Thursday, November 2, 2017

An unexpected confrontation.

We just closed out the month of October, which is Down Syndrome Awareness month (officially declared in the state of Washington, which is pretty cool!), and although I wasn't able to post specifically for that purpose as much as I would have liked, it is nice to celebrate Down Syndrome. We do a LOT of celebrating Down Syndrome in this family. We LOVE Down Syndrome, and are passionate about sharing that love with others for a better understanding and openness to people with Down Syndrome.

We share Mildred's sweetness, and beauty, her funny quirks and stubborn disposition. We celebrate all of her accomplishments with reverence and awe, knowing full well how hard she has worked to meet those milestones that come so naturally for many "typical" kiddos. Millie's weekly therapies, biweekly OT play groups, and doctor's appointments are (for the most part) filled with praise of Millie's accomplishments, growth, health, and love-ability. Even her IFSP (Infant Family Service Plan - the IEP substitute for children ages 0-3) meetings are focused on the growth, development and progress she has made, while still setting goals for the future. We are so blessed and supported!

Viewing Mildred (and Down Syndrome) through this lens of positivity is effective in keeping up the rigorous pace of constant therapy, practice, therapy, practice, rinse and repeat. It breathes life into difficult moments of stubbornness and inability and helps us to focus on the growth rather than the short comings. Until, of course, you have to face those short comings head on.

It happened today, that unexpected confrontation with reality, just like it has periodically over the last two and a half years. I had a phone interview for the process of determining if Mildred is eligible for an assistance program, and a part of the determination is examining how "disabled" she is by her disability. As the litany of "can your child..." went on, I felt the lump forming in my throat and tears welling up in my eyes.

No... No... No... No, she can't talk. Well, she can talk but only has about 4-5 spoken words. No strangers cannot understand her most of the time. Yes, she can walk independently, but only for short time and not without help over uneven surfaces. No she cannot run. No, she cannot follow directions. No she cannot follow two step directions. No, she cannot point to the parts of her face and body. No she is not cooperative in getting dressed.  No she cannot dress herself, feed herself with a spoon, brush her teeth....... 

The reality of Millie's disability began to overwhelm me, and I cried silent, warm tears for my baby girl and all of the things that she has to work so hard to accomplish and yet, still falls so far behind in. It hurt my mama heart to hear concretely all of the age/developmentally appropriate things that she can not yet do.

The thing is, its not like I don't know it, you guys. I mean, I'm not blind or naive (well... maybe a little naive ;) but especially when Mildred is around other typically developing kiddos her age I see the difference - it's there in front of us so clearly! I had to face it when working with her pre-school teachers who so lovingly are trying to figure out how to meet Millie's needs and include her in their "general ed" classroom and seeing how many tasks she simply is unable to do, and how much attention and support she needs.

And yes, I KNOW that her worth does not come from her ability to meet developmental milestones, or accomplish tasks, or get certain grades. And I KNOW she will do things in her own time and in her own way. I KNOW that she is amazing, and a wonderful gift, and we are SO LUCKY to have her in our life, just as she is. And I KNOW she is changing, and will continue to change, our world. Believe me, I KNOW that better than anyone - I live that every minute of every day.

But today, I think I just want to say that it still is hard. and painful. and there is still a grief over how difficult things are for your baby, and how much more fighting and working and growing they are going to have to do in the future. There is a death to mourn there, and today I was hit with that grief. That grief is borne out of love for who my child is, who she REALLY is - both in and apart from her disability, and a longing for an easy, joyful, "normal" life.

I share a lot of the "sunny" side of Down Syndrome, and it definitely is! But this is life with Down Syndrome, (special needs) too. It doesn't do anyone any good to gloss over the hard and messy stuff, and it doesn't do anyone any good to "just look on the bright side." There HAS to be both pieces: the positive and negative. They balance each other, and without the negative, the positive isn't quite so positive.

So now I have grieved. and I will have a funeral for that death of expectations of normalcy.
And then I will move on and be an advocate and cheerleader for my amazing little girl. And her tribe will rally around her and support her and she will exceed all of our expectations and continue to be the amazing little pearl that she is - because she is our Mighty Millie Pearl.