WILingness

Last night as we all piled onto the couch to watch TV before bed, Wil stuck out his little bare foot, and I couldn’t help but tickle it.

He burst out in laughter and said, “Do it again!”

It’s easy to see why people like to be around Wil. He is quick to laugh, and is always open for a hug. He offers a genuine smile that finds you smiling right back on your hardest day. He accepts everyone, and rejects no one. How many people can you say that about?

So, why are our kids with Down syndrome not so fully accepted? Because, our being accepted for ourselves makes it easy for us to accept others. The challenges that come with Down syndrome, the differences, well, those are not so easy to understand, and therefore, accept.

Every time I sit down to write about Wil, I am faced with a certain dichotomy. If my goal is to foster acceptance, then how can I do that when I talk about Wil’s differences and challenges? All kids have challenges, true, that is a quickly and regularly accepted fact. However, Wil, and his friends with Down syndrome are instantly slapped with a label that says, “YOUR LIFE WILL NOT BE WHAT YOU EXPECTED.” And, therein lies the catch. What we don’t understand, we fear.

Generally, in life, we have a broad general view of what we are going after, of what our lives will look like, or want them to look like, and how our children will fit into that picture. Then, this big, unexpected “EXTRA” doesn’t fit in that view. It’s somewhere in a distant periphery of that view, and well, the unknown has never made anyone feel particularly comfortable.

In my writings, I bring that periphery up close and center. Photos of Wil playing, laughing, sharing, enjoying life and us enjoying life with him. Celebrating our child, celebrating the unexpected.

Yet, that is the easy part. That is the part that invites you in, that warms you and makes you feel comfy cozy. But, I haven’t invited you there fully yet. I’ve invited you to the easy part. And, as a friend once said to me shortly after Wil was born, “You will be a great mom to him. He will have a good life, and I’m happy for you. I’m just glad it isn’t me.” This friend meant well, and it was intended as a compliment, but that last sentence reveals the place I haven’t been able to reach. How do I draw you into this periphery where no one wants to go, much less pay attention to? How do I ask people to overcome their fears when I was so scared to go there myself? How do I ask people to look beyond Wil’s cute, sweet face, and also appreciate his challenges, his differences, to attain a full acceptance of him and his friends with Down syndrome?

How do I explain the multitude of hospital visits in that incredible blur of Wil’s first year, and though it was difficult, it is for this experience that I am instantly warmed by the immediate understanding I can detect in a doctor’s eyes, and the knowing smile in a nurse’s kind eyes. How would I ever know and even recognize the power of these seemingly simple gestures without living through the challenge? It would be impossible.

And, how do I explain meeting the therapists that innately understood Wil, and did not shield themselves with clipboards, sharp pencils and statistics that Wil needed to fit within the confines of whether he did or not? Those beautiful souls who sat down with him and asked him questions that put him immediately at ease and I could visibly feel his shoulders relax(and mine, too!)? How do these almost imperceptible experiences that are prone to fly quickly from my memory, hold to the forefront of my mind like superglue?

How do I explain the patience Wil’s sisters have learned? How do I share that even a simple trip to the post office can be a trial, yet they hold his hand, and know just how to coax him in. And, yes, there are days they are tired of being patient, and they wonder aloud to me why their brother can’t be just like their friend’s brothers. Why everything has to be different? And, then, that very same night after such a conversation, when my heart aches for them and my mind races on how to make this right, my daughters asked if they could help Wil with his homework, and once completed, jumped around the room with him yelling, “He read the whole thing by himself!!”

How do I explain sitting down at a table with my friends, the friends who I came to know only because Down syndrome brought us together. The sharing all of these experiences with one another that at one time were foreign to me, and now I laugh so hard with them at our shared experiences. This gives me strength to handle the challenges, and heighten the joys until my heart is about to burst. How do I explain the pure power of that kind of connection?

All of this runs through my head as I tickle those little feet. How do I explain how thankful I am for this simple moment? Our past moments? And the ones to come? How can I explain this without inviting you in to the whole picture?

So, come on in! The door is open wide! Kick off your shoes, that’s how we roll around here 🙂

 

One recent afternoon, I was talking with a friend and she was sharing with me her current struggles in raising her young adult son with special needs.

The experiences she shared went deep down. Places that pull and tug at our emotional center. There is so much that is not in her control, yet he is her child. Her son. Her baby. And he is struggling, which means she is, too.

Her situation requires big decisions, and they take tremendous courage because she is walking through a lot of unknown territory. She finds herself reaching, trying desperately, to find the right answers for him.

She is safe sharing her struggles with me, because, I, too, have a child with special needs. It doesn’t matter that our sons differ in nearly a decade in age, or that their needs and personalities have many parallels. What matters is we both understand the day to day challenges in raising a child with special needs that are not so easily seen from the outside looking in. We feel safe sharing the soft, raw spots deep within us.

There was a time when I used to protect myself from this kind of intimacy. It’s scary to lay yourself bare like that, because those soft spots do not have any protection. If they did, then that deep level of connection would be impossible to attain. There can be no layers. So those raw places can be abused by anger, criticism, judgement and the like. I have no doubt that those of you reading this have had at least one experience of getting punched right in the soft spot, and it was so painful, the knee-jerk reaction was to cover it with stand-offish layers of protection.

I used rationalizing words for this layering; “I am an independent person.” “I can handle this by myself.”

I went on, being “independent” while I built layer upon layer over those soft places that could so easily bring pain if exposed, unconsciously denying myself that deep connection with another.

Then, Wil was born. If someone tells you that finding yourself unexpectedly raising a child with special needs does not knock a marriage off kilter, even a little bit, then let them know their pants are on fire, because they are a liar.

Wil’s diagnosis was a knock to the foundation our marriage stood upon. Matt and I were teetering in our own very different positions and perspectives on what this diagnosis meant for our son, our family, our marriage, and ourselves.

We needed to do a lot of repositioning and adjusting in our own belief patterns to get our marriage back in balance again. But that meant opening up our soft spots to each other, and at first, they were just too raw. They were too susceptible to pain, and neither of us was willing or ready to go there.

So, we soldiered on, business as usual. I continued being “independent.” I am a people pleaser and a take charger by nature, so that is exactly what I did. Matt is a thinker, his nature is to take things in a slow and methodical way. And so, he continued his slow and methodical ways of processing this new change to our family, while I jumped into a support group, scheduled therapies for Wil and buried my nose in books about Down syndrome. It was a nice mix at first. He kept me calm, and helped me quiet that demon who used to beckon constantly in my ear, Are you doing enough for Wil? Will you ever do or be enough? And, I gave Matt the space and time he needed while he worked to provide for our family of five.

As I became more involved in all things Wil, Matt and I were growing further and further apart in our level of acceptance. He was working every day, so didn’t have the opportunity to be with Wil the hours that I was, meet the people in the support group, and form strong connections with these new friends who innately understood daily life with Down syndrome. I found myself not only accepting this life, but fully embracing it.

The further apart we grew in our acceptance, the more we were feeding the proverbial 500lb gorilla in the middle of our marriage.

I felt that pressure of the growing gorilla, the heat of it, but I didn’t know what to do. I was doing what I knew how, I was giving Matt space and time, and all I was doing was creating space between us. This became so painful within me, that I talked to Wil’s social worker about it. I bared all my soft spots to her. She was a safety zone for me, and I also knew, she would be completely honest with me. She listened carefully, and gave me that steady, yet caring and understanding look she has. Then she said, “You are protecting Matt from Wil.”

That made such complete sense that it stopped me in my tracks. How could I not have seen that? But, by that time, I was too far in the forest to see the trees. Wil’s social worker pulled me back, and gave me some much needed perspective.

I realized, in that moment, how that pushy gorilla made his way into the middle of our marriage. He didn’t start there at 500lbs. He’s much too sneaky for that. Every day that Matt did his thing, and I did mine, protecting our soft spots from further pain, we tossed bones to that greedy monster, until one day, unable to bear the heat and overbearing pressure anymore, I stopped and stared in awe wondering how the hell we allowed this 500lb stinky mess into our marriage.

When the social worker hit me with that reality, I was faced with my part in feeding the gorilla. Once I clearly accepted that reality, I decided to take responsibility for my part in it. I wasn’t going to beat myself up, there really is no right or wrong here. We do what we know how to do best, and now, with my new perspective, I knew how to do better. And, that’s what I was going to do. But, that would mean I had to peel back those protective layers. I would have to share those really raw, and still painful soft spots. That was so very, very scary to me, because I didn’t know how he would react. I’d be wide open for more hurt, but things could not go on as they were. I needed us to be back in balance desperately, and the only way I could do that, was to go to that really deep place of connection with him, and back it with pure love. Pure love for myself, for him, for our son, and our entire family.

When we had that talk, he didn’t walk away, he didn’t attack that soft place I opened to him in fear and anger, he, instead, found a safe place, and he opened up, too. We connected, deep. It was a complete game changer for us.

Matt and I can now both dive to those  raw places whenever we feel the need to, and feel safe doing it. We have a stronger and tighter connection than we ever did, and that brings a great sense of inner well-being. It’s our new balance. I’m not implying that our marriage is perfect, but I don’t care too much for perfect anyway. Perfect has a lot to protect so it simply can’t travel to those depths.

We are still imperfectly us, only now we know better, so we do better, and we do it completely primate free 😉

This morning, I took Elizabeth to the orthodontist. It was a first consultation, so everything was very easy going and pleasant. Her orthodontist shares the name of Elizabeth’s twin sister, Katherine, and when I told her, she replied that we have royalty in our house. A queen and a princess. I laughed, and said, “Would you believe we also have a prince? Prince William.”

“We do, too!” She said. “He is my little prince. He was born prematurely.” We talked briefly about her William, and then eased back into orthodontic talk surrounding Elizabeth.

As we were leaving, I mentioned that my William would be coming to see her soon, as well. She asked what she would be seeing him for, and I mentioned a cross bite and the need for an expander, because his mouth plate was too small for all of his teeth. I told her he had Down syndrome, so these issues were quite typical, and she nodded knowingly and asked how he did at the dentist. I told her it was a big struggle at first, but the last two visits, now with Dr. LaRock, had gone quite smoothly. Great, she said, maybe I could bring him in on Elizabeth’s next visit to get him comfortable here. Then, she shared with me that her William also had learning issues, due to his prematurity, but he had a great teacher this year, the same one her other son had the previous year, so she was much relieved. I replied to that, “Yes, I understand. Every year, it’s like starting at zero. It’s a wonderful relief when you don’t have to.”

“Ah, yes!” She nodded in agreement, “It’s exactly that, isn’t it? With all of his academic issues, I just want him to be happy at school.”

There are so many pieces that go together to make that work, the parents, the siblings, the IEPs, the teachers, the assistants, the special ed director, the therapists, the peers, and the laws to be upheld if not being adhered to. I have found, in this journey with a child with special needs, the explaining can be freaking exhausting. When I happen upon a doctor, or a school administrator, that just gets it like she does, I know I have struck gold.

The royal woman who shares my daughter’s name will undoubtedly be Wil’s orthodontist.

Not too long ago, I was having a very trying morning with Wil. I left the house out of sorts, to teach a bootcamp class. I pumped myself up on the way, and taught the class in high spirits, but underneath that morning was still tugging on me. After class was completed, and we all dropped on the mat to stretch, I happened to sit down with two other mothers who have kids with special needs. We talked about typical everyday things, slow and easy, enjoying the reward of the down time after a tough class. I could no longer ignore the downward pull I was feeling, and as the class emptied out, and we still sat there, foam rolling our sore muscles, I shared that I was frustrated from my morning, and I was having a hard time shaking it. They immediately gave me a nod of understanding, just like the kind doctor earlier today. They got it. No explaining needed. They opened up, began sharing some of their stories, and though our children all had different disabilities and challenges, the underlying emotions were the same. We formed a bond, and I knew, these friends were golden.

A diagnosis immediately places you in a very vulnerable position. It can be very scary at first, it’s uncharted territory for you. But you meet people who understand, who get it, and they help you along the way when you need it. You learn, and you grow, and begin to understand how golden that innate understanding is. I have lived and I have learned. There are people who have dove in and criticized, how I “Should” be doing things this way, and “should do” that and judged every little move I made. But, the funny part is, not a single one of them has a child like Wil. They are the sideline critics, and I no longer have time for them. Their words are loud, but hold no meaning. There is a quote that says, be vulnerable, then put up a big fence.

Then, there are the golden people. When I started opening myself up, so many amazing coincidences have happened that invited them into my life, for which I am eternally thankful.

In this life, I have found that unity and a sense of community is everything. These friends are my gold, they are my shine. We serve to brighten one another. And, if you are one of those that enjoys throwing stones at things that shine, I hope you enjoy the view of our big fence.

Yesterday, after teaching a morning bootcamp class, I zipped over to the grocery store. The plan was to make it a quick trip. I had a load of things I wanted to accomplish before my afternoon class.

Cool, I thought, the parking lot is near empty, I pulled into a front parking spot, and grabbed myself a big cart (I established a personal rule of no small carts, no matter how small the trip, after the very embarrassing small-cart-incident of unexpectedly hitting a dip in the parking lot, the abrupt stop of the cart almost sending me barreling headfirst, in plain full parking lot view, right over top). The big cart and I safely and efficiently cruised through the aisles, finishing in record speed at the check-out line, with only one woman in front of me, who was already swiping her credit card. Score!

When it was my turn, the woman behind the check-out counter smilingly asked her required questions: Had I had found everything ok, and how was I doing? We then made typical check-out counter small talk as she swiftly swiped my items; what a beautiful day it was, how warm and sunny, and so on. Friendly, yet impersonal. And, I probably would have left the store in about 3 more minutes, with a lift to my step from the ease and friendliness of the experience, but without much further thought as I moved on with the rest of my day. Instead, I turned my head to the new sound of voices entering the quiet of the store.

A small group of kids, all with varying special needs, and their educators, were walking in and grabbing carts. There was a lot of excited chatter amidst the distribution of carts, and once a cart was in hand, a child and their educator were happily off on their shopping adventure. I spotted the back of the blond head of one of Wil’s friends, Nick, as he expertly made his way down the aisle with his cart.

The check-out woman saw me looking their way, and said, “That is a special needs class from Saline schools.” To which I replied, “One of those boys is my son’s friend. They both have Down syndrome. I was hoping to catch his eye, but he went off shopping in the other direction.”

“Oh,” she said, “I was a para-educator for 20 years. My son also had special needs. He went to school at Highpoint (a school for kids with a higher level of needs).” “I know Highpoint,” I said, “I used to work at the WISD and my neighbor recently retired from there.”

“When I started teaching,” she told me, “they were just starting inclusion. I believe in inclusion, but it’s not right for all of our kids. My son needed to be at a place like Highpoint.”

“I understand,” I said. “I’m so thankful for the inclusion my son has right now. We have not had to fight for it, he naturally receives what you had to fight for those years ago. Yet, I also understand what you are saying about inclusion not being right for everyone. Though my son enjoys and benefits from inclusion, I found in certain subjects, like math, the most effective place for him to be is in the resource room. Each child is very different.”

She nodded. “My son was completely typical, then he almost drowned when he was 2 ½. After that, he had multiple special needs, too many to be at a regular school with inclusion.”

She paused, then looked me right in the eye, I could tell she was deciding if she should share something with me, then she did.

“You know, there are some things worse than dying. To have a typical child and then…”

My heart went to the pit of my stomach. I looked at her gently, and all I could do was nod. What words are there for something as heavy as that?

“My son did die, he was only 10 years old. I have 6 children, so, well, that helps.”

But, what can truly help? She did what she could to cope. She helped other parents who had kids with special needs as a para-educator. I have absolutely no doubt that many parents found comfort in her knowing nods and compassionate words when she was responsible for the care of their child each day. I also have no doubt that those kids under her care received her best. You don’t go through what she did, and do the work she did for 20 years if you don’t care deeply about the purpose of that work.

We talked a little more, but by then my items had been checked and bagged, and a man was waiting behind me in line. It was time to go. I told her it was really good talking with her, and we wished each other a good day. I know I will make a point to find her line again.

Back at my car, filling it with groceries, I thought of our conversation. It was heavy, yes, but also, I felt a huge sense of gratitude for that time with her. Gratitude that she chose to share her story with me so that I could connect with her and learn from her in my very own life experiences.

Good days are good. The front parking space, the cruising through the uncrowded aisles, the smile and friendliness of a check-out worker, and the sun burning away the clouds and warming the air. They lift us, they carry us to a certain point, and they even spread, but they don’t run very deep, because they don’t stick. We catch them and hold on to them when we can, and enjoy them, but they are unpredictable and fleeting. They come, and they go.

Stories shared and connections made as in the one at the grocery store have staying power. They stick. I am never left the same after conversations like that, and it’s a wonder, how many I have had just like that since Wil has been born. And, it’s in these very unlikely, common places where they happen.

Last Saturday, I was in the hallway at Katherine’s karate tournament. I happened to put on a necklace that morning that our Down Syndrome Support Team sells. They are beautiful, handmade necklaces, and nothing about them says “special needs” except for the fact that they are sold at our Buddy Walk each year, the proceeds going to our support group. In the crowd of people walking back and forth in that hallway at the tournament, a blond woman stopped, pointed at my necklace and said, “Buddy Walk! I have about 5 of those! I love them, and yours is especially beautiful!”

“Thank you,” I said, “do you have a Buddy you walk for?”

“Oh, lots of them. I’m a special education teacher in Saline.”

We shared a smile, and went on our own separate ways down the busy hallway.

A passing friendly comment on a piece of jewelry in a crowded public place, but it will last longer than the smile she gave me. That compliment drives deeper, because it carries with it a common purpose, a common cause, which we both innately understand in those few words we exchanged.

At a birthday party I went to at a lake, where Wil was happily splashing around, a woman walked up to me, and said, “Your son reminds me of mine when he was your son’s age. So blond, so sweet. I miss him at that age.” And, then we shared stories like old friends reconnected about our kids and our lives, except we had only met that very moment, and our only known connection was Down syndrome. I learned so much about the experiences Wil could look forward to in her stories, and she was able to look back and relive some of her son’s youth.

I can recount many such stories, in restaurants, walking down the street wearing my Buddy Walk shirt, and other such every day places. I believe that I am so easily approached with these experiences is not for any other reason than that I am open to them now, when I wasn’t before. I did not have the “WIL”lingness those years ago that I do now.

Last night, I went to bed overflowing with gratitude. Not because of a front parking spot or the ease of my day, but because I now have opened myself to the gift of looking underneath the surface shine. Diving down deeper, past the pretty and shimmery surface, down through the murky and the messy, the deeper of the emotions, and down, down, down, down, to uncover the treasure chest of connection. That is where the staying power to fulfillment is. That is what sticks.

Last night, stretched out next to Wil in his bed, having just finished reading him his bed time story, I pointed up to the pieces of paper taped on the wall next to us.

“Where is the beetle?” I asked, and he pointed to the picture with a colorful crayon drawn bug.

“I did that one!” He said.

“Yes, I love her purple head.” I said.

“And, orange feet!” He replied.

“How do you like Ms. Wier?” I asked (Ms. Wier is his new resource room teacher).

“I like her.” He said.

“What did you do with Ms. Wier today?” I asked.

“I don’t know.”

“You mean, I’m thinking?” (A great technique I learned from Wil’s summer speech therapist.)

“Yes, I’m thinking.” (Ha! It worked again!)

“Ok, what’s ONE thing? Just one thing you did today with Ms. Wier?” I asked. “Did you count dots? Go over to the bean bag room?”

“The Fall book!” And, then it all started tumbling out.

I laid there, listening, so thankful. So thankful he could now tell me these things, and so thankful he is with people who love him during the day. People who want him to learn just as much as I do.

And, sometimes, I also feel an overwhelming sadness come over me during these same moments. I think of the sweet babies with Down syndrome in the orphanages overseas, or even children here in the US, who were given away, just because of their teeny tiny extra chromosome. Children who have no one to ask them how their day was, children who are not told they are loved. They fall further and further behind by the day, proving the statistics that their parents so feared, simply because they are not given the love, the time, or the opportunity. As these thoughts run through my head, I look, in close up view, at my beautiful boy’s face, his sweet soft pale skin, the pink cheeks, that bright smile, and his wispy blond hair. I smooth his hair back and say to him:
“You are so very loved Wil. I love you so much, I want you to know that.”

He smiles, and says, “I know!” And he goes right back to telling me all the things he did with Ms. Weir that he “didn’t know” just a few moments ago.

When I have these happy/sad moments, I think back on Mother Teresa’s quote, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

Last Sunday, our Ds support group had our annual Buddy Walk. It was a beautiful, sunny day, the energy was high and the support for Wil and his friends with Down syndrome was no less than amazing! Wil and his buddies with and without Down syndrome held hands on the one mile trek, parents snapped pictures on the playground fixtures along the way, everyone devoured pizza, enjoyed cotton candy, participated in crafts and danced together. There is no fear of those 47 chromosomes on Buddy Walk day. In fact, those with the extra chromosomes are celebrated! And, the best part is, that celebration of our kids does not live only on Buddy Walk day. It spreads far and beyond. We carry that love with us, and have the power to influence others with that love; it is a stone cast across the waters creating many ripples.

I will still have those happy/sad moments lying next to my boy in the times to come; the great waves of gratitude, and the tides of sadness for the sweet souls who have been so sadly left behind. But, maybe, just maybe, for all of those that love my son and his friends, their love will spread to reach a mother in doubt at just the right time. And, that one mother, having been given the opportunity to see her child’s extra chromosome in a new light, will feel her fear dissipate. Over time, as her love grows, she, having known doubt, will become a stronger advocate, having even more power to focus her light on those mired in fear and doubt. And, so the stone is cast across the waters.