A Life With Joy!

Joy - noun
1. Intense and especially ecstatic or exultant happiness.
2. The expression or manifestation of such feeling.
3. A source or an object of pleasure or satisfaction: their only child, their pride and joy.
4. To take great pleasure; rejoice.
5. To fill with ecstatic happiness, pleasure, or satisfaction.
6. To enjoy
(info from www.thefreedictionary.com)

A few short weeks after my first birthday we welcomed a new addition to the family. Her name was Joy. Born like other babies, she cried, she slept and messed her diaper. Little did my parents know that her brain was not like other babies. At age 2, Joy was still not walking or talking. After a lot of testing, doctors said she may never walk or talk, she would be a burden.

At age 5 Joy walked just fine and did what she could to communicate. We all learned basic sign language, which helped but only a little bit. She did a lot of grunting, pointing and crying. We all got frustrated trying to communicate. But I think it was hardest on Joy.

Doctors told my parents that Joy will not have the mental capability beyond a toddler. This, of course, was hard for my parents to absorb. And my mom fell into a depression. She slept a lot and “hid” in books.

Joy has Mental Retardation, Tourette Syndrome (TS) and is slightly autistic. She can read simple children books, write her name and other small words, and talks like a 3 year old. It took her longer to do simple things us parents take for granted. Like walking (2 ½ years old), potty training (9 years old), talking full sentences (7 years old)… How hard would that be as a parent?

Disneyland 2004

Things that we long for and cherish, she will never get to enjoy. Joy watched me learn to drive and get my license, she watched me fall in love and get married, and she intensely watched my belly grow all 3 times I was pregnant. When I was learning how to drive I remember her always asking “My turn?” and “Can I drive next?” When I was planning my wedding she asked “I get married too?” And when we told her I was pregnant her eyes went from my belly to hers and back to mine again.

 

 Growing up with a mentally disabled sister was hard. Most of the attention went to her. My parents spent a lot of time helping and teaching her things that I grasped very easily. My parents did not neglect me, although it felt like that at times. My parents went to all my school plays, dance concerts and ceremony’s I was involved in. There were times I didn’t understand why I was in trouble and wondered why I was always “second” at home when I was first born. Looking back, I believe my parents did their best to give me the attention I craved.

Joy and I at Grandmas

Joy and I were very close growing up. We were born 12 months and 2 weeks apart, how could we not be close. I had friends that would have sleep overs and it was hard on Joy watching me go places she could not. But when I had sleep overs Joy was welcome to get her sleeping bag and join… until middle school came along. I think we can all agree that middle school was not the best years of our lives. Sadly, Joy was no longer welcome. We wanted to talk about “grown up” things, like boys, make up, clothes and hair, and I knew Joy would not only be bored but she would rather watch her favorite Disney movie anyway. It never had anything to do with her being “different”, it had to do with different interests.

As time went on, high school came and went. I got engaged at age 22 and was married 6 months later. 2 months after that I found out I was pregnant. When Michael arrived I was surprisingly not nervous about Joy holding him. She did better than I expected! When she held him for the first time I remember her saying “Hi Michael. It’s me, your auntie Joy. I love you.” It brought tears to my eyes.



Holding Michael

Holding Emily

Holding Sam



A little over a year now Joy has been having problems with her medication. A switch in the medication landed her in the hospital. It was a VERY hard time for my family. It has taken about 6 months, but we are slowly getting our Joy back.

  

She loves to feed the ducks

Joy has lived up to her name most of her life. She spreads joy everywhere and brings a smile to faces who’ve never met her before. When she first grabs you and kisses your hand it scares most people, at first, but most of the time they start a conversation with her “Hello, what’s your name?” My family has had moments of frustration, embarrassment, fear, even bitterness, but we have had many more moments of happiness, laughter, love, joy and selflessness. Joy has taught us many things; patience, the true meaning of joy, love, to put our faith in God, and the true meaning of family. Joy is an inspiration. I believe, if I didn’t have her in my life I would not be who I am today.

Thanks Joy! 

My favorite picture