July 5, 2010~

Faye B. Emerson writing.  Sorry it has been an awfully long time in writing, but you know how that goes, especially if one has kids, as we do.  We have three:  two daughters, Ellen Michelle (11) and Renate Grace (8), and a son, Nicholas Patrick, who just turned six yesterday, on the fourth.

Our son, Nicholas, has special needs:  he is in a wheelchair, and he cannot walk, talk, see, hear, or do things for himself:  he has a degenerative neurological disease that was heritary on both Trent's and my side of the family.  He was diagnosed with Canavan disease when he was about a year old; he's now six and requires skilled nursing care twenty-four hours a day.

Doctors didn't think he'd live to be four years old.  He's now beaten the odds by two years, which is nothing short of a miracle.

Anyway, yesterday was the Fourth of July.  We spent it at Trent's mother and father's place by the lake, where we had a picnic.  It was wonderful.  Renate and Ellen played on the swings and played with their little brother, and they had the best time.  Nicholas enjoyed the feel of the warm sun's rays on his skin and the breeze ruffling through his thick, brown hair.  He also loved it when we'd tickle him or spin him around like an airplane.  He laughed and laughed; it was so good to see him having fun just like any little boy should do!

They had fireworks across the lake; we had a perfect, unblocked view of the show; however, I felt a stab of remorse for our son because he couldn't see them (let alone, hear them), and it made us feel sad.  I wonder if he even thinks about such things like fireworks, or if he misses hearing/seeing them burst in the nighttims skies.  I am sure he does; I just wish we could read his thoughts!

Before we went to my in-laws' place, we went to the parade.  Again, the niggling feelings of sadness played over and over in my mind, as I watched our son sitting in his wheelchair.  I felt he was being cheated out of life's most simple pleasures because of the disease that he has; it must be horrible having no sense of sight, speech, or hearing.  Instead, our son remains locked in a silent, dark-filled world with no hope of ever emerging!  I just wish we could do more to help him or at least have him be able to hear/speak/see, even if for only an hour or two!

I feel that what Nicholas is experiencing healthwise is Trent's and my fault:  we were the ones who carried the defective gene and passed it on to him.  I don't know why the girls didn't get Canavan's disease; only Nicholas did, and now we must live with its demands day in and day out.  It isn't easy parenting a child like our son!

Well, I am going to go.  The girls want to go swimming, so I will let them.  I will write in here again soon; until later, this is Faye B. Emerson saying so long!  Please continue to keep us in your prayers; pray a cure for Canavan's disease (or any similar conditions) is found soon!  We'd greatly appreciate it; we want nothing more than our son to leap out of his wheelchair and be able to see, speak, and even hear!  That would be a dream come true !  Thanks in advance!

Take care!

~Love, your friend in Tennessee, Faye B.  :)