I am like 99.9% of the parents in this world….I LOVE my kids. I love watching them play sports and participate in school activities and I love hanging out with them (most of the time). I love the chats we have and I love the laughs at the dinner table. I love that they make me a better person. I love teaching them about the world and I love it even more when they teach me a thing or two. They are actually pretty good behavioral wise and both of them show me love and gratitude on a daily basis. I recognize how rare this can be with a 14 year old and a 10 year old and I am very, very grateful. I suck it up and savor every moment. Sometimes to the point of being a little too emotional and a little too sappy. I realize it won’t always be this way and appreciate what I have right now. They are by no means perfect, but I am proud and I recognize how seriously lucky I am to have them in my life.
There are moments I get really hard on them for not wanting to be with Jim more or for getting frustrated with him; just like I do. I don’t praise them enough for when they do show patience and when they are participating in his care. As with most of life’s moments, we see them clearer when they are firmly behind us. It is important to me to learn from these lessons and to keep trying to become a better mom, a better wife, a better person. The end result will save me from my self -destructive ways and from wallowing into a mass of self pity. It is difficult to feel sorry for yourself if you are constantly critical within your own decisions and behaviors. Some say I am too hard on myself, but when I consider the alternative of accepting my situation and letting myself fall to pieces over and over or become less of a person than I should or can be, I am not thrilled with what that person looks like. I would fall into a deeper hole because I would be so disgusted by looking into the mirror and not liking what I saw. I suppose without Jim to keep me in check, I am forced to do it myself and this is the way I can. I sometimes rely on friends and family, but they try to be too delicate with me for fear of making things worse or just because they want to protect me more than hurt me. Yes, it would hurt to hear something awful about myself, but in the end game, it would be better for me, Jim and the kids.
I often forget how different their childhood is from mine. I remember growing up being terrified for a while that my parents would die; either from cancer, a car wreck or something that would take them away from me. I can vividly remember asking them when they were going to die and begging them to never leave me. I still feel that way. I think most kids go through this phase at some point. Fortunately, those fears were never realized and I am blessed to still have my parents in my life, helping me as much now as they did when I was living in their home.
On the contrary: Frances and Brad have basically always known that their Dad will not be around forever. They don’t complain about it. Actually, they never mention it. I suppose it is just their “normal”. When we started realizing something was terribly wrong with Jim, Brad was just 5. He doesn’t remember anything different. He doesn’t have a carefree life without the burden of Alzheimer’s Disease. Ever. It is as engrained in him as eating fruits and vegetables or washing your hands before a meal. That is all he has known. Although I live in this family with them, their perspectives and thoughts are so different from mine. Their expectations differ and their reality is now including a disease that not only took their grandmother and uncle from them, but is taking their father too. And they are both fully aware, it could possibly take them or their sibling.They are extremely close for children this age and I am sometimes just awestruck at this. Frances has been gone during the week recently and Brad asked the first week she was gone if we could pick her up early, telling me “it just isn’t as much fun when she isn’t around.” And when I picked her up and brought her home, the first thing she wanted to do was see Brad. I think part of the reason they are so in tune to each other is their common woe of Alzheimer’s Disease and losing their father in this manner. What must that be like? How would I feel? I know how I feel with it being my husband and possibly one day my child, but what is it really like to grow up with this horrible mess surrounding you constantly? Is it like living in a war torn country? You just get used to it and learn to adapt?
Frances remembers Jim from before he was showing signs, but her personality allows her to be very practical and compartmentalize on a regular basis. I worry one day, when she is older, she will look back and have regrets. I worry I am not doing enough for either of them now to make it easier and more bearable later. I strive to give them as normal a childhood as possible: no favors from teachers or coaches, no special treatment from schools or organizations they are applying to. There are two rules that I will not budge on: not taking advantage of Jim and not manipulating our situation to their advantage. I feel strongly that it will only hurt them in the long run if they rely on his impending death to get away with things most kids their age try or if they are treated with kid gloves.
There are moments I think way too much about all of this, and I want/need someone to talk to….my husband would be my first logical choice, but as you know, it isn’t a choice that is available. So I sit, by myself, trying to single handily determine the best way to parent two children who are not only losing their father a fraction at a time, but who might eventually sit across from a doctor listening to the same horrible diagnosis.
I am sometimes so completely stunned, I am not able to function at my normal capacity. It just can’t happen. I can’t think straight and I can’t decide what to do about anything. I can’t figure out what to fix for dinner or where some papers should go or how to plan our lives financially. The stress and the burden of trying to stay “normal” through a very, very long illness and subsequential grieving process can make a person not only change their personality, it changes priorities, desires, rationality and common sense.
My first and most important goal is to raise two, healthy, children who are not completely scarred by a childhood overshadowed by death. If I can fulfill this objective, I will have been a good mom. I won’t know until years from now. All I can do in the meantime is the best I can, when I can. And then I need to accept I won’t always be my best. I will still be me, but I will just be a lesser version for a time.