I can’t believe it took me so long to realize that…

Kate and Aunty Lisa, Christmas 1988


This post is in honor of and will be linked to Finish the Sentence Fridays, a blog that Kristi Rieger Campbell hosts. Check out her blog – and those of the other contributors! Awesome people, every one.  Finding Ninee (scroll to the bottom of the page!)

My daughter Kate is an amazing person. She’s on the autism spectrum, but wasn’t diagnosed until age 15. For the longest time I knew there was something about her that indicated a need for extra help. She had significant gross motor delays, for one thing; however, we were smart enough to accept help from the Program for Infants & Children when she was a baby, and this was a true blessing. 

That was the last time I was able to admit to myself that Kate needed help…a lot of help…help that I couldn’t give her. My problem was that I didn’t want to have her undergo the battery of psychological testing that’s necessary for an ‘official’ diagnosis of autism. I was afraid of labels. I did not want my beautiful, delightful daughter to be labeled with the ‘R‘ word, or to be warehoused in some ‘special’ classroom with other children from whom society expected nothing. I grew up in a time when anyone who wasn’t perfectly ‘normal’ (whatever the hell NORMAL is!) was told to take remedial classes and no one expected anything much from them.

Oh how I wish I had known about heroes such as Temple Grandin and Stephen Shore when Kate was a baby…maybe I could have saved her from fourteen years of people asking “But what’s the MATTER with Kate?!?” I can’t believe it took me so long to realize that THERE IS NOTHING WRONG with my daughter. What’s WRONG is that she is a square peg in a world that only accepts round pegs that fit in round holes. I can’t believe it took me so long to realize that it’s others who need to change how they see people with differences. I can’t believe it took me so long to realize that Kate is perfect just the way she is, with her entirely original sense of humor and her infinite capacity for forgiveness and compassion…with her love of gaming and her keen intelligence…and her great ability to Love. Every. One. I can’t believe it took me so long to realize that…but I thank God that I finally…finally…FINALLY! woke up one day and said to myself, WOW…what a gift my babygirl is!
I leave you all with a story that perfectly illustrates her Kateness. In 2010 my adopted sister was dying of cancer in Salt Lake City. One day The Call came that I was needed, as the end was pretty close…so as I prepared to leave, I explained to Kate that Aunty Lisa was going to die and she needed me to be there to take care of her. Because I am often unsure whether or not Kate clearly understands what she is told, I explained the situation carefully, as clearly as possible, and in several different ways. When I asked Kate if she understood that I HAD to take care of my sister, her reply absolutely floored me…she burst into tears and said, “But Mom, who’s going to take care of YOU?!?” She was on the plane with me the next day, and together we were there for my sister. Kate took care of me. I took care of Lisa. Kate understood what I had not: that together, we could do anything. I can’t believe it took me so long to realize that.

4 thoughts on “I can’t believe it took me so long to realize that…

  1. Oh Deborah! What a beautiful and also heartbreaking story. I'm so very sorry for the loss of your sister. She sounds amazing and her bond with Kate will be missed, I know. So much. Also I have to say that I want to change the fact that the world is square pegs. So so much. Thank you for linking up!

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  2. Thanks, Kristi. It was the hardest thing to go through…but it was the last gift I could give Lisa: to be there with her, to see her through to the end. I have no regrets at all. It taught Kate, who was 21 at the time, that there are things which are much more important in life than going to school or having nice things. I had to drop out of school to be with Lisa, but I'd do it again. In a heartbeat. Lisa is with me every day…she had so many sayings that I still use: when asked how she was doing, her standard reply was “Vertical and taking nourishment, thank you!” She never went to the hospital – it was called “checking in at the health hotel.” I could go on and on…

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  3. Thank you for popping over to my site and leaving a comment, Deborah. I am so glad to “meet” you. Both Kate and Lisa sound extraordinary. Lisa's “…. vertical and taking nourishment, thank you” speaks volumes about her. The “health hotel” just caps it. Love that. Your sacrifice of dropping out of school must have been difficult and yet it was the best thing you could have done. I'm so happy for you that you have no regrets. So many folks do.

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  4. Thank you for popping over to my site and leaving a comment, Deborah. I am so glad to “meet” you. Both Kate and Lisa sound extraordinary. Lisa's “…. vertical and taking nourishment, thank you” speaks volumes about her. The “health hotel” just caps it. Love that. Your sacrifice of dropping out of school must have been difficult and yet it was the best thing you could have done. I'm so happy for you that you have no regrets. So many folks do.

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