Part of writing about Kreed's journey is of course writing about the inspiring things and what Kreed can accomplish. But it's also writing about the hard times and how we live our life with Kreed. I could be angry. I could be sad. I could blog about how hard this life is or how our life isn't about being shiny happy people. But it's not about us. It's about Kreed, who wasn't born with a choice of how his life would be. How he couldn't speak or be independent. How he won't be able to experience the same things as other 18 year olds and how he will live a life of pain and not be able to speak about it.
Christmas this year was a hard one. Leading up to Christmas Kreed was happy and calm. Christmas Eve it all changed and Kreed raged and was in so much pain I don't even think he knew it was Christmas Eve. He woke up okay at first on Christmas and opened some presents. But for the most part he was uninterested and eventually more rages.
And that's our Christmas some years. He left a lot of presents unopened and we opted to keep them under the tree and hope he comes back around. Which as you can tell in this picture he did! Took two days later, but he finally woke up pain free and happy.
We would have wanted to do our Christmas Eve traditions and be excited and watch Christmas movies and get into the holiday spirit. Instead we had to protect our son from causing himself bodily harm. We could be angry about this. We could complain about our life, but why? He's the one in pain. He's the one suffering. Our job is to help him and try to figure out and lessen his pain. Our job is to be there for him and love him no matter what. Why force traditions or force him to open all his presents etc. That would be for US and not HIM. What would that add to his life? So who cares if it takes him a week to realize his presents. We just want him happy. And two days after Christmas he finally was happy and thrilled with his gifts. That's what's important. Not him conforming to our timeline or how we think things should be. He is making his own path in life and deciding what would make him happy and that's what we go with!
I'm sure I could wish for a better life for us or one where we can even go see a movie or dinner without him or sleep through the night without having to wake up constantly for meds and his Bipap and oxygen. But wishes won't make our life better. It won't change our life, it won't make him live without pain or have his own voice back. So I don't. We live our life day by day, moment by moment. We work daily to try and figure out how to calm his medical conditions so he can live a better life. We see no other choice. The better we can make his life, the better our life will be as well.
So Christmas. It wasn't perfect, far from it. We aren't a Norman Rockwell kind of family. But we are a full of love kind of family that just want the best for our son. Even if it's two days past Christmas before we get to see his beautiful dimples as he opens his remaining presents.
Erin you are amazing xx
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ReplyDeleteOne parent stays home with him and the other works. Like most families. Kreed is incredibly disciplined. He gets grounded and in trouble for unacceptable behavior. The behavior is not a result of his autism. It's a result of his medical issues. He only rages with low blood sugar, low oxygen, migraines, neuropathy, adrenal crisis or seizures. That's right, due to his medical issues he can't live in the real world. Neither can most people with his severe medical issues. If he just had autism our life would be simple. His combination of medical issues is life limiting. He is a make a wish kid. He cannot live a normal life due to his medical issues. Most people who have even a fraction of his medical issues report they can barely get out of bed and most live on disability. His neuropathy alone makes every single day and every step he takes incredibly painful.
DeleteI challenge anyone to live with what he has to live with and let me know it works for them. Imagine waking up every day with your entire body feeling like its asleep and sharp pins and needles hammering your body. That's what he wakes up with. At times he's even wheelchair bound. So that's right buddy- he can't live even close to a normal life because every day he has life threatening illnesses and he could go at anytime.
Kreed does not rule the roost. He has rules just like every other child. But we keep him happy and comfortable because guess what- he will never get to do the things you get to do. He will never get to live the life you get to live. He lived in constant unrelenting pain every single f'ing day of his life. I challenge you to live with such pain daily and let me know how great your life is.
We get out of bed in the middle of he night to get him food because he's raging to stay alive because his blood sugar has dropped to 20. Any lower and it means a coma and or death. So go ahead and tell me how that's ruling the roost. Do you know what it's like to find Kreed with with a blood sugar of 18, seizing and unresponsive in bed? It's a parents night mare. We almost lost him that morning. He has several medications that we have to jab in him if he's ever unresponsive.
His issues and inability to do things has NOTHING to do with autism and EVERYTHING to do with his daily life threatening medical issues. Because you judge or think Kreed has some easy life where he gets everything he wants, learn about his life and the pain and illnesses he lives with.