Wednesday, April 20, 2011

I Love You Mommy

I could hear the happy squeals of laughter coming from outside on the trampoline, 4 young voices having so much fun….making the most of a cloudy, cool spring day. Inside was nice and warm and it was time to make dinner. Often while in the kitchen I stop working just to watch the kids. Today it was Hannah (10) and 3 of the neighbor kids. Being all about the same age things were working out just fine. As I stood looking out the window along came the youngest little neighbor girl. In her tiny hands were candy…one for each of them. I watched as they scrambled to the edge of the trampoline with their hands ready for a candy. One by one they took a candy and eagerly put it in their mouth. Then it was Hannah’s turn…she put out her hand...took her candy…looked at it….held it for a moment longer…shook her head no and slowly gave it back to the little giver trying to coax her to take it back and eat it herself. As I watched this little scene a lump came up in my throat. This, I thought, is the life that Hannah lives every day but how often does this happen and I’m not there to witness it. I went to the cabinet and got out a piece of ‘safe’ candy and then knocked on the window for her to come to the door. As she came to the door I opened it and without saying a word, gave her the piece of candy and kissed her on the lips. She looked up at me and said, “I love you Mommy” as she took the candy and bounded back to the trampoline. Further words didn’t need to be said we both knew each other’s thoughts…me thankful I could fill the gap so often left open and her thankful to not have been left out. I went back to making what used to be an easy meal but now much more complicated….spaghetti.

When we have a child with a disability often as parents we hurt as well. We are so thankful that Hannah is still with us and even though she has severe food allergies she has now been properly diagnosed and is doing well. And yet it’s not easy being a 10 year old with severe food allergies. Food affects our very core of existence and it’s virtually impossible for her to go to anyone’s house without bringing her own food along. Hot lunch at school….birthday treats at school….birthday parties…school or church functions that involve eating…sleeping at a friend’s house….all requires either the sacrifice of not eating or the bringing of her own food.
Often I think about the role we play in dealing with a child with a disability. Sometimes I wonder what I did with all my time when I didn’t have to make 2 of every meal…make 2 of every baked treat….read EVERY label of every food I buy…spend $20 for 5 pounds of gluten free flour, and the latest….make homemade ice cream (which otherwise costs $6 a pint…yes per pint). And yet I do not stand alone. Our struggle is with allergies but many a family struggles with a child with a disability…whether it be physical, mental, or otherwise.
I truly believe that we should try our utmost not to allow our child to feel sorry for themself. In my own heart do I often feel sorry for her?? Absolutely, but it doesn’t do any good to walk around having a pity party. Here are the ways I use myself to avoid the pit.
First we must realize it could be so much worse. No matter what the issue is there are many children in this world who have it far worse than our child. This is not only good for us to realize but to gently remind our child of, not that we throw it in their face but it’s a mental attitude we need to have. So for example the following conversation, “Mom, it is soooo hard not to be able to eat like ‘normal’ kids do.” Me, “I know Hannah you are normal and I feel bad for you too but we have to think about so many other kids who have it worse…you could have cancer or no legs or a different disease to deal with. This is teaching you to become a stronger person.” This conversation doesn’t often happen but there are the times. I then ask her if there is something I could make or do to cheer her up. It’s so important to come down beside our child during their down times as this is very real to them but not to let them stay there.
The other thing I do is to try to make her life seem as normal as other kids. If she is going to a birthday party and they are having pizza and cupcakes then I will make her some of her pizza and gluten free cupcakes. If there is a church pancake breakfast I will make her as much as possible the same menu at home. But as parents there are times that it just doesn’t work to accommodate them, especially for parents with a child with a physical disability, these are the times that we have to encourage them to be strong. We need to teach our children that there are disappointments in life…how we deal with them is what makes us the person we are.
We must watch that their disability does not make them angry towards God but teach them that there is a reason God made them this way. Just because they are not ‘like the rest of the kids’ does not mean they are not “fearfully and wonderfully made.” God has a purpose for each one of us. I often see that Hannah’s struggles make her a more caring person towards others who have problems and I hope we can nurture this more and more in her.
In all our struggles we must ultimately remember to encourage our child to think of Christ who suffered much….much more than we could ever suffer and He never complained but willingly suffered, patiently endured the mockers, shrunk not from temptation, but endured to the end to pay for the sins of sinful, rebellious people.

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