This question was recently posed to a group of special needs parents in an online forum that we all belong to ~
“If you had a magic wand that could “cure” your child’s disability, would you use it?”
For those of you new to our story, our first child, Ella, was born with a rare congenital condition called Bilateral Anophthalmia, which is the absence of globes (eyeballs) on both sides. There was nothing but small clumps of skin and cysts in her eye sockets upon birth, and this was only determined after two Doctors had to use a small tool to carefully pry her little fused eyelids open, as we sat closely watching in disbelief. It was also discovered through MRI that her optic nerve was barely there, almost completely atrophied to the point of never being viable.
There was a Resident in the NICU (at the Univ of Michigan) that held my hand and told us that even if someone figured out how to do a total eye transplant someday in the future…you would need a working optic nerve to attach it to. He encouraged us, just days after Ella’s birth, to live for the present moment instead of living in a state of holding out hope that her condition would ever change in her lifetime. (His name was Rock. He had short, buzzed, bright red hair. His hands were warm and his eyes only spoke truth. Some things you just never forget.)
If this question had been posed to me after we first received Ella’s diagnosis, having just enjoyed several blissful months of first time pregnancy after the heart wrenching loss of 4 miscarriages before her, I have to admit that I probably would have said yes. (Let’s not forget the NICU Dr. who had just moments before said, “my deepest sympathies on your tragedy” before revealing to us that Ella would never see. Yes, that really happened.)
So, yes. I probably would have screamed it. “YES!”
I’m 100% certain that I would have wanted that diagnosis to magically disappear in that moment. I thought I was entitled to be handed a perfect baby (and what does THAT even mean? I know, I know) after all I had already been through. Yes, entitled. I think (ok, I know) that is how I felt. I would have gladly used the wand to wave it all away so I didn’t have to ever experience that kind of raw pain, helplessness or fear of the unknown ever again.
Fast forward 8.5 years & Ella is currently enjoying 2nd grade in the Gen Ed class of our local elementary school. She is reading Braille like a Boss, exploring the world with her long, white cane, loves Taylor Swift & One Direction, keeps active with swimming & gymnastics, loves to eat noodles & chocolate (not together) and when she is in the right mood, has a sense of humor that rivals a seasoned comedian.
Does she have her share of challenges? Yes. Do I know that most simple life tasks are more difficult for someone who cannot see? Yes. Is it heart breaking to watch your own child struggle at all? With anything life throws at them? Of course.
But today…my answer to that same question would be “no.” I am not saying it’s “simply no”, because there is really nothing simple about it. But it remains the same. It’s a no for me.
I’m not screaming it. (notice the small n?) I’m not saying a lot of thought did not go into my answer. I’m just gently whispering it. And I’m even sporting a slight smile on my face.
And I would like to tell you why.
You see, this is the simple part for me.
My pregnancy with Ella really had been a complete dream come true. I found it hard to complain about the constant nausea I had, weight gain, or any aches and pains. After seeing and hearing the heartbeats of two different babies via Ultrasound – only to lose them both…and then lose two more heartbeats before experiencing an unexplainable bout of infertility, I felt I had fought the hard battle already. I had done things I never thought I could do to myself and there I was…finally experiencing a healthy pregnancy. (So, yes, we did not know about Ella’s condition until she came out)
I was determined to soak in every beautiful and precious minute of it. At night time, lying in our bed with my hand on my ever-growing belly, I knew that the Creator of the universe – the one who made the heavens and the earth – was personally creating my unborn child. Way before we knew that Ella would be born without eyes, I believed that the same God that hangs the stars in the night sky was at work on His latest masterpiece – my baby! He wove together all of her tiny parts, put all her hairs in place, and heard every beat of her heart. When Ella was born, I remembered reading somewhere that when God knits, he DOES NOT make mistakes. He neither misses nor adds an extra stitch. I wish I could remember where I read that because it so helped to change my heart.
The same heart that has lovingly come to accept that Ella is truly a one of a kind original. (Just like ALL children are! Including the two brothers and one little sissy we have been blessed to give Ella over the years.) I am able to rest assured that she was created just for us – and that we continue to be the chosen ones that are able to care for her best, love her best and give her what she needs in this life. Best. Or God wouldn’t have picked us. Is it always a piece of cake? No. (notice the big N there) Do I believe I am the person that I am today because I was given Ella? Yes. She has opened my eyes to so many things in this life that I might have never even noticed.
But you won’t catch me agreeing with the popular sentiment that “God only gives special kids to special people.” Many people told me that and I just politely shook my head. If you get right down to it, there is absolutely nothing extra special about Erik or myself. You’re sweet if you think otherwise, but we are really no more capable than anyone else. We just chose all those years ago to trust that God knew what He was doing. And isn’t it wonderful that we get to keep making that choice every day? We could have never forecasted all the amazing ways that Ella – and later her siblings – would mold our hearts, minds and the change the way we view the world.
I wrote this in an old blog post, about those precious days after Ella’s birth:
‘Later, in my hospital room, as the reality of Ella’s condition finally set in, I realized that if it was not for our faith in a sovereign God – I easily could have seen our situation as a tragedy. It was a great loss. Loss of dreams…loss of the bliss that is supposed to surround the birth of your first child…loss of having our prayers for a healthy baby answered. It certainly could have been seen as a great misfortune. However, as deep as my flesh was grieving that day, my heart was slowly finding peace. I knew that even though it might have seemed that God had not answered our prayers; that our requests and what we had received were not matching up…He had indeed been listening to us. He just had higher plans in mind. As difficult as it was, we were willing to trust Him to find out what those plans were.’
So much of life is just as simple as making the right choice, even if it is the one that is so very, very hard. I will never be able to repay the person who shared a gentle reminder with me one afternoon, as I sat on a park bench with baby Ella cooing in her stroller, my eyes red and blurry from weeping over what had just happened in a bookstore. I had gotten up the courage to take Ella out for a bit, to read her some books at the bookstore and then buy her a couple of touchy/feely ones. The cashier had started talking about her perfect new grandchild and then came around the counter just to look in the stroller. She literally let out a gasp at the shock of looking into the face of a baby that had no eyes staring back at her. It was too much. It hurt so deep. I let the flood gates open freely. This kind stranger sat with me and told me “This beautiful life is all your daughter knows. She will never know any different. Her world can be as bright and bold as YOU help make it.”
I remember being most upset by the fact that our first child might never truly enjoy a big part of our lives, as my husband worked (and still does!) for a minor league baseball team. I wrote once about after meeting Erik and falling in love with a fellow sports lover, I would dream of one day taking our kids to the ballpark in the summer. Sitting them on my lap and teaching them the difference between a knuckle ball and a slider. Watching them marvel as a home run is lifted out of the playing field. It was a nice dream. And a pretty realistic one for us. However, after Ella was born, I recalled one afternoon soon after we returned home from the hospital. It was the first time I realized that she would never see the difference between a knuckle ball and a slider. Never witness a home run sail over the fence in center field. Ella would never see one single strikeout. Never watch a player stealing a base. I remember aching at the death of my dream. I remember feeling as if my heart broke a little that day.
But then I remembered that stranger’s advice & decided to take her in a baby sling to her first game that summer she was born. I would risk the stares of strangers and all the questions I might be asked and just do it. Even though the crowd noise was way too overwhelming for her, and continued to be for years to come…I never gave up on taking her down to the ballpark. It was such a part of our lives and I just hoped she would learn to somehow enjoy it. Or just endure it! (For more on the sweet way Ella has come to love baseball, check out this story I wrote a few years ago)
I also never gave up on taking her to a weekly special needs playgroup when she was 2. Even though most afternoons I left there crying hot tears after Ella had had a meltdown for no apparent reason, or another child had tried to touch her, or she had crawled into something and hit her head. It became perfectly evident to me just how different she was than other children. It wasn’t easy. It was actually painfully hard for such an emotional person like myself.
But no truly great thing in life comes real easy, does it?!?
Time doesn’t exactly heal all wounds, like some think. But it sure has helped for me. Seeing Ella grow into an independent young(ish) lady, watching her interact with good friends she has made, seeing her with her “typical” siblings (who treat her exactly like they treat each other!), watching her learn Braille and listening to her amazing singing voice just get better and better as she grows. I do believe the best is still yet to come as well. What a great thought!!
And, really, what would our lives be like without Ella’s hilarious prosthetic eye jokes? Like the time I asked her to “keep an eye” on her younger brother while I ran upstairs for a second and she responded with, “Sure. Which one? The right or the left?” Or that other time when she asked me what it was like when I first laid eyes on her Daddy…only to have me begin to tell her…and then interrupt me to let me know that she will be able to literally lay her eyes on her husband someday. And then she burst into a fit of giggles on the couch.
Will she be able hop in a car & go drive somewhere like her brothers and sister will someday? No. Will she get made fun of sometime in the future for being different and will it crush her spirit (and mine) like we have never known? Most definitely. (I am not looking forward to things like that) Will being a blind teen and eventually adult pose some problems for her that she otherwise might not have? I am sure of it.
In all honesty – and despite all past, present and future struggles – the truth is that I love our special girl for exactly who she was created to be. I think especially of all the ways she has strengthened (and tested) our marriage, my empathy for others and countless other things I just might never have had the pleasure to truly “see” in this world. I see the ways having a special needs sister is molding the tender souls of her little brothers. (and hopefully her baby sis as well!)
Oh. And I just asked Ella what her answer would be if someone asked her the same question about herself. She twisted her body up kind of funny like she does sometimes when she is asked a difficult question, thought about it for a minute, and then said this:
“Well…if my disability was something I thought was really bad, I might. But mine doesn’t even affect me. So, it’s a no!”
Bright and bold life? Check. 😊