrett Garrett contracted a very rare viral illness when he was 2 1/4 years old July 4th 1993. He suffered kidney failure and we shifted gears from planning for a drive to New England to be on a family wedding to living in the PIC unit at the hospital. He was on steroids for nearly a year. Yes the neighborhood kids were cruel but his brother took up for him with the huge moon face and all of the hair growth and other visible side effects. It’s amazing how resilient our children were.πŸ’œπŸ’™πŸ’” I’m sorry she had to endure so many things, Tonja. ((Hugs)) and love as you remember all of the amazing times.βŽβŽβ­•β­•

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  2. The heartbreak of watching our child struggle..then death…is so hard…
    I find I only have groans for prayets now…
    When nothing can compare to our child’s life,
    Thank-You for sharing your beautiful daughters story..i so relate to your pain…πŸ’”πŸ˜’

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  3. What strong women you both are! Your beautiful, brave Tasha and you overcame so much. I, too lost my 23 year old daughter Erin on 1/16/2012. Suddenly to a car accident. She was my pride and joy, my only daughter of four. I miss her smile, her sense of humor, her caring nature, but most of all I miss her checking up on me everyday either by text or a phone call. Something we grieving moms will never get use to….

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