Diary entry, number one
I am driven by a number of deep-seated needs. One of those is to share my story, however mundane or insignificant the events of my life can be. I almost have a compulsion to do so, for whatever reason. Whether it’s through photos or through words, it is something that helps me maintain a sense of clarity and sanity. When I don’t write, I feel myself growing anxious, pressure building within the very cells of my body. I feel uncomfortable, uneasy.
It’s so easy to feel uneasy.
I write in a journal sometimes, but there’s something about the hidden nature of a journal that doesn’t quite do it for me. Sometimes it helps straighten out my thoughts. But not all the time. Not like writing a blog post or sharing photos on Instagram does for me.
I live with the words of Mary Oliver as my guiding principle through life.
“Pay attention. Be astonished. Tell about it.”
I’m drawn to simple concepts like that. Similar to Micah 6:8, which guides my ethics.
“Do justly. Love mercy. Walk humbly with your God.”
Or the lessons from the paradoxical commandments, which all end with the words “Do it anyway.”
People set goals for their lives. I think most of them have to do with wanting to be happy or wanting to be rich. I understand the desire and drive for both of those things. But there is such a shallow blessing found in both. Happiness is not the end-all. Riches only can do so much.
My goal in life isn’t to be happy, it’s to make a difference. My goal isn’t to be rich, but to be generous. With my time, my abilities, my money, and whatever wealth I gather over time.
I see Jesus’s sermon on the mount as a cosmic dare to humanity. I interpret a lot of his sermons and lessons as dares to believe him. To risk it all.
The one that saves his life shall lose it.
Blessed are the poor in spirit. For theirs is the kingdom of heaven.
Blessed are those who hunger and thirst for righteousness. For they shall be filled.
He has so many of these sorts of thoughts, challenges. And I’m like, “Ok. Challenge accepted.”
Because he also says that the one that loses his life for his sake will find it.
He says that the ones who are in pure of heart, they are the ones that will see God.
I write not just for myself. I wish I could peek into the lives of those I love and know more often. I wish I knew what was going through the minds and the hearts of my friends and family more deeply. And when I listen to the stories of those who are going through hard things, or that give me glimpses into their lives (because we all have hard things we are battling in our lives in one way or another) it really helps me. It grounds me. It helps me understand the shared struggles of humanity. It helps me as I interact with all sorts of people going through all sorts of different things, whether I know it or not, whether they choose to share those things or not.
I write for documentation purposes. To remember back to these days. To remember what it was like celebrating the 18th birthday of my daughter while one of our own youth was over with her two-month old baby, crying on the phone, yelling at the father of the baby and her parents on the phone while I held her crying baby.
I write to document the details of the moments of raising a child with special needs. That perhaps, someone somewhere will find this blog somehow and be comforted knowing that they are not alone. Because it feels so isolating. So lonely.
I write to write. To get it out of my system a bit. I don’t include every detail that happens. But I record the details that stand out to me. The feelings. The uniqueness of situations. The metaphors hiding behind the tangible parables we deal with on a daily basis.
I write with the intent of someday writing a memoir of some sort. If I ever have a consistent writing style and storytelling ability, maybe I can formulate a book out of it all. Who knows?
My wife and I have been taking alternating FMLA days to help watch out son Micah, who has a rare genetic disorder called “Kabuki Syndrome.” The last month or so his behaviors have been violent, aggressive, difficult, unpredictable. They have been that way for a couple years now, maybe longer, but the volatile nature of his behaviors has ramped up in a way that my wife and I have not experienced in the past. We have worked with his pediatrician for years now trying to figure out if there are medications that can help him. Some work for short amounts of time, but then they fade and he seems to get worse than ever before.
Yesterday was my daughter Lydia’s 18th birthday. It was my day to be off with my kids. Micah stayed home from school because the night before, on the way out to dinner, Micah puked in the backseat of the car. He puked and puked and puked some more. It was horrible. But in that sort of situation, even though you are angry, you have no other option than to just deal with it.
We got him home and had him get in the tub, socks, clothes and all. Sarah went back out to clean the car, somehow not vomiting herself while doing so.
Then she stayed home with Micah while I took Lydia and my seven year old son Ezra out to dinner at Olive Garden (Lydia’s choice, where I ate incredibly too much food in one sitting and regretted it the entire rest of the evening).
But yesterday was Monday. And so Sarah worked with the girls (we are family-teachers, house parents to about eight teenage girls), while I stayed with Micah and Ezra and Lydia in our private apartment. I put together a bookshelf for her room with Micah’s “help” and later I put together a shelving unit that hangs on the wall in the boys’ bedroom.
Micah was rambunctious and not being a good listener. He ran out into the main house countless times, frustrating both me and Sarah in the process.
“I just want to be out with my sisters! I just want to be with my girls!”
He yelled, screamed, slammed doors, tried hitting the girls as he ran around the living room.
Sarah worked to get Lydia’s dinner made, her cake made, and her presents wrapped, while the girls decorated the dining room. We always let the birthday girl choose the meal. She chose garlic/lemon shrimp Alfredo. Had a Andes Mint chocolate cake. It was good.
When it came time for cake and presents, Micah was upset because he had just been chastised for grabbing a handful from my piece of cake at the table and shoving it into his mouth. He yelled that he hated all of us, that we were all stupid. When I told him to go back to his bedroom to timeout, he yelled some more. Took the present he was giving to Lydia for her birthday, and took the things out and threw them across the room, saying that he hated her.
He ran to the back apartment in a rage.
Sarah watched him while Lydia opened the rest of the presents. Once present time was done, I went to the back with Micah and tried coaxing him to sleep. But he was upset, and remorseful and sad for how he had behaved.
“I am so stupid. I hate myself.” he said.
“Oh Micah, you’re not stupid. You were just angry and didn’t express it in the best way.”
I honestly don’t know how I’m supposed to respond in situations like that. Or what I’m supposed to say that might help. But he’ll keep saying it until I respond in some way. I’m still working on seeing what helps the most.
This was all happening while one of our former youth had come over to our home in tears saying that the father of the baby, who has not been present in the two months since she was born, wants to take the baby from her. And that his parents, whom she’s living with, want her to give up her parental rights to them.
She was distraught by the whole thing, understandably.
Her baby was fussy most of the evening, and the whole evening somewhat felt chaotic because of Micah’s behaviors, the baby’s fussing and crying, and the prep for Lydia’s birthday. The living room was filled with tools and boxes from the shelving units I assembled. It was a tad bit overwhelming.
But after an hour and a half Micah finally fell asleep.
Lydia and I went to the store to get ice cream after everyone was in bed. Then we came home and Sarah, Lydia, and I watched an episode of Hawkeye together on the couch. After a chaotic evening, it was a good way to end the night.
And now we have an 18 year old, a 9 year old, and a 7 year old in our family. It’s truly hard for me to understand and believe sometimes. We are approaching a year of Lydia living with us in the private apartment and joining our family. It still amazes me that we actually were able to adopt her. I feel so incredibly blessed by it and so grateful.