Dancing in the Aisles….

From Mason’s friend Eli, comes this story:

Dancing in the Aisles

At church, Eli loves to dance in the aisle while the band plays. We actually bring him to his Sunday school class late just so he can enjoy the music. He doesn’t bother anyone and we have noticed that he actually makes most people smile when they see him dancing. This Sunday, we were so touched by a little girl about Eli’s age. She walked right up to Eli and began dancing with him. She imitated everything Eli did. If he clapped his hands so did she. When he tapped his head, she tapped her head. She was trying so hard to engage him. I am not sure if Eli knew what she was doing, but we did. This was so touching to us, because most kids give up on Eli when he doesn’t make eye contact with them. She didn’t give up and just danced Eli’s way. So, thank you to Mia in the pretty yellow sundress for dancing with Eli and making us all smile.

Beauty in improbable places….

This is a post our friend Dan posted back a couple of months ago.  I liked it and wanted to include it in my blog.

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Beauty in improbable places

Posted Dec 21, 2008 4:32pm

Those of you who know me well know that I have long wrestled with the truth of God. One of the arguments I hear myself using on my more cynical days is a well-known classic:

If God exists and is both all-loving and omnipotent, why does He allow suffering to occur? Is He powerless? Or worse, is He simply unresponsive?

Ironically, although I continue to have my doubts about Christianity, I haven’t used this particular argument since before Eli was born. And when I reflect on my conversations with cynics, it occurs to me that those first in line to indict God for being either unable or unwilling to prevent human suffering are often the same individuals who have never truly suffered themselves.

I swear most people talk about suffering like they read about it in a book.

That could have been me. I could have lived my entire life without really having experienced pain. Certainly that’s what I had hoped for. Isn’t that what we all hope for … if not for us for our children? I’m sure we’d agree that it is only natural that we aspire to a life free of pain. The funny thing is that, if we do in fact manage to live a life relatively void of pain it doesn’t prevent us from thinking that we know what pain is. I mean, it’s painful right? Something to be avoided if possible right? And so it is that we go through life questioning the intentions of a god who would allow suffering in a world he created.

That was me before Eli. That was before I knew suffering on a first-name basis. That was before I listened to perinatologists tell Martha that her unborn son would not make it to term. That was before our daily struggle to maintain hope as Eli’s prenatal prognosis got worse by the week. That was before doctors explained to us that both of Eli’s retinas were underdeveloped and completely detached, and that his vision would be negligible at best. That was before Martha handed over her 2-week old baby to the surgeon for the first of 16 operations. That was before we watched helplessly while ICU doctors bagged our 5-week-old son two days after the first of two open-heart surgeries. That was before Martha and I would learn to place an NG tube down our baby’s throat 3-5 times a day. That was before we had to endure glances that lasted just a little too long and comments so insensitive that you would have to have been there to believe they were uttered. That was before we knew that Eli would be seen every week by speech, physical, and occupational therapists, and specialists that would routinely monitor the condition of his retinas, glaucoma, heart, hearing, and nutrition. That was before we would embark on the most painful experience of our lives…

and the most beautiful.

You see if I’ve learned anything from this experience with Eli it’s that beauty (the greatest beauty I might argue) can and often does come from the heart of suffering. Don’t misunderstand me. I didn’t say that these experiences are not painful. They are. But in the midst of suffering we have witnessed extraordinary beauty. I could not have been more aware of this truth than at the weekend family camp hosted by the Begin Program at Center for the Visually Impaired. Martha and I have come to love this annual event and events throughout the year put on by the Begin Program. These gatherings offer our family something that we don’t often get: time away from the sympathy so readily offered by the world around us. A reprieve from the pitiful glances that say, “I’m sorry.” Just like so many of the activities and services offered at CVI, this gathering is chalked full of hope.

Maybe that’s because it’s not just the kids who don’t see like the rest of the world.

The world looks at a room full of visually impaired kids, some of whom have obvious physical and mental disabilities, and sees tragedy. But that’s not what I see. I see the beauty of unconditional love that a parent shows for a child. I see the beauty of a protective big sister looking out for her little brother who has less than perfect sight. I see beauty in the selflessness of the Begin Program staff members who have given up the accolades of a high-powered career to be in the trenches with our kids pushing them to the very limits of their potential.

The world looks at Evelyn and Davina and sees the misfortune of 1 and 2-year old girls afflicted with Aicardi Syndrome. The world sees underdeveloped eyes, muscle stiffness, immobilization, and seizures. The world looks at the families of these little girls and wonders what good could possibly come from their situations. But that’s not what I see. I see beauty in the slyness of their smiles and the gentleness of their coos. I see beauty in the way they are reassured by the sound of mom’s voice. I see beauty in the self-sacrificial love of parents that would make all but the luckiest of children in this world envious.

The world looks at Christopher and sees the absence of one eye and the smallness of the one that remains. But that’s not what I see. I see beauty in a 1-year old boy so happy it is contagious. I see beauty in a boy who can’t see and could care less. I see beauty in the pride of a mother and father that can barely be contained.

The world looks at Allison and can’t see past her Optic Nerve Hypoplasia. The world wonders why she remains unstable on her feet at the age of 3 without knowing how difficult this task is for a child who cannot see. But that’s not what I see. I see beauty in eyelashes that would make super models jealous. I see beauty in the most delightful of melodies that Allison sings to anyone who will listen.

The world looks at Isaiah and sees heartache. The world cannot possibly make sense of the fact that Isaiah, who was shaken as a baby, will be visually and mentally impaired for the rest of his life. But I see beauty in foster parents who fell in love with this 10-month old boy and have decided to adopt him as their son.

The world looks at Mason and sees shrunken eyes, a white cane, and unusual self-stimulatory behavior so typical of visually impaired kids. But I see beauty in the delight of a boy flying (with the help of dad) over buildings like Superman. I see beauty in a kid so witty you never know what’s going to come out of that 3-year old mouth of his. I see beauty in Mason’s dad, who upon hearing that he was being laid off from his job was looking forward to the additional one-on-one time he was going to get with his son.

The world looks at Eli and sees eyes that don’t work together like the eyes of most children. The world sees the flapping arms and hears the clicks and grunts and wonders what’s wrong with that little boy. But that is most certainly not what I see. I see beauty in a boy’s face that lights up when you walk into his room in the morning to get him out of bed. I see beauty in those flapping arms that tell me he could experience no greater joy than that brought on by a simple toss in the air or push in the swing. I see beauty in his ignorance to the fact that most girls and boys will never experience the physical pain that he has already endured, and his unwillingness to allow it to break his spirit. I see beauty in the fact that, although he has every reason to be a nasty, whiny, fussy little boy, he has it in him to be a sweet, easy-going, charming little man. I see beauty in the fact that, although the world may believe his life is not one worth living, he will prove the value of his life time and again by dramatically changing the perspective of those with whom he comes into contact.

I understand that most of you cannot begin to imagine what life would be like with a special-needs child. I understand that unfamiliarity naturally leads you to assume such a life would be one of endless difficulty, heartache, and misery. And I understand that our natural tendency is to feel sorry for those in pain. But next time you meet a disabled child and his family, and you are inclined to feel sorry for them, you may want to think about who should be feeling sorry for whom. Because although we would gladly wish away the physical pain that Eli has had to endure in his 3 short years of life, we would never wish away the life-altering perspective that he has brought to our lives and the lives of those close to us. He has taught us to be compassionate when our nature is to be intolerant. He has taught us humility when our nature is pride. He has taught us to be patient when our nature is to fix it. He has taught us to be content when our nature is greed. Eli is not the only one who does not see like the rest of the world.

It is because of Eli that I have witnessed beauty in the most improbable places.

Dan