Kentucky

 

I have always assumed that someday, when Billy and I are no longer here, Abby and Emma would take care of Coleman.   I never spent any time thinking about it past that statement.  It was just matter of fact, of course that was how things would go.  I honestly didn’t want to spend any time thinking about, much less planning for, that eventual scenario.  I still don’t. 

But this past year something changed.  It started when my good friend Leslie told me she was working with a group of parents from California to build a new housing complex for her son (who is also autistic) and other individuals like him.  The undertaking was massive, and she had been flying out to the West coast every month to meet the group and move the initiative forward.  So he’ll live there?  Without you?   Even asking the question out loud made my stomach hurt.  But Les was all business:  We won’t live forever and this can’t become my daughter’s problem to figure out.  

I thought a lot about that afterwards.  In meetings.  In bed.  In the car.  And I thought about my girls.  This can’t become my daughter’s problem to figure out.    

It was then that I started to think about other options for Coleman.  What kind of place would work for him?  What would his day look like?  Who would do things with him? What about his diabetes?  It was unbelievably heartbreaking to even think about.  Still, I forced myself to consider that maybe there was a place. 

Around the same time, I learned about a place in Kentucky for kids and adults with special needs.  I looked into it and wowee kazowee it was incredible.  It’s this magical nirvana of a place – it looks like a college, with girl and boy dorms, tons of recreation and activities – they are scheduled 7 days a week.  Their motto is ‘Life Long Learning” and they have quite a population – from like 7 years old to 75 years old!  I called and spoke to the program director.  She gushed about the place and all I could think was “You had me at Hello” 😊  I loved everything about it, except that it was in Kentucky.  My whole family is here.  Billy’s whole family is here.  I wondered if we could start a new life in Kentucky.     

Christmas came around and the girls were home for break.  One night while Abby and I sat in the kitchen sipping wine and chatting, I thought about Leslie’s comment. This can’t become my daughter’s problem to figure out.   I brought out my phone and showed Abby the place in Kentucky.  What do you think?  She took my phone and was scrolling through the website.  This looks incredible!  If you know me by know, you know that response only made me more sad, because I am crazy emotion lady and I wanted her to say That is place is ridiculous and besides I’m taking Coleman.  So I cried and she cried and Billy walked into the kitchen and turned around and walked right back out. 😊  After our little cry session, Abby looked at me seriously.  My whole life I have known I will have Coleman some day.  I love him and I am ready for that. Emma feels the same way.   I didn’t argue with her, and instead hugged her.  But in my heart it was the first time I felt the absolute enormity of what I was asking them  to do. 

The girls went back to college a couple of weeks later and Billy and I went out to dinner.  We talked about the girls and how they would be graduating this year, and how they have so much life ahead of them.  How wonderful it is to be so free.  We talked about how much life we have lived and loved, but how hard too things can be with our little man.  How challenging it is for him to do so many things and how the world shrinks smaller and smaller for him, and therefore us too, and that many of the freedoms we once enjoyed are gone.  We accept these things easily, focusing on our blessings and not our shortfalls, and that we would live this life again every single day, every single minute because he is our greatest boy and we love him beyond measure.  Finally I said what we were dancing around.  We cannot ask the girls to take care of Coleman when we are gone.  The ask is just too great.  We sat in silence first, and then in tears, and our poor waitress came to the table at just this time and said apologetically “I’ll give you some more time with the menu.” 

So that is the very long story of how we decided to move to Kentucky.  😊

I’m kidding.  Sort of.  We’re finishing Marshfield, of course.  That’s the first priority.  But we’ve acknowledged that this isn’t the end.  There is one more step to take for our boy and it will be the hardest.  Maybe it will be Kentucky.  Or maybe we’ll build a Kentucky here.  Think big, folks.  Big Thinking precedes Great Achievement. 

Thank you again for following this year.  I apologize for the dismal performance on posting. I promise to do better next year.  Until then, Birds Nest Catching.