I don’t often sit and think about the way Carmen used to be. But today Lauren commented that she wishes Carmen could still laugh and play with her. So, I started thinking about the things I miss.
I miss Carmen waking up in the middle of the night and talking so loudly to herself that we all woke up. Da-da-da, ga-ga-ga. She could go on and on for hours! Most of the time one of us would get up and give her a bottle just so she would go back to sleep and we could all get some rest!
I miss her giggles in the car. We would go for Sunday afternoon drives and she would laugh and laugh. I think it was the sunlight hitting her face that made her laugh. I really wish we had videotaped that!
I miss feeding her butternut squash. She LOVED butternut squash.
I miss hearing Carmen wildly playing with the wind chimes on the activity gym. She would grab those things and make such a racket.
I miss seeing her big smiles when she saw something she liked. Shortly after we brought her home from Guatemala, I took her to the store. I held a big red puppy in front of her and she laughed out loud. So, I bought it. I’m glad I bought it.
I miss finding her all over the house. She never crawled but she would roll and scoot herself around. One time she started fussing and I found her on top of the floor AC vent! She had scooted herself into the corner and couldn’t back up.
I miss going into her room each morning and popping my head over the crib railing and seeing her big smile.
I miss hearing her burst out laughing when Dave would kiss her neck.
I miss seeing Carmen and Lauren playing together. Lauren would sit next to Carmen and hand her one toy after another. Sometimes Lauren would take a toy away from Carmen and Carmen would silently hold her arms out, hoping to get the toy back.
I miss seeing her pull Lauren’s hair. That sounds strange but Carmen was fascinated by Lauren’s long hair. Lauren would bounce by (Lauren does not walk, she bounces) and Carmen would grab her hair. It always reminded me of a frog grabbing a fly out of the air. She was that fast. Dave happened to take a picture of Carmen pulling Lauren’s hair. We were at last year’s Tay Sachs family conference. Carmen wasn’t able to purposefully move by that point but somehow got her finger stuck in Lauren’s hair.
Tay Sachs is horrible. I hate that so much of Carmen is gone. I miss Carmen.
I’m reminded once again that Carmen was “born to live eternally.” What you miss is not gone but reserved for you in heaven.
Crying sad tears for you Lana. I have no words except I wish it were not so.
Thank you for your honesty, it touched my soul. And thank you for reminding me that I should not take little things, like pulling hair, for granted. That picture is so beautiful.
Texas Grandma, that was beautifully said!
Debbie
I miss all of those things too with William…I try not to regret things but I do wish that I had pulled out the video recorder a little more often – just to hear his voice and laugh again. You are right – these diseases are horrible. Sending you lots of hugs. Oralea (William’s mommy)
Dave and Lana, I just found this little girl’s site. I thought you might like to see it. Their story is written from her perspective:
http://www.emilychao.com/
O, my! I just finished reading Emily Chao’s story and am wiping away my tears. I am at a loss for words (hard to believe if you know me). What a beautiful child and her parents sound so loving and wonderful. What a blessing to Emily and her parents that they have her grandparents with them.
As you have all said – these diseases are horrible. The best comfort I can find is that they are not suffering and they will soon be in the presence of their creator – whole and joyful!