October is Down Syndrome awareness month, and there is a topic that has been on my heart for quite some time, but have been hesitant to post about it.
Recently I have been asked by a few different DS mommas to put into words our thoughts, feelings and emotions towards having a child with Down Syndrome. The reason why I have been reluctant to write about this is because I actually feel sad that we had such a positive DS experience. I’m sad because we are not the norm. Sounds strange right? Let me explain…
Through contact with MANY DS mommas, I have learned there is a very common theme surrounding the birth of their littles, especially if they did not have a prenatal diagnosis of DS and time to mentally prepare. That is feelings of guilt, sadness and grief, and who can blame them!! They have feelings of guilt, like it was something they did during pregnancy, bad karma perhaps, or maybe feeling guilty for having a child at an ‘older’ age. They are sad for the child that at the time they think will never drive a car, get married, work, or live on their own. They grieve the loss of that ‘typical’ child that they will not have.
I admire the guts these moms have to be totally honest and share their deepest darkest thoughts and feelings towards Down Syndrome.
These thoughts, feelings and emotions however are all so very foreign to Alex and myself….. and here is our journey with Down Syndrome.
When we attended our pre-adoption workshop the group was told that you really have to know what you want in a baby when filling out the application. You can be as specific as you want when it comes to ‘picking’ your perfect baby. After all you are the one footing the bill right? Race, gender, birth mom’s history, birth dad’s history, conception history (rape, incest etc), health concerns, disabilities, and the list goes on. Pages and pages of check boxes. Just like making your perfect burger when checking the topping boxes at one of those high end burger joints, we got to pick our perfect baby!
We had ONE box checked….. DOWN SYNDROME
WHAT YOUR IDEA OF A PERFECT CHILD MAY LOOK LIKE…
A precious little baby girl. She will have zero health concerns (which every parent wants of course). She will have platinum blonde ringlet curls, and large bright blue eyes. She will hit all of her developmental milestones right on time, or maybe even early just so you can brag to all of your other mommy friends. Of course she will be smart, and excel at all grades of school. Probably be athletic, and good at every sport she plays. She may even play an instrument or 2, but that will be up to her. She will get a cute little car when she is 16 and save you from the burden of chauffeuring her and her friends around to the movies, football games and school. She will obviously graduate with honours and go on to attend a good university. Of course she will find a great career as a doctor, maybe a lawyer or engineer. Her smarts will definitely not go to waste! Her wedding will be grand and everything she ever dreamed of. The cycle will then continue when she gives you 2 or 3 perfect little grandchildren!
OUR IDEA OF A PERFECT CHILD…
A little baby, born with perfect upward slanted almond eyes, and a little button nose that perfectly accentuates his flawless round face. He may have a single crease on the palm of his hand that will hold onto your pinky finger. He may be born with congenital heart defects, thyroid issues and chances are will have issues with his eyes or ears as he grows. Thats fine though, we can tackle those bridges when we get to them. I’m VERY comfortable around sick people, ICU’s and hospitals so I think we can handle it! He will also have low muscle tone (‘floppy baby’), which means when you hold him close to you his little body will just melt into yours. He will take longer at hitting his developmental milestones, but he will get there will a little extra help. Speech therapy, physical therapy and occupational therapy will give him the tools he needs to achieve these milestones. We know that we will also have to do lots of work at home outside an official ‘therapy’ setting, we can handle that. Our child will go to school and be in a classroom with your perfect child. He will be friendly, caring, and compassionate, and I hope your child is as well! He has a lot to teach us, his siblings and the rest of the world about acceptance and unconditional pure love. He may drive a car, but maybe not, there’s no rush to worry about that quite yet! He will graduate, maybe not will a GED but he will wear a cap and gown and celebrate this huge accomplishment alongside his friends. He may want to attend some form of post secondary education, we will definitely encourage it but at the end of the day it’s his choice. We would love for him to experience living on his own, maybe with a bit of help. Then again, why worry about this so soon? We are light years away from that, besides we don’t even have a kid yet! He will have a fulfilling job that he is happy to wake up and go to every morning. He will get married if he choses to do so. Most importantly our perfect child will be happy, and content with life. He will be loved and cared for no matter what.
Well low and behold, just over a month after we checked that one single box, our perfect child came into our life!!
Now remember how you felt when your perfect ‘typical’ baby came into this world? We felt those exact same feelings when we got our perfect baby!
Every single aspect, thought, feeling and emotion toward Jaxson was filled with positivity, joy, love, excitement, and of course fear (but what new parent doesn’t have fear?). He was every single thing that we wished, dreamed and hoped for, and so much more.
HE IS OUR PERFECTION and he has Down Syndrome. Which means his and our world may be filled with surgeries, oxygen, GI issues, therapies, glasses, leg braces, sleep apnea, medication, doctors, hearing aids, slower development etc. These are the cards Jaxson was dealt and we wouldn’t change it for anything in the world, because Down Syndrome is one of the many features that make Jaxson PERFECT!
HAPPY DOWN SYNDROME AWARENESS MONTH!!!
8 thoughts on “Down Syndrome Perfection”
Thank you for this! You haves just echoed the thoughts that run through the brains of my wife and I. When we were expressing interest in our daughter, one of the SW actually said to us, “you know you could have a normal child, right?” We were shocked but have come to realize that because most experienced with DS start with a grieving period that people don’t always understand how we could have chosen this life. We just tell them that we chose Lily – the rest is just part of her magic.
You are doing an amazing job telling your story. 🙂 proud of you!!
So wonderfully put into words!!!!
He is perfect!!!💙👍💙
You guys have done a great job showing us how wonderful it is to adopt a child with Down Syndrome. I’m glad you’re documenting all of this. But I was hoping, and I know the CDSS has already done this, I was hoping you’d write a mean-assed rebuttal about what that jackass atheist tweeted a couple of weeks ago (I’m not going to mention his name here.) Do you have any idea how “religious conservative” people are using his words to make all leftists/liberals/atheists/pro-choicers look like people who are hateful or ignorant of people with Down Syndrome? But you two, can stand up to that evil atheist’s words and put a new voice into the debate for the worthiness of people with Down Syndrome and show the world that leftists, pro-choicers perhaps even atheists do value them and that asshole is not the “voice” of leftists/atheists or pro-choicers when it comes to DS.
Hi! I have so much admiration for your journey. We adopted my younger sister with down syndrome when she was 10 months old. She is now 35. Best gift I have ever received. Are you guys familiar with Hugginz by Angel – hugginzbyangel.com? I’m not sure if there are more surgeries ahead for Jax, but thought one of these blankets would be great for him! With much respect!
We are familiar with Angel and the amazing work she is doing! Jaxson is signed up to get a special hand made Angel blanket 🙂 thanks for thinking of us!!
Loved this post. Wonderfully said! Such a beautiful little babe you have there.