A gift not for return...

Today I officially joined a writing "group" called a Slice of Life. It is put on by Two Writing Teachers whose blog I have found during one of my late night writing quests. Many many know by now that I don't really sleep well. I have always had issues with insomnia and going to bed late, but this has been exacerbated since the birth of my youngest. When he was born 11 and a half years ago, our sleep pattern forever changed. My husband, who is an early riser, now sleeps in the evening, falling asleep on the couch at 6 or 7pm, while I stay awake. I, on the other hand, take the night shift, going to bed often after midnight...taking care of his evening care, watching TV, and, of course, blogging. My sweetest boy has gotten the best of both worlds, he is a night owl and a early bird. He just wants to see it all.  This has been our normal for so long it is hard to remember what it is like to go to bed at 10 and awake at 6. Even though I feel sleep deprived...he is totally worth it!

When I think about my little man, I am amazed at how awesome he is. When he was born, we were given this gift that we continue to unwrap every day. I try to imagine what life must be like for him. He cannot move his body on his own, he relies on us for everything. Yet his attitude is so positive, almost all the time (He is 11 after all!). When we enter the room, he wants us to come over and kiss him. He can never get enough. One could spend hours just kissing his face. He loves it. One day my daughter asked what we were going to do if he didn't like kisses once he reached middle school. My response was simple, "Have you met your brother?"

Born with a very rare muscle disease, he has plenty to be cranky about. When he is at school, he needs help to complete most everything. He can't get his own supplies, write with a regular pen, pick up a book, yet he is all smiles...happy to be with his friends and thrilled to be at school. He plays chess with a boy that was in his class last year and rumor has it that he is a pretty good chess player. His assistant helps him move the pieces, but he points to where he wants them to go.  People have asked me if I thought he was depressed or sad about the things that he is missing out on. The irony is that I don't think that he thinks that he's missing out. Other kids walk on their legs and he walks in his chair. Other kids run around and he doesn't. He is happy to be a part, however that looks for him. His peers include him in everything. We are lucky!

I know that this may not be true forever...he may get too big, or too sick to participate fully in his life, but he is impacting people everywhere he goes. He is moving mountains. I am lucky to be his mother. Every day that I get to go into his room and hear the whoosh of his ventilator, I remind myself of the gift he is. Not everyone has the opportunity to know such an amazing person. A boy who speaks volumes without saying a single word. A boy who touches the hearts of many, over and over.

Looking back, if I was asked would I trade...getting a full night's sleep for a healthy boy who was not this boy? The answer is easy...I wouldn't trade a thing...this boy, my boy, is worth many, many nights that lack sleep. After all...he is one gift I would never return!

Comments

  1. Love the line, given a gift we continue to unwrap every day! How special that you are able to experience and appreciate the closeness that you share with him. He sounds like an amazing little guy!

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  2. I was moved by your perception that you don't think he thinks he is missing out. Wow, that speaks volumes about the closeness and inclusiveness of his community of friends. What a gift he is!

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  3. Such an uplifting Slice of life. Welcome to our community, night owl.

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  4. What an amazing and uplifting piece filled with love. It sounds like your family has been built on love.

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  5. My friend just announced her son's birth by posting that he was "rocking his extra 21st chromosome." He has Down's syndrome. What a sweet way to celebrate life--your post is the same. Thank you!

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  6. Love is a miracle, plain and simple.

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  7. I loved reading this, I love when you said this...A boy who speaks volumes without saying a single word. He has a giant heart, just like his family !

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  8. So beautiful! I agree with Amy, that the line "given a gift we continue to unwrap every day" speak volumes. Your positive outlook definitely shows perseverance! Welcome to the community of slicers!!!

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  9. Shannon, you have now felt the awesomeness of this community. Your writing is so eloquent. I am so glad you found this place to share your stories and thoughts. I don't have to tell you, you have a very special boy. Welcome!

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  10. Your little guy sounds like a great kid- smart, loving, friendly-- everything a mom or dad would want. And it sounds like he has pretty awesome parents too! Glad you have become part of the Slice Community. It's a great group of folks.

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  11. Aw. I teared up. Loved reading about your gift.

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