I wonder how long it has been since I stopped.
Stopped long enough to really spend time with a children’s book.
Stopped to play with play doh.
Stopped to really look at my child.
Until Monday morning.
Mondays have turned into my favorite day. The best start to my week is slow. I get to sit in my pj’s and cuddle with Ellie. Most of the time it is for a few minutes during Fresh Beat Band. Then I get up and start. Manage the calendar. Start the Laundry. Grocery shop. On a good day, I run.
But today was different. I stayed longer on the couch and turned off the TV. We grabbed a few Christmas books and read. We chatted about what she saw in the pictures and talked about baby Jesus. Did you know, according to Ellie, that Jesus had a pacifier in the manger? Fascinating.
Then, we played with play-doh. She destroyed, while I created. We made a house, a fish, a christmas tree, and a miniature Ellie. All in yellow, of course.
And you know what? I had fun. I actually liked it. And, it unlocked something in me I buried long ago.
I think I had trained myself to stop dreaming of days like these, for myself and my children.
When we had Jayden, I used to dream about doing typical things like reading and play-doh with my children. And slowly, those dreams died with their abilities. So, we learned quickly to create new dreams for our children that were less about their ability and more about our character.
We still read to Jayden and Brooklyn every night because that is what you do with kids at bedtime. Jayden can still kinda turn pages of board books. Brooklyn can still remember the last word of some of the Lighting McQueen book. But, we try to ignore that they are slowly losing interest. They eat books. They rip pages. But, we keep reading. We keep reading because we want to communicate that their abilities don’t matter, they do. We are thankful they are here teaching us and it is an honor to read to them. But, at the same time in our hearts, we silently grieve.
On the other side of the spectrum, we have Ellie. Raising her has opened up new experiences and new wounds. She remembers, she imagines, she interacts. I try not to let myself get too excited about the future with her. It is so fun to watch a child learn. It is neat to have conversations with my child. It is crazy we can talk about yesterday, or even tomorrow. She runs around with no clothes, full abandon, singing, dancing, and playing the drums. In our secret times, I whisper, “I love you” and she says it back. I say next, “I am so proud of you” and she whispers it back. I know Jayden loves me, but I have never heard him say it. Ever.
Many times, it is the presence of ability that reminds me of the presence of disability. They co-exist in our home.
Do you ever feel tension between two truths?
I remember the moment I told Justin that Ellie didn’t have Sanfilippo. We both felt it. In concert, we celebrated life and grieved death. We felt excitement and joy for Ellie, and a fresh wave of sadness for Jayden and Brooklyn.
It’s so challenging to have one foot in special needs and one in typical. One foot in death and one foot in life. One foot excited for the future, one foot in the terrified in what tomorrow may bring. One foot in progression, one foot in regression.
It is beautiful tension.
So, today has taught me a few things.
Number 1. Occasionally reprogram my default setting. Being me is good, and houses need managers. But, play is good too. Not just because we are told by great moms to whom it comes naturally, but because it is good for my soul. It is fun to play, imagine, teach, and create. I need it and Ellie does too.
Number 2: It is in the tension we find peace. God is in the tension. In fact, I think that is the hardest thing to trust. We are uncomfortable with tension and want God to be an either/or when in fact, he is a both/and a lot of times. It’s like a rubber band stretched between two points. And without the tension, we can get too focused on the points instead of the tension.
For example, it isn’t good to just look at death. I know a lot of people that do. They are frantic for a cure, they are counting down the days and forgetting to live life. But I also know people that think they are invincible. That live like they, or their children, are guaranteed tomorrow. Neither fixed point is good. It is in the truth of both points God stretches across. It is the very truth that we are going to die that makes us want to live.
So somehow, it is the very tension in which I must rest.