July 22, 2004

Our sweet, beautiful, brave Taleah earned her angel wings this evening.

I can't yet make myself really believe it. She was strong and healthy with no sign of problems. Somehow, her monitor got turned off and bipap got bumped and unplugged. We figure she aspirated and went very, very quickly.

She passed quietly without even disturbing any of her siblings who
were all in the living room watching Little Mermaid with her.

When John checked on her she had already flown.

We are heartbroken beyond words, beyond expression. We held her and
held her and loved her. I ran my fingers through her hair for hours
as different family members arrived to say goodbye.

Her fourth birthday is day after tomorrow, she would have been four.

We are planning on having her funeral on Monday, we don't know where
yet. I would really like a funeral outdoors for her.

The house seems so empty, so quiet.

Monica

 

Taleah Louise English
July 24, 2000 - July 22, 2004

My sweet daughter Taleah is running and playing right now.

She was born with Type I Spinal Muscular Atrophy. It meant she never walked, she never sat up on her own, she never crawled. But she was the bravest girl I've ever known.

I got home from playing soccer a little after 6:00pm yesterday, and my wife was trying to get ready for a class she was going to go teach. All of our kids were in the living room watching The Little Mermaid. After Monica left, I put Colin (age 10 months) in a high chair and gave him some Cheerios to eat to tide him over while I made dinner. His sister Natalie (age 6) came in to help feed him. I got some water boiling and put in some spaghetti.

I heard the closing credit song on the video so I went in to stop it. I looked down at Taleah and noticed that while she had her bipap mask on, the bipap machine was off. The plug was out of the back. Her sat monitor was off too. I took the mask off and saw her lips were purple and her cheeks had an unnatural color.

I started doing something similar to CPR and yelled for Natalie to get me the phone. She gave it to me and asked something about Taleah, then ran outside in tears. Ethan (age 10) was asleep on the couch. I called 911 and got my behavior closer to actual CPR. (My first attempt at mouth to mouth I didn't cover her nose and blew a bunch of secretions out her nose on to my cheek.)

I yelled for Ethan to wake up while I was doing everything. I finally ran to the couch, yelled, shook him, smacked him once before he woke up. I told him to get the boiling-spaghetti off the stove and go get Taleah's cough machine. He was really out of it though. He never fully woke up.

Once the paramedics arrived, I went to call my wife's cell but she rang in right before I dialed. I said, "Come home now" and that was all she needed.

I really think Taleah was gone when I found her. I think she aspirated and went quickly. Once we got her to the hospital we told them to stop what they were doing, to just let her go. We had them take out all the tubes they'd just put in her. We took turns holding her and calling family. Held her for hours. We were at the hospital for over six hours, holding her, being with her.

She's no longer trapped by her body. She's free and happy and I know I'll see her again someday. She's probably playing with her Grandma Louise and her Grandma Mary Ellen and some of her SMA friends who've passed on before her.

John