My Perfect Child

I'd heard this a few years ago, but was reminded of it again today when it was read at Eric's funeral.

As my children were born,
I wanted them to be perfect.

When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.

As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.

As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect!!

Funeral

Tomorrow we're attending the funeral of Dean's cousin's son. I never met 18 year old Eric, but I know I will spend this entire funeral crying. (obituary here)

Eric was severely disabled, and required a lot of care.

The day Eric died, as soon as Dean told me I was in tears for his mother. Dean was a little surprised that I was so upset. After all, I'd never met Eric, and have only met his mom once. So I tried to explain to him what I was feeling.

A few years ago Angela had a classmate named Spencer who was 8 years. A big kid who towered over 5 year old Angela, but Angela was his favorite. She could get him to do anything! At 8 years old Spencer functioned at about a 6 month level, was the height of a 12 year old, and weighed about 150 lbs. But he had one saving grace, and that was he was able to walk, even if it was with a lot of support. It made getting him from point A to point B much easier.

One day at school Spencer was very irritable, kind of whiny. Mid morning he started running a temp so his mom was called. They made the agonizingly slow trip to the car, then headed for home, but on the way he started seizing. Mom reversed course and headed for the hospital just a couple miles down the road. (this was before everyone had cell phones.) But Spencer's heart gave out before they made it there.

At the funeral, when I went to give his mom a hug, she pulled away, hands on my shoulders and looked me in the eye. With tears streaming down her face she asked me, "Now what? What do I do now? For the past 8 1/2 years every waking moment has been spent caring for Spencer. I'm Spencer's mom. I'm not Debbie, I'm Spencer's mom. What do I do now? How will I find my way?"

So tonight, as I figure out what to wear for the funeral of a young man I've never met, I can't help but put myself in the shoes of his mom. Naturally I would be upset if anything happened to ANY of my kids. Angela, though, is different. I practically know every cell in her body. The most I know about my other kids' genetic make-up is that I was their mother, and Kevin was their father. I have seen Angela's internal organs. I have nursed her through almost every ailment known to Down Syndrome. I have spent countless hours helping her to achieve what others take for granted. Although Tyler is back home at the moment, he is self sufficient. Angela is not. I would venture to say that 90% of my being revolves around Angela's care and nuturing.

I am "Angela's Mom".

Over the past year I have started to find "me" again. Just little things here and there. I'm afraid of the "what if" with Angela. I know that if something happens to her, I'll be lost for a long time. I guess it's kind of inevitable when we have kids who require a bit more care.

If you could, please remember Eric's parents in your prayers, especially his mom.

Heaven Gained Another Angel

Heaven gained another angel last night. Cody Lee is finally free of pain, free of sickness, and is dancing in the arms of Jesus. Please say a prayer for his family as they say goodbye to their boy. 12 years is too soon to say goodbye to a child.

For the Boy

A valiant fight
That's what you've shown the world
that laughter is important
no matter how sick you are
or how much pain you're feeling.

But how do you say goodbye to your mother,
Your brother and sisters
Your father.
How do you tell them that 12 years
wasn't long enough?
That you want to be out
playing ball with the other boys
not wondering if you'll feel your mother's kisses in the morning.

This is bigger than any boy
and yet you rise to the challenge.
You have fought the fight of a warrior.
You won.
You won your place in God's kingdom!

Close your eyes now
and rest
You see Him waiting for you.
You hear him calling your name.
Don't be afraid
to sleep.

The scariest word in the world

On Monday, a young lady who is very well known in the DS community passed away. Her name is Melissa Riggio, and she is the daughter of Steve and Laura Riggio, (Steve is CEO of Barnes and Noble.) Melissa was 20 years old.

Melissa was a role model for people with Down Syndrome, and for parents of new babies who have DS and needed to see that DS doesn't have to be a bad thing. There was a National Geographic Article written about her, and she was also a singer and song writer. This week our tight-knit community is mourning the loss of this beautiful young woman.


We parents of children who have Down Syndrome learn early on that there is one word that is taboo in our vocabulary. It's the dreaded "L" word.

"L" stands for "Leukemia".

Every parent, regardless of how many chromosomes their child has, is afraid of ever hearing the word cancer used in the same sentence with their child's name. For the average child, the incidence of childhood cancer is approximately 1-2 of every 1o,ooo children.

Unfortunately for children who have Down Syndrome, approximately 1 out of every 100 will develop Leukemia. The good thing is that for some reason, children with Down Syndrome who develop Leukemia have about a 80-85% cure rate.

For every parent of a child who has Down Syndrome, unexplained fevers, painful joints, and weird rashes (petechiae) are always cause for great concern, and they make us run to the doctor for THE blood work necessary to rule out the dreaded "L" word. About 3 years ago I had such a scare with Angela. When I brought her into the pediatrician for the 5th day of an unexplained fever, lethargy, and a few spots of petechiae, I was afraid to say what I really thought it was. I said, "I don't know what's wrong, she's just going downhill really fast. Please tell me what's wrong with her." The pediatrician knew what it was I didn't want to say. "Don't worry...you'll know before you leave here if you're going home or to the oncologist." Angela didn't have Leukemia (instead a low-lying infection from a surgical wound.) but the whole episode scared me to death.

I have a lot of friends who's children HAVE been diagnosed with either ALL ( acute lymphoblastic leukemia ) or AML ( acute myeloid leukemia ). Neither of them is better than the other. If a child develops AML, they will have 6 months of intensive chemo. If a child develops ALL, they go through a THREE YEAR chemo protocol.

Somewhere along the way I was told that it's very rare for a child with DS to develop leukemia past the age of 5. Most are diagnosed between 1-4 years of age. Now that Angela is almost 12, I've pretty much let my fear of the word disappear. However in the past week not only did we loose Melissa at the age of 20, but I've been reminded of a couple other adults with DS who've lost their battles as well. But I know it's not good to live in fear, and in fact, God doesn't want us living in fear. We're to trust him, right?

And so tonight I will hug Angela a little bit longer, and a little bit tighter. Together we'll say a prayer for the Riggio family, and for others who are close to us who's children are battling that dreaded "L" as we speak. (we know several.) If you will, please add them to your prayers as well. In fact, here's a link to our friend John's site. John was diagnosed with ALL in June of 2005, and his family is counting the days until his estimated last day of treatment, August 30, 2008.