January Guest Blog

I love this blog.  It has been healing for me to write about Jackson and about issues that I have gone through as his Mama.  I've also discovered how much I love writing.  I just wish I had more time to do it!  When I went to the advocacy weekend in Olympia a couple of months ago I was asked if I would be interested in being a guest blogger on the new Informing Families Building Trust blog which is through the Developmental Disabilities Council of Washington State.  Each month they will have a topic for guest bloggers to write about.  The blog is finally up and running and my first contribution is now on their blog.  You can read my submission below or check the blog and my contribution out at: http://informingfamilies.blogspot.com/2013_01_01_archive.html 

“I Wouldn’t Change My Child for the World, but I’d Change the World for My Child”

When we got the diagnosis that our son had a brain malformation and wasn’t going to be who we thought he was, I thought the world was going to end.  Instead, I soon discovered that the world was just beginning. 

For so long I grieved over the lost little boy I wanted to have.  I think that is a pretty normal reaction for most of us who have a child with special needs.  But what has taken me 3 and half years to learn, and what I am still learning, is that having a child like Jackson is cause for celebration.  “Why?” some may ask.  Why would I celebrate having a child who at 4 years old can’t walk, can’t talk, is epileptic, and has cognitive disabilities?  My response to that is how could I not celebrate a child who is beautiful, happy, funny, goofy, sweet and loving, has touched so many lives, brings enormous joy to my life, reminds me what is really important, is slowly but surely making progress, and who has taught me what a mother’s love really is.  Despite Jackson’s disabilities and the struggles we face in raising him, he is my son.  He is a part of me.  How does anything get any better than that? 

Don’t get me wrong, there are tough days.  Some very tough days.  Jackson is about 45 pounds and carrying him around, putting him in the car, and putting him in his wheelchair every day is wreaking havoc on my back.  It’s frustrating when he is wants something and gets upset or mad and I have no idea what he wants.  His numerous doctor and therapy appointments are exhausting.  It breaks my heart when he has to go in the hospital for tests and they poke and prod him.  Then there was the time that he had a seizure in the car.  We pulled off to the side of the freeway just as Jackson lost consciousness and his lips turned blue.  For a few minutes of my life I thought my son had died.  A little bit of my heart died that day.  So it’s not all roses.  But no parent has a child that is all roses to raise.  Every parent has challenges with their child.  Special needs parents just have different challenges. 

For me personally, the best thing to come from Jackson, other than Jackson himself, is a new sense of purpose.  In college my minor was Parent Education.  I was getting my teaching degree and I thought that would be a good accompaniment since I would also be working with parents.  Little did I know that my in my far off future it would be all I wanted to do.  Having traveled down the road of a special needs parent I have learned a lot, am still learning a lot, and know that there is a plethora of learning ahead for me.  I want to share what I have learned with others, help them travel down their road with their child, and be a support system for them.  I also want to be an advocate for not only my son, but for other people with disabilities.  I am currently taking the Advocacy Leadership class offered through the Arc of Spokane so that I can learn how to be an effective and educated advocate.  In my wildest dreams I never imagined this is something I would want to do with my life.  Yet here I am. 

I would never want to change Jackson.  I love who he is.  It is exactly because of who he is that makes me want to go out and change the world for other parents and people with disabilities.  If at 4 years old he can ignite my passion to change the world, I can’t wait to see what the future holds for us!

Personal Values & Vision Statement

I was recently given a homework assignment in my Advocacy Leadership class.  The homework was to write down my personal values and a vision statement for the next 5 years.  Thought I would share it on the blog. 

Personal Values & Vision Statement

My personal values have traditionally been honesty and integrity (being true to who I am and being honest with others), respect (treating others the way I want to be treated and showing others respect), sympathy (understanding and making an effort to see where others are coming from), and decency (being someone I can be proud to be). 

Since having my son I have added inclusion and unification to my values.  I believe all members of our society should be just that, members.  Despite differences someone may have, they are human and are part of our society and should be included as such.  In addition, creating alliances between those with disabilities and those without disabilities is core to creating unification in our society.  If we do not educate and bring awareness to the needs, wants and desires of those with disabilities, society will continue to treat them with discrimination and indifference. 

My son Jackson has taught me a hard lesson.   You cannot plan ANYTHING!  No matter the amount of planning and preparation I do, things have a way of not working out.  5 years ago I was pregnant with Jackson.  My vision was having a healthy little boy who followed his Daddy around fixing things in our house.  I even found a little tool belt for him.  By now he would be rock climbing with us and would be going to preschool while I was at work.  None of the vision I had 5 years ago is reality today.  Having a 5 year plan is a nice idea but just not realistic. 

But just to humor you and follow through with my homework, all I can say for my 5 year plan is that I hope to be alive and still taking care of my beautiful little boy and amazing husband.  It would be nice to have grown our family with more children, I would like to be doing some advocate work for parents of special needs kiddos, and I would be overjoyed if Jackson had some kind of mobility.  Otherwise I will get what I get, and I won’t throw a fit.

Back to Life

Now that we are no longer on vacation it has been back to life for the Klim’s this week.  Jackson is back in school which of course means he got sick this week.  He managed to catch a little virus that made him throw up and have diarrhea.  Tuesday night the massive bum explosion began around 6 p.m. and lasted until 5 a.m. Wednesday.  The good thing is once he got the majority out he was the happiest kid you ever saw.  The bad thing was he was the happiest kid you ever saw, at 1, 2, 3, 4, and 5 a.m.  At 3 a.m. when you are changing about your 12^th diaper for the evening, things don’t seem so happy.  Mama was definitely not happy.  Another bad thing about Jackson is that when I use my stern Mommy voice, he laughs.  For some reason he thinks it’s hilarious.  Which only makes me more mad.  Which is even more funny to him.  Damn kid.  I suppose it was around 3:30 a.m. when I was completely out of my head with exhaustion that I decided I might as well join in the fun.  So we had a little picnic on the floor of his bedroom, some water and bread to help with hydration and to stop the pooping.  And we laughed, for whatever reason.  Finally around 5 a.m. he went to sleep.  I headed to bed thinking we could get finally get some sleep.  3 hours later Jackson was awake and happy again.  Needless to say Wednesday was a long day for us.  He just didn’t want to nap and all I wanted to do was nap.  We made it through the day though and Jackson was back off to school today.  Although, he was grouchy and yawning all the way to school.  Cute little bugger. 

This week I conducted my first Random Act of Kindness in honor of the Newtown victims.  I decided that the most appropriate place to start was with Jackson’s teachers, in honor of the teachers who lost their lives.  So on a cold, rainy/snowy day I surprised Jackson’s 3 teachers with hot chocolate.  It was well worth it to see them smile and thank me repeatedly.  As a former teacher, I know how hard teachers work.  I firmly believe Jackson’s teachers work a little harder since they are dealing with special needs children.  And since one of the young victims of Newtown was a child with special needs, and another victim was his aide, then it only seemed more relevant to show them an act of kindness.  Can anyone guess where I’m headed next?

Bringing Smiles

 Well we made it to sunny Florida where we were able to enjoy 14 days of beach and family time.  The best part of our travels and being out and about in Florida was Jackson’s wheelchair.  More specifically, the Christmas lights on Jackson’s wheelchair.  Who knew a string of lights would make so many people smile?

It started the morning we left Spokane.  The Southwest ticket agent was the first to comment on them.  Then the TSA Agent gave Jackson a sticker saying he had the best wheelchair he’s ever seen.  All through the airports I saw people looking at his chair and smiling.  I heard a lot of people commenting on his lights as we walked by.  The best responses came from other kids who would stop in their tracks and stare at the lights as we went by or yell “Look at the lights on his chair!”  One day we were in Target in the toy section and there was a little boy who was probably about 10 with his two little brothers.  The older boy stopped when he saw the lights.  Then he told his little brothers to look.  As Jackson went by them all 3 boys were looking and smiling.  As I walked by I said “Pretty cool lights right?”  The older boy looked at me with a big smile and said “They’re awesome!”  I was so delighted to have so many people looking at Jackson is such a happy way.  Instead of staring at his chair negatively or giving me that look of pity smile, we got to experience smiles of happiness.  I think it was the first time I actually liked the wheelchair and it changed my perception.  It seems Jackson is always teaching me new ways to think and feel.  And now his mobility device is pitching in. 

Last night I took the lights off the wheelchair.  Jackson went back to school today and I figured it was time.  I was sad to take them off.  They brought people joy and they made Jackson stand out, in a positive way.  From now on if I can find lights for every holiday – Valentines, St. Patrick’s Day, Easter, etc.  – they are going to be on his wheelchair!

On another note, I am still thinking about the victims of Newtown.  Mostly thinking about their families and how hard the holidays must have been for them.  I’ve been trying to come up with ways to honor them.  I’ve decided to adopt Ann Curry’s idea of 26 Acts of Kindness.  I am going to make them last all year.  Maybe do 2-3 a month.  I’ve come up with some fun ideas and as I follow through with them I will share them on my blog.  So stay tuned!