Saturday, September 24, 2011

What is not my job

One day, someone will point at my daughter and call her retarded.

Someone will peek inside my sling and recoil when they see her feeding tube and ask questions about what's wrong with my baby.

We have been thrown into this exhausting and amazing world of children with special needs and have become ambassadors.

Every time people want to know about Kaylee's heart or her differences, I will again be explaining the crazy, heart-rending and unexpectedly delightful world of parenting a special needs child.

I have been "different" for a while now and I know what it is to be stopped in the street to be asked personal questions by strangers. Once you get to about child number four you'd be amazed how often strangers feel the need to comment on the health of your "lady parts" or your bedroom antics. I know what it is to have the same questions asked again and again.

I will be struggling to find words to describe the awesome feeling of when she attempted to feed for the first time and convey the fact that having Kaylee in our lives makes colours brighter, food tastier, music more beautiful, air sweeter and hugs warmer.

I will be attempting in some way to get people to understand that Kaylee is not a "blip" in our collection of healthy children. While the pain we have gone through in the last two weeks or so is huge, it is so worthwhile.

But the knife that turns in my heart, is that one day, someone will call my daughter retarded.

Heaven help me part of me prays that her mental capacity is limited enough that she doesn't notice but I have known enough kids with special needs to know that even the most profoundly disabled child reads the tone of voice and body language and feels the pain of the rejection, fear and judgement wrapped up in those words.

The thought of it creates a feeling in me that is very familiar.

I felt it when I walked into the cardio ward to see my favourite PICU doctor about to give my daughter a lumbar puncture.

I rage at my helplessness to protect Kaylee from the pain that this world holds for her.

I shake with anger that sin creates such hurt for my child.

And I am reminded.

About two and a half years ago we had run out of milk for breakfast so I gathered the children (Erin, Billy, Christopher, baby Anna in the ergo and a belly full of Andrew) and went accross the road to the shop to get some. On our way back Erin darted down the drive way and Billy and I went through the front gate, planning to jump out and yell boo at each other when we met. I thought Christopher was following Erin but he didn't jump out and say boo. He had disappeared. I ran out to the driveway and he wasn't there. He had followed the cat then looked up and, unable to find us, logically went back to the last place he remembered seeing us (even as a toddler, Christopher was smart and logical). The shop. Across the main road that was busy with tourist traffic, log trucks, milk tankers, trucks from the lime works down the road.... Panic filled me. I ran out to see him being ushered off the road by a woman as trucks thundered past. I babbled my thanks over and over to the woman and she said something strange. She said "We wouldn't have let anything happen to him." Unable to register anything I gathered my children and ushered them inside. I plonked everyone around the table and laid hands on my Christopher and praised and thanked God for his safety. I called a friend (Bek, my pit-crew cheif actually) and babbled the story to her.

Later that day God came and sat next to me. I told Him I didn't want to talk about it. I told him I felt afraid of what could have happened. That Christopher would have had to live the rest of his life with huge challenges and pain because of my inattentiveness. That my ineptitude as a mother could have cursed my child. That I could not protect him from everything.

And God said something to my heart.

He said

"Nothing will happen to your children that they and I can't handle together."

It turns out that I don't have to handle my children's pain. I don't have to make it all better. I don't have to protect them from all hurts. I don't have to avenge all wrongs. That is not my job and even if it was, it is not something I am equipped to do. My main task as a mother is to introduce them to someone who CAN do all those things and to help THEM develop a relationship with HIM.

Yes, it will hurt to watch her go through various medical procedures. There will be times when I need to leave the room so I don't tackle the doctors and nurses and beat the living snot out of them for hurting my baby. It will hurt when people judge, fear, shun, stare, point or treat Kaylee like a mistake. I may be forced to beat the living snot out of some of those people. But ultimately, Kaylee has a greater defender than me. He has carried me through the darkest moments of this experience and soared with me to the greatest heights and pleasures.

So Kaylee Grace, my sweet girl, meet your Heavenly Father.

He loves you even more than I do.

And that is a lot.


Momma Bug said...

Oh Jess! You melt my heart with the truth you write.

Top that!

Mrs. Mathewson said...

Hey Jess, love what you have written! So right and true. My Children walked passed the computer when I was opening the page. They looked and saw your precious baby girl. I just have to share their response..."Oh Mum look at her, she is soooo cute!... Her Mummy is so blessed, she is a perfect blessing sent by God" I could have chosen better words to describe her. Bless you.

Susan (HomeGrownKids) said...

Oh Jess, they are such valuable lessons to learn. But oh, so painful. I thank the Lord that He loves us enough to show us, teach us these things. And that His grace and His strength is always available to us.

((((( Jess )))))

Bek Ross said...

I thank God for the inspiration and encouragement you give me through your words, written and verbal. Kaylee is blessed to have YOU as her mother, one that shows her, from the very beginning, that God is the best thing that can happen to her.

Char said...

Isn't it just the toughest thing ever about being a mum - having to watch your childs pain!!!! You have been enduring a heap of it in the last few weeks - may God truly strengthen your heart. I love his words to you after Christopher got lost - may they carry you through this time too!!! I'm just so glad that God is so much bigger than us - and wow He loves our children even more than we do!!! Bless your mother heart xxxxxxxxx

Anonymous said...

Jess, your eloquence says it all. You capture life and express it so beautifully. Thank you for sharing. Your words have made life easier. Know that I'm praying for you and your family - especially Kaylee.