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.

            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.

            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.

            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.

            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.

            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.