When I feel like Shrek
I feel as if I’ve turned into an ogre since becoming a special-needs parent. It seems silly to compare myself to Shrek, but it’s true! I don’t mean that I’m rude, green and stinky – although I’m sure my husband would argue that if I’ve been having a bad day. But what I mean is, as I have become the parent of a child who has so many complex medical needs, I’ve had to develop layers.
Onions have layers
In the 2001 DreamWorks movie Shrek, there is a scene where Shrek and Donkey are walking through a garden and Shrek is explaining to Donkey how ogres are like onions because they both have layers.
I cannot simply walk up to someone and spew out the details about all of Maddison’s complex needs, her brain damage, her symptoms, or our daily struggles. I have very strategic layers like an onion that I have developed and can peel them back, slowly explaining the make up of Maddison, and our family.
How old is she?
This is usually our first question, as nearly everyone we meet thinks she is still a young infant. When I tell them her age they are usually shocked and I have to add, “She’s really small for her age.” Because in fact, she is much, much smaller and farther behind in her development than other babies her age. Most people will guess 5 months old, when she is currently closer to 11 months.
Occasionally, when people comment,
What a small baby
I will just smile with a “yes she is” in agreeance and not share her age. Because sometimes as much as I would love to share our story with everyone, I don’t always have the time.
The most easily seen issue at this moment would be her spica cast. It is pretty hard to miss the giant purple cast covering half of Maddison’s body. For the folks who know about Hip Dysplasia, they will ask if that’s why she is casted. But most people are concerned she has had an injury.
It’s an easy one to explain: her hips weren’t developing properly in the socket, and they had to place her in a cast to hopefully correct the issue.
From there I may explain that about her high muscle tone and how it contributes to her Hip Dysplasia. But then I usually have to explain her brain damage to tie all the pieces together.
Taking a bite of the onion
I surprise myself at times when I peel back the layers all at once explaining how the brain damage has effected Maddison’s life and all the ramifications from the injury. Sharing that she doesn’t swallow is our biggest trial, and the biggest shock to people. But I am so eager to share her story because I do want to talk about it. I want to share our journey, and I don’t want people to be shy about asking questions.
All my inner vulnerability is protected by tough skin. I do not expect that people have any prior knowledge about all of Maddison’s complexities. And I do not expect them to know the right things to say, or the right questions to ask. So I prepare myself. I have my answers ready. And I am happy to educate as I slowly peel back my layers.
I do not blame people for not knowing, because I was one of them. So I am more than happy to take the time and explain our situation, hoping that more people will be willing to accept those with differences and living with difficulties.
I think that’s what it all comes down to: accepting those who are different as beautiful creations, chosen and handmade by God.