It finally hit me
While I sat by Shelbie's bedside on Thursday, once she fell asleep from the loading dose of pain meds they gave her to control the side effects, I did some thinking. Deep thinking.
When I was engaged, I read lots of books on marriage. I wanted to be well prepared for what I was committing to. When I got pregnant, I bought the bible for pregant women, What to expect when you're expecting. I'm sure if you have kids, you know the book too. When the first baby was born I bought the sequel, What to expect the first year. I think I highlighted every page. I read that book faithfully along with plenty of other companion books. When they got a little older, I read books on teaching kids value, teaching kids to work, teaching kid the birds and the bees. When my first experience with the misguided, brain malfunction teenage years began, I read books on raising teenagers. When those tactics failed, I read books on the biggest mistakes parents make. When diseases started cropping up, guess what I did? I read. I read everything I could get my hands on.
The last few years, there's been a shift. Things have gotten harder. Health problems are getting harder to control and new one's are cropping up like dandelions. This is going to sound really dumb but in the last month or two, I am realizing that the problems the kids have are not going away. They are not going to get better. I can't keep saying things like, 'When Shelbie is better....'
In the back of my mind, I really believed that even though we have these bad things, they somehow weren't going to affect my kids like all the other kids we know. We would be the exception, the mild case, life would never get any harder than it was 8 years ago and as long as I could manage the problems at that level, we would always be okay. Call it denial, call it wishful thinking, call it faith, call it hope. Doesn't matter what you call it, it wasn't accurate. It was a great and creative way to get through the hard times, protect my brain from emotional overload but it is getting less and less effective as time marches on and things get more complex. I short changed myself with that concept I clung to because now that things are much harder, I think I should be able to manage as well as I did in the early stages and I am not very forgiving of myself when I can't make it all work out. I don't want to go all doom and gloom on our situation because that's not accurate either.
So, it hit me...the biggest transition I have ever faced in life, bigger than marriage, pregnancy, babies or teens, living with chronically ill children, and I have never once picked up a book, read an article or sought any kind of help to understand how to navigate through this! We have this standard for ourselves of trying to 'look' normal to the world. I make excuses for why my kids don't play sports or can't do the same things other kids can or why, at 1:00 in the afternoon Shelbie is still not out of bed. I feel dumb when people find out I let them eat whatever they want, whenever they want even if it means I am making them a meal at 11:00pm.
It's time to accept that this is a foreign land and I don't know what I'm doing. I am going to be real...not Polly Anna, pretending like everything is just fine. I have already started collecting books and articles on dealing with the emotions of caregiving and chronic illness. It has been enlightening, heart warming. I'm really not going crazy! I read that and jumped for joy. Ahlzeheimers is not setting in early and I haven't developed a bad case of ADD. It's the stress of all this that makes me feel like I'm falling apart most of the time. Do you know how happy that made me? There are enough people feeling the same way I am that they had enough material to plan big research projects and write books about the tired, cranky, caregiver....ya know...not really but that's what I feel like.
So, this new adventure begins. Learning how to be a different kind of mother. Learning to be more accepting, more loving towards a disease that is stealing away my time, quality time with my kids. Learning to love this life. Rejoicing on the good days and being humbled and grateful on the bad days. I am determined to figure this out. It has been and will continue to be an intense period of growth and big dose of reality.
When I was engaged, I read lots of books on marriage. I wanted to be well prepared for what I was committing to. When I got pregnant, I bought the bible for pregant women, What to expect when you're expecting. I'm sure if you have kids, you know the book too. When the first baby was born I bought the sequel, What to expect the first year. I think I highlighted every page. I read that book faithfully along with plenty of other companion books. When they got a little older, I read books on teaching kids value, teaching kids to work, teaching kid the birds and the bees. When my first experience with the misguided, brain malfunction teenage years began, I read books on raising teenagers. When those tactics failed, I read books on the biggest mistakes parents make. When diseases started cropping up, guess what I did? I read. I read everything I could get my hands on.
The last few years, there's been a shift. Things have gotten harder. Health problems are getting harder to control and new one's are cropping up like dandelions. This is going to sound really dumb but in the last month or two, I am realizing that the problems the kids have are not going away. They are not going to get better. I can't keep saying things like, 'When Shelbie is better....'
In the back of my mind, I really believed that even though we have these bad things, they somehow weren't going to affect my kids like all the other kids we know. We would be the exception, the mild case, life would never get any harder than it was 8 years ago and as long as I could manage the problems at that level, we would always be okay. Call it denial, call it wishful thinking, call it faith, call it hope. Doesn't matter what you call it, it wasn't accurate. It was a great and creative way to get through the hard times, protect my brain from emotional overload but it is getting less and less effective as time marches on and things get more complex. I short changed myself with that concept I clung to because now that things are much harder, I think I should be able to manage as well as I did in the early stages and I am not very forgiving of myself when I can't make it all work out. I don't want to go all doom and gloom on our situation because that's not accurate either.
So, it hit me...the biggest transition I have ever faced in life, bigger than marriage, pregnancy, babies or teens, living with chronically ill children, and I have never once picked up a book, read an article or sought any kind of help to understand how to navigate through this! We have this standard for ourselves of trying to 'look' normal to the world. I make excuses for why my kids don't play sports or can't do the same things other kids can or why, at 1:00 in the afternoon Shelbie is still not out of bed. I feel dumb when people find out I let them eat whatever they want, whenever they want even if it means I am making them a meal at 11:00pm.
It's time to accept that this is a foreign land and I don't know what I'm doing. I am going to be real...not Polly Anna, pretending like everything is just fine. I have already started collecting books and articles on dealing with the emotions of caregiving and chronic illness. It has been enlightening, heart warming. I'm really not going crazy! I read that and jumped for joy. Ahlzeheimers is not setting in early and I haven't developed a bad case of ADD. It's the stress of all this that makes me feel like I'm falling apart most of the time. Do you know how happy that made me? There are enough people feeling the same way I am that they had enough material to plan big research projects and write books about the tired, cranky, caregiver....ya know...not really but that's what I feel like.
So, this new adventure begins. Learning how to be a different kind of mother. Learning to be more accepting, more loving towards a disease that is stealing away my time, quality time with my kids. Learning to love this life. Rejoicing on the good days and being humbled and grateful on the bad days. I am determined to figure this out. It has been and will continue to be an intense period of growth and big dose of reality.
Kathy, I love and admire you. Just wanted to let you know that even though you feel like you are falling apart, you are loved. I know you do not want to go into detail about things with every person you see on a daily basis and it is okay to paint on a happy face. It helps you get through the next few minutes. But I want you to know I think of you often. :)
ReplyDeleteMy guess is that you haven't picked up a book because you are the one who needs to write the book! You seem to have figured out how to deal with this hards stuff pretty well. The fact that you are getting out of bed every day and making a meal is pretty impressive to me. Keep going! You inspire me.
ReplyDeleteI ditto Sonja. You could write the book! I'm glad you're reading about people who are going through some of the same things you are going through. I bet that helps a lot. I do think you are amazing.
ReplyDelete