This is a blog that I’ve been thinking about for a while now, but thanks to coffee with a friend this morning where I explained it out loud, I was inspired to write it down.
Strange title I know. But my world, my reality…it is strange to me. There are many days that I think this must be what Alice in Wonderland felt to wake up in world completely backwards and foreign to her.
We had pie the other night after supper. Dishes were done and the kitchen was clean. I was wrapping the pie in Saran Wrap when my 23 month old Mary, stuck her arm straight out and excitedly motioned for me to wrap it around her arm.
The toddler goes with us to a majority of the doctor appointments. We don’t have family close by to help watch her and we have way too many appointments to pay a babysitter every time with our already tight budget.
Mary has been with her brothers through countless blood draws. When our 5-year-old Charlie has a blood draw he is scared to death. Over the years we figured out that a little bit of “numbing cream” on his arm before the blood draw makes a world of difference for him. Instead of holding him down kicking and screaming, he will sit on our lap and hold our hand.
We keep the numbing cream on with Saran Wrap. Because the toddler wants to do everything her brothers do, we wrap Saran Wrap around her arm (without numbing cream) each appointment. In her world, in our world, in this world we never dreamed we would be part of, that is what Saran Wrap is used for.
This makes me think of the term “service toddler.” This is a term I first heard a couple of years ago via social media. I remember thinking, “what?” “How odd?” But I didn’t have a toddler at the time and my sons’ needs at the time were not as great as they are now. But now, it is a term I know in my heart.
Now, this little girl we have been blessed with; this little girl who goes to all the appointments; this little girl knows her brothers’ needs before they do. If they forget something she takes it to them. If something is too heavy for one of them she carries it for them. Yes, the 23 month old can more easily carry her 7-year-old brother Rowen’s iPad than he can…one of the heart wrenchers that is part of this world we never expected to be part of.
If they drop something she picks it up. And when they are scared or tired or burdened, she is the one that brings them smiles and calms them. Even more amazing and awe-inspiring is that with the 7-year-old she shares a twin like connection. I don’t know how to explain it except that it is like watching a piece of a miracle unfold every day of my life.
We have six children. Three of them have Duchenne. Three of them do not; but it affects all six of them. The love these six kids have for each other, it gives me goosebumps (at this point I am actually typing through tears). It makes me wonder what I ever did to deserve to be part of it.
The youngest has learned to serve others at a year old. The only healthy brother, is forever their defender. If a wrong is every suffered by one of his brothers, he is the first to know and the first to act. And their oldest sister, she is a caretaker that can give their medicine, put on their night braces, stretch their muscles; and she has shown an early interest in the medical field. It stems from her desire to be the most help possible to her little brothers.
This love I see in action everyday; even between the normal sibling arguments, annoyances and jealousies… This love is stronger, more fierce, more inspiring than anything I could ever have expected to be part of my world. It is a hard, sad, joyful, blessed, stressed, strange world I am part of.