The One Whose Needs Are Special

When Ruth was a baby some where in the back of my mind I knew that one day we would need to explain to her what Down syndrome is. Then after Mary was born, and the dust settled, it was if that “talk” became exponentially more important.

Even so I wanted to wait until she was ready. This had to be on her timeline, not mine.

A few months ago she was going through a bit of a rough spell. Lets just say that she was less than compassionate towards her family members. She was in an almost constant state of arguing and fit throwing. She would cry at the drop of a hat and storm off to her room with a flip of her hair. She always has had a flare for the dramatic but this was over the top. I knew some of this was her feeling left out as William always gravitates to Mary and she knew that she was the “odd man out.” Of course when she did play with them she would boss and scream so I can kind of get why they shied away from her.

One particular day she was having a rough go and was sent to her room to sort it out. I was busy preparing a meal for company. She came downstairs and quietly said, “I’m leaving.”

I surprised myself with how calm I stayed as I asked her where was going (to Granny’s) and what her plans were (she needed directions). I was able to convince her to wait until after our friends came which she agreed to. I later found out that she had packed her suitcase and was really ready to go.

all the important stuff: lots of jammies, shirts, a sweatshirt, and panties

I knew this wasn’t all original thought on her part. We had watched Ramona and Beezus earlier in the week. And at one point Ramona does runs away because she feels like she ruins everything. Even so I was willing to humor her.

Enter: her father.

When he came home, shortly after, I told him that Ruth felt like she needed to leave.

His response: “No she’s not!!”

Her response: Sob Sob Sob.

I sent them both upstairs to talk/hug it out. Which they did. And she was fine for the rest of the evening with friends to distract her.

I knew it wasn’t over, though.

The next morning she was quickly back to her crying and fit throwing and told me again she was leaving. I was done playing along, though, and sent her to her room and told her I would be up in a little while to talk with her.

For a few days I had had the thought that I needed to talk with her about William and Mary. I needed to tell her that they have Down syndrome. I realized that all these crying fits were emotions and confusions she was having about her life and she had no other way to get them out. And yet it all felt too heavy to put on a (then) 5 year old. But she was telling me she was ready.

I went upstairs and asked if we could say a prayer together. We did. Then I told her that her brother and sister were different. That they have Down syndrome. That things are harder for them.  The words flowed. Things I had not thought to say ahead of time came out of my mouth. I knew that I was being given the words to tell her. It was a tender mercy from our Father in Heaven. I told her that we all have super powers. I had her help me list some of theirs. Then I told her that she had extra super powers. And then I kept listing all the special things she has. A true miracle given her volatile nature in the weeks leading up to that moment.

I cannot say things changed over night. Although she immediately took it upon herself to make sure that her brother knows how to count. Sometimes he humors her during her “lessons.” And lately she’s been big on teaching Mary to say words. She makes her sit and repeat everything that she says.

No, it’s not been over night. But there has been change. She is becoming more and more compassionate. And while she does, often quickly, loose patience with her brother I can see that she really does want to help him.

Some times I think she is harder to parent than the other two. I’m more fearful of messing her up than I am then. I’ve come to realize that while I have two children with Special Needs I have one child whose Needs are Special.

She is still trying to navigate what having a brother and sister with Down syndrome means. What Down syndrome means. When she prays that William and Mary will have help with “their Down syndrome and get better” I softly explain that Down syndrome doesn’t go away. That we can pray that they’ll learn to use words and grow and be healthy. When she mentioned the other day that we’re going to be seeing “a lot of Down syndrome at the walk,” I remind her that they’re all just people. It’s her way of sorting. Of figuring it out.

Once again I’m on her timeline. Waiting for her to ask the questions.