My daughter was zooming through the toy aisles at Wal-Mart with her walker, I was chasing her and asking her to stop or else there would be no Lala Loopsie. Actually, she had more of a run-run-glide thing going on. One of the workers was standing on a ladder arranging shelves and noticed, I was sure he was going to ask her to stop running, but instead, he looked down at me and said, “I am so so sorry she’s like that.” And his face was contorted with great pity and sadness. He thought my daughter’s disability was a great tragedy.
His comment stopped me right there in front of his ladder. Thankfully, my daughter was already zooming by a different aisle and did not hear the man or watch his pitiful face.
“What are you sorry about?” I asked.
“Her being like that.” He said shaking his face, his forehead lined.
Let me pause to say that I really believe that angry advocacy doesn’t do anyone any good. I try to take any opportunity I can to educate and to help people see and understand what life with disability is like. But make no mistake, deep down, I wanted to shake his ladder!
“Don’t be sorry.” I said, “I feel very proud of her.”
“Well of course, but the poor child is unable to walk, it’s just so sad.” He said.
“It isn’t.” I said.
He just stared at me, as if I was the one that did not understand.
“We didn’t even know if she would be able to use a walker independently.” I said, “And look at her, I mean, Look at her! She IS walking.”
At this point Nina was running by us again.
“It’s amazing!” I said, “She’s just a little girl having fun, being naughty, ‘Nina stop running!’ and she loves life. There is nothing sorry about that. She should make you smile.”
That was all, I walked away and caught up with my daughter.
A tragedy, some people think my child’s disability is a tragedy.
Well my child’s disability is not a tragedy. But I know, I know that as we do life some people look at us, look at two of my girls and think it is a tragedy they have a disability. They think we are that poor family with TWO kids with special needs!
But you know what would be a tragedy? If I lost any of them.
And it happens, I know of pregnant women who have a prenatal diagnosis of Down syndrome, and then unfortunately have a miscarriage, and people comfort the once-expecting-parents and say, “It was for the best.”
For the best? Losing their child was for the best? A family with empty arms was for the best? The tragedy in the disability is so great it would be better for them to die? What?
I know, I know, some think that people with disabilities suffer. But let me tell you, my daughter with Down syndrome does not suffer. She actually loves life! She is one spirited little girl full of joy and unconditional love. Hang out with us, no suffering here!
And while my daughter with cerebral palsy deals with pain every day, she loves to be alive. She loves to run-run-glide down the aisles and oh how she giggles! That is certainly not the tragic type of suffering that would render one of those, “It was for the best” if she were to die. Because God knows losing her indeed would be tragic.
My child’s disability is not a tragedy. The tragedy is found in how people perceive disability, and on some pretty inaccurate stereotypes and old ways of thinking. I wish people could see what I see, what I live!
My children are children first of all.
They love to play and swing and swim.
They love Christmas and birthdays and parties.
They love dancing and singing and spinning.
They love chocolate and ice-cream and cookies.
They love making silly faces when the camera comes out.
They love making sand castles.
They love to laugh, to love, to scream with glee.
They make me so proud!
They are children, full of life. So full of life!
Life is to be celebrated and that’s what they do.
My child’s disability is not a tragedy. Life might be different than if we were a typical family, but our lives are rich and full.
So rich.
So full.
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The one that I get all the time is “he doesn’t look autistic” I have to convince people that he does have a disability and his stimming, flapping, inability to be around loud noises, “he’s not being rude and not listening he has autism” isn’t me being a bad parent.
I can relate to this post. When I started working in a special ed classroom, it was because I wanted to help kids who were, in my mind, suffering, or at least struggling greatly. After going on 4 years around my kiddos at school, I no longer work there because of their perceived suffering. They aren’t. They are energetic, playful, and happy. They love running, climbing, singing, exploring, learning, and teasing. They are not suffering, and I now work there because of the joy they bring.
Laura,
What a beautiful comment and story! It made me smile. 🙂 I hope my boys (both with Ds, one with autism) are lucky enough to get a teacher like you.
Blessings!
You are such a wonderful advocate for your daughters. You gave the Wal-mart worker, who meant well, something to think about. Maybe you changed his perception, too. Thank you for adding this post to the Dream Team Tuesday link up.
“Angry advocacy does no one any good.” I love that! It seems like some folks just want to find a fight. Keep celebrating and enjoying the life that God has given you. He is good, no matter what we think life should have been.
Ellen,
I posted this yesterday on The Mighty, but it seems to have disappeared. So am re sharing it here (;.
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Ellen,
I usually read your posts and think YES! She nailed what I feel. This one has been on my mind all week. I just don’t feel this way. Perhaps because my son has different special needs? Or perhaps just because you and I are different? I am not sure. I certainly feel that my son, himself, is not a tragedy. I know that his life was given by God and that he has great purpose. I love him and I agree with your description of a child who loves life. My son exudes love and he unreservedly shares it with everyone who he encounters. Every milestone that my son meets is such a celebration and we are beyond thrilled. They are so hard won. When he finally crawled. When he self feeds, even a few bites. When he uses his eye gaze device with such excellent skill. We are thrilled. Amazed with our sweet boy! We know that our God is good.
Yet, my son’s Mecp2 duplication IS a tragedy to me. I’m not sure that I would like the ladder person at Target to express sadness over this tragedy because it would lay my vulnerability bare, but it is a tragedy to me. Nothing in my life has every cut me so deeply or ached for so long. Nothing has brought me to my knees with begging for God so very many times in such desperation. I guess theologically speaking that is not tragedy (as it brings me to the foot of His throne) His but in every earthly sense it is for me. Still I know that my God is good.
Every day my heart aches at the way that my Liam works incredibly hard to do simple tasks. My son is 7 and cannot walk. He cannot talk. He does not feed himself or give himself drinks. Every illness is difficult for him to fight. He does not have seizures yet, but 100% of those diagnosed with Mecp2 duplication syndrome do at some point in life. Perhaps Liam will be the first to NOT have them, but we expect that he might. When the seizures come, they are very likely uncontrollable with medicines. Many Mecp2 children have incredible amounts of skill regression with seizure onset. There are children who were walking and using signs and some words who lose everything within weeks of starting seizures – down to having no head/trunk control, needing trach. They cannot even smile when the seizures take hold. This is what our syndrome boasts. I am so glad that my God is one who has better things to boast of.
The life expectancy of a person with Mecp2 Duplication syndrome is 25. So as we pray over our typical children that God would prepare a spouse for them and keep them safe and keep them in Him, we never know what to pray for Liam. You see, if Liam lives long, we will be elderly and trying to transfer, diaper, feed etc a large man (When I married a guy who was 6’3″ I planned on tall sons, but YIKES!). If we aren’t struggling to care for a large man in our old age, it means that we are living with the grief of burying our son. It is a grief that I just cannot imagine. Again, I am so very thankful that we have a God who already has our future in His plans. In the midst of this tragedy, I have a God who loved me and Liam enough to send his Son to die for us. In the midst of this tragedy we have a God who promises us heaven through his Son- A heaven where the amount of Mecp2 in every person will be perfect. I thank God that our tragedy didn’t change who HE is. But make no mistake, it is a tragedy.
Wendy, thank you so much for sharing about your son, and the struggles of your day, I can only imagine what it is like to have that life expectancy looming over your thoughts of the future for your child. When it comes to this idea of “tragedy” I don’t know if it is because our kids have different disabilities, but I can tell honestly that I often feel very different between Down syndrome and cerebral palsy. And here is the very honest truth, if I could take cp from my daughter I would, yet I don’t feel that way towards Down syndrome. The older Nina gets the harder it is having a disability. She would agree with you, her disability is a tragedy to her, she hates it, it affects her so much and as she grows we are dealing with a lot of self-esteem issues as well as depression (and she is only 8). She is well aware of her limitations and unfortunately she hears people pointing those out. It wrecks her. I do think disability is part of life, yet I have to acknowledge that their disability makes life a lot harder for them, and I don’t mean it only because of other people, or because of accessibility, it is simply harder when you cannot move your body well or you cannot communicate. I guess disability is not a blessing, but it is also not a curse, and that is where I am coming from. But I feel like I am rambling, because ultimately I want you to know that I hear you, and I see you, and your son’s disability feels like a tragedy, aside form the fact that his life is precious and you love him, and I want to validate those feelings and tell you I get it, I really get it. Thank you so much for sharing.
I was the mother of a special needs child. Jared died at thirteen but while he was still alive, a friend asked me if I was hoping for a miracle.
My reply shocked her! I told her no, I wasn’t hoping for a miracle. The miracle is that he lived 11 years longer than we ever expected.
Jan, I am sorry for your loss, and thank you for sharing such a sentiment, how true!