But what can she DO?  

She can’t do anything. She just sits and looks pretty and sometimes makes little happy noises when she sees things that we can’t see.  

One of the toughest tasks of being a parent to Grace has been answering questions during the annual evaluation for services. Enduring this mandatory process requires me to admit out loud every year that my daughter does not fit into this world’s view of what matters.  

The questions they ask are very general and very few of them apply to my daughter. I have zero expectations for her improvement. I have no goals for her to work towards. She has no behavior problems that we need to fix. She has no obvious likes or dislikes to use as motivation. She doesn’t get therapy or go to school because she can’t learn new things. She isn’t going to offer any return on investment. By the end of the interview, I always feel exhausted and sad.  

Then the caseworker leaves and I breathe a sigh of relief that it’s over and thank God for the services.  

“Total care” is a term that not many parents ever expect to use about their child past the age of about one year. By then most children can walk, feed themselves a little, indicate their desires loudly, and most importantly, show love and affection by smiles, hugs, and baby talk.  

Not my child. Not my beautiful, perfect, totally dependent daughter whose needs must be deciphered and whose value must be measured in ways that most people don’t think about much.  

But as you will discover in the rest of this book, though the world may not see it, Grace’s life is a gift. Caring for her is not a burden, but a privilege that has taught me many lessons. I hope that sharing her story will give readers a new perspective on people living with severe disabilities and a deeper appreciation for human life.

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.” But I say unto you, they are inseparable. Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.””  Kahlil Gibran 

https://poets.org/poem/joy-and-sorrow

Note: Hey blogging friends, I’ve decided to attempt to write a book about my daughter. Just getting this introduction written was pretty tough emotionally, but hopefully it will get easier as I go. I don’t plan to share as I write, but I thought I would let you know what I am up to so you can pray for me. Grace will be 21 in January! Seems like now is a good time to write this book. This is not necessarily going to end up being the introduction. I just wanted to get some words and thoughts on ‘paper’.