People have told us how strong we are or how the he and I are holding up with what is going on. I am not sure I see it that way but hey, if you think so let’s go with that. I don’t so much see us as being strong as us surviving. That’s what you are really seeing, this is what survival mode looks like from the outside looking in. We make jokes, we use terms like, “it is what it is” or “nothing we can do” and we smile or laugh. Yes, we get up every morning and I go to work, the Big He does morning truck pool before settling in and puttering around the house and the little he heads off to school.
What you don’t see is the struggle to get up and get around every morning. Some days are harder than others. Most days, I have to force myself out of bed, it would be so much easier to stay in bed with the room dark, snuggled next to the Big He and pretend that we are not living an Alpha Lima Sierra life. Facing the day and staying focused is hard. I can’t speak for the Big He, but for me not only is it hard to stay focused, it is so exhausting. You just don’t realize how much energy it takes to do simple things. Another thing that I have found is that my brain has turned to mush. I am not kidding, I have lost IQ points since the diagnosis. Simple words escape me when I am talking. This is happening at a time when I need to keep my wits about me. There are times that I will be talking and then whoosh the thought is gone or I draw a blank trying to talk. While at home this is not so much a problem since the Big He and I can pretty much communicate with looks and gestors (the benefit of being married for 26 years) and the little he being the teenage boy he is, doesn’t listen to me to begin with, but outside the home it becomes a problem. Again, some days are better than others when it comes to being able to concentrate. We take the good and we take the bad you could say.
Another thing is the level of stress Alpha Lima Sierra causes. This probably explains the lost IQ points. I know we all have our challenges and stress in our life, but looking back at our life before diagnosis, for me anyway, that daily stress was not even in the same league as what our family is under now. It is all a matter of perspective I guess. I can tell you that what we face daily are the challenges of the disease and knowing for the most part, each day is as healthy as the Big He will be. Let that sink in for just a second. Every day forward is another day that he progresses. I am trying to change my attitude with this. There is a guy in my area (a badass name Jay) that also has Alpha Lima Sierra and he talks in terms of when he is cured or when he is better. Again, some days I am better at this than others. Some days it is easy to talk about our future…mine and the Big He’s when a cure is found and he is better. Some days, not so much. The days when we are discussing things like upcoming procedures, caregivers, Wills, Advanced Directives are the days it is hard. These are being done not for an “if” but for a “when”. These are the days it takes extra energy to make it through and as many know, our method to survival is sometimes with humor, probably sick humor to most, but humor to us.
So we take the good and we take the bad, we take them both and there you have…The Facts of an [Alpha Lima Sierra] Life.
All my love,
The Big He’s update:
The Big He is progressing and now days he uses his track chair more than he doesn’t. The Trilogy is like his blankie, it goes with him everywhere he is going to nap or sleep. He tires much easier now. He is still talking and eating which is fantastic but his handwriting is starting to go. I know some are asking themselves, how would you even know, trust me it is. While he can still talk and eat, we are moving forward with getting a PEG (feeding) tube. We want to do it before his breathing progresses anymore. The construction on the house begins next week. We are having many of the doors widened, modifying the bathroom and bedroom to become more accessible. My car comes home today after being gone about 5 weeks for it to be converted to handle a motorized chair.
The biggest thing we can ask right now is for prayers. Prayers his progression slows, prayers that a cure or management is found and able to get on the market soon so the Big He can take advantage of it.