Valentine's Day: Care

 Dear Jules,

I have never been a huge fan of Valentine's Day.  I don't like holidays that make people feel bad, that are exclusive, and that are manufactured to make money.  

This year, though, I received the most beautiful, unexpected gift.  You see, people often talk about parents of people with disabilities as "caregivers." You might see words like "burden," even, or hear about how hard it is.  

What you don't hear about enough is how much care we receive from you and, in this case, from your friends. We don't hear about what we all know: care is not a one-way street.  

Since today is Ash Wednesday, your school and your friends celebrated Valentine's Day yesterday.  There was the usual running around, trying to find something that 13-year-olds would actually like instead of cheesy cards with cartoon characters. There was the usual bringing-in-of-the-treat, one that is sweet but not too unhealthy.  There was, this year, a visit to the Down Syndrome Clinic at MUSC.

This was a ridiculously long visit: we got there at 9 a.m. and did not leave until 12:45.  And when we were leaving, you said "thank you, Mom."

"For what?" I asked, thoroughly confused.

"For taking me to the doctor. She is sweet."  

While this is undoubtedly a tribute to Dr. LaRosa and to the great work of the MUSC Down Syndrome Clinic, you specifically reached out to thank me for taking time out of a busy workday to take you.  Very few teenagers would have done that, and it made me feel cared for.

And it's not just you who cares for me.  You have gathered together a beautiful group of friends:

These girls have been true friends to you.  Addy, Rowan, and Saachi are your people, and you can be yourself around them.  I'm so blessed that you have them all in your life, and that they love you so much.  

And I'm blessed that they all also care for me. Whenever I see any of them, they come and give me a hug.  They make sure that I am okay, and that I feel cared for.

Yesterday, after the Down Syndrome clinic, we had therapy with Rowan, and she came out the door with a Valentine that she made...for me.  It was so unexpected that I thought it was a mistake, but she said it was, indeed, for me.

I couldn't figure out what it said, so I asked her.  

She said "Nice.  Talks with me.  Love you lots.  Hugs."

Honestly, y'all, it made me choke up.  It had been a long, long day with the appointment and with work, I had had a rough workweek before, and this was so unexpected, such a beautiful gift.  

Such care.

So this Valentine's Day, I want to celebrate these moments of care: care that we receive from others, care we show to others.  More than anything, this is what it means to live in relationship: to give and receive care.  Sometimes we give more than we get, but in the end, we all want to feel that we care and are cared-for.  

It might feel quotidian, like an everyday thing, but it is more real than Hallmark cards or cheesy romantic movies.  

So Julia, thank you for showing me so much care, every day of my life.  You are and always will be my Valentine.

Inclusion: The Good, the Bad, and the Ugly

 My dear Jules,

Life lately has been hard.  I know you love your school and your friends, but things are just getting really difficult, what with them not being willing or able to help you with anything that is medical.  I feel so bad for you when you have an accident; instead of having consideration for your feelings, people get frustrated at you and at us.  It is not your fault, and they should never make you feel bad. 

You do not deserve that.

So on Sunday, you got your period for the first time, and you brought pads to school.  You tried to put them on by yourself, but it is just difficult with the stupid wings (wish they didn't have these).  I was told, on the telephone (thank God) that they cannot help you with any of this, ever.  

We have a conference on Thursday about High School, and I just don't know what would be best for you. I am such a fan of inclusion and think this school has been so good for you, but I am sick and tired of them making you feel badly about things that are just, well, normal.  I wish you could get help in the bathroom if you needed it and/but could also be included.  Why is it so difficult to have both of these things at the same time?  

Do I need to give up on inclusion so that you can be comfortable with your body and your friends, and your learning too?  I really want you to be happy, but you are so easy-going that it's hard to know when you are not happy.  I don't want to go back to the self-contained classroom with mostly non-verbal kids, but the more I think about years and years of this, the more depressed I get.

If you ever read this after I'm gone, I just want you to know how much I love you, how hard I'm trying to do what's best for you.  If this is not it, then I'm very sorry.