Savoring and Surviving


Last night I was well reminded of the time back when the kids were little…
I brought home 2 leftover Yahoo chocolate milk drink boxes from a meeting. I gave one to Katherine and one to Wil (Elizabeth declined). Elizabeth likes to help me make dinner so we set out to do that. Elizabeth got out a large pot, filled it with water, added a pinch of sea salt and got it to a boil, while I put a frypan on the stove, and put on some chicken sausages. All was under control so I told Elizabeth I was going to run downstairs to the laundry room to switch the wash while she took care of the noodles we had just put in the pot.
When I entered the laundry room I stopped in my tracks. There was spattered Yahoo chocolate milk everywhere. I mean everywhere. It was spattered high up on the cabinets almost to our ceiling (which is 9 feet high). It was spattered across the top of the wash machine and the dryer. It was spattered across the neatly folded clean clothes that now would need to be re-washed. And when I looked down I saw small puddles of Yahoo chocolate milk in the laundry sink. I was mesmerized both by the trajectory of this little drink box as well as it’s quantity. And I immediately knew the culprit. Wil. I could see what Wil had tried to do. He tried to squirt the box empty into the laundry sink and clearly it had gone awry. Actually, awry for me who would be on clean up duty. Wil likely had tons of fun when he realized what this little box could do. I called him downstairs to the laundry room. “What happened, Wil? Did you try to empty your drink in the sink?”
“Humpf,” he replied with shrugged shoulders.
“Wil, come on. It’s ok if you didn’t want it. But you need to ask me if you need help. This is everywhere. Even on the clean clothes. Here’s a cloth, let’s clean this up.”
I wet our washcloths and started wiping everything down. Once the top of the dryer was clean, I grabbed the laundry from the dryer in a heap, threw it on top of the dryer, then pulled all of the wash out and put that in the dryer. Katherine came down to see if we needed help and I asked her to check on Elizabeth to see if she needed help. She ran upstairs, then Wil and I loaded the no-longer-clean folded clothes in the wash machine. What seemed like seconds later, Katherine yelled down the stairs that Elizabeth needed help NOW. I ran up the stairs two at a time, and found the cheese tortellini had over-expanded the pot and Elizabeth was holding a bowl full of half-cooked tortellini she pulled from the pot while other escape artist tortellini slid down the side of the pot and stuck sizzling on the stove top. The chicken sausage I had started was developing a char. I gave the sausage a quick turn, drained the tortellini, and by now Wil had made it up the stairs and pulled out his chair at the kitchen table. He must have grabbed it crookedly, because the maplewood chair had somehow caught an angle and it banged to the ground making a decent-sized scratch in the hardwood floor on it’s descent. Wil not liking big, sudden noises stood there in shock, hands clamped over his ears, tears welling in his eyes.
The tortellini taken care of, the chicken sausage turned, and the chair righted, all three of us instantly went to work on calming Wil because he doesn’t always come back from these loud noise experiences easily. Elizabeth had the magic antidote: she promised she was going to make brownies after dinner and give him the first one. Tears instantly replaced with a big smile, “thanks Lizabefth.”
We all sat down, the girls and I looked at each other, took a deep breath and started laughing. “Phew, now that was a whirlwind! Thanks for all of your help! Do you know, when you guys were little, every day was like this. You three were always going in three different directions. It’s strange. I remember that so much, but I forgot how it really feels. You make life so easy now, you are so independent.” Then we went on to share stories about when they were little.
It’s kind of ironic, now that my kids are older, this time is when I truly savor those earlier days. I look back with a smile on my face at the craziness of it all. Of the cuteness, the sweetness, the pureness. But, the true feel of that whirlwind has faded over time and every once in a while is brought back in moments like tonight. How living in that time, it’s more about survival than it is about savoring. It is a living minute to minute. It is full of unpredictability and constant movement. It’s kind of backwards from how we are told to perceive it. When our kids are little, we hear time and again, “Savor these moments, they go by so fast.” As the twins are only 20 months older than Wil, this whirlwind of activity was my only constant. I enjoyed my kids so much, but savoring that time is just not the right word. It sounds much too zen, too reflective. Heck, if I had any time to sit back and reflect, I would instantly fall asleep. I remember my husband waking me up when I would sit down in the Lazy-boy and immediately fall asleep sitting up!
It is with good intentions that we are told to savor this time because it goes so fast. It really does. But, my goodness, when you are in the middle of it, it’s hard to look past the next minute let alone contemplating the notion of stepping back to savor anything. As time goes on, and the true feeling of the whirlwind starts to fade, and we actually have time to take a step back and observe, savor and soak it all in, it’s good every once in awhile to be reminded of just exactly how that whirlwind felt. So that when I see a fellow mother or father with their little multiple ones trying to hold on for dear life, I won’t wistfully say, Oh savor this moment it goes so fast. Rather, I will give them one heck of a knowing smile and say, “You are doing a fantastic job! Keep it up!”

These Smiles Are For Real

I wanted to look at some Buddy Walk t-shirt ideas so I googled Buddy Walk T-shirt images. Of course I saw multiple pics of individuals with Down syndrome; babies, toddlers, adolescents, teens, adults. Though the age range was large, I could see numerous similarities in mannerisms that I could relate to Wil. I couldn’t quite put my finger on it, and I’m not sure I even want to. I simply enjoyed feeling a connection with these individuals and their families. I cherished this life with Down syndrome even more.

Certainly, there are many unique and individual stories behind these pictures. Though I do not know these families individually, I can guess of the struggles. All of the bumpy places. Every life has bumpy places no matter how many chromosomes you have. But isn’t getting through them what makes the smiles more meaningful? Isn’t getting through them what provides the energy behind an enthusiastic thumbs up? To know we are stronger, better, smarter and hopefully gained more compassion along the way. I don’t know quite why, but many consider the hard places as what’s more “real” in life. Like if we post a happy picture that’s less “real” than the bumpy places. Oh, quite the contrary. My goodness, when the sunshine and rainbows appear, that’s what we need to let shine as bright as we can and not hold back for a single second. Because that is the deep down essence of this life. Isn’t what we all live for is to give love and be loved?

I don’t have to see every bumpy picture to know how real those places are. I already know them. And that is exactly why, when I looked at the photos of the triumphant smiles, the shared loving hugs, and enthusiastic thumbs up I can feel the strength of connection. And that my friends, is fully and deeply real.

Wil and me (2)

A “brief” moment of gratitude

When Wil was getting dressed the other morning, he let me know he was down to “2 underwears.” I told him I would take care of it. The next morning, he opened his drawer and literally started jumping up and down in excitement. “Mom, mom!! Look! My drawer is full of underwears!”

There is always something in our day to be grateful for. 🙂




What is Good?

I recently met a mother whose daughter is a teenager with Down syndrome. Their family recently moved and now are in a different school district. I asked her how her daughter was doing and if the schools were good for her. She responded, “Good? Well, I’m not sure what that is anymore.”
We went on to talk about what “good” means for our kids and their progress over time. Our kids are doing good for themselves, but that looks far different from what we believed they would be doing at this time in their lives.
Like most mothers, when our babies were born, we had big, wide-open dreams for children. When you discover your child has special needs, your dreams for them turn into a warrior call. They are almost demands, understandably so. Doors are shut from the get-go. Before your baby is even hours old, you are given a laundry list of all the things your child will not do. Well-meaning friends say words of sympathy when congratulations for the birth of your beautiful baby would be much better suited. And the not so well-meaning say even worse. So it’s not hard to understand how our dreams for our children become a warrior call. “My child will go to a typical school!” “My child will drive!” “My child will go to college!” “My child will live independently!”
As this fellow mother and I talked, she said it is now evident that her teenage daughter will not be able to drive, live independently, or receive a high school diploma. I shared that Wil will not be receving a high school diploma, and likely won’t drive. Though I believe he will take adapted college courses and live somewhat independently. We will see as we progress over time.
We talked about what a shock this current reality would be to our earlier selves; if back when our children were babies we could look in a crystal ball and see this future. And we both sent our thanks to the heavens there is no crystal ball. Ironically, the crystal ball is exactly what would zap the magic right out of this journey we are on.
If you asked me right now how Wil is doing, I would answer that he is doing good and I would mean it. He is not doing perfect. Who is? In fact, I just received a call from school today that he was sitting in the resource room refusing to move or work. But when the teacher called me and put me on the speaker phone, I talked to Wil and we all were able to reason with him to get him off the floor. It doesn’t always work, so when he decided to cooperate, the inner warrior call inside me called out, “And my son did get up off the floor when we were all able to reason with him!” And in the background I can hear my fellow special needs moms from all around out there cheering in success with me.
Sometimes these things work, and sometimes they don’t. There are goals and there are plans, but a lot of it changes. One day Wil fully cooperates, and another day some secret switch is flipped and I’m getting a call from the school. This journey is definitely a day-to-day process. This culture was not made for Wil, but thank goodness. It forces us all to step back and re-think the way we do things. We can’t go through life “busy-ness as usual” and wonder where the days went. Every day is new and different. It truly is an adventure.
Clearly, this process carries with it a large learning curve. But in a way, I’ve found that to be the fun part. It’s not easy, and some days I turn my eyes to the sky and pray for an answer because I just don’t have one. There are always going to be goals we set for Wil that he will not accomplish. Where we need to make another turn, make an adjustment, give something else a try. I never want to completely close a door on him. When we walk through those doors we may learn this route is not going to work for him, but we always discover something.
Wil may be reading far behind his peers, but here is the adventurous, magical part. Recently, as we have walked through the grocery store, he started reading all the signs hanging up and various labels. “Mom, look ‘Dairy!'” “Mom, look, Peeeaanut Butter! That says peanut butter!” “P iiiii ccckles. Pickles! Mom, look, Pickles!” He’s also learned my cell phone number in his speech therapy class, so when I start to recite my cell phone number to the cashier, Wil always recites the last four digits for me. I look at the cashier like my son has just won the Pulitzer and the cashier beams just as brightly as I do. And just like that, we passed on our happiness and maybe a slice of Down syndrome awareness on to someone else. I would definitely classify that as surpassing the “good” level.
Time has definitley changed what I perceive as “good.” That does not mean I believe any less in my earlier warrior calls that did not come to fruition for Wil. All doors need to remain wide open. They have to be given a try. We learn something with each and every experience. To fail is to close doors on ourselves. No one can tell us what our child can and can not do. Not even our own selves. Our children will show us in time given the opportunities. And that’s the key…give it time.
When our children with special needs are babies, there are so many uncertainties and unpredictabilities. Leaving anything to time is extremely unsettling. I get that. I lived that and still do. So continue to belt out those warrior calls for all to hear, bring in all the support possible. Let those well-meaning friends know that while you appreciate their sentiment, no sympathies are needed but you welcome their congratulations. Because it’s all “good.”
Your future may now look different, yes. And believe me, it will look a lot different than you could have even imagined. I know this and my little man is only 11-years-old. But I don’t let that scare me. I let it thrill me.
I never knew before how joyous I would feel over hearing the word “Pickles” sounded out from my 11-year-old son. I couldn’t have known that until I lived it day-by-day. To experience all the ups and downs, and realize it all adds up to good. The only advice I can give my previous self is to let the day-by-day happen. Quit wishing for a known future. Prepare for one, but don’t wish for one.
So what is “good?” I would say today (and I know by now that my definition could change over time), that good is a process. Good is walking through doors and giving it a try. Good is knowing that some doors will close, and that’s ok. Be careful never to close a door on yourself. There is always a way, it just may be a different way than you anticipated. Be open to options, be creative. Allow this journey to be an adventure and leave room for magic. And fun! Good is discovering a new door you didn’t even know was there. When it comes down to it, it’s ALL GOOD.