lessons from Mr. Guy

6 weeks.

It's been 6 weeks since Asher left us, since I've held my baby, since I've felt his warmth. There is such an emptiness to life now. It's impossible to do anything without feeling just a profound absence of him.

I woke up this morning thinking, Mondays are hard. They are now a reminder that another week has passed. If I'm being honest with myself though, every day is hard. Sundays and Tuesdays were days that I was home from work with Asher, so those days are difficult since I am now home without him. Fridays remind me of the last time I saw his face, closed his casket and buried him. Saturdays were days he spent on the lake with Hamma and Hampa while I worked. Wednesdays and Thursdays were usually therapy days where we got to see our friends in Mequon. Every day holds some reminder of what I will no longer get to do and the grief of that is overwhelming.

This reality just shows the magnitude of Asher's life. In just 21 short months, he changed this world so irrevocably that it feels impossible that life continues to go on without him.

While I was reflecting on all of this at 3 a.m. (grief insomnia is so fun), I thought I should share the beautiful eulogy that my sisters and Shannon put together for Asher's funeral. While I still can't even believe that I am using words like eulogy and funeral in conjunction with my son's name, they were able to perfectly put into words the impact that Asher's life had on all of us and I'd like to share with those who have been betting on Asher from afar.

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In eulogies, you’re supposed to talk about the great life your loved one lived and the change they made. We all know Asher was taken from us too early, but we also know he still lived a life of monumental moments and taught our community more than we could possibly put into words. Everyone here today shows us just that.

To know Asher was to know unbelievable strength. As most of you know, halfway through Kelsey’s pregnancy, we found out that Asher was going to be extra special. Shortly after he was born, Kaitie found this poem that described what it’s like to raise a special needs baby. It kind of became our family’s mantra over the past 2 years, so we wanted to share it with you today. It’s called Holland.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo ‘David’. The gondolas in Venice. You may learn some handy phrases in Italian.

IT’S ALL VERY EXCITING.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away … because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

There was a time when Holland was such a scary place for our family. It terrified us. But just like the poem told us, once we took a minute to settle in and get used to our new surroundings, we realized just how beautiful Holland was, and we knew that we had the very best tour guide in Asher.

In Mid-June, our trip to Holland took a turn and we moved into hospice. I say we because while this journey started with Asher, it encompasses so many more than just him and Kelsey. At that time, I started a list on my phone of things he had taught me and things I never want to forget about him. Eventually, the entire family started to weigh in on things to add. We all know Kelsey is the writer and public speaker in the family, but we decided we’d let her off the hook today. We just wanted to take some time to share our lists with you this morning.

First, everything Asher was, and what we will never forget.

1. He was an absolute gift from heaven, complete with his sausage toes and giant brown eyes. From his very first breath, he proved everyone (mostly doctors) wrong.

2. He had the best yawn. In Kelsey’s words “if I could bottle up one thing forever it would be his yawn.” He opened his mouth as far as it would go and let out a squeal. For some reason, his breath smelt a little sweeter in that moment.

3. If you gently blow in his face, he will purse his lips and you can quickly steal the perfect kiss.

4. He loved water. He didn’t care if it was the bath, a pool, the ocean or the lake; it was all magical to him.

5. He could suck a bottle down in 30 seconds if he was hungry, but if he wasn’t, you can bet you’d be wearing that entire bottle dripping down your arm.

6. Chocolate over vanilla. Sweet potatoes and squash over anything green. Pediasure cans over bottles.

7. When he was younger, if you pressed on his nose, he would make a fishy face. It was our favorite party trick.

8. He may not have communicated like most of us, but he definitely told us when he was mad. Including when he was over FaceTime.

9. He hated his cannula, but loved his gnome hat.

10. He loved music, spanish guitar especially.

11. His favorite finger was his left-hand pointer finger and he was happiest when it was hooked around his bottom teeth.

12. He was an outdoor baby - which I loved shoving in his mom’s face because she is not an outdoor mom.

13. He loved Marquette basketball and looked so freaking cute in his giant blue headphones.

14. He looked best in red, but knew how to rock a pair of blue glasses.

15. Tongues belong outside your mouth.

Second, everything Asher taught us.

1. Compassion and patience. That one was easy.

2. Never judge a mom when her clothes are a mess and she smells like hypoallergenic baby formula.

3. He taught Dae’Von and A’Amont, two of the toughest kiddos around, to be gentle and what it means to be a protector. His hospice nurses learned this lesson quickly, because each time they entered the house both the boys immediately ran to Asher’s side until they decided that the new visitors were safe.

4. Never get upset after talking to an on-call doctor or a resident. Wait until the head of our inpatient team or our special needs team comes through, then you can panic.

5. Asher taught us to better read Kelsey’s face and how to know when to just stop talking or run interference for her.

6. Don’t let different scare you.

7. If it’s 3 p.m., A’Amont and Dae’Von will come running “Asher’s Medicine!” This is helpful, unless someone else has the same ringtone as that 3 p.m. alarm.

8. Asher taught us that nurses truly are a gift sent to us from heaven.

9. If you ever need a nap, scoop him up. Caroline got away with taking a lot of naps, claiming “I’m just holding Asher.”

10. He opened our eyes to the special needs community. Now we all immediately check for handicap accessible buildings, correct people to use people-centered language, and know the importance of the support his mom found in random blog posts and Facebook groups.

11. Nothing gets Dae’Von and A’Amont moving quite like the sound of Asher getting sick. One gag and the whole house erupts in “Asher Towel!” and the boys running the long way to the kitchen to throw every towel they can find at you.

12. Medical jargon, all of it. Anyone know what an endoscopic third ventriculostomy is? We do.

13. The quickest way to get out of therapy was to go to Asher land.

14. Asher taught us strength, the power of prayer and that our little tribe stretched far beyond the Hau girls.

15. The best birthday presents are post cards. Also, the betting on Asher team spans several continents.

16. A’Amont learned patience, too. Mostly because he had to wait for Asher to finish what he wanted of his bottle before A’Amont got the leftovers.

17. Only Asher can pull off a mullet.

18. Never show up to the hospital without a venti iced caramel macchiato with an extra shot for mom and extra snuggles for him.

19. Never give up and never let anyone count you out.

20. If mom’s working too much, a seizure will ensure a short stay in the hospital and an FMLA reason to do nothing but snuggle.

21. Kisses don’t belong on your face. A’Amont and Asher taught us that kisses actually were best on elbows, knees, belly buttons, and feet.

22. Children’s Hospital of Wisconsin is a place you hate to love. We wouldn’t wish it on our worst enemy, but it was so good to us when we needed it. It gave us almost 2 years with our angel earthside, way longer than we ever expected.

23. Celebrate the little moments, every single one of them. Little accomplishments can turn into big ones.

24. We’re all on Asher’s time. Embrace it.

25. When given the opportunity to bet on what “usually” happens and what Asher will do, always bet on Asher.

We don’t have to tell you all how important Asher was to every single person who met him or who knew us. If you’re here today, its because you were touched by his light. When Kelsey told us she was pregnant, there was no way of knowing how much Asher would change our lives in such a short time. We are all better people because we got to know him. Our guy was taken too soon from us, but not before he could change the world with his chubby cheeks, button nose and sausage toes. Thank you for loving our sweet boy like we did.

We hope you’ll hold on to the lessons he taught us all because we are always going to be Betting on Asher and wishing our trip to Holland had lasted a little bit longer.