Not quite the same
Sometimes, I'm quite content just living in my little messed up world, venturing only to the grocery store and any other necessary places. I had no idea, 15 some odd years ago that life with Shwachman Diamond Syndrome would get as hard as it has. Not just the progression of the disease but I was unprepared for the emotional, psychological things it does to you, to me as the caregiver.
I guess I thought it would be something like this; the doctor says, "Your kids have Shwachman Diamond" and I think wow, okay. I spend the next month or two absorbing the bad news but then life takes on this new sense of normal and I think, this isn't so bad, I can deal with this. The medications are organized and dispensed on time, we have the hand washing and germ-o-phobic protocol down and things are going well. They get sick, I fix them and we are fine.
Back then, when they were little, I always thought everything would just stay the same. Theoretically, I knew it was a progressing disease but that was something that happened to the 'other' kids, not mine and even still, I just always imagined that I would handle it like I always had.
It's nothing like that. I'm a little disappointed. In fact, this week I am a lot disappointed. Disappointed in the disease for being so mean and unpredictable, disappointed in the people who were suppose to stick around and help me; friends who got sick of me being busy taking care of sick kids and just kind of quit asking how things were, carried on with their own lives, their happy healthy kids, trips to fun places, days at home filled with mom things, husbands who work and take care of them, who shoulder the load and hugs are not in short supply. Disappointed in marriage, the whole 'for better or worse, sickness and health' clause, apparently, the fine print was just too fine. All around me, people have bailed out emotionally. Sure, I still get the friendly conversations with caring undertones but at the end of the day, it's just me and this really crazy world I find myself in and I watch from behind this wall, the normal lives of people carrying on and it feels so weird and lonely.
I had a friend call at the most inopportune time this week when I was having a really hard day and she said I didn't sound good. She asked me what was wrong and I said, "I'm tired."
"You always say your tired."
"Ya, because I am." I just knew it would be impossible to make my feelings very clear so I left it at that and got on to more important things like how much laundry she has to do.
I realized once again, that I do not fit neatly into this world and I'm kind of disappointed. I'm tired and I'm disappointed. Nothing is the way I thought it would be.
I guess I thought it would be something like this; the doctor says, "Your kids have Shwachman Diamond" and I think wow, okay. I spend the next month or two absorbing the bad news but then life takes on this new sense of normal and I think, this isn't so bad, I can deal with this. The medications are organized and dispensed on time, we have the hand washing and germ-o-phobic protocol down and things are going well. They get sick, I fix them and we are fine.
Back then, when they were little, I always thought everything would just stay the same. Theoretically, I knew it was a progressing disease but that was something that happened to the 'other' kids, not mine and even still, I just always imagined that I would handle it like I always had.
It's nothing like that. I'm a little disappointed. In fact, this week I am a lot disappointed. Disappointed in the disease for being so mean and unpredictable, disappointed in the people who were suppose to stick around and help me; friends who got sick of me being busy taking care of sick kids and just kind of quit asking how things were, carried on with their own lives, their happy healthy kids, trips to fun places, days at home filled with mom things, husbands who work and take care of them, who shoulder the load and hugs are not in short supply. Disappointed in marriage, the whole 'for better or worse, sickness and health' clause, apparently, the fine print was just too fine. All around me, people have bailed out emotionally. Sure, I still get the friendly conversations with caring undertones but at the end of the day, it's just me and this really crazy world I find myself in and I watch from behind this wall, the normal lives of people carrying on and it feels so weird and lonely.
I had a friend call at the most inopportune time this week when I was having a really hard day and she said I didn't sound good. She asked me what was wrong and I said, "I'm tired."
"You always say your tired."
"Ya, because I am." I just knew it would be impossible to make my feelings very clear so I left it at that and got on to more important things like how much laundry she has to do.
I realized once again, that I do not fit neatly into this world and I'm kind of disappointed. I'm tired and I'm disappointed. Nothing is the way I thought it would be.
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ReplyDeleteWow, that was a little harsh anonymous. Kathy has had to deal with a lot and the fact that she doesn't give up says a lot! This is her blog and if it helps for her to vent than that is just fine. I find her blogs very refreshing as she is honest about life and her struggles. Like Tanya said it is easy to get disappointed because people only write and share the good things in their lives.
Deleteyep. life sucks. ha, it really does though. Everyone has something to deal with, some have harder things than others. I was actually talking with a friend the other day about this, she's struggling with finances and depression, I think it's easy to get dissapointed with life when Facebook and blogs, people only post the good stuff and make their life look like the most wonderful life and nothing is ever wrong. it's good to get feelings out and talk about them (even though this is something I struggle with, I hate talking about my own feelings) if you ever need to talk call me, I don't know how to give advice, but I can listen and give you a hug afterwards.
ReplyDeleteYour awesome Kathy, I just read your other blog before this when you were saying how awesome your kids are, They learn that from the examples of the awesome parent. I found a quote on Pinterest a few days ago that said "What screws us up most in life is the picture in our head of how it is supposed to be" isn't that the truth! We all think up this wonderful life and it never happens that way. but we have to live with what we're given and have faith even though that may be hard sometimes.
Dear Kat, I stumbled across your blog on accident..I want to tell you just how deep your story moves me, and how it touches my heart, but I can't seem to find words that aren't totally cheesy. I have been reading for a few hours now, and all I keep thinking is how amazing you and your children are, and the enormous amount of strength within you all..WOW!! You mention "your little messed up world", and it made me open my eyes that much more..You are living in a world of constant uncertainty, one step forward, then suddenly two steps back..I noticed you never take a day, or even a moment for granted. You are tired, but you keep on fighting...You take the good along with the bad and the ugly. You still have faith when others would have given up long ago. Living one day as you, Shelbie, Spencer or Sam would be impossible for most people, yet you all find the courage to do this everyday, and continue to support one another. Your world isn't little, it's gigantic..as for the "messed up" part, (or your "burdens" as anonymous puts it) do you know anyone else who can do what you do, love like you love, and give what you give to your family? Nope. Didn't think so. You know there will be times you find yourself disappointed with friends or family you thought you could count on..reach out to those that offer support, vent in your blog as needed, don't hold a grudge, and remind yourself disappointment is a feeling that will come and go..just like people or friends do in your life. Thank you so much for sharing, and for helping me remember how small my problems really are. I am a 36 year old single mom with two healthy boys..how selfish and silly I have been, stressing over little things in life that don't even matter!
ReplyDeleteThank you Angela! What sweet words...stick around and you will see just what a big bowl of crazy we are! ;) There's never a dull moment for sure and some days are better than others and sometimes I complain a lot but the truth is, I wouldn't change our life for anything, I have learned so much through it all and met some super awesome people! Thanks again!
DeleteI also stumbled here through a google search.
ReplyDeleteI have multiple sclerosis. I am 34 years old. My husband was diagnosed with kidney disease.
I have two daughter ages 5 and 11.
We lost all of our friends. No one around us seems to understand what it means to be sick. Really sick. I think they assume it's like having a cold ?
The only places we go are to doctors and the grocery store.
Once you have to deal with a illness you really laugh at the stupid stuff other people worry themselves over.
Our worry is will we live to see tomorrow ?
At times it's hard to think positive.
I think it's human nature to just adapt.
What gets me through the day when I start feeling depressed... some where someone is going through way worse than I am. Then I suck it up and live on.
I am going to continue reading your blog and I will follow your family's journey.
I wish you all the best. You and your family will be in my thoughts every day.
{you have a friend in PA}