Our life is often like a never ending game of chutes and
ladders. Remember that game…you land on
a “good” square and you get to climb a ladder, you land on a “bad” square and
you slide down a chute. First one to the top wins.
Except, this game never ends. There are no winners or losers, we are all just playing this game and sometimes we land on good squares and sometimes bad ones.
I like to only talk about the ladders we take. Those days that we climb higher than we thought we would are the ones I like to focus on. But, there are days that we hit those chutes and we hit them hard. We slide down and it is awfully hard to keep rolling that dice. But, we do because, well, because there really isn’t any other choice.
Today is a chute day. It started out as a ladder day, isn’t that cruel, but we are definitely sliding down some chutes.
The bird woke up and was sweet and muppety and glorious. She snuggled and loved on us and smiled and made eye contact and we had such fun conversations. We made up songs and played games and we were climbing up those ladders.
Then lunch happened. She has been a little enamored with beans lately. Beans for every meal. This girl likes her legumes. So I made beans…homemade baked beans with all kinds of wonderful goodness in them. She even helped. We followed my aunt’s recipe last night and we were so excited to eat them today.
Cereal with daddy for a late breakfast, then applesauce, then lunch time. Beans and eggs. I got it, Bird. I scooped up some delicious beans and put them on her plate while I was scrambling her egg. Suddenly beans were everywhere. Beans in my hair. Beans on the counter. Beans on the cabinet doors. Beans in Bird’s hands. She stood facing me and screaming…not any words…just a scream. We were now beyond the point where she could talk and entering the danger zone of aggression. I shut off the stove and physically picked her up, covered in beans, and brought her into another room (away from stoves and things easily thrown.) After laying on top of her (weight calms her down) and softly singing, she was able to let me know that she didn’t want those beans. She wanted HER beans. Just a regular can of pork and beans.
It was a chute.
So I made her her beans and finished her egg. But, wouldn’t you know…she wanted an egg white (they are easier for me to eat and as fate would have it, she loves them too.) And more chutes. And she wanted to go swimming but it was raining and there were more chutes. And it is only 1:30 in the afternoon. Today might be a day full of chutes. We will slide down, down, down. And I may end up in the middle of the floor tonight with my arms wrapped around my legs, crying because of the frustration my girl is experiencing and the knowing that there is nothing I can do to fix it. There are no days with only ladders. None. But, there are days with less chutes. And, while playing this never ending game is not a choice, what I can focus on is. This life of epilepsy and autism and Ehler’s Danlos Syndrome and feeding tubes and medicines and therapies and specialists and medical equipment and dreams deferred is not a choice However, focusing on those ladders, those tiny climbs (and big climbs) are a choice. Today, there are more chutes. Tomorrow there may be more ladders. Either way, I know what I will choose to focus on.
Except, this game never ends. There are no winners or losers, we are all just playing this game and sometimes we land on good squares and sometimes bad ones.
I like to only talk about the ladders we take. Those days that we climb higher than we thought we would are the ones I like to focus on. But, there are days that we hit those chutes and we hit them hard. We slide down and it is awfully hard to keep rolling that dice. But, we do because, well, because there really isn’t any other choice.
Today is a chute day. It started out as a ladder day, isn’t that cruel, but we are definitely sliding down some chutes.
The bird woke up and was sweet and muppety and glorious. She snuggled and loved on us and smiled and made eye contact and we had such fun conversations. We made up songs and played games and we were climbing up those ladders.
Then lunch happened. She has been a little enamored with beans lately. Beans for every meal. This girl likes her legumes. So I made beans…homemade baked beans with all kinds of wonderful goodness in them. She even helped. We followed my aunt’s recipe last night and we were so excited to eat them today.
Cereal with daddy for a late breakfast, then applesauce, then lunch time. Beans and eggs. I got it, Bird. I scooped up some delicious beans and put them on her plate while I was scrambling her egg. Suddenly beans were everywhere. Beans in my hair. Beans on the counter. Beans on the cabinet doors. Beans in Bird’s hands. She stood facing me and screaming…not any words…just a scream. We were now beyond the point where she could talk and entering the danger zone of aggression. I shut off the stove and physically picked her up, covered in beans, and brought her into another room (away from stoves and things easily thrown.) After laying on top of her (weight calms her down) and softly singing, she was able to let me know that she didn’t want those beans. She wanted HER beans. Just a regular can of pork and beans.
It was a chute.
So I made her her beans and finished her egg. But, wouldn’t you know…she wanted an egg white (they are easier for me to eat and as fate would have it, she loves them too.) And more chutes. And she wanted to go swimming but it was raining and there were more chutes. And it is only 1:30 in the afternoon. Today might be a day full of chutes. We will slide down, down, down. And I may end up in the middle of the floor tonight with my arms wrapped around my legs, crying because of the frustration my girl is experiencing and the knowing that there is nothing I can do to fix it. There are no days with only ladders. None. But, there are days with less chutes. And, while playing this never ending game is not a choice, what I can focus on is. This life of epilepsy and autism and Ehler’s Danlos Syndrome and feeding tubes and medicines and therapies and specialists and medical equipment and dreams deferred is not a choice However, focusing on those ladders, those tiny climbs (and big climbs) are a choice. Today, there are more chutes. Tomorrow there may be more ladders. Either way, I know what I will choose to focus on.
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