You know you parent a special needs child when ...

You compare ER's instead of grocery stores.

You compare your child's oxygen saturations.

You view toys as "therapy."

You don't take a new day for granted.

You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.

The clothes your infant wore last fall still fit her this fall.

Everything is an educational opportunity instead of just having plain old fun.

You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT). You also don't mind if your child goes through the house tooting a tinwhistle.

You fired at least 3 pediatricians and can teach your family doctor a thing or two.

You can name at least 3 genes on chromosome 21.

You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!

You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!

You get irritated when friends with healthy kids complain about a sleepless night when they're child is ill.

Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.

You keep your appointment at the specialist even though a winter blizzard is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!

Fighting and wrestling with siblings is PT. Speech therapy occurs in the tub with a sibling.

When potty training is complete, you take out a full-page public notice in the Washington Post.

When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.

You keep a daily growth chart.

You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.

You phone all your friends when your child sits up for the first time, at age two.

With a big smile on your face you tell a stranger that your four-year-old just started walking last week.

Her medical file is 25 inches and growing.

You have a new belief...that angels live with us on earth.

Our first little lovebug, Anna

On January 27, 2004, Jason and I were blessed with a beautiful little girl. Everything seemed as perfect as I hoped it would be. Most people don't prepare themselves for the possibility that medical issues can sneak into the picture, but that is what happened with us. Anna is perfect all right, but she did come to us with a very serious medical condition called mitochondrial disease.

When she was five weeks old she began having small seizures and thus the long, arduous process of tests, tests and more tests began and lasted for several months. We visited a pediatric neurologist who steered us to a geneticist in the Atlanta area. This geneticist, Dr. Fran Kendall, wanted Anna to have a muscle biopsy as a final attempt to figure out what was causing the seizures. When Anna was 8 months old the biopsy results came back to show that Anna has mitochondrial disease, complex 1. In short, the mitochondria in her body don't produce enough energy for everything to work as it should. Depending on the location of the defect in a specific person's mitochondria, the symptoms can vary widely. Researchers are finding out more about mitochondrial disease including the likelihood that it's related to other major diseases such as Parkinson's, Alzheimer's and even autism. For more information on this disease go to www.umdf.org.

In Anna's case, her defect has resulted in seizures, developmental delays and sensory issues. We're fortunate that overall she's been medically stable and she keeps progressing. She's a very happy little girl and she loves going to pool therapy and music therapy. The seizures are difficult to handle but we do the best we can.

Many times it's difficult to juggle the various therapies and the fact that Anna's prognosis is unknown is sometimes hard for me. But Anna has also bestowed unexpected gifts upon us. It's easy to love the child who sails and excels, but for the child who struggles the depth and quality of love ends up being breathtaking. Anna has stretched me the furthest and taught me the most. She has taught me about bravery and perseverance, strength, grace and humility. When I look at her I see the courage of a fighter and the heart of a hero.