13 Years Ago

There was a beautiful young lady, who would be 26 if she was still around. She only got to live half this time - she made it to 13. She was my boyfriend's niece and she was sweet with pigtails. She had a sister who was sweet with footballs. They loved each other so much despite being so different. And then one day, feeding their horse, there was snow and a car, and she was gone.

I dealt with this about as poorly as I could. I was overwhelmed by the situation, caught up in my own self importance and issues, fearful of doing the wrong thing, not sure quite what to feel or how to act. In other words, I blew it monumentally.

At this point in my life, I have lost so many people that I cared about - some to death and some to indiscretion. To those I lost to indiscretion, I suppose there is a chance to say "I'm sorry"; to those to death, there just is this forever hole.

When Zach was conceived there was joy, when he was born there was joy, when he was baptized, there was joy, when he took his first step, more joy. There was so much hope and anticipation of a positive future. Now I realize that even though we have been running full blast, I am likely in a place that I didn't realize.

My last post led me to a website where I read several posts by fathers who lost children. I shouldn't have been able to relate, but I did. And that is when it struck me - I have been in my own state of grief for quite awhile now.

When I realized that Zach was on the spectrum, before his official diagnosis, there was an unimaginable pain. Who I thought Zach was changed - and in some way, the child I thought I had was gone.

I am embarrassed that I have been dwelling in this state for so long. I am ashamed that unlike some people, my child is still alive yet I feel like I have lost him. Is it vanity? Is it pride?

I realize that every ounce of energy I have is being given to my children, and let's be honest, a bigger chunk to Zachary over Sophia. There isn't much left over. And I will be honest that I am really hoping that all the 40 hours of therapy/working with him ourselves constantly/biomedical intervention are going to make a difference and bring him back to us. It all sounds so desperate. I am sure some think I need to be in a better place of acceptance to be in reality. Believe me, I would just accept his diagnosis and quit the insanity- if - I didn't see such a change in him these past few months.

Today, him and I giggled at one another while we made farting noises back and forth. There was eye contact. He was engaged. It was silly and typical of a 4 year old boy. The shared laughing was out of this world. Later, he sat in my lap and we played on my laptop - he found every letter in the alphabet on the keyboard as I recited. I said 'M' he entered 'X' and then laughed. A joke!

We have a ways to go. He is by no means what I imagined he would be when I first found out I was having a boy at that sonogram 5 years ago. But I feel like I am getting him back again. My sense of loss is lessening.

Yesterday, a junior at our local high school passed after a fight with cancer. Last week, during his PT session, Zach roller-skated independently! I think perspective has finally come into my life - not out of a comparison of my life to others who experienced the ultimate in loss. But because I have witnessed and shared joy with my son, which in the end is what every parent really wants from their children.

So I am thinking of Erica today. Thinking of her family. Her beautiful grown sister who has done such great things with her life. Grateful for my family. I have certainly matured these past few years. Wish I could have had the perspective I have now years ago when I could have offered more compassion to others who really needed it. That's one thing grief is good for - I am changed forever. My heart will always look at another who is in pain, and I won't run away.

Breaking the Fog - Please Help

Overwhelmed with life right now. Baby steps all the way. There are good things happening. Not feeling motivated to get it all down - too much other stuff happening.

In an effort to break me out of my funk - I am hoping that helping another might actually help me get out of this gray, dreary, foggy place.

As some of you may know, a friend and coworker lost his 5 year old son due to complications of H1N1 last year. Having the fortune to hear some of his concerns and issues in his bereavement, I always felt helpless in providing him any true comfort. If this is one thing I could do to help him, I will. I cannot imagine, even with our difficulties with disability, ever having to face the day without my children. I cherish them more now than ever after considering that the loss of a child is not as rare an occurrence as I once imagined.

Help modify the Family Medical Leave Act of 1993 to include the death of a child as an additional reason to qualify for the benefits provided by this law. Help a bereaved parent to be able to take a 12 week leave of absence without the worry of losing their job.

...Let’s make a difference.

Please read the link below on another parent's story and how you can help.

http://grievingdads.wordpress.com/2011/01/09/we-can-do-this/