Information about Tay Sachs, a degenerative, neurological disease


Nine years ago a baby was born in a tiny village in Guatemala. Every year on this day I think about Carmen’s young mom and wonder what all she went through to have this baby, only to hand her to someone else. I also think about the fact that she doesn’t know yet. So, on this birthday, we will start the process of finding Carmen’s biological parents to tell them the story.

I know some families who adopted from Guatemala still read our blog. If any of you have a recommendation for a good searcher, please email us! Thanks.

Happy birthday in Heaven, Carmen.

By |2021-07-08T21:45:03-07:00July 20th, 2015|Lana's Journal, Tay Sachs|239 Comments

Unasked Questions

Oh, how cute. How old is she?
Six. So is she in first grade?
Who is her teacher? Does she have so-and-so?
What’s her favorite subject?
Are you taking her to the <fill in applicable event name here>?
Do you want to get together for a play date with her and my daughter?
Oh my goodness! She doesn’t look like you. Is she adopted?
So how does she get along with her older and younger sister?

She would be seven this summer…but she’s not.
She would be in first grade…
Who knows what her favorite subject would be or if she would like school at all.
Taking her to that great event? Nope.
Play date? Not gonna happen.
Questions about her adoption? Only rarely from those who knew.
Getting along with her sisters? Someday…

There are so many questions that I would love to answer about her and would love for her to answer herself…

"Carmen" by Sarah Mattingly

“Carmen” by Sarah Mattingly

By |2021-07-08T21:45:15-07:00April 17th, 2013|Dave's Musings, Tay Sachs|150 Comments

Be Grateful

We watched the movie Courageous this week. One line stood out to me.

“You can be angry at what time you didn’t get with her, or you can be grateful for the time you had with her.”

That’s TOUGH.

But so, so, so true.

Sometimes I think Dave and I had it easier. Meaning we had such a long time to figure out how we were going to deal with Carmen dying. I think about people who suddenly, unexpectedly lose a child or a spouse. Or have a child kidnapped and never found. Or have a child who endures extreme pain for years and years. Carmen was unaware and unresponsive, a blessing to her. I don’t know…I just think that there are worse things. I suppose that’s helpful to me. Tay Sachs was BAD but it could have been worse. Yes, that is helpful.

I am grateful for the time we had with her but I do wish that we could have had a longer time of happy, healthy Carmen in this life. We really only had a few months, from 6 to 10 months, before Tay Sachs started taking over.

Death, dying and losing family and friends is easier to think about in the context of eternity. It’s easier to be grateful for a short time on earth when Heaven is waiting and eternity is a very, very, very long time.

Carmen, photo taken by Rashmi Pappu

By |2021-07-08T21:45:38-07:00January 25th, 2012|Lana's Journal, Tay Sachs|102 Comments

Five Years Ago, The Journey Began

Dear Carmen,

Five years ago today we brought you home. I’ve been thinking about the series of events that led us to you and you to us.

Your mom and dad were in their early 20s, unmarried and living together. When your mom found out she was pregnant, your dad left. Poverty-stricken and aware that she couldn’t provide for a child, your mom placed you for adoption.

We don’t know what exactly transpired next but somehow you ended up in foster care under our lawyer’s guardianship. Your foster home was not a good one. When we first met you, your hair was a mess and your fingernails were long and jagged. You had horrid diaper rash and you were stuffed into a size 3 month outfit even though you could easily wear size 12 month clothes. The side of your head was completely flat from laying in one position in your crib (or possibly on the floor) all day. I still feel sad that your first 5 months weren’t so good. Especially since you had such a short life.

We received your referral even though we weren’t next in line. I’ve written about that before and I still get chill bumps when I think about it.

Your adoption paperwork flew through the system and we traveled to Guatemala to bring you home in early January 2007. You were just 5 1/2 months old.

When we landed in the United States, your paperwork was processed right there in Dallas and you became a citizen of the United States of America. I was so excited for you!

You know the rest. We came home to Maryland. You grew and learned for a few months. Then you started regressing. We found out you had Tay Sachs AB Variant and wouldn’t live very long.

It has helped me over the years to think about how you might view your life. In four short years you went from foster care in Guatemala to a family in America to walking the streets of gold in Heaven. We often struggle with thinking that life isn’t fair but I bet you are very happy with how things turned out!

I suspect that if we could get a glimpse of the beauty you see now, we wouldn’t be so attached to our lives here on earth.

Carmen, today is a day of celebration. We are sad that you are no longer here but we are far more happy that you were ours for a short time.

Five years ago, the journey of our lives began when you entered our home.

Thank you for being you.

Love, Mom

By |2021-07-08T21:45:39-07:00January 10th, 2012|Tay Sachs|356 Comments

Happy 5th Birthday Carmen!

Today would have been Carmen’s 5th birthday.

If Carmen had been a healthy little girl, she would have asked for her favorite birthday cake. Since she’s in our family, it probably would have been a gooey chocolate cake. Maybe Great-Grandma’s Chocolate Cherry Cake.

She would have woken up with a huge smile on her face and asked to open her presents right away. Lauren would have most definitely picked something sparkly and girly to give Carmen. We would have tried to find something Guatemalan to honor her heritage.

Turning five would have been a big year for Carmen. She would be heading off to kindergarten this fall.

The girls would have taken the school bus together. I’m sure Lauren would have been thrilled to have her younger sister joining her at school.

But, none of that was to be.

Instead, Carmen is spending her 5th birthday in Heaven.

And honestly, that’s the best birthday present anyone could receive.


Happy, happy birthday sweet Carmen! We miss you. We know you are having the best birthday ever and we are looking forward to the day when we can celebrate with you!

Love, Dad, Mom, Lauren and Hope

Photo by Sarah Mattingly


By |2021-07-08T21:45:50-07:00July 20th, 2011|Lana's Journal, Tay Sachs|377 Comments