The "Down Syndrome Personality" Blues

Down syndrome comes with many real, real scary associated risks. As a new parent of a child with d.s., one quick look at the long list of increased risks is enough to make you woozy. Just a quick google search will bring up intimidating conditions such as heart defects, dementia, leukemia, and intestinal abnormalities.

We have dealt with a few of these; Elina had heart defects and crossed eyes. There are also a lot of odd things that are associated with d.s., like constipation or ear infections. 

Okay, I can believe the increased risks and the quirky problems due to everything being smaller (like nose passages and ear ducts). What is hard to believe are some of the things I have heard lately about Elina's personality. It seems that so often when I note a characteristics or trait, someone chimes in with "that is common with down syndrome." 

Maybe I am oversensitive (wouldn't be the first time). How can it be that because my child has down syndrome, all her personality traits become part of that diagnosis?

Happiness? Oh, kids with down syndrome are all so happy. Stubbornness? That too (they are so gosh darn stubborn about being happy, I guess). Extroverted? Down syndrome babies are all social.

Is there a down syndrome personality?

Can Elina be stubborn because maybe both her parents have that tendency? Can she be who she is without being pigeonholed into a "down syndrome personality" stereotype? I want to be able to talk about my daughter without feeling like she is being labeled (even if the labels are not negative). She is not down syndrome, she has down syndrome.

Fifty years ago, many people with down syndrome were living largely in mental institutions. It has only been more recently that we as a society have begun to accept and acknowledge these individuals. So, it is natural that we have a lot to learn about Trisomy 21 and those who have an extra chromosome. I pray that in time we as a society begin to see down syndrome as a medical condition rather than a label that defines and encompasses an individual.

The Power of Encouragement

We would not have made it this far without the support of others. In a way I feel God used Elina to help us learn how to depend on the community around us. We are not the type of people who are usually comfortable with getting to know people; but it has been worth it.

 Here are just some of the ways the words of others have helped us lately:

1. Elina's Development
When the nurses and therapists tell us we are doing a good job...we breathe a sigh of relief. We are so new with all this parenting stuff, a little reassurance goes a long way.

2. The Blog
I can't tell you how many times I have thought that maybe I should stop blogging. It feels like every time I consider it, someone tells me how much it means to them. Their words keep me going with not only the blog but with writing in general.

3. Challenges
Sometimes the idea of two newlywed 21-year-olds having a baby with special needs just blows my mind. It feels that we have aged about ten years in 15 months. Every once in a while someone will remind us how much we are growing, and it feels worth it. We all want to feel like our struggle is legitimate. When others recognize how much we have gone through this year, we feel strengthened.

These are just some of the things people have said to us that have helped us along lately. It just goes to show the power of our words to one another. If you have a word of encouragement for someone else, don't hold it in. They might be needing to hear what you have to say.

And to you, thank you. Every comment and email I have gotten feels like validation. It makes me feel like what I am doing matters. It helps me to push through the doubt.

Pause Life

This morning we are soaking in the last moments in Colorado before we have to head back. Life is calling, but we are still taking this morning to pause.

Soaking up...


Morning Hair

 Baby Moments

 Daddy Moments

 Those two fingers

 Crazy Face

The "Um, I need more..." face

 The love of toys

 Taking time to breathe

Predicting the Future

One of the most difficult things about down syndrome for me are the unknowns. What will Elina be like when she grows up? How will down syndrome effect her as she grows?

Down syndrome is not a one-size-fits-all kind of condition. It effects each individual as uniquely as regular genes. In general though, there is a sort of spectrum with d.s., referred to as "low to high functioning". Many parents are opposed to this terminology, which makes sense to me. We cannot really measure our children and truly put them on a scale, but I do understand that some children with d.s. seem to have more problems with basic skills than others. The question with down syndrome that I have encountered again and again is, "Is she high functioning" or "Is it a very mild down syndrome?"

First of, the idea of having mild or just a little down syndrome is not accurate. You either have the chromosome or you don't. There is a grain of truth to this statement, however. Down syndrome seems to effect each individual differently. Some are able to seem more "typical" or "normal" than others. This has been everyone's perception of Elina. Doctors, nurses, family, strangers have all commented that you "can't tell" Elina has down syndrome, or that it seems to be a very mild case. Some have even told me that they believe it was a misdiagnosis, or that it has become less as she has grown.


Do I get offended by these comments? No, because there is still a part of me that believes them (not the misdiagnosis though, she has had a blood test). There is still that part of me that thinks she won't have any more struggles with development or reading or speaking. I know she has down syndrome, and I wouldn't change it. I am proud of her, of who she is; but still I wonder if she will be "high functioning". It is hard not to think about it when she dazzles every therapist and doctor that she meets with her capabilities.

Will Elina be able to speak clearly? Will she be able to read? What will she be like when she grows up?

There are clues, but no one really knows. Right now, I only have speculation. Only the thing is, I sometimes spend to much energy wondering and looking for signs that she is going to be high functioning. Am I the only one who does this? I don't know. Perhaps other parents who have a child with d.s. are better able to embrace the diagnosis, and to throw all the worries about development out the window.

I'm just not there at times, because I am sometimes still afraid of unknowns and all this unfamiliar territory.

Whatever Elina grows up to be, she will be Elina. I don't have any doubts that I will be able to accept her just the way she is. Being "low functioning" doesn't make someone less valuable, or vice versa. As much as I can, I will focus on the now, and leave tomorrow to worry and wonder about itself.

Losing Control

This week has put my life in a near tailspin.

No, there were not any huge tragedies or accidents. Rather, I watched strange things challenge my calm.

I will save you a play-by-play and go right to the highlights.

I committed to doing the 31 for 21 challenge for October. Three days this week I laid in bed and thought about how I had failed. I worried what people in the down syndrome community would think about me. 31 for 21 is not supposed to be about not missing any days, but about raising awareness- I let myself forget that.

Last night I decided to put on a new bumper sticker on the car before our trip to Colorado. The car we have was originally my mom's, and it still had the "Will Work For Peace" sticker on the bumper to prove it. I am all for peace, but I decided that a "Hogwarts Alumni" sticker was just more us. Last night, I put the sticker on sideways. There was no getting it off, and I flipped out. I annoyed Mikey to his limit by asking if I should get a new bumper sticker to cover the crookedness, and by telling him I was just going to take it off.

The sticker was sideways. There was nothing I could do about it. My perfectionism reared its scary head.

The cherry on top of this week though, occurred just a few hours ago. We were about 200 miles from home when I realized my phone was nowhere to be found. It got left behind in the shuffle. I thought Mikey had it, he thought I had it. So we were phone-less. Again, not a huge deal, right? Oh no. I started worrying and fearing about all that would go wrong without my phone.

It is little things like these that can drive me crazy. These are things out of my control.

When life doesn't go as planned, I become a sassier, less attentive, pessimistic person. I worry about what everyone and their facebook friends will think about me. Its got to stop. So, I decided to take this all as a test. It is an opportunity to really look at myself and put my priorities in check.

If I miss "important" messages, will my life end? If everyone at stop lights notice my leaning bumper sticker, will it make my quality of life plummet? I am supposed to be on vacation, resting with my husband and baby. If I let tiny worries drag me down, then I am missing the point.

God, I don't want to miss the point. I need you to give me peace about all the things that I can't control. Would you calm my heart and bring me back to what matters?

Buddy Walk 2012

Yesterday we woke early and made the drive to Wichita for our first buddy walk. This week has been one of the busiest for us this year, so even driving up I was frazzled and worrying about things instead of enjoying the day. As I watched the clock in the car, thinking that we were going to be late and miss it, I realized I needed to snap out of it. I had been so excited about the buddy walk, and even if everything went wrong, I was going to enjoy it. I was going to have joy no matter what.


 So, I closed my eyes and let my expectations go. You know what happened after I did? Pure Joy.

Mikey and I felt a very real and strong sense of pride walking with Elina. We needed this. It was a moment to own the diagnosis, to stand and join others who celebrate down syndrome.

There were so many of us! (around 4,000 registered walkers!)

We loved being surrounded by others who know what Elina is going through. We soaked it all in, and we felt healed in a lot of ways. 

The highlight for me came at the finish line. I am a first timer, so I was surprised and excited to find out that Elina would receive a medal!

Thanks to the Wichita Wings for taking part in this special day!

We know that having a child with down syndrome is not always glamorous. We know there will likely be times when Elina is excluded or put down for being different. Yesterday though, there was only celebration and pride and inclusion. It was a glimpse of the Kingdom of Heaven.

Uncle and Auntie walked with us!

We want to thank you so much for all of your support. You have helped us make it through this unexpected journey. We are all learning from Elina, and I thank God he sent us this gift.

We raised $275 dollars for team Elina on Fire! That's 137% of our original goal. Thanks to everyone who gave to the National Down Syndrome Society! The donations make days like these possible.

Unexpected Adventure

Today Mikey randomly suggested that we go to the Alabaster Caverns in Oklahoma (1 1/2 hours away). Usually we get excited about these kinds of adventurous ideas and then talk our selves out of them.

Not today.

We needed this; the fresh air, the time together. We feel refreshed and excited to find more of these adventures in our everyday lives.