You may have heard that eskimo people have 18 different words for snow. Just one word does not capture something that is so familiar...so a part of one's world. So too, it is with the emotions that I feel as I have raised my daughter with a disability. There are not enough words for the emotions that I have felt over the past 18 years. Bittersweet for sure...but so much more. McKenna is 18 years old now. And it is prom. I want to celebrate the way other parents celebrate. I want to feel sad that my baby is growing up. I want to cry tears because my daughter is so beautiful.. so amazing. And I do. But as I worked to curl her hair, and painted her fingernails...as I talked her through each detail of the evening..over and over... The reality was very clear...nothing about this evening was normal. As I worked to get her in her dress, and adjust her necklace, her shoes...I tell her..."tilt you head down".."now look at me"...now close your eyes for a minute." And as I stopped for a moment and looked at my daughter, as I wiped dried food from the corners of her mouth that had remained from breakfast..as I looked at an 18 year old daughter, I must admit the thought flashed through my head..."Could you just look less disabled?...just for today?"....that is what my grief was saying, but my heart could not have been more proud of my sweet and special daughter.
She went to prom with her special education teacher and a para accompany her. There made sure that this was going to be a special evening for Kenna. I was relieved to know that she was going to be accompanied by such special people in her life...who understand her, who know what makes her happy. Yet, there was no one here alongside of me to see her as she left...no group of her friends taking pictures together with their dates. No other parents standing alongside me worrying about the evening. Just her..and her teachers. She did not feel the sting of that...that has been my role from the day she was born...to take the sting of knowing fully that this world is not made for those who are cognitively disabled. She was grinning from ear to ear when she left the driveway. She was shining..
Some people get it no doubt, but most don't. Some may even wonder why she was going to prom at all. All the details for the evening were in place. She would arrive early enough to get a seat in the front so that she could see her friends and be close to the dance floor. I first put her hair up with lots of bobby pins...but the reality that she would be uncomfortable all night..feeling every bobby pin, I had decided that I would make sure that she was comfortable as she could be...the dress, the hairpiece, the whole evening..were enough "new" feelings for her to handle in one night. I wanted her to feel honored, to feel special, to feel comfortable..to feel beautiful...and maybe for an evening, to feel "normal."
I fought the tears back as she got nervous when the mini van (we called it her limo) pulled up to take her to prom. I love this precious girl so much...I have bore the suffering of a mother who has watched her child struggle in all aspects of life. The scars show on my heart...the wounds can open up as quicly as they close. I love her. I am so proud of her. I am sad for her. I am sad for me. How ungrateful my feelings are..before she was born, I prayed that she would live...I promised God that I would take her anyway he chose to give her to me. And yet, there are times when I am sad for who she may have become and for what she must endure. But I know for sure that I would not want to know who I would have been without her. My journey with her has stretched me, broken me, taught me to love in a way I would have never learned without her in my life. She is a princess...She is a gift to me beyond imagine. It has been a very long 18 years. It has been a bittersweet journey of faith...and I wouldn't change it for the world.
McKenna's life and mine with her in it, has been much like the weather on this day. There have been storms, rain, drizzle, hail...and just when we needed it, beautiful, warm, amazing sunshine. Just as we began to take pictures of this otherwise dreary day, the sun began to shine. The light reflected off of the water drops still remaining on the plants and the grass, giving the evening a magical feel...God's timing today was as perfect as it has been for the past 18 years. My beautiful daughter was going to prom feeling like a princess. The same daughter that was not expected to live beyond infancy...their are not enough words for the emotion that I am feeling today.
She had a great time. As you can see in the last picture, her hairpiece had fallen out just getting in the car...this night was not about looking perfect...or being perfect. This night was about celebrating the milestones in life...about growing up. She ate and danced and most likely did a lot of watching. She was home and in bed by 10:30pm...making it 3 hours past her preferred bedtime. She was worn out but happy. Just how it's suppose to be...
