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.
“Ok, Wil, here is your sandwich.”
“Uh, oh, there is a bite missing! How did that happen?”
“Awww, Mom, it was you.”
“Me? Huh, no way!”
“It was definitely you!”
“Definitely” adverb. Without doubt (used for emphasis).
Definitely is not a word essential to getting a message across. When kids start speaking, they give you the one or two essential words. “No!” “Hungry!” Soon, they start adding 2-3 essentials together. “Pick me up!” “You go!” “Wake up now!” And then they start peppering in the extras. No big news here, but it’s still darn exciting when those first words come, and then the second words, and soon there are short burst of sentences. By the time our kids are adding in the extras, we are on to bigger things.
Unless your child takes longer than others to put those essentials together. Eliciting one essential word may take multiple techniques to draw out. But here’s the bonus: With every single step toward a new word your perspective starts to change. You are so honed in on what is happening, the essential words become the extras. Words like definitely aren’t even on the radar. If you can just get one word, your whole world will turn upside down. And then 2 words, did your heart just burst in a million pieces for 2 words? Well, yes it did! You begin to notice every little change in sound, a rise or dip in tone, the process in formation of each blossoming word. And with all of that said, some words just bust out of your child’s mouth as if he’s been saying that word effortlessly for years. They will stare at you in awe as you jump up and down with joy for what they have no idea!
Wil has been speaking in sentences for quite some time now. We’ve moved on to working on initiating conversations: “Do you want to play Uno?” (be weary of accepting this invitation, the kid throws down Wild +4 cards with no remorse). Even so, I still feel a deep inner joy each time he spouts off a multi-word sentence. He’s started peppering his sentences with adverbs and adjectives now. They are quite impromptu. While most of his sentences contain the essentials, he’ll throw a little impromptu surprise party on an otherwise typical day saying that it was “definitely” me who took a bite from his sandwich. Then he walks off with his sandwich while I’m doing cartwheels across the kitchen floor.
“Down syndrome.” noun. Essential for happiness (emphasis on perspective change).
At a stoplight in Chelsea, Wil squinted down on my phone and scrolled through Amazon Music to find his newest favorite, “Down to the Honkytonk” buy Jake Ouwen. He found it, hit Bluetooth audio on my radio and turned the dial up loud. I discreetly took it down a notch with the volume on my steering wheel.
We had just left Wil’s audiology appointment. His left ear tested just below normal. His right ear test came back with a big dip with higher pitched noises. The results are questionable whether the dip is due to fluid in his ears. The next step is to drain the fluid, then have his ears checked again. Nothing earth shattering, all things we can work with, just more appointments to juggle. As I pondered the possibility of convincing him to wear hearing aids while wearing his glasses is still a work in progress, I saw Wil’s arm raise up in my peripheral vision. I looked over to see Wil waving while never breaking stride from dancing in his seat.
I followed the direction of his wave to a gold pick-up truck also waiting at the light in the neighboring lane. The pick-up was just ahead of us so we were parallel with the truck’s bed. Out the truck’s back sliding window was a boy of about 15-years-old. He had his arm fully stretched out of the window waving enthusiastically at Wil with a friendly smile.
After Wil gave a few waves he got right back to the business of singing and dancing in his seat. The boy and I shared a smile at Wil’s energetic singing and soon the light changed. We gave a quick wave and were off in our own different directions.
As I turned left onto M-52 headed home, I joined in with Wil and we belted out together, “I go down to the honkytonk, I go down to the honkytonk, I go down to the honkytonk
I go down to the honkytonk!”
There is a certain discipline to be found in the marathon training’s easy run. On the surface it looks slow. And it is. But do not mistake that slowness for ineffectivness.
Underneath the slow run, things are happening. Essential mitochondria is building in the body to supply much needed energy for the distance. At one time I cringed as my Garmin posted my easy run times. But now I know how important they are to run the distance. Not only that, my body stays fresh to meet the demanding paces on essential speedwork.
I can’t compare myself to those training for a 5k, 10k or 1/2 marathon. All of my training points to the distance. So on easy days, I let them fly by and stay in my own lane confident in what my body is doing for me. I enjoy these easy run days for an entirely different reason, as well. They compare so beautifully with raising a child with special needs.
Wil’s typical peers are the 5k, 10k and 1/2 marathon runners. They move at a much higher speed than Wil. All the races they run are equally important, but differ in their strategy. Wil’s is an endurance race. A race that requires a build-up of progress over time. What may not be as immediately seen on the surface, is not to be mistaken for a lack of all that is building up over time behind the scenes.
So while Wil’s friends fly by at their own speed, we are doing the easy run, building up progress over time. We stay in our own lane, wave at those that fly by, knowing we are exactly where we are supposed to be. Building, growing, strengthening and fully capable of handling the long, winding and scenic road ahead.
While Wil’s peers are doing 12-year-old things, he will stop in his tracks for Doc McStuffins. Currently, we are juggling 12-year-old hormones with younger ability levels. This gap will continue to grow. This juggling act can be frustrating and even a bit isolating at times. But you go out and find the people you need to find to surround yourself with. Who lift you up, and you do the same for them. You reach out and you reach up and always, always find a way to look up and rejoice. This morning in the car on the way to work at 4AM I repeated over and over, “Rejoice in this day! Rejoice in this day!” Sometimes I feel crazy doing that, but the high emotions I get from it are second to none. And suddenly that big gap is A-ok.
Wil does things his own way. If I didn’t live the life I do with him, I would not be filled with the joy I am when I see pictures such as this. As the gap grows between Wil and his peers, Wil experiences his own kind of freedoms. While certain delays hold him back, certain freedoms are also more open to him. He doesn’t play by all the same rules we do. Not because he’s rebellious, but because in his delays, he also experiences greater freedoms. To be truly, unabashedly, utterly himself. Climbing to the top of the table to express his art. May we all be so free.
I read the above comments in an article recently. It hurts to read such comments. It hurts deep. It hurts because I know the truth and I can’t get the truth out fast enough. Whenever I believe we are 2 steps ahead, I read comments like the above and realize we are still light years behind.
Here is the problem: We are wired to find the easy way. And we want perfection. Why? Because we believe perfection and ease will bring us happiness. No, not happiness. Let’s go a step further. We think perfection and ease will bring us lasting fulfillment. An ever-present joy that fills us up and takes away all those empty and hurting places within us. We are pleasure seekers by nature. The tough part is, pleasure only lasts so long.
But here’s the solution. Growth through our challenges and giving of love. These are what bring fulfillment, and they are not stagnant. We don’t reach a peak, and fulfillment is there. It’s an ever-growing and ever-loving and ever-giving process. How do I know this? Raising a child with Down syndrome. And guess what? He is not “perfect” and he’s not “easy.” He is the so-called burden. A woman I know who was recently having her eggs harvested said directly to me that she didn’t want the “abnormal” eggs; the eggs that may produce a child with Down syndrome. Surely I understood, she said. Meaning, I knew what this life of raising a child with special needs was first-hand. I responded, after my shock, that surely I did not understand. That having a child with special needs was the best thing that ever happened to me, even though I didn’t realize it before I experienced it. When, oh when, will we get over the stigma that perfection is where it’s at? When we will get over the Darwinian aspect of survival of the fittest? When will we finally place the greatest value on lifting one another up as true success in life? If you look back at our greatest leaders, spiritual and otherwise, they did not seek perfection or ease. They took on challenges with vigor, sought to bring growth to society by lifting others to higher levels backed with love. When will we realize that not our perfection, but our differences give our lives a much deeper sense of meaning and fulfillment?
So many before us have fought hard for the rights of our children with 47 chromosomes. Because they knew not the burden that is so heavily spoken of, but the love our kids have and bring to our lives. They know from first-hand experience, not from those who surmise a burden from the outside looking in. We do not fight for the “burden.” We fight for the value of kids with Down syndrome. We fight for giving. We fight for growth. We fight for acceptance of all. When will we rise above our desire for perfection, and instead realize how powerful we can be when driven by life-giving love?
Our friends with Down syndrome are abound with love. Beyond the capacity I knew was even available until I experienced this life first-hand. I will not deny that I do need to give more for Wil. As a commenter said, it is 24/7. But here’s the thing that they missed: the smiles are not forced, and I’m not forcing happiness on anyone else. In fact, Wil’s kind of joy is the most natural experience there is. You should see his eyes light up when he hears his favorite song and starts dancing on the spot. You should experience eating chocolate ice cream with Wil and try not to hum “mmmmmm” along with him the entire time. I’m telling you, you can’t help but rejoice over the smallest things in life a million times a day in his presence. The little joys that lit you up as a child all come cascading back and make you feel that special kind of alive you thought you once grew out of. There is no force, there is only the natural feeling of joy and companionship that is innate in all of us. Wil hasn’t forgotten that, where many of us have in our pursuit of perfection.
Of course, the argument could be made that those moments of joys won’t pay the bills, or take away the therapies and the doctor visits and the other challenging pieces. But here’s the thing, it’s not the burden you may think it is. I have met the most amazing, proactive people doing the things I do for Wil. The people involved in these endeavors are proactive leaders filled with just as much vigor and love as the life-changing leaders I mentioned above. But they fight a closer to home battle. They fight the stigmas we face in every day life. They fight for inclusion in schools which has proven to be beneficial for ALL kids involved. Inclusion will overcome many of the beliefs in the comments you read above. Kids who are in inclusion schools know our kids with special needs for the valuable individuals they are. Also, the Buddy Walk walks I have been on, the marathons I have run for National Down Syndrome Society, and being involved with the parents that champion for their kids. They say you rise to the level of your peer group. Well, I’ve got a darn miraculous and proactive peer group. They are true leaders. These are people that lift me up and help me be a better person in this life, so I can do that same for others. I would not know this part of life without having a child with Down syndrome.
The burden is not in raising a child with Down syndrome. The burden is in what I was missing in not knowing the miracle of raising a child with Down syndrome. I was missing out on so much I didn’t even know it. Without awareness, we live in ignorance. What a shame to allow fear to close ourselves off from truly knowing our beautiful friends with Down syndrome.
This morning about 7:15AM, as I was about to head for home from work to take the kids to school, my cell phone rang.
It was Katherine. Uh-oh. I knew immediately Wil wasn’t cooperating.
“Mom, Wil won’t get out of bed. When he does, he just sits on the floor and won’t do anything.”
As I’ve mentioned numerous times in previous posts, there is a special kind of stubbornness reserved for our kids with Down syndrome. There is no amount of force that can enourage forward momentum. In fact, even an ounce of force can set you back 10 feet from where you started.
Space and time to make a new choice is where he needs to be. When we need to go somewhere, I ask him to start packing his bags with the items he wants at least a 1/2 hour in advance. That way he is in control of his choices and things move very smoothly. This morning, however, more time was evidently required. I knew if Katherine were to make Wil get dressed, he would fight back and that would extend into a very uncooperative day at school.
“Ok, honey, let him have his space. Open up his blinds to let light in and turn on PBS Kids. That may get him moving. Open the back door so he can see how nice it is outside. Let him know what lunch is at school today. It’s one of his favorites, chili cheese dogs, but he can have it without the chili. If he refuses to cooperate, don’t push, you do what you need to do to get ready and I’ll take him to school after you if that’s what I need to do.
“Ok, Mom. Thanks, bye.”
When I arrived home, I was informed that Wil did in fact get dressed, but he still wouldn’t eat breakfast. He went outside to play. Going outside to play was a good sign. At least he didn’t try to hole up in bed.
When I arrive home on the days I work early, which is typically 2 days a week, we only have about 5 minutes until it’s time to make our way to school. Katherine and Elizabeth are professionals at getting Wil up and running. They know the mix of encouragement and push that works. When I come home and Wil is ready to go. They rock! He’s eaten breakfast, is fully dressed, and his backpack is on. At 12-years-old, he’s quite self-sufficitent in getting dressed and his backpack items together, but the girls do need to wake him up, urge him to get dressed and decide on what he wants for breakfast.
They balance this with getting themselves ready for school. And they do it as a matter of routine. I’m so very proud of them and let them know it. It’s just what they do and they do it well. And it’s great for Wil to have someone other than mom around. So when Wil has the types of mornings he was having today, I never want to put extra pressure on the girls. The good mornings far outweigh the “Wil-full” mornings thanks to their help.
When I walked in the door, the girls were ready to go but there was no sign of Wil.
“Katherine, didn’t you say Wil went outside to play?”
“Yes. He went out the back door and then he was playing in the garage.”
“I don’t see him. Could he have come back in?”
“I don’t think so. I was in the kitchen the whole time.”
“Ok, I don’t want to make you late, but we can’t leave until we find him.”
I ran down to the hill to our side yard, thinking he might have gone down there to play. No sign of Wil. I went in the walkout basement door and searched the basement. No sign of Wil. I ran back upstairs to find Elizabeth looking under beds and through all the bedrooms. No sign of Wil. Katherine was walking around outside and still nothing. Elizabeth went outside and I did another run through the house. No Wil. I went back outside to hop on the 4-wheeler thinking he may have walked back in the field. There is an area he loves to pile sticks and it’s not easy to see from the house. Just as I was about to drive out to the field I heard Elizabeth yell, “I found him!”
He had climbed in the hatchback portion in my car. I had blankets in there for cold soccer games. He was hiding under one of the blankets.
“Mom! Hide and seek in the morning!!” He was full of mischief and delight. It was so darn cute, but oh my gosh! Heart attack! I was a jumble of emotions. Obviously top on the list were a mix of relief washing over the high anxiety. I was also upset with him for his sisters, who beyond getting their young teenage selves ready in the morning, also take great care with him. And he decided to vanish and in the process make them late for school.
“Wil, do NOT ever do that again! We were very scared because we couldn’t find you! No hide and seek in the moring. Only hide and seek when we know we are playing the game.”
“Now get in your seat, we need to get your sisters to school so they are not late. I want you to apologize to your sisters. Then we will come back home and get your breakfast and go back to school.”
Fortunately, we made it to school with 5 minutes to spare. It wasn’t the time I was concerned about so much as the fact that I do not want the girls to build up resentment toward their brother. They have grown into very compassionate and patient people, and the pros outweigh the flipside every day, but I always want to be sure the scales keep leaning in that direction for them.
When Wil and I got back home, I cooked him up two salmon burgers (thanks Costco!). He has never liked traditional breakfast food. A cup of almond milk (he prefers that over cow’s milk) to wash it down, and we were on our way back to school.
He was in much better spirits, so my hope is the slower morning will make way for fewer stubborn moments at school. On our back to school, he was singing “Honeybee” by Blake Shelton.
“Sounds like you are ready for a great day, Wil!”
“Yeeeeeah. Monday’s are hard, Mom.”
“I know, Wil. But you can do hard things!”
“Oh, Mom!” He doesn’t know how to eye roll yet, but boy could I hear the eye roll in that sentiment! Teenage years, here we come!
So now all 3 kids are off to school. Two with an almost late start and one with an hour late start. I’m almost about to head back to work now. As I think about this morning, I think about how different each family’s morning is. How we all figure out to keep our balance amongst the individual lives we lead. We do it our own way the best we can. We plan ahead, give ourselves extra time, try new tactics, but sometimes the best laid plans get laughed it and hidden under the blankets in the back of a hatchback. Fortunately, even on Mondays, we can do hard things! Onward!