My "Special" Girl

Note: if this article looks familiar, it's because I published the original version four years ago, and you have a good memory. I have updated it to bring it current.

In case you haven't figured it out, the little girl (or shall I say young lady, now) in the pictures above is my daughter Hannah. And also in case you haven't figured it out, she is my pride and joy. That's not to say that I don't love the rest of my family, but she's ... special. Well, that's the nomenclature they use these days, as in "special needs", "special education", or "Special Olympics". But in this case, the original meaning of the word "special" really fits.

We had no idea prior to her birth that Hannah had Down syndrome (DS). In fact, we weren't even sure for the first few weeks after she was born. Hannah was born in Dubai, where we were living at the time. The day after she was born, the doctor told us that he suspected, but was not certain, that she had DS. He explained that she showed some of the physical traits, but not all. For example, typical people have two creases running across the palm of their hands, while there is usually only one crease in DS. Hannah has two creases. Go ahead, look at your hand, I know you want to.

It was hard to tell for sure. So to confirm the doctor's suspicion, a blood sample had to be sent to London for chromosomal analysis. The results weren't known to us for almost three weeks. Needless to say, those were the longest three weeks of our lives, yet also the blurriest in my memory. But I remember clearly receiving the phone call giving us the news that the test was positive for Down syndrome.

We immediately started researching everything we could about DS. While some of the material was useful in providing factual information, it didn't take us long to realize that our daughter was indeed special, and that no printed material was going to prepare us for the journey on which we were about to embark. Fortunately for us, that journey has been amazing, and our guide, a blessing.

Through the years, we came to know just how special Hannah is. It takes a special person to open the eyes and warm the hearts of others around her. It takes a special person to cause others to care more, not only about her, but about everyone affected by someone with special needs.

Today, Hannah is fifteen years old, still surprising us, still being special. We had a bit of a scare early last year, as she was diagnosed with a condition called Moyamoya, in which the arteries feeding the brain did not develop, starving the brain of blood. So she underwent brain surgery on both sides to perform a bypass, re-routing arteries from outside the skull to the brain. She is doing fine now, but had to take it easy for the first year post-op. Of course, now that the first year has passed, we are restricted due to COVID.

She is starting ninth grade this month (high school!), and thanks mostly to her mom, is still mainstreamed in the classroom to a large extent. She will be starting her tenth year as a Girl Scout, again thanks largely to her mom, the troop leader. Between school and Girl Scouts, she has more BFF's than anyone I know. She loves listening to music and "just chilling" (her words) in her room, like most teenagers, and having father-daughter dates on the weekends, unlike most teenagers, which I of course love about her. These days, a father-daughter date is picking up fast food through the drive-thru and eating it in the car in the parking lot - which is actually quite fun, and the food is much better than if you waited to get it home (and if the order is wrong, as it often is, you're still there so they can fix it!)

One of the things that we, as a family, enjoy doing is participating in the annual Buddy Walk. Our team is called "Hannah Halfen Angels", and you can visit our team page by clicking here >> Hannah Halfen Angels. Click on the donate button on the team page if you want to help an organization making a huge difference, and help Hannah be one of the top fundraisers.

The Buddy Walk is the premier advocacy event for Down syndrome in the United States and is the world’s most widely recognized public awareness event for the Down syndrome community.The Buddy Walk has three primary goals: (1) To promote acceptance and inclusion of people with Down syndrome, (2) To locally raise funds for DSAH and nationally for education, research and advocacy programs, and (3) To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice.

Proceeds from the Houston Buddy Walk will benefit Down Syndrome Association of Houston (DSAH), whose mission is to provide lifelong education, support, and resources to individuals with Down syndrome, their families, and the communities they live within. DSAH envisions a society where individuals with Down syndrome are valued, included, and empowered to fulfill their personal goals and aspirations.

Each year, DSAH continues to promote awareness through community outreach programs, monthly support meetings, semi annual educational conferences, and social events for the DS community. DSAH has been a part of the Houston community for over 40 years and has assisted thousands of families by offering support to new parents of babies with DS, assisting parents with challenges related to medical, therapeutic and educational issues, and working with educators and medical professionals. DSAH is committed to improving the lives and opportunities afforded to all persons with Down syndrome.

Thank you for allowing me to share our story. Please remember to check out our Buddy Walk team page for more information about Down syndrome and the opportunity to participate in this great cause.