How having a child with Down Syndrome has changed me

Somebody said to me once,

“You are so patient with Ella. I think that is amazing.”

Woah, woah, woah, you must not be talking about me because quite frankly, I am the least patient person I know. I get impatient waiting for a sentence to come out of my thoughtful husband’s mouth. I get overly aggravated waiting for slow internet, waiting for the kettle to boil and I don’t watch tv because I can’t stand commercials. But it is amazing how a little person can change you. Here are just a couple ways Ella has changed me.

Ella age 1

I have developed patience where there was no patience before.

            A friend of mine, who worked extensively with people with disabilities said, “You can’t rush a person with Down Syndrome.”  Not only is this true, but if you do rush them, at least in Ella’s case, it would be more detrimental than helpful. You see, Ella is Miss Independent. Everything is “I do.” I remember when she was learning to do up her own seatbelt. We would all climb into the car, most often running late. The last thing we needed to do was to wait as we agonizingly watched Ella try to insert the flat little head into that perfectly matched slot and wait for the click. Buckling a seatbelt is not as easy as it seems. It requires gross motor (pulling the belt), fine motor (lining up the metal bit with the buckle) and then the coordination to both pull the belt and insert it at the same time. Friends, it took  at times, what seemed like forever ….but we waited. We let her do it -  at first helping her out with the final push when she would allow us, until at last, she could do it all by herself. If we had not been patient and waited for her to learn how to buckle her seatbelt, we would still be having to do up her seatbelt every time we got into the car and for who knows how long into the future.

Potty training - we started two and a half years ago. I think we're finally there.

I got physical

            Sometimes, I say that God gave me the two most touchy children in the world because he knew that I really don’t like physical touch. I am never the first person to offer a hug and have to work at not cringing when someone tries to hug me. At best, I would let Ben hold my hand in public but never anything more than that. I don’t like to cuddle and if you touch my face or my hair I might have to perform a karate kid on you. My children, however, did not get the memo. They touch me, they hug me, they kiss me, they climb all over me…and I touch them, I hug them, I kiss them, I cuddle them, I do all the things I would NEVER have tolerate before. Truth be told, I cuddle Ella to sleep almost every night.  So what happened? The transformation happen just days after Ella was born. We were still in the hospital and I knew. Everyone else denied it but I knew there was something different about her and I swore to her and to God that she would always know that she was special, wanted and loved beyond what is humanly capable.

I am less competitive

            Jakob is a genius. No really, he is and always has been. He was the kid that could speak in full sentences by the time he was two. He reached every milestone when he was supposed to or three months earlier. When Ella came along I honestly, forgot about the milestones. I forgot what those stupid little charts said about when babies were supposed to what: to walk or how many words they are supposed to have by the time they are two. I am constantly surprised by how little I care about what all the other kids can do because quite frankly, when you take away anything or anybody to compare Ella to, she is perfect. She progresses at her own speed, in her own time and in her own way.

I don’t take health for granted and statistics mean nothing

            Nobody thinks it will happen to them. Nobody actually goes into a pregnancy saying “For sure, this one will be disabled.” My chances of having a child with Down Syndrome were low. I was 28 when I got pregnant. 1 in like 1500. So if you tell me that my child with Down Syndrome has a 1 in 4 chance of getting leukemia it means so much more and yet so much less now that I am a statistic myself. Stats like this fill the pages of a book called, “Babies with Down Syndrome.” Being the reader that I am, I got home from the hospital and almost immediately started reading everything I could get my hands on. Big mistake. If there is one piece of advice that I give new parents of a child with Down Syndrome, it is DO NOT read that book. At least not right away. It will just scare the shit out of you because when you read something like that there are two responses: live a life of paranoia, fearing death with each new day or have a subtle awareness of what to look out for. The latter comes only with time…a lot of time. I remember a long winter when the online Down Syndrome community lost three little ones for various reasons. The fear of death paralyzed me. It inhibited me from living a joy-filled life in which I fully savoured the time I had with my children. I had to come to grips with the fact that God has given us these children on loan for an amount of time he determines and when he wants them back, there is nothing I will be able to do to change His mind. He loves them. They are His children as well as ours. That being said, I definitely do not take health for granted. The reality is that there are so many evils like heart disease and leukaemia that lurk on Down Syndrome’s doorstep. I feel so incredibly blessed that Ella is a healthy happy little girl.

I define success differently

            Ben and I have always said that we have the same expectations of Ella that we do of Jakob. We expect that Ella will go to school, will learn French, will graduate from highschool, possibly go to college and will live on her own. That being said, the way that we define success has changed. So often we define success in terms of deliverables with a predetermined delivery date. For example, success is graduating with a degree…from many, when they first set out, success is not just graduating with a Bachelor’s degree, but graduating within the specified time allocated for a BA – 4 years. That is, until it takes you 5 years or 6 or 7 years to complete at which point your realize that even though it took a bit longer, you were still successful. Success is also often tied to money. I will be successful when I have a job that pays well. But is that job fulfilling? For Ella, success will look very different than it will for Jakob because they are different people and will have different goals in life. They will have different priorities and different interests. Right now, success is in the fact that Ella is thriving, she is happy and she is engaged (in life, that is). It isn’t that she has mastered 4 sight words, or can count to 15, although, for us these are huge victories as well. But at this point, as we prepare for kindergarten our goal is that she is confident in knowing who she is and that she is loved. For us, this is success.

Yes, Ella has changed us. And I would guess that she has changed many others as well. I am deeply humbled to be a witness to this and to be the mother of such a life-changing little girl.

Time to think, time to create and time to sit at the feet of Jesus.

What takes more courage? To work day in and day out so that you can be sure the bills will be paid at the end of the month or to take time out to sit at the feet of Jesus.

Friends, I at home. alone. on a weekday. Albeit, my coffee table is covered in used tissues and I sound like I might hack up a lung but I am at home. alone. on a weekday. My head finally cleared at about two in the morning and it has been nice to just take a sick day. Does anyone feel totally guilty calling in sick? I don’t know why – for goodness sake, I’m sick, nobody at the office wants my germs or hear me blowing my nose every two minutes but for some reason, it takes so much in me to say, “I can’t come in today.” Thankfully, I have people above me who will tell me just to not come in or work from home, even though I offer.

It’s raining. I am drinking hot water with lemon and honey and sitting on my couch listening to the Pizzarelli boys. Exhale with me.

Why do we do this to ourselves? Why do we work so hard to the point we are afraid to call in sick? Somebody passed on a tidbit of wisdom to me a while back. They said, “What takes more courage? To work more, or to work less and trust that God will provide the rest?” Trusting is so hard for me. It always has been - at least when it comes to money. When times are tight financially, my knee-jerk response is to set about fixing the problem in the most pragmatic way I know how – get another job, find another source of income, work more.

But what this does is it takes away from my time to think, to create and to sit at the feet of Jesus. The three very things I need so desperately for the preservation of my sanity. I am introverted artist at heart. Creating is my life-breathe. It is what God has created me to do, to be. And at the feet of Jesus is where so much of inspiration comes from. Without time to think, to create and to sit at the feet of Jesus, I am just a money making machine and I am not staying true to my commitment to be God. The commitment that says I am his.

I have allowed myself to get so distracted.

I got so wrapped up on getting the paint on the canvas that it just turned into a big brown blob that resembles sh*t.

This weekend is a pretty big deal in the Christian calendar.

I am reminded of Jesus last days: a meal with friends, prayer, submission and obedience.

Desire for Wholehearted living

Desires can be confusing. I desire a lot of things…well, not so much “things” as one particular way of feeling, which I have convinced myself, can be fostered by surrounding myself with particular types of people and engaging myself in particular types of habits – habits like reading my bible, spending time in silence, creating music, art, delicious food and of course, ensuring that absolutely everything that I do, wear and say endorses the Krista Lee Ewert brand. Okay, well, maybe I got a bit carried away there but you get my point. The little Baptist girl in me, however, says that these desires are wrong. That in subscribing to a certain mantra or desiring beautiful things, or conforming to one particular worldview, I am, in fact, “of the world” or worldly. In essence, all I truly desire is a deep and intimate connection with my God. The God. And to live out my entire being as an act of worship. But the mere fact that I am trying to be something, ignites this guilt inside me. This same guilt creeps in whenever I consider making more money than I already do. The irony is that I don’t actually make enough to support my modest lifestyle and am a socialist…then again, perhaps my poverty is what fuels my socialism. I don’t believe that anything that I desire is innately wrong. How do we determine which desires are from God and which are bred out of sinful nature? I buy clothes that “resonate” with me – that are my “style” and the ones I can’t afford, I pin on my Pinterest board. Is this wrong? Is this sinful that I have more than one shirt? I don’t want to have to work so hard or so long, so that I actually have time to be inspired and create. Is this wrong? Is this me being a sluggard? And when I do have to work, I want a job that is not only fulfilling but an expression of who I am so that the line between work and play is non-existent and I still receive a pay cheque at the end of the month.

“Are you crazy!?” Our parents would say…and herein lies the source spring of my guilt. Our parents did what they had to. They graduated from highschool or college, if they were lucky and got a job and stuck with that job come hell or high water to make a living and save for their retirement. God forbid they not have a comfortable retirement! So they worked during the day, and came home at 5 to be whoever it was that they really were. The odd thing about this is, when asked, “Who is Joe?” the reply would be, “Well, Joe is an electrician.” “What do you do” has become synonymous with “Who are you?”

We, meaning Christians as a whole, have created neat little compartments for our lives. One compartment is for our jobs – the place we go to earn money. One compartment is for our finances – we don’t talk about this compartment at our jobs nor do we talk about this anywhere else, including when we are focusing on compartment number three, which is religion. We have come to believe that compartments should not overflow into one another and therefore our religion should not speak into our financial decisions, our job choices or weather or not we buy fair trade products.

“Holistic” has become a four-letter word in some Christian circles but I believe this is exactly what God is calling us to when he says to “love the Lord your God with all your heart, with all your soul and with all your mind.”(Matt. 22:37) Recently, as you can probably tell, I am wrestling with how to reconcile all the many parts of my life and the many aspects of who I am. I want to live wholeheartedly. I want to worship wholeheartedly. 

I felt like this weekend represented the random kaleidoscope that is my life:

Friday morning Ella and I headed out to the Down Syndrome Researchfoundation where Ella has started the Early Reading program. In the evening, the University Community Children’s Choir had their spring concert. Ben conducted and Jakob sang and I played mom, referee, decorator and communications manager. The concert was fantastic and the kids did an amazing job. 

Saturday morning, the kids and I headed out to A Rocha for volunteer day. I have started helping them out as their Online Content Curator so wanted to take some photos of volunteers in action. Many people wondered why I would add something more to my plate but the reality is, is that A Rocha has always had a special place in my heart for the exact reasons mentioned above. I believe God has called us to care for creation, not just consume it. I love what they do, I love what they stand for. I am not a biologist however, so the opportunities were limited. When I saw the posting for something in the communications field I prayed hard about it. Let’s be honest, my plate is already way too full and for a while, I was having a really hard time accepting my skills in the areas of graphic design and social media. I thought, I am an intellectual. If I am going to change the world, it will be after I complete my MA in history and become a disability rights lawyer. I felt that kingdom work did not include graphic design and certainly not social media. But sometimes…you have to bloom where you are planted and for now, this is where I am planted, so I submitted my application.

And I am so glad I did. Not only because I feel like I am part of something amazing but because my kids get the opportunity to also be a part of it too. It is something we can do as a family and that is what I feel is missing in so many families in North America – Life lived together.

After A Rocha, we went straight to a birthday party for one of Ella’s friends…who happens to have Down Syndrome. There were other children there….who happened to have Down Syndrome, and it is funny, because while it seems perfectly normal to us…let’s just say, I never attended those types of parties when I was little.

We headed back home to prepare for friends who were coming to our home for dinner. It was lovely.

Sunday brings other hats to wear. In the mornings, I run a Sunday school program. This includes everything from teaching lessons, to scheduling to leadership training. Because I woke up feeling like I had been hit by a truck (otherwise known as the common cold), Ben took Ella to ballet in the afternoon so I could have some rest (which otherwise never happens, especially on Sundays).

Finally, Sunday evening we went to an Ordination service (where people become ordained as priests) at which, one of Ben’s choirs was singing and I was taking photos for my other job –  you know, the one that takes up the most of my time and gives me proper medical benefits.

All good stuff. It was a good weekend. But you can see why the line

Occupation: ____________________________________________

scares the sh*t out of me. Usually it ends up looking like this:

Occupation: mother, wife of a musician, ministry support, communications, graphic design, photographer, online content curator, stella and dot stylist, director of children’s ministry special needs advocate student BEING AWESOME!

I want to live wholeheartedly. I want to worship wholeheartedly.  Without burning out.  So tell, me, what helps you stay balanced and living a holistic life?