Last night the word “retard” was said on a tv show Elizabeth and I were watching. We both reflexively flinched.
“Why did they even need to say that?” Elizabeth said. “It wasn’t needed at all.”
Can you imagine proving the value of your child? The mere fact your child was born with one more chromosome leaves you in a position to prove his worth. To tell the world he is not “less than.” He is not the subject of a joke on tv. Because that is how he is seen from the second he is born. In fact, if you have prenatal testing, many will share words of sympathy with you even before your child is born. Can you imagine? Sympathy for the miracle of a new birth?
I wonder, sometimes, why should I have to prove his value? Why do I have to tell people I’m not sorry? Isn’t the fact that he is a human being born into this life miracle enough?
But it’s not enough. So when occurrences like last night happen, I am reminded not to get lax. That even though my immediate community is supportive, there is much outside work to be done.
So I prove. I prove by sharing Wil with you.
Wil sings the whole way to school. Every single day. When you and I are complaining that it’s cloudy, or raining, or snowing, or windy, or what’s ahead in our day, Wil is singing. He has bad days too, but he always makes room for singing. And when the sun comes out, no matter how we may be rushing to the next thing, he always stops, tilts his head to the sky and says, “Oh mom, what a glorious day!” I can’t help but stop and realize the same.
How much can I expect to prove to you? How much can I expect to prove to the television show writers? How much can I expect to prove to the new moms? And expect to prove to those who utter words of sympathy that we’d really love to hear words of their congratulations?
Proving is hard work. That’s why it frustrates me. It stresses me. I feel it falls on closed minds and ears.
Rather, I have chosen to share. Sharing is fun. Sharing is grateful. Sharing is personal even across these vast social media waves. Sharing is what Wil does best. Sharing is the miracle, the singing, the glorious in this life.
I opened the car door, felt the wind hit me and my body instinctively stiffened in defense. I looked over to see Wil stepping out of the car–when he felt the wind he muttered an ahhhh, tilted his face to the sky, opened his arms wide and spun around in circles. I decided to follow his lead.
I see a lot of stressed unhappy people out there. And I wonder, how can we change that? I mean, we all have different battles to fight. And we all have different things that make us happy and sad. The online self-help bookshelves at Amazon have multiple aisles. There are therapists and any drug you can name that advertise relief.
With so many tools available, why do so many seem as stressed as ever? It’s like a competition to see who is busier. I overhead a conversation waiting in the check-out line at a grocery store. Two ladies ran into each other, and soon they were competing over who had less sleep. Is that really a competition you want to win?
There is a difference between being purposeful and being busy. It seems that being busy is supposed to win us a gold star. But how purposeful are we really in our busyness? Are we missing the point as we run in circles?
I don’t have the answers, but it sure hurts to see so many people hurting. We seem busier but unhappier. I don’t believe there are any secrets but I do believe there are methods to being happier in life. And it does involve making some changes….in who you talk to.
I will tell you, every time I go to a special needs event I am filled up. Not just by the participants, but also those doing the volunteering. Now, I’m being very general here because everyone is an individual; but when you are talking and working with someone with special needs, for the most part, their learning style doesn’t so easily fit the norm. Most of us typical folks adapt even if it isn’t our preferred way of learning. But you can’t tell a child with Down syndrome to hurry up when they don’t want to. It ain’t gonna happen. You can’t talk to a child with autism in generalities, you won’t get through or you will have someone very upset on your hands. You have to slow down and think through what you are going to say. You can’t just force things. You have to look at things from their perspective. Now, that may sound stressful to some of you, and at times it can be. But here’s the secret…it gets you out of your own stressful world that continuously spins around in your head. It forces you to think above all that noise on a different plane. To broaden your perspective and throw in a dose of compassion. And even though you may have some very big things on your plate, these experiences have the power make them shift to a better place in your mind.
At a recent Special Olympics function, I was sitting on the side of a hill with a few of the athletes. I struck up a conversation with two of the gentleman. One of them works at a nursing home. He stutters a bit, but that did not slow down his enthusiasm in explaining how he cleans the floors, makes the beds, takes care of general room clean-up. I barely needed to ask a question before he was answering it. I was thoroughly enjoying our conversation. I actually found myself almost to tears. I’m sure it was part happiness seeing this young man thrive as Wil will be a young adult in 6 years. But, mostly I think it was the pure joy I felt as a child. Sitting on a grassy hill in the summer sun and having an enthusiastic conversation. It was so refreshing. He wasn’t telling me how stressed he was to clean the floors, or how some coworker was an absolute jerk, or how he hadn’t slept in 3 days. He was a man grateful for his daily life and couldn’t wait to tell me all about it. I want to be more like him. Sorry, ladies competing in the grocery store aisle, my new friend is the real winner.
So many of us are given more cognitive abilities than this man, and yet we use most of our time stressed to the hilt. I’m not saying that we do not have very important things to attend to. But what I am saying is that it’s ok to take a step back. To take a good look to be sure what we are doing has purpose to it. To find a purpose for growth and a broader perspective, and in some cases, great enthusiasm.
The next time I get stressed, or overwhelm myself, I’m going to bring myself back to the conversation on the grassy hill. Our friends with special needs may need our help to achieve certain goals, but we need their help just as much, if not more, to remember what a purposeful life is meant to be.
I write a lot about acceptance of Down syndrome. I believe in the ultimate value of acceptance. I believe in the good fight.
And with the good fight, there is also a time of good peace.
That is the place I am in now. It’s summertime after all. Wil is moving to a new school in the fall, yet in the same school district. There will be changes, but being in the same district many aspects will remain the same. Wil will have a new resource room, new teachers and familiar teachers, a new paraprofessional he will share with likely 3-4 other students. I don’t know who those other students will be yet and how they will mesh.
If Wil was going into kindergarten, I would be in the good fight mode. I would be nervous about the multitude of changes. How will they know all of his capabilities? Many of the tests taken don’t show what he can do. That is the benefit of being in the same district. The teachers communicate. While tests have their value in certain areas, person-to-person communication rises a-thousandfold over any black and white test.
I recently talked to a mother who has a young child with Down sydnrome. She is in the good fight mode. She was full of vigor about her good fight with the schools for inclusion. I listened to her with admiration, and remembered those early days. There were so many unknowns. There still are, but I’m in a different place with that now. We’ve been in this district now from preschool through 6th grade. I know we will have hurdles to cross next year. We always do. But I know enough at this point what to anticipate, and many changes will be handled on a day-to-day process. This will change as he becomes a young adult, and I will again be in a place of bigger unknowns. But right now, that is far enough away that I need to plan for it, but not be in the good fight yet. Right now, it is summer time. I’m so much enjoying the good peace. It’s not about letting my guard down, or believing everything is gonna be just fine. I don’t believe I have that kind of luxury. Inclusion is not a given. But there is a time when we can take a deep breath and enjoy the place where we are.
Every Thursday when Wil goes to Special Olympics golf, I never forget to be thankful for this opportunity. I’m eternally grateful for those who gave the good fight to create Special Olympics and continue to grow this amazing program. It is a luxury to sign Wil up and show up. That’s it. I didn’t have to fight for that because someone else did. They made way for this time of good peace for our family. Progress doesn’t happen in a time of good peace. Progress happens with the good fight.
And still, our hearts need good peace times to fill up. To gain strength in the appreciation we have right here, right now. We live that good fight almost every day. It becomes a habit of sorts. Meeting this young mother who is in the middle of the good fight reminded me of that.
All of life is a balance. We gain strength from both the good fight and the good peace. Right now, in this summertime, I will take a deep breath from the good peace and be thankful. I do not know what this Fall brings, but I will be refreshed and recharged to build or cross those bridges when the time comes.
I’m sharing this experience for those of you who believe kids with Ds have not a single mean bone in their body. You may want to rethink that after reading this:
This morning, I woke Wil up early for an appointment. I promised him a McDonalds breakfast as added motivation to get up early on a summer morning. Of course he quickly agreed to this arrangement and was up and dressed in mere seconds.
We sat down at the promised McDonalds breakfast. Spread out on yellow wrapping in front of each of us, a Sausage McMuffin with Egg, and a hashbrown snug in it’s white casing. A favorite treat for both of us. We both took a bite of our hashbrowns first, and muttered a simultaneous mmmmmmmmm. Then we set down our hashbrowns, still in their white casing to keep them warm, and got to the serious business of wolfing down our sandwichs, saving the remaining bites of hashbrown for last.
In between bites of sandwich, Wil was telling me how funny the chef was on the movie “Princess and the Frog”. He had me laughing, and looking back I now believe it was a set-up. His method of distraction. As I was thus distracted by his amusing story of the chef, he quickly reached across the table, grabbed my unsuspecting hashbrown, the white casing falling off, and immediately took a huge bite. My hashbrown! My McDonalds hashbrown! The hashbrown I was saving for last!
And do you know what he did next when I expressed my dismay? He laughed! Yes, he laughed with his mouth full of my hashbrown. Then he chanted, “l stole Mom’s hashbrown!” and laughed again. He then picked up his own hashbrown and finished his next. I sat there wide-mouthed in shock, my jaw about hitting the yellow wrapping in front of me, that now was devoid of it’s hashbrown.
After breakfast on our drive back home, he continued his laughing and taunting sentence, “I stole Mom’s hashbrown!”
So now you know the truth. And now I know to protect my McDonalds hashbrown with my life and not fall for another “Princess and the Frog” story again.
You receive an unexpected label. Your life gets thrown off balance. But you have the label. A definition. A meaning. It makes this unexpected label tangible even if it doesn’t make sense in your life yet. The label is so foreign you can run your hand right through it as if it were a ghost. But the ghost hovers all the same. You have so many unanswered questions. The ghost is almost an illusion with barely defined lines.
What does this all mean? Why did this happen? Will it affect my marriage? How will it affect his sisters? Will he have friends? What will he do as he gets older? As difficult as those questions are, you still have questions to ask. They fill in the outlines of the ghost. Soon, you find more and more answers. That silly ghost isn’t so scary anymore. In fact, once you have filled in so many of the blanks, he is fully revealed for the fear mongerer his is and truly disappears. You realize you don’t need ALL of the answers. What you really need are friends that understand this journey and good physical, speech and occupational therapist, and specific health specialists. You discover that Trisomy 21 is not what you expected but no less beautiful place to be.
You have come full circle. You have full acceptance. Life is humming along for the most part, of course with certain bumps in the road. But you get through those, and you are coasting along. Then, 12 years later, you are watching a group of kids play in the lake. Your son wants so badly to play with them, but he can’t swim as well. He can’t swim as fast. You see him watch with yearning to do what they are doing. And it hurts you inside. And it’s not just at the lake that this is happening. It’s on the play ground. It’s on the soccer field. It’s pretty much everywhere he’s with kids his age. Kids his age are doing much more than he is physically capable of. They are moving faster, they are talking faster, they are moving on to big kid things. It’s not that these kids are unkind. There are always the kids that go out of their way to include your son. But the writing is on the wall. The gap between your son and his typical peers is growing. I thought about how I would discuss these upcoming changes with him as they come. How I would handle these changes as they come.
When Wil was born, I had a label. A definition. A meaning. Something tangible to hold onto even though my fingers went through the label as I tried to grasp it. But still, I was able to fill in the blanks and give the label an outline. I had specific questions to which there were specific answers. The journey, the individual experiences of our lives, have no such specificity. Just any day along the way can sneak up on you, encircle you with the wind of change, and leave you spinning and wondering at the solutions.I would argue that these are our true acceptance times. These are the times that you feel the fear and frustration underneath, but you would not change your child having Trisomy 21 for anything. This is the life you have, the life you embrace and love. Though my story and yours may not be parallel, we all have intertwined journeys that have no concrete answers. They can only be answered by living, sharing and by experience. I find that to be beautiful; to be truly living.
Yes, I have full acceptance of Trisomy 21. I started this journey with concrete answers. They helped me get my footing when I was grasping at air. Now, the answers are not so concrete. I suppose in a way, I’m still grasping at air. But now I find that air exhilerating. I guess that is when you really know you’ve truly come full circle. That even though you may never stop grasping at air, you are still thankful to be breathing it all in, to be exactly right where you are, right here, right now, even if it leaves you spinning at times.
When I looked down at my baby, laying peacefully in his crib, it all seemed so wrong. How could a peaceful sight such as this feel so very painful. I had received words of sympathy, friends cried with me. Though I had questioned the idea before, this was the first time I truly felt that Life was left to Fate.
Life always proves to be a teacher. I realized, as I fought for my baby, I also was fighting for myself. My point of view. I met people who congratulated me on the birth of my beautiful son. Who had no tears but offered hope and stories of how those with Down syndrome in their lives had changed their lives not for the worse, but for the better.
I realized how we all have this inner desire for experiences to be easy. And this experience certainly does not fall into that category. Ahhh, but Life the powerful teacher revealed Life is not Fate. Life has a plan. My peaceful baby was perfect, just as he was created. The only thing wrong was the way I was looking at things.
I do not regret my tears. I do not regret my pain. They are the tools I needed to work through to know the immense joy I have now surrounding my son. To see every challenge as a new opportunity to grow rather than a burden to cross.
I look at my son, singing playfully in his room. He is now 12 years old. We are in the midst of puberty. I do not fret or worry, though I know the challenges are real. I have friends who have travelled this road that will support me and guide me. And when we have moved on to the next path, I will reach back and support those who are embarking on the road to puberty.
This is a one step at a time journey. Though I had questioned the idea before, I truly feel that Life is full of Love. I only needed to lift my downtrodden eyes to see Life in a new Light.