About Me

My photo
For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Sunday, July 25, 2010

Post 6 - A Loss for Words

Let me start off by saying that this is my third attempt in the last three nights to post something on the blog. It's not that I didn't have anything to say, it's just that I couldn't find a coherent way to say what I wanted to say. Probably because it has not been one of my better weeks. Throughout the week I have been feeling very fatigued and weaker than usual. Additionally, I was having a lot of difficulty with concentration and motivation. Now all of these symptoms are not unusual, however, something just felt different this time. I have to admit, it had me a little down. The low point was definitely Thursday night. Earlier that day I had taken Tracey to the airport so that she could catch a flight for Minneapolis. Every two years, the Parents of Galactosemic Children, Inc, hold a conference, and this year it was taking place in Minnesota. Tracey would be going from Thursday until Sunday with my sister, Cari (thanks, Cari for going in my place). For those of you that don't know, Sydney was diagnosed with Galactosemia shortly after birth. Galactosemia is a condition in which the body is unable to use (metabolize) the simple sugar galactose. Treatment requires the strict exclusion of lactose/galactose from the diet. This includes all products containing dairy, and/or legumes. Although Galactosemic children are started on diet restriction at birth, there continues to be a high incidence of long-term complications involving speech and language, fine and gross motor skill delays and specific learning disabilities. Thankfully, Sydney continues to do very well!

Without really knowing it, and due to my hindsight being a perfect 20/20, I now realize that I had a lot of anxiety over Tracey's trip. For a short period of time, we contemplated the whole family going but for several reasons decided it was best that Tracey goes and I stay with the kids. We had planned for my mother to come and stay with us to help with the girls. As soon as I got back from the airport on Thursday afternoon I just did not feel right. I had a very unsettling feeling. Later, as my mom took the girls out into the backyard to play, and I watched from the house, I was completely overwhelmed by my current condition. I started to think about what a great weekend, this could have been.

Naturally, being a stay-at-home mom, Tracey has established incredible bonds with both Sydney and Emily. Me, being a full-time work out of the house father, with a physical disability to boot, has always worried about my ability to bond with the children. With Tracey out of the house for three days, this could have been my opportunity to bond with the girls. Before Emily, Sydney and I had a few daddy and daughter moments. I took her on walks; we went to a show, the playground and a couple of other places where it was just the two of us. Except for when Emily was just an infant, I never really had the opportunity to spend any time alone with her and I certainly have never had the opportunity to spend time alone with both Sydney and Emily.

Watching the girls out in the backyard I begin to think of all the things we could have done this weekend had I not had this wretched disease. First I thought how cool it would be a set up the tent in the backyard and have a camp out. Or better yet, because of the heat, I could set the tent up inside the house so we can have a campout inside. I thought of the wonderful tea parties, that we could've been having, or how much fun it would have been to play dress-up (me, playing the handsome prince, of course). I thought about how I could have taken them to a store and spoiled them with all sorts of toys and gifts. How we could have had a weekend with virtually no limitations. Regardless of what we would have been doing, I just wanted to interact with my two girls like a normal person.

For whatever reason, the heat, my depression, my fatigue or my weakness or all the above, my malaise continued throughout the weekend. It was something that I just could not shake. All of a sudden, at approximately 11:25 AM this morning the fog had lifted. What happened at 11:25 AM this morning, you ask? Tracey walked through the door and all of a sudden, we felt like a family again. I was still tired, I was still weak, but now I was fine. I can't put my finger on it, but all of a sudden, things were different. It had nothing to do with my mother being here (I have to admit that I was a little apprehensive about it before hand). In fact, the girls had a great time spending time with their grandmother and I really can't say that my mom was here to help, since she actually did all the work from preparing the meals, to bathing the kids, to walking the dog. I too, enjoyed spending time with my mom, as we got to chat a little bit and spend some time watching TV together. I can't begin to thank her enough for all she did this weekend and all that she has always done for me, but yet, there's a difference between a boy and his mother and a man and his wife.

For me now, there is a little spring in my step, some wind in my sails, and I can think coherently again, or at least I think I can. I'm actually looking forward to going to work tomorrow, and to spending the following week at the shore with Tracey and the girls. Thank you Tracey for being such a great wife and wonderful mother!


  1. Glad to see you found your misplaced words! ;)

  2. You must have done something good to be surrounded by these GREAT ladies- from your mom to Tracey to your beautiful girls :-).