A day in the life of….

While this is a story about Theo, remember that we all have our Theo. As we celebrate Down syndrome Acceptance Month, your Theo is just another beautiful child, teen, or adult. Not a child with Down syndrome, but a vibrant person, an individual and nothing less!

[ a day in the life of theo neff ]

Meet Theo Neff. Theo is two years old and was hands down the easiest 2-year old to make smile in all my years photographing little ones. In fact, there was no “making him” smile. He just smiles. And he smiles almost all the time. Theo’s parents welcomed me into their home this morning, and after a quick tour, presented me with fresh coffee and cinnamon buns, for which I am eternally grateful.

Theo’s Mom, Jill, is a teacher at my daughter’s preschool. Jill is amazing. She teaches pre-K all day (which is alone enough to make her amazing, right?) But she and her husband Doug are also raising Theo, a special needs child, and they are doing a brilliant job doing so. The more I have gotten to know Jill, the more I know how she feels about Down Syndrome – that it has been a blessing in her life.

When I asked Jill when she and her husband learned of Theo’s diagnosis, she shared with me a story she recently wrote. (Doug and Jill did not learn of Theo’s diagnosis until after he was born.) Here are some excerpts from her story:

“On a Tuesday night while eating pistachio gelato my water broke. The nurse said to come to the hospital right away. The baby would be coming just a week early. The next morning I was having contractions. Every time I had a contraction the baby’s heart rate went down. They prompted me to do a c-section but said that it was not an emergency c-section. Then, Theo was born!

It was a great experience and the team was extremely good. Why wouldn’t it be? I had a fantastic pregnancy. In fact, I ran all the way up to eight and a half months. Theo had just a little jaundice but they wanted to keep him in the hospital until Sunday. I remember a doctor coming in to tell me that I could stay until Sunday, too. I thought, how kind of him.

On Friday a pediatrician came in to tell me that one of the nurses had made a reference that Theo might have Down Syndrome. He asked if they could run some blood work. I said, “Of course.”

That night, my sweet husband was bringing me take-out for dinner and some bubbles to drink in celebration of Theo. I remember waiting for him and thinking, how am I going to tell him that our baby might have Down Syndrome? When he arrived I told him what the pediatrician had said. To this day I cannot remember my husband’s response, but I know that I felt safe and loved.

We took Theo home on Sunday. As I was unpacking our suitcase I found a note tucked in one of Theo’s blankets. It was from one of the nurses. The words were so kind, she was thanking us for being such good patients. I felt lucky to have connected with her and that Theo had made such an sweet impression.

Wednesday came and we were on our way to Theo’s first week check up at the pediatrician’s office. I looked at Theo in the car and then at my husband and asked, “Shouldn’t I know if my baby has Down Syndrome? I must be a terrible mom if I don’t know.” My sweet husband reassured me that I wasn’t.

At the end of Theo’s check up, Dr. Singleton said, “He looks great and everything looks good.” We smiled and then he went on to say, “Well, you know they wanted to run some tests to see if Theo had Down Syndrome or not.” We both nodded. Dr. Singleton said, “He does. Theo has Down Syndrome.”

Instantly, there was a shooting pain and it quietly went up my back. I am quite certain that I stopped breathing, too. Catching my breath, I whispered to my husband, “Please take Theo, please take him!” I was so afraid that I was going to drop him from the shock and numbness I felt. I remember looking over at my husband and watching as he lifted his eyes from the ground and spoke, “What do we do now, Dr. Singleton?”

“Treat Theo like Theo. Let him be Theo,” said Dr. Singleton.

We got in our car and cried really hard. I’ve never seen my husband sob. He rested his head on the steering wheel and cried. We sobbed, not because we were disappointed in our new beautiful son but because of the fear we felt of the unknown, and we also cried for Theo. That day we made a promise to never cry like that again.

Of course, there have been and will always be those moments that sneak up on you and water your eyes. You might see something in the park or at a school that pulls your heart strings. You simply just want the best for your child, too.

One thing I will always be SO grateful for is that we had a very special pediatrician. He said the most wonderful thing that he could have ever possibly said to us; “Treat Theo like Theo.” What he said that day created an upbeat and positive path for us.

That day when we took our son home we took “Theo” home, not a Down Syndrome baby.”

If you have been following my blog, you know by now that I will occasionally hold these “day in the life” sessions. My goal is to raise awareness to a local cause or charity, one that I usually feel strongly about on a personal level. Today I want to talk to you about GiGi’s Playhouse.

GiGi’s Playhouse is a one-of-a-kind achievement center for individuals with Down syndrome, their families, and the community. GiGi’s Playhouse offers more than 25 therapeutic and educational programs that advance literacy, math skills, motor skills and more; all of which are free of charge.

Did you hear that? I said all of which are FREE OF CHARGE!

I hope that you will consider making a donation to Gigi’s Playhouse Atlanta so they can continue to provide these resources to those in our community who need them most.

Please click here to donate. And thank you! Remember, every dollar counts.