Thursday, April 14, 2011

The Note That Started It All

I posted this note on facebook about a week ago. The conversation with my friend that I write about in this note, and the impact it had on my life's perspective were pretty profound. It had been on my mind and in my heart for a long time. Finally, I decided to write it down. I'm still not sure why I decided to share it with my FB friends but I'm so glad I did. My friends had such wonderfully nice and supportive things to say! It seems that in writing this note I helped myself but maybe helped a few of my friends with perspective on their lives too! It also helped me realize what an amazing support group I have out there! I felt so good after writing down my thoughts and feelings and I got such positive feedback from my friends that I decided to go ahead with my idea to start a blog. So, here it is...the note that started it all:

Don't know why I feel the need to write this down but it's been on my mind for a while now so I thought I'd put it here...maybe I should start a blog. Anyway, a while back, a girlfriend of mine who is my age, single, with no kids, who I've known for a very long time said to me, "you have had such a charmed life." I looked at her with my mouth slightly open, a bit wide-eyed and just a little confused.

I began to think of my life: my mom and dearest friend, died way too early at the age of 55 after suffering through three years of ovarian and lung cancer and all of the chemo, radiation and surgeries that went along with it. I watched my dad suffer my entire life after a terrible car accident that left him broken and in pain. He was addicted to pain killers, got bladder cancer, acquired MRSA after hip replacement surgery and ulitmately died at 66, again, way too young. My two boys never got to know my mom, their Boppy, and they only remember Poppy sick and in pain. They will never know the love that only grandparents can shower on a kid. Speaking of kids...I have a son with a rare genetic disorder, Kabuki syndrome. In the first five years of his life he was in the hospital as much as he was at home. Twice in his little life we almost lost him. Once from an unknown infection, the next from RSV when he spent five weeks in the hospital. Four weeks in the PICU in a coma, hooked up to more machines that I've ever seen. No parent should ever have to see their baby like that. Since then we've spent every day trying to understand and figure out Kabuki syndrome, how it affects John and how we can make his life easier and better. He's medically fragile, ADD, autistic, has a heart condition, issues with his bones, he's hypotonic and apraxic. Every day is an adventure and a struggle. To make it even more difficult, I'm married to a man in the military so he's gone...a lot! There have been deployments from six months to a year with week long trips scattered throughout. During those times I have to deal with all the things I usually deal with: boys and school and doctor appointments and therapy appointments and house cleaning and grocery shopping and meal making and homework but I also have to do the things my husband usually does around the house " yard work, dog poop :-p, trash, home repair, computer fixes, discipline, bills. I have to be a mom and a dad. Also, my grandmother is 87 and in poor health and it has fallen mostly on me to help her. Thank goodness she now has a full time care-giver but it's so hard to watch her mind and body fail her. On top of all of this, I'm losing my sister, my best friend. I never ever thought that anything would or could come between us...but I was wrong. We are squabbling over decisions made by my parents before they passed away. Now the person who I talked to every day (multiple times a day), who I shared my happy thoughts with and told my deepest darkest secrets we rarely talk at all. Not only that...but she's going to move out of state soon so the chance of us actually getting over this is slim. I'm sad because I feel abandoned, I feel like she's all the family I have left in California and soon I won't even have that anymore. I feel bad for my boys because they are losing their cousins...their best friends...I know how it feels. My heart is breaking over this.

So, after my friend told me I have had such a charmed life...these are the thoughts that quickly go through my mind. I don't voice any of them. I simply say to her, "Oh really, what makes you say that?" "Well" she says, "You grew up in a family that loved and supported you, surrounded by parents and grandparents that would do anything for you. They were there for you even when things got hard and they never gave up on you. You and your sister always got along and actually seemed to enjoy each other's didn't fight all the time like I did with my brothers and sisters. I remember that you would actually go to family reunions in the summer and talk about all your cousins and aunts and cool is that? To be surrounded by family. You got to be the lead in the high school play and you were on the varsity soccer team. You were talented and athletic! You were a princess at Disneyland and traveled the world as a Disney entertainer. You met your husband in the most romantic way: the Navy pilot falls in love with the Disney Singapore, no less! Does it get any better than that? You've traveled the world with your husband and the Navy. You are married to a hero, for God's sake! You have two beautiful kids who love you unconditionally. Yeah, I know that John is special but you have the chance to teach him that special is ok. You are molding two little lives...I don't get the chance to do that."

I listen to all she says. I think about how I see my life and how she sees it. I focus on the fact that my parents are gone, she remembers the loving family I grew up in. I'm sad that my boys won't know their grandparents but, luckily, they were amazing parents and showed me, by example, how to be there for my boys. She talks about all the amazing opportunities I had as a teenager and young adult...things I rarely even think about anymore but need to remember more often because not everyone had it as good as I did. I complain about my husband always being gone and all the work it creates for me and she reminds me that this life has alowed me to see the world and my husband is an amazing man. Way too often I think about how hard it is to have a child with special needs but, she's right, I have an amazing opportunity to teach both my boys that different is ok. It may be harder but it takes a strong person to be different. I get to help guide these fabulous boys from children to men. Wow...what an honor! I forget that these two fantastic kids love me for who I am...simply because I'm their mommy. This is a blessing that not all women get.

I guess it's really all about perspective. Sometimes you need to see someone else's view of your life to put it all into perspective again.


  1. Love you, Temre. So glad you're off to a great start! I look forward to reading more . . .

  2. Very moving and heartfelt. Love the blog!
    Peace, -Trev