I am the Child

22 Aug

After jumping onto my soapbox earlier this week about the use of the word “retarded”, I thought I’d share something that I’ve had on Sammy’s website for several years now.

I am the Child (Author Unknown)

Photo by JJ Kaplan, Color My World Studios

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.  What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Moving on is difficult…

21 Aug

With Drs. Hicks and Jansen

One of the things we did in Sammy’s life that was extra special to me was attending Sammy’s hospital’s NICU reunion. I loved being able to take Sammy and give the NICU doctors and staff the opportunity to see him healthy and happy. Because they had all seen him at his very worst, they could appreciate just how far he had come. For me, these were the people who educated me–like a favorite teacher–and they were a big part of our lives. They are the ones who saved our son’s life; many of them cried with us, laughed with us, worried with us and celebrated with us.

While watching a local news report tonight, I saw taped coverage from the NICU reunion which had been held today. It was in that moment when I realized that we didn’t get an invitation to the reunion this year–a first since Sammy passed. Although I doubt that I would have gone without Sammy, it caught me off guard to realize that whether I like it or not, the reunion has moved on…and it’s just another reminder that moving on is inevitable. But, it’s okay because I know that if I contacted my favorite doctors and nurses and invited them to lunch, they would go and that would be a special reunion too.

With Nurse Cathy Firestone

I’m special because…

18 Aug

As I was going through some of the old files on my laptop tonight, I came across a file marked “Fathers Day” from June 2005.  I opened the file and it was obvious that I had written it, but I honestly don’t remember writing it…

Photography by JJ Kaplan, Color My World Studios

Some people say I’m “special” because I am challenged by a disability.  I don’t think I’m all that special, but I definitely feel special when I’m with my daddy!  When he picks me up, I can see everything around me, and I feel so tall.  When I go down the slide at the park, I’m not afraid because I know that my daddy won’t let me fall.

God gave my daddy big, broad shoulders, and he uses those shoulders to carry all of my burdens for me.  He pushes me and guides me in my wheelchair, and he’s extra, extra careful whenever I’m a passenger in the car.  He has big hands, but he’s very delicate and tender when he’s holding me.  He’s my protector.

Daddy talks to all of my doctors, and he explains to them how I am feeling.  My daddy isn’t a doctor, but he sure does sound like one sometimes.  Daddy gets advice from my doctors, but he ultimately seeks direction and wisdom from the Great Physician.  My daddy is a man who puts all of his faith and trust in the Lord and prays that he is the kind of father that the Lord wants him to be.

My daddy works really hard to make our home nice, and he even built a butterfly garden in my backyard just for me.  He very carefully chose each plant and flower specifically with me in mind.  On days when I cannot go outside, I can see the bright flowers from the window, and I can see the butterflies and hummingbirds fluttering their wings from plant to plant.  When I am able to go outside, there are many things in the garden for me to see, touch and smell.  He encourages me to touch bugs and never scolds me for putting my hands in the mud.  He even puts his hands in the mud too.

Night time is my favorite time because Daddy lets me snuggle in his lap, and he lets me hold the remote!  We watch Superman together, and he tells me when the story doesn’t follow the comic books he read when he was a boy.  Clark Kent is okay, but my daddy is the real “super man” in my life.

I’m not special because I have a disability; I’m special because my daddy loves me!