Music is very important to Nick and often he wakes up singing. Today it was Alabama’s hit “Angels Among Us.” Some of the lyrics are circling my mind long after he had moved onto the next song. “Oh, I believe there are...... Read More
We follow an Irish girl vocal group called the Henry Girls. They sing a poignant ballad called “How Do You Know?” The main question posed by the lyrics is: How can you tell if an event or a situation is good luck or bad luck? ...... Read More
The doctors told us originally that Nick probably wouldn’t ever walk or talk. Yet not only did he learn to do both of these things, he sings. On the way home from church he was singing away and I captured a brief video of him singing...... Read More
The kindness of strangers transformed my day today. I was feeling under the weather today because I couldn’t get my asthma under control. We stayed in the condo most of the day. We were scheduled to attend a luau this evening and I...... Read More
Do you know all 4 verses of our US national anthem? Nick does. Did you know that there were 4 verses? I think that most people in the US don’t. You can look it up online. I find the messages of each verse to be inspiring. Contrary to...... Read More
Some days for Nick are better than others. His capabilities and capacities seem to be variable. When he is having a good day, we encourage him by letting him be as independent as possible in his self-care. Sometimes if we are in a hurry or...... Read More
This past weekend, Nick had a bit of a cold. I was so grateful that he had learned to blow his nose. He was 13 then. Back in the summer of 1993, (that sounds like the beginning of a song!) we took an epic trip to Ireland with our extended...... Read More
We have all had those days. They start out great, amazing in fact. And then somewhere in the middle, a crisis rears its ugly head. Sometimes we are caught completely unawares and other times we know “the particular event” is...... Read More
If you ask Nick, today is the best day of the year. It is even better than Christmas or Easter, or anything. It is his birthday. Born in 1979, he is 38 today. Each year, he is so excited as he anticipates the arrival of the 19th of August...... Read More
If you ask my cousin in Ireland how he is doing, the reply often is “Keeping the bright side out.” He explained this to me as when he is under pressure, he finds is easier to smile through the day, while working on keeping his...... Read More
Yesterday Arden and I witnessed another Nick miracle. I took a picture. Over the weekend I had been playing Bananagrams with friends. It is a game where lettered tiles are used to spell words. Nick was struggling to pick up the tiles. We...... Read More
NORD, or the National Organization for Rare Disorders truly is a life-saving organization. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through...... Read More
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