What No One Told Me About NDSC Conventions

I said Marcus would Never…

Five years ago I wrote in an article that published in the Omaha World Herald that Marcus would never live independently. I did. I said it like an undeniable fact.

Then Again…

Two years ago I wrote, “Marcus Talks about Moving Out.”

This last weekend I recognized in him even more independence and he and I talked about a “Marcus Meeting” where we will tackle some of his life goals, like an apartment and (gulp) dating.

Oh my.

Oh Freakin’ My.

All I really can tell you, dear reader, is that if you have a young child with Ds, a teenager with Ds, a young adult with Ds, please keep your mind and heart open to their process. Please encourage learning, for them and yourself, FOR-EVER. I told myself all along that Marcus will continue to learn as long as those around him are willing to teach him.

I admit, like Alice from Wonderland, “I give myself very good advice, but I very seldom take it.” Well, I’m trying to listen to my own advice, I really am. That is why we will, in fact, have a “Marcus Meeting” where we will develop with him his Circle of support and lay out on paper a person-centered plan. We will gather friends and professionals and we will listen, we will brainstorm, and we will support Marcus as he moves forward.

Of course, I also admitted to a few friends this past weekend, I don’t know why this personal growth and learning curve seems so huge to me, looking at my own self from 21 to 26 – It’s possible my own parents looked at me and noticed pretty big changes and growth in my life (Even if they didn’t, I’m sure my friends can vouch for the changes in those years).

I also admit that though we try to be open and learn, afterall our tagline here is: “Lessons more special than the needs,” yes – we make an effort to learn from every life moment that is presented. We also admit that learning is harrrrrrd. Which, of course, is not true. The learning isn’t hard, the doing, the follow-up, the changing. The steps we must take after learning, yes, that bit can be hard.

You know, sometimes even just facing it is hard.

This last weekend at #NDSC16 I, and thousands of other parents, faced big, heavy stuff. Click To Tweet

We turned our faces to look directly at the challenges that our children live, we looked right in the eyes of science, discovery, and research. We stared potential and the future that we are building together, right in the face. 

It was…A L O T.

A whole freakin’ lot.

It’s no wonder that Marcus and I had to turn in early and take naps. Filling your heart and your head is, well, exhausting. My eyes filled with happy tears many times while we met more new-old friends, while we rejoiced and then parted, while I saw joy and potential, while I heard heartbreak and out of control challenges, while I saw victories and love and fear and support and needing support and…

We must remind ourselves, again, that the steps we take in our own little world are all we can do. Do with what we can touch. Give with what we can. Love with all we have. That’s all. Will it be enough? Never. And yet, then again, sometimes it is.

Sometimes it may just be enough to change the world.