This Mythical Life

“I thought we had more time.”

I can’t shake this phrase today in thinking about my brother. As adults, we were not as close as we would have preferred. Living so far apart made that difficult but, I thought we had more time to grow close once again. We were as different as brothers could be. I’m tall, he wasn’t. He was an artistic creative soul, I am more logical. I have a beard, he struggled to get a soul patch going. My favorite hobbies are indoor things, his were mostly outdoors. But in all of these things, we still had so much in common and I thought we had more time to explore those things.

I thought we had more time. Those 6 words will haunt me as they will many others who were in his life. But we don’t, and I don’t. All I can do now, is wrestle with this beast that I’m so unfamiliar with and learn. Learn what losing Ben will teach me. To love much more intentionally. To live more free. To create without fear. To be humble and honest about my failings. To see beauty in all of God’s creation. You see, all these are areas he excelled in and so he still inspires me, as a big brother should.

Bear with me as I may use this forum to share some of my grief but also to look forward.

Haka Hadoween everybody! When one of the kids was little, they couldn’t say “Happy Halloween” correctly and it came out “Haka Hadoween.” From then on, we say it at least a hundred times every October and it brings us joy every time.

We survived it. I say “survived,” not as a play on Halloween themes, but because a couple of the kids were struggling with colds leading up to the day which is never fun. Additionally, Boy Wonder had major ostomy bag issues during the two nights before October 31st, resulting in sheets needing to be washed, bags needing to be changed and sleep being lost. In spite of all this and the normal stressors of homeschooling life, Halloween went off great.

The three younger ones all had homemade costumes completed in time, by mom and they looked amazing. They each had a clear idea of what they wanted to be and it was neat to hear their choices. Boy Wonder wanted to be Green Arrow, likely because he had this cool bow and arrow set that lit up with green LED lights and it looked great walking around the neighborhood in the dark. G-man wanted to be a pumpkin for some reason and if you look at him, he really is built to be a pumpkin. Lil Bit wanted to be a bat. Not the superhero, Batgirl, but the flying rodent. Also not sure the reasoning behind it, we were just glad she didn’t want to do a princess again. Peanut went her own way and bought a raccoon onesie from the store and wore that while trick-or-treating with friends.

This was the first year that she went with friends instead of staying with the family. I guess she has finally reached that age where that is going to be the norm. It made us a little sad but we remember being her age and how fun that was so we let it happen. The rest of us stopped by a trunk-or-treat that was down the street but after standing in line for five minutes, we bailed and hit the streets instead.

That was probably the last time we will even consider a trunk-or-treat as they are just lame. I mean, I don’t want the kids doing the whole cattle line, shuffling forward a few feet at a time, in this quest for precious candy. By the end of the night, they had done much better by knocking on doors and they got the wonderful experiences and memories that come with that. Plus, I know all the people behind those doors that answered the ringing doorbell were overjoyed that kids were keeping the tradition alive. We saw more kids and families walking the neighborhood this year than we have seen in years and that was awesome. So until next year, Haka Hadoween!

Our son Micah, also known as Boy Wonder, was born with a condition called Hirschsprung’s Disease. This a birth defect that affects one in five thousand births. The Cliff Notes explanation of his version of the disease is that more than half of his large intestine did not have the nerve cells that move stool along and out of the body. He had to have this portion of his colon removed and the remaining bit reattached in a surgery called a pull through. He had this surgery at 3 days old.

From this point to now, the disease has been there, altering the course of his life and ours. He has struggled with many side effects, including bleeding rashes, lack of control over his bowels, major diet restrictions and dehydration among others. Through it all, he has fought with a cheerful determination and faith. However, we have always desired better for him and so, after many tests and scans and consultations, as a family we decided to essentially wipe the slate clean and start over. About a month ago, Micah had a complete revision of his pull through. The doctor cleaned out a lot of scar tissue during a seven and a half hour surgery and decided to go with a colostomy to allow his colon to fully heal.

This was not what any of us hoped for but we are adjusting to a new normal, for now. The ostomy is only temporary, and he is healing nicely. There have been some advantages for him along with the challenges. He can pretty much eat what he wants, including fruits that have been heavily restricted before and even sweets and candy, in moderation. He is no longer chained to the bathroom and has more freedom as a result.

Looking forward, we do not know what things will be like. The plan is to reverse the colostomy once he has healed sufficiently and then see if he has the control we hope for. What we do know is that this has given him the best opportunity for that and everything else is in God’s hands. In the days leading up to his surgery, we asked Micah if he was nervous and his response was typical for him. He said “No, I’m not worried. God’s got me.” And so, this is how we face the future. God has us.