Mantras

OH MY GOODNESS! I'm so tired of stating that I don't write that much on this blog. And, really, I may still not but I've been thinking lately about how there are every day things in my life that could help a fellow parent or friend to feel less lonely in this journey called life.

I really wished a year ago someone would've written about how often their child with Down syndrome threw their stinking' cup on the floor. I tell parents of a typical child this and they agree how annoying it is but when I talk to my parent friends who have a child with DS they truly understand how aggravating it is. I mean, tossing cups full of milk is super annoying but tossing cups full of milk for YEARS can test the patience of the most patient of people.


A week and a half ago we got a dog whose name is Luke. I was reluctant up until the point he entered our home to take him in. Can I handle another responsibility? Will this dog put me over the edge? There is so much to say about that in itself but what I wasn't expecting was Ada to not appreciate the dog. We were hoping that she would find a companion in him. I still believe this is possible because its only been a couple of weeks but Ada hasn't come around yet.

This morning I took Ada with me to the vet to have Luke checked out. I never had a dog of my own before so I had never been to a vet. I completely wasn't thinking about the fact there would be dogs barking and that Ada would refuse to enter the vet. It took all my strength to get her out of the car. I always carry a back pack so I can use both hands and in this case I was so glad because I also had to have Luke on a leash. Ada clung to me like a koala bear as we entered the vet. Fortunately, the vet staff was awesome and they put us in a room immediately.

Ada feels deeply. She shuts down when scary and sad things happen. Upon entering the exam room, Ada immediately curled up in a ball, closed her eyes real tight and covered her ears. She does this when scared or sad and has even fallen asleep in this position. Today was no different and that's when she began to chant.



Dotor? Yes, Luke's doctor.
Home? Yes, after the doctor we will got home.
Bedoom? Yes, you can go to your bedroom when we get home.

Over and over this happened for 20 minutes where sometimes I'd repeat things and sometimes she wanted me to just say it without her questions. The staff was more than gracious and thought to check us out in that same room so we could slip out the door not to traumatize Ada further.

These moments happen when least expected and its hard not to feel her pain. Some days, like today, I am full of patience and even shed a few tears feeling so sad that I put her in this situation. Other days, I think I am going to rip my hair out because I am so tired of answering and repeating the same damn thing. No, seriously, I think I may go insane. Yes, you will go on the bus today. Yes, you will be going to school. AAAAAH!

Somehow, though I hang on and I get through and I begin to repeat my own repetitions in my head.

Ada. Full of Love. Lord, show me how to love like that.
Ada. Full of Joy. Lord, show me how to be present like that.
Ada. Full of Life. Lord, show me how to live life like I am grateful for today.
Lord, hear my prayer.

I give you this snapshot not to feel sorry for me. I give it to you so that you may not feel alone. I give it to you so you may feel compassion towards those in your life that may know this very situation. I give it to you so that you may learn from Ada as well.

Comments

  1. I know completely how you feel! My daughter is 5 years old. Whenever we are around new or unfamiliar people, she always comforts herself by telling people who I am or her brother. She says it over and over until the encounter has ended or until she feels comfortable.

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    Replies
    1. Ada is 5 too! Now that you mention it she also keeps saying people's names over and over again!

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    2. I was wondering her age! It's always fun to find another little girl with something eXtra that is the same age. :-)

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