Ella

Ella, Madeleine Witham

A friend lent me this book recently, and as I am always happy to receive recommendations, I was eager to read it.

Ella is the story of Madeline Witham and her daughter, who was born 14 years ago with Cornelia de Lange Syndrome, a syndrome which is identified by particular physical characteristics and often includes intellectual disabilities.

It was confronting reading, there was so much raw emotion from Witham as she speaks of the joys and challenges of caring for Ella. It was definitely worth reading though for many reasons. It challenged me to think about the language we use when one is pregnant:

I go a little paler every time I hear someone say all they want is a healthy child, I experience a physical ache because it is so obvious that nobody wants a child who isn't "normal" or "perfect". Nobody wants a child like mine. (p19)

The frustrations many carers have when dealing with the medical profession:

There was much I was going to learn about how appallingly the health system cares for children who step outside the happy and self-satisfied label of "normal". (p25)

How hard mother's groups can be when your child isn't the same as everyone else's:

...no mother brags about a baby that is delayed in every way. I would take Ella to our mother's group meeting and my heart would just ache. I would feel physically torn to hear and see their babies and how normal they were. But you don't cry at mother's group. You cry when you put your little scrap in the car seat with her eyes focussed far away and wonder, "why you, and why her?" (p42-43)

The false idea that God gives parents of children with special needs extra patience, or a special ability to cope:

I am no different from any other parent. I don't have any training in Special Needs. I don't have a larger heart and a more patient disposition. I do what I have to do because I have no other choice. I am no saint. (p101)

And what she has learnt about love:

It is true that this child has taken away much that I thought I needed, but she has also brought me a great gift. She has taught me the meaning of unconditional love. It hasn't been an easy lesson to learn, but it has been by far the most valuable. (p45)

In the midst of her raising of Ella (and her older daughter), she was converted by the faithful ministry of a friend and minister. It seems that this has become her anchor over the years, and it was encouraging to read of her continued faith through the good and hard times:

Ella has been fearfully and wonderfully made by God, and she was born so the word of God might be displayed in her life. Amen to that. (p122)

It was an emotional and a challenging read, but I'm glad I did.