“Good night sweetie pie,” I say to Christina and Maria each night, giving them lots of kisses and hugs, before leaving their bedroom and settling myself down for the night. Christina, my daughter with Down syndrome and Maria, my typical daughter, share a room and sleep in a bunk-bed. After leaving their bedroom, I might have a cup of Chamomile tea, answer some emails or cuddle up with an interesting book before going to bed myself. Another day is over, and I reflect on it. It seems as if though every day something happens that makes me understand that it will be an uphill walk forever. Either some children don’t want Christina to play with them at the playground, because she seems too different or someone stares at her or I get looked at funny or” friends” don’t want Christina to come to the Birthday party, because she would “destroy” everyone’s fun time and that wouldn’t be fair to the other children of course…. ggggrrrr….you know, sometimes I really don’t like people!!!
The other day we were at the mall, and some child said: “what’s wrong with her?” and my pain over my disabled child starts all over again. It brings back memories of shame and guilt that I felt for many years after Christina was born. Shame and guilt of feeling that I did something wrong before and during my pregnancy with her. One of my doctors suggested that I didn’t have enough vitamin B in my body, since I am a vegetarian, and that could have made my eggs “sticky.” Wow, am I really responsible for my child’s extra chromosome and essentially ruined her chance of leading a “normal” life or for her to know what it is like to be typical?????
Maybe I should have made sure I had enough vitamins in my body? Maybe I should have eaten better? Maybe I am such a bad person and this is my punishment? Maybe…
Maybe I need to stop this guess-work and start telling you about Christina’s beauty and strengths! I don’t know exactly how to tell you that children with special needs are beautiful and have their own kind of wisdom? But I can tell you, in order to experience her beauty and wisdom, you have to set aside all you know and enter into a world that is “other” than what you expect to see, hear and experience. In Christina’s world you can just simply be.
Yeah, but I want to do so much more than just “be.” I want to help out in church, I want to volunteer at my other children’s functions, I want to minister to others and help them where I can. I feel like I am failing.
And I want…
…I cry, because I want something different. Something more honorable, something more holy and spiritual. I feel like I am betraying myself, others and even God, by just not being “All That.”
Slowly I enter back into this “other” world, where the rules are simple, and my expectations slip away. I wash my daughter’s body and clip her nails. I help her get dressed and tie her shoes. I rejoice at her smallest accomplishments and my soul sings when she smiles.
Stroking my daughter’s head and gently brushing her long, beautiful hair, I realize, this is my calling. By taking care of my child, who cannot take care of herself, I am not failing, but fulfilling my calling.
My Child is My Ministry.