Monday, October 29, 2012

DREADED DAY



I have long dreaded this day. The day my younger son, Kope, would realize that his brother gets a lot more attention than him. I’ve asked myself, “What would it look like? How would he deal with it? How would I make him feel special?” Well, today was the day my 20 month old has become fully aware that more people “play” with his older brother than with him. It breaks my heart to hear him cry when Nami and his therapist go into the other room to work. He screams “up, up” and tries to climb over the barriers (gates) we’ve placed between the rooms, but he is locked out. I try to ease the pain by having us all play together on Nami’s breaks, but it is little consolation. Even with special outings with his dad to the park and playtime outside with Mom, he is still aware that Nami is somehow different…he gets more attention from more people. How do I help him understand?

Kope, I want you to know that you are special and very loved. You bring constant joy to my life. I love how loudly you laugh when I chase you, tickle you and spin you around. I love how you can already speak so much of two languages. I love how you copy me weeding, cleaning, combing my hair, brushing my teeth, and putting on lotion. (I don’t like it when you eat the lotion, though. =) You are so smart! You seem to be able to figure everything out and continually find ways to get done what you want, such as using a stick to turn on the light switch or finding any furniture, bag or toy that you can climb on and get high enough to get on top of the piano or in the TV cabinet (both things I also do not like. =) I love how you put your shoes and socks on when it's time to go. I love how you give the BEST hugs in the world…so tight and then you pat my shoulders while you bury your head under mine. You are my little buddy and I love you!

Thursday, October 25, 2012

OUR ANGEL



How do you write about someone so close and dear to your heart that it bursts just at the thought of trying to record it? I am not up to the task of writing about our first-born son, our angel, but I have felt compelled to share our experiences for over 3 years now. Here is an excerpt from a letter I wrote to my family when our son was just a few weeks old:

“Yesterday our family received life-changing news. Nami has been diagnosed with Tuberous Sclerosis. At about three weeks old I discovered a couple white spots on his skin. Who knew a couple of white spots could implicate so much? Our little family is reeling with this news as we know others in the family are too. We appreciate all your love and support and know we will probably be depending on you all for the rest of his and our lives. … It’s amazing how in an instant the rest of your life can completely change….”

For the next three years, I would learn how prophetic those words were. I had never heard of Tuberous Sclerosis Complex (TSC) before our son’s diagnosis. This is a genetic disorder (a new mutation in our son’s case) that grows tumors on your body’s vital organs. Now at 3 ½ years old, our son has hundreds of brain tumors, heart tumors, kidney tumors and cysts, an eye tumor and 3 different skin manifestations of the disease. He suffers from severe seizures and is on the autistic spectrum. He is followed by at least 10 doctors and has to endure constant testing and procedures.

In spite of his mental and physical difficulties, there is something special about Nami’s spirit. He is a fighter. He is happy. He is a great blessing in our lives. 



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