It was brought to my attention that I should write a letter of intent so that when my husband and I are no longer on this earth, people will know what we want for Kyle. What kind of  life do we want people to help him have? In particular, what are the experiences we want for him and with whom.  It should not be a guessing game. Or a time of desperation and drama. 

This brings me back to the writing of Heart’s Desire in my book, Breathe. I started to collect my thoughts back then but never completed the project. For the last few years,  “Letter of Intent” has been sitting on my to do list. The guidelines given to us eons ago by our special needs trust lawyer have grown moldy in my file. 

Why is it so hard to get started? Maybe because I come face to face with my mortality. Slap. It is there, right in front of me when I think about writing this letter of intent. Heart’s desire. Final wishes. Call it what you will. It asks when I am gone and when my husband is gone, what is it we want to see happen in Kyle’s life? The answer is I don’t want Kyle to be without us. Aha, but that is not an option. That is not on the checklist because life says he will be here a good 25 years without us.. maybe more or maybe less.  So what’s the second answer?

I have a list of questions to ask myself as I write this Letter of Intent or LOI.  LOI as in “loyal”. I am loyal to my son. So if I am loyal I will see to it that he has the opportunity for the best life possible after I am gone. But who is going to love him the way I do? Nobody. Hopefully he will get other brands of love and it will have to be enough because that’s the only option. 

 Perhaps the key to this LOI business is just getting started. Allow myself to show up at the page the way I did when I was writing my books and feeling blocked. I always tell people “just show up” and the rest will take care of itself. That is the first step. Maybe I will have to show up at a blank page a few times before my fingers begin to move, delving  into the uncomfortable places.  What if the words don’t come? They may not flow right away especially if uncertainty is standing  in my way. 

Maybe it would be easier to percolate on this LOI business for a few days. Throw the question out into the universe and watch the ideas rain down on me. And when I hear one, collect it by writing it down on my  LOI insights list. This feels like less pressure than sitting down at the blank computer screen or page. When I have a few, then I can begin assembling them like a puzzle. More ideas are likely to follow once the initial juices begin flowing. 

This should not be so hard, my critic tells me, and maybe you are thinking this too. No it should not. Technically. But realistically it feels very hard. I know after all is said and done and this LOI is completed, at least version one, there will be a great sense of relief and even accomplishment and a secure feeling of being prepared. I’m sure this will be a “living” document that I will keep revising as the years go by. Preparation is a good thing.

Are you with me on this? If you have a child with special needs who will need lifetime support (extensive or even minimal) you owe it to him/her and those in his/her village to decide on what you want to happen after you are not here to make it happen. Maybe you are not finding this as difficult as I am and you have already jumped right in. Or maybe you have one written and tucked away with your important documents. Good for you. 

If not, let’s buckle down together and get this done so when the time comes, everyone will know exactly what we had in mind for our children who will depend on others to help them live a full, rich life. 

Now where WAS that list I started back in 2008??