Tomorrow is the five year anniversary of when my little sister Carissa died in my family’s arms. She had Down Syndrome, and the past two years I’ve shared the same post which always makes a lot of people smile and cry. Which is fitting because that’s what she did in real life, too.
This year, I’ll do just that as well (you can find that here). But I also want to tell you about the time we found her hanging on for dear life from the, well, I’ll get to that…
Carissa, like many special needs kids, had some special skills.
She somehow knew how to triple her weight at will. At 20 lbs., she could make herself weigh more like 60 lbs. She would go limp and flop down when you tried to pick her up. It was cute when she was two. When she was 80 lbs. and ten years old, it wasn’t so cute.
She also was strong. And not just kind of strong. She was so strong that a charging rhino probably couldn’t knock her over. When she didn’t want to do something, or go somewhere, there was no making her do it.
She also was flexible. And limber. And adventurous. And free spirited. And she loved to run around buck naked. From age nothing to the day she left this earth, nudity was her companion. And why not? She wasn’t burdened by such things as social norms, shame, or self-destructive beliefs of what she needed to look like to be beautiful. She would streak because streaking was just better sometimes. She didn’t need a good reason. On more than one occasion I had friends over as a teenager when she suddenly ran from one end of the hall to the other, laughing as she went, nekkid as a jay bird.
And one time when she was seven years old, she combined her dead weight, her strength, her adventurous nature, and her free spirit, and she headed out to the garage, fully declothed, climbed up the closed garage door, hit the opener, and was surprised as all get-up when it started moving with her still attached.
Carissa, she didn’t let go or jump off. No, she fastened her gorilla grip tighter than she ever had, and she road that sucker all the way up until she was hanging upside down, her bare little butt pointing out at the entire world.
And she started screaming for help.
Every single word of this perfectly describes our 9 year old Molly, born with DS. She escaped our locks on the inside home and went to jump on the neighbors' trampoline naked, not our trampoline, theirs. As a parent I truly hope her siblings will remember her with the love and appreciation that you do your little sister.
I... kinda wish you hadn't shared that story.
Still, I guess I'm stronger for, I dunno, surviving the image.
I'm also so thankful for having been adopted as an only child.
Just like people w/ down syndrome people with autism also seem to have that hulk like strength. It amazes me what things can get broken or the injuries sustained by those with special needs that would make your average kid cry like a baby! But hey there's always good news, it's very helpful if you can direct it toward a certain spot that needs to be demoed!!!!!!
What a beautiful child, God gave her a heart of gold and she spread that love around to all she held dear. What a blessing it must have been to have had her in your life. Sweet Angel watching over you now.
I read that thinking there's a blessin in that lesson: I'm grateful we didn't have electric garage doors, or my sister would have done it too! As it was, she only rode her bike naked, sleep-walked naked, and once we found her in the neighbor's flower bed at 5 am naked.
Dan..I have been following your journey for a while, but this story I could TRULY relate to. I have a little guy, Cooper who was blessed with Ds. And he really can go from 40 to 80lbs with just one flop to the ground! Thank you for sharing about how fun that extra chromosome can make life!
oh Dan..Im so glad you shared this. I lost my son a few years ago. He was 18. He was Bi Polar and had some learning disabilities..but man, was he an amazing kid! From age 10 they called him The Mayor because seemed to know everyone, and they all knew and liked him as well..Thank you for making me happy-cry today my friend..
A great story of a wonderful little girl. Clearly she brought much joy to your family. She had a beautiful spirit.
Dan, I've been reading you forever now, and I think out of all the laughs I've ever had, this one had me laughing the hardest! Lovedlovedloved this story!!! I work at a theme park, and I had a guest yesterday that I got to spend some time with, she had DS and was celebrating her 30th birthday with us. I thought of Carissa, and of you, and how much you both would have loved to have come swim with dolphins like this sweet girl did. You talked about how many people showed up to her funeral, about how many lives she touched - past tense. But every time you share about her, she **continues** to touch more lives - like mine. Love you :)
Sorry for posting Cindy, but I want ALL my friends to see this. I think this is the life Jesus has in mind for us, if we could let our soul go and live in the spirit- I'm thinkin'.
Your sister was so beautiful! She sounds like a real fighter. I'm so happy you shared this story with us. :)
Cute story. Friends of my parents had a daughter with Down Syndrome, not what it was called 50 years ago. Patty was a sweet loving girl. Our parents are gone now. I lost track of her but I think of her often with love and a smile.
<3 Your post In Honor of Carissa, and then this one had me laughing & then crying so hard. My 6 year old daughter is a mid-to-low functioning autistic and man...she has taught us so much. The love you have for your sister is amazing. I pray that my other two children will always share that type of love with their big sister, just as they do now! <3 Thank you for sharing. Sending some love to you, your family and your little sister!
It's been 18 years since I lost my brother who had special needs and because of him I'm a special ed teacher. All of the kiddos I've had the pleasure of teaching and getting to know have taught me just what life is really supposed to be: FUN! Thank you for sharing your memories, she was an absolutely beautiful young lady whose smile looked like she could light up a room! :)
Dan, your sister sounds like she was a joy to all of you, even when things like this happened. Hugs to you and your family.
Thank you for sharing. I work with special needs and she sounds like she would have been a favorite of mine...she is adorable!
Stories of your little sister always brings a smile to my face. Children with downs always bring a smile to my face. They are so innocent and smart in their own little way. I'm glad you have so many wonderful memories of her.