Thinking beyond special needs to my daughter's special purpose... Beyond Down syndrome, obstructive sleep apnea, heart problems, and asthma is Jaycee, my daughter, loved by her dad, her brother, me, and God.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Tuesday, March 20, 2018
Do You See the Value?
What's the first thing you see with my daughter?
Most adults notice right away she has Down syndrome when they look at her. Others may see that she wears glasses on her face or braces on her feet.
Most children notice within a few minutes of meeting her that she can't speak well. This, above anything else, is the thing that catches their attention and 'bothers' them the most.
Still, other children see a sweet friend.
If they look hard enough, adults may see a child who is loving and happy as they watch her hugging friends or kissing her brother.
Beyond that, what do you see?
Do you see a child with a future and hope?
Do you only see a child with needs and limitations?
Can you see her value?
I know what I see in my daughter.
I see her heart, and it's beautiful. She reflects the attitude of God more than anyone I know. She loves anyone right from the start without reservation. When she sees a child, she sees a friend even when they are uncomfortable with her. She's not ashamed to hug and kiss those she loves. She gives love without expecting anything in return.
I see a child who has worked hard to achieve many things in life. I see a child who has faced challenges, illnesses, and "bad" days better than I would have. I see a child who is driven. I see a child who has overcome.
I see a child who has benefited from programs, therapies, and schools that assist in making her life better, but that betterment of her life isn't what gives her value.
I see a child who has worth simply because she is herself.
She is a living and breathing human being. She has a soul and a mind. She has feelings, preferences, ideas, and dislikes. She has fears. She has things that make her laugh.
She loves the color green, her iPad, her cousins (especially Gabby), and her cat. She loves playing the tambourine while her brother plays guitar. She loves singing along to Skillet, Toby Mac, and the soundtrack to Beauty and the Beast. Her love of Beauty and the Beast is starting to teeter on a full blown obsession. She has a number of funny things that she does such as eating one food on her plate at a time before moving to the next food or making sure her glasses on her nightstand are perfectly parallel to her bed before she gets in it. She is amazing and funny, and I love her so much.
Where am I going with all this?
March 21st is World Down syndrome Day. The date 3/21 is a reference to the 3 copies of chromosome number 21 that individuals with Down syndrome have. Each year this date rolls around, I feel compelled to write a piece on this topic I am passionate about.
This year, I feel a bit tired. I am tired of living in a world where many people simply do not value people like my daughter. I don't know how to teach people to value her life. It seems like it is a fundamental thing, but it is not apparently.
I find that many people say they don't think life is all about getting the best education, having a high-income job, or starting a family, but it seems that these are the things that people use to judge a person's value in society in the end. There's so much more to life than those things. That's a very narrow perspective that some will surely not fit into.
Today, I ask you to look beyond what you may normally see. Look beyond the disabilities and see the abilities. Look beyond the shortcomings and see the unique aspects of a person's personality. See the love. See the human being. See what I see. See the value.
Friday, September 27, 2013
From the Toy Store to ICU
Saturday afternoon, I took my kids shopping at Toys R Us. Jaycee had a great time picking up toys, playing with them awhile, and throwing them down. It was hilarious. We had such a great time going up and down the aisle. I loved seeing what toys she was drawn to.
Then came Sunday. What started out as a little sickness turned into a huge ordeal. We got her to the emergency room. She was feverish, tired, having difficulty breathing, and vomiting. In a short time, she was in the intensive care unit (ICU). In a few more hours, her monitors started going off. Her blood pressure went critically low. Before I knew it, I was sent out of the room so Jaycee could be intubated. This was a first for us.
And so this nightmare that started on Sunday has continued on until today (Friday). She's been diagnosed with pneumonia, rhinovirus, septic shock, and acute respiratory distress syndrome. Jaycee is the sickest she's ever been. She still has the breathing tube and has been sedated this entire time.
I haven't heard my little girl's sweet "mama", seen her smile, felt her kisses, or watched Barney with her. I miss her. I have cried, prayed, given her pep talks, and tried to keep it together.
Life is so precious. Every moment is a gift. You never know when life will change in an instant.
Then came Sunday. What started out as a little sickness turned into a huge ordeal. We got her to the emergency room. She was feverish, tired, having difficulty breathing, and vomiting. In a short time, she was in the intensive care unit (ICU). In a few more hours, her monitors started going off. Her blood pressure went critically low. Before I knew it, I was sent out of the room so Jaycee could be intubated. This was a first for us.
And so this nightmare that started on Sunday has continued on until today (Friday). She's been diagnosed with pneumonia, rhinovirus, septic shock, and acute respiratory distress syndrome. Jaycee is the sickest she's ever been. She still has the breathing tube and has been sedated this entire time.
I haven't heard my little girl's sweet "mama", seen her smile, felt her kisses, or watched Barney with her. I miss her. I have cried, prayed, given her pep talks, and tried to keep it together.
Life is so precious. Every moment is a gift. You never know when life will change in an instant.
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