down syndrome & the undomesticated diva

the story of an amazing boy with down syndrome

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A Look Back at Life with Special Needs

After Harrison’s arrival, our world has transformed in amazing ways. I couldn’t imagine my life without Harrison Coleman Gilliam, my 11-month-old son with special needs. Harrison has Down Syndrome.

At 36-years-old, a new baby was even more of an adjustment for me as a mother. I didn’t have the energy I had back in my 20s for the three-hour feedings, endless changing and late-night crying (please note, I took advantage of that energy when I had it — it was just spent at late-night karaoke in Hoboken or watching sunsets with sangria at Luna Park in NYC’s Union Square). I cut back to part time at work (a very difficult decision because I love my job) and started taking Harrison to physical, occupational and speech therapies on a weekly basis.  Paired with the endless doctor’s appointments to ensure my little man is healthy, we’ve spent a lot of time catching up on old magazine articles in waiting rooms. However, I wouldn’t trade my new life for the world.

Harrison has a smile that captivates. His laugh is contagious. He can light up a room with his sparkling brushfield-spotted eyes. He may take a little more time to reach milestones, but when he reaches a goal, it is all-the-more exciting. Because of Harrison, I have a new outlook on life. I’m no longer racing to reach the finish line, I’m taking each day as at it comes and learning to love the little things. Harrison’s heart of gold has taught me that it is ok to finish with the silver or the bronze. First place doesn’t always mean first-rate, and best isn’t always better than the rest.

I have always found that being open and honest encourages others to understand me. While it isn’t always easy to share my deepest feelings and vulnerabilities, it is the only way we, as people, can accept each other and our differences, no matter what they might be.

I introduced this blog to my Facebook friends tonight, and I am amazed by the response. I hope downsyndromeandtheundomesticateddiva.com can help all of us overcome our differences — no matter what they are — and remember that down deep, we are all the same.

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Happy Holidays from Harrison, Herbie’s twin 😉

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Hospital Visit: Petechiae

After a 103.8 fever, Harrison took a trip to the pediatrician. Because of petechiae, the doctor sent us to the ER for bloodwork. While Harrison’s labs all came back normal, we have been admitted to the hospital for observation.

Apparently, petechiae can happen to anyone and are not related to Harrison’s Down syndrome. His doctors said Harrison’s genetic condition does not affect his immunity. They reminded me that as winter sets in, viruses are rampant and because petechiae can signify serious medical conditions, it is best to see a doctor if your child suffers from bleeding of the capillaries.

*I am not a doctor and am just reporting on my experiences with my son’s Down syndrome. This blog does not contain medical advice and should not be used to diagnosis symptoms.

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Books About Down Syndrome: Expecting Adam

Expecting Adam is a wonderful story of acceptance and love. While I didn’t have the supernatural experiences that Beck did during pregnancy, Expecting Adam is one of the great books about down syndrome that taught me about my baby’s diagnosis. A must read for any new mother or father who is seeking more information about down syndrome.

http://www.amazon.com/Expecting-Adam-Story-Rebirth-Everyday/dp/0307719642

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New Orleans Bread Pudding

This recipe is adapted from Pascal’s Manale in New Orleans. I have no idea who Pascal is or what he is doing with a manale, but I know this bread pudding recipe is to die for. Click here for the original recipe. By the way, if you follow the link, Be prepared to feed all of your neighbors’ children if you don’t cut the recipe down.

I haven’t let Harrison try this bread pudding yet, but I know he will love it. Next time I make it, he will get to have a bite.

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What you need to make it:

2 cups granulated sugar
5 large eggs, beaten
2 cups milk
2 teaspoons vanilla extract
3 loaves of bread from the bakery section
1/4 cup (1/2 stick) butter, softened

Possible additions: raisins or white chocolate chips

For the sauce:
1 cup granulated sugar
1/2 cup (1 stick) butter, melted
1 egg, beaten
2 teaspoons vanilla extract
1/4 cup brandy

How you make it:

Preheat the oven to 350 degrees F. Grab a 13 by 9 by 2-inch pan.

Cube the bread and place in a bowl. Pour the milk and let the milk seep into every inch of the bread. I let it sit a few hour in the refrigerator.

Add the other ingredients and mix by hand until all the bread is thoroughly coated in your amazing mixture. If you want to add raisins or white chocolate chips, do it now. Pour into a pan and put in the oven for 45 minutes to one hour. Magic will happen soon!

For the sauce:

Mix together the granulated sugar, butter, egg, and vanilla in a saucepan over medium heat. Stir together until the sugar is melted. Add the brandy, stirring well. Pour over bread pudding. Serve warm or cold.

Oh Diva, Don't Do It! Don’t serve the sauce without cooking it down. Tried that once…won’t do it again. Oh, and sorry for all the midnight calls. I really did have something funny to tell you. I just couldn’t remember what it was after you answered.

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