Monday, April 14, 2014

How has having a child with special needs changed me?

Lately I have been thinking- how has having a child with special needs changed me?

I often refer in vague cliches about the life changing experience it is to have a child with special needs, but what does that really mean?

It's difficult for me to pinpoint this because for me- having a special needs child has lined up with the start of motherhood. So how much growth from these past 4 years can be attributed to special needs, how much to just motherhood in general, and how much to just growing 4 years older in a volatile season of life?

And maybe even after I tell you how I have changed, this would a completely different story for another family with a child with special needs. Makes sense to me. We are all different and we live different stories. So here is mine.

4 years in. What does it look like? Have I changed?

I became a mother when I was 25. And for those 25 years, I lived life like I was looking at a beautifully scenic mountains through an empty paper towel roll. I had a super awesome view that was extremely narrow and limited.

When the paper towel roll was ripped aside, at first my eyes were blinded by the full extent of the harsh sun. But after an adjustment period, I noticed a wide panoramic view that I had no idea existed. A broad, spectacularly detailed creation that I started to enjoy at its fullest- for the first time.

I grew up a musician. I started piano at 5, violin at 8, clarinet at 9, and saxophone at 14- then taking all the instrument classes during my undergrad (bassoon being my favorite!). I started practicing 4 1/2 hours a day back in elementary school. I performed with the Milwaukee Symphony twice while in high school, and I won national solo competitions 4 times. I competed in every competition I could find and did very well in almost all of them (this isn't a resume, so I won't bore you with a list). I loved to perform, and I was good at it. After an undergrad in music education, I then got my Masters degree in clarinet performance from the University of Minnesota- studying with Burt Hara (MN orchestra, anyone?)
(masters' recital)

After grad school, I taught at a public high school band, orchestra, and piano theory. It was during my second year of teaching that I received Addison's diagnosis.

To me- music was all that existed. I had a singular focus, and really nothing else interested me in the slightest. I had a hard time connecting to other people, because if you didn't see things exactly the same way I did or hold exactly the same interests- I really didn't have much to say to you.

Enter: Addison

As a very high achieving person with no background or interest in special needs, this diagnosis hit me hard. I have written about that a lot. If you have been around any length of time, you have read about this most likely more than once.

As time went on and I adjusted to her diagnosis, something else began to happen. I realized that there is more to life than music. I realized that I love to do other things than just music. I realized that "it doesn't matter if you can't do that because you are good at music" isn't a good excuse for not trying new things, broadening horizons, and working hard to see results where it doesn't come as easily.

I found my eyes opened to other people who WEREN'T musicians. People who were different than me, but with their own set of priorities and skills that were equally as important as mine.  I realized that my path wasn't the only path, and detours along the way are chances to explore. My ears opened to hear conversations in which I could learn new things, instead of just assuming "new things" would never interest me and tuning them out.

I discovered diversity in life, and I fell in love with the beautiful landscape in front of me without viewing it solely through an empty paper towel role. So many intricate details escaped my attention before because I refused to look closely in my rush to achieve. The grayer colors from the shadows held beauty too even though before I didn't glance that way because I "didn't like gray".

Music isn't a bad thing. Dedicating your life solely to music isn't a bad thing. But for me it had become my prison. A prison in which my obsessive mind lived a very selfish existence- it was all about me, my achievements, and the awesome greatness that was my performances.

Addison/motherhood changed this for me.

I think about my push to achieve balanced with Addison's diagnosis, and I think having her in my life this makes me a much better mother and person.

Before, life to me was another competition. Push to be the best- no the very best. To have a daughter who I didn't think was "the best" or could ever strive to be "the best" broke my competitive little heart. But Addison has taught me that life is not a competition. Life is not about outdoing others- or making ourselves look good. Life is about love and grace and some more love. Serving, not taking. Giving of our gifts and abilities instead of hoarding them or waiting to use them only when people are watching- and clapping. Life isn't about proving something to the world. Life is about adding value to the world by sacrificing ourselves. It isn't about big achievements. It's about the daily habits and finding joy in the smallest of moments.

In teaching me these things, Addison showed to me that she is the very best. The very best daughter for me. She taught me things I didn't even realize that I needed to learn. She took my narrow view and stretched it to include new things- different things- beautiful things.

My life used to be all about the performance. Now it's about the daily practice. Enjoying the process of living. Growing through every rehearsed scale and arpeggio not to better a performance next week, but for the sake of enjoying each scale and arpeggio.

I wish I could say that this was a flipped switch as soon as I met her. But the truth is, I am a work in progress- each day working me over a little bit more as I continue to change and learn to love.

I spend my days giving of my whole self to 3 little children who need me very badly. There have been moments that I stopped and wondered (while changing a particularly odorous diaper perhaps)-" I got my masters degree for this? I practiced all of those long hours for my stage to be a changing table and the only applause being tiny hands beating against my leg because they need something NOW? Am I losing?"

And then I will be reminded- no. This is what winning looks like. Winning is getting up in the middle of the night with your daughter because she has found the words and desperately needs to talk to you RIGHT then. Winning is cleaning up vomit for the 4,980,876th time. Winning is doing dishes and preparing meals constantly because you are filling the bellies of a family of 5. Winning is growing little people to learn valuable life lessons- hopefully faster than you did. Winning is loving hugs from a muddy little boy. Winning is finding clean socks for 4 sets of feet each morning. Winning is- giving, loving, and being present.

Am I doing any of these things the very BEST of ANYONE IN THE WORLD? nope, nope, and nope.

I am a mom.

There are no awards for that. No competitions. No solos. No applause.

Just me and my charges- filling the days full of laughter and love. Pushing to do our best and then celebrating where ever that "best" may land. Accepting each other for the flawed human beings we all are. Leaning into the hard. Embracing the joy. Teaching hope. Praising efforts, redirecting when necessary.

I freaking love it.

I also seek to explore bits of the world I never before considered- getting to know people who have (gasp) different interests than mine and working to better parts of myself that I glossed over before because I wasn't good at them so why try.

Who taught me these things as she works so hard to accomplish things I used to take for granted?


This. This is how I have changed since becoming a special needs parent. You're right, depressing genetics counselor from 4 years life WILL totally be ruined.

(last mother's day)

1 comment:

  1. Thanks for sharing this one again, Deanna. Totally worth it!


Thanks for reading about my Everything and Nothing. I would love to hear from you!