I’ve been on this Down syndrome path for three and a half years now (including the prenatal diagnosis), and it’s interesting to me to see the two ditches that people often fall into when describing Down syndrome.
I call them ditches because in my experience as a mother to a child with Down syndrome, neither of these is our reality with Down syndrome. Is it a curse? NO. Is it all smiley faces and glitter? Equally NO.
Oftentimes I see parents combatting the very offensive Ditch #1 with Ditch #2, making life with Down syndrome seem over-the-top incredible, placing a beautiful quilted rug over the scratches on the floor, dimming the lights, lighting candles so that the harsh light of reality can be softened by edited pictures and carefully crafted sentences. It’s as if we’re all afraid if we admit it’s anything less than perfection every second of every day, everyone will assume we don’t love our children or somehow regret their existence.
Looking back over my past three years of blogging, I’m pretty sure I can be accused of falling into Ditch #2 on more than one occasion. It was part of my journey. I started in Ditch #1, swung too far to Ditch #2 and slowly, over time, crawled my way out with a more objective view of this Down syndrome thing.
I’m not here to accuse anyone of misrepresentation or call out blogs I feel are mostly hype, but I’m here to share with you what I’ve learned. I can’t speak for anyone else, but I live this reality every single day, and I wanted to share a few thoughts.
1. Down syndrome is.
It’s not a poison working to ruin lives or something projecting fairy dust all around — it just is. It occurs in all kinds of families that all respond to the diagnosis differently, live with the diagnosis differently, look forward to the future after the diagnosis differently. No two individuals with Down syndrome are alike just like the families they are a part of are all different. To place broad stereotypes — either saying it brings sadness or happiness to a family — would be to stereotype hundreds of thousands of families and downplay how they choose to live their unique lives.
2. Down syndrome brings with it delays and health concerns.
I feel like I share pretty realistically on my personal blog about our day-to-day with our daughter, Addison, but just in case you have missed those posts, let me say that Down syndrome is not always easy. Addison had very serious health concerns for her first year of life. She was in the NICU for five weeks (born full term), was on oxygen for nine months, was g-tube fed for five months, had two heart surgeries in six months and has been checked every few months for leukemia because she was born with a transient version of it. For the past three years, we’ve seen four therapists almost every week to help Addison advance to her next milestones. This has been a lot of work. It’s frustrating that she can’t talk to us. It stretches my patience to have to wait for her to do things/learn things because I want to do everything quickly, and she does everything at a much slower pace. I struggle with the fact that she is three but still isn’t as helpful/communicative/independent/able as a typical 3-year-old.
I don’t care how rose-colored your glasses are; Addison’s special needs have been very difficult to deal with at times with no promise of an easy future. Low muscle tone isn’t going away. Speech difficulties will just become more apparent as she merges further into life. Developmental delays don’t have a catch-up date.
To cover this with a pretty picture of constant happiness and cute puppy snuggles is simply not an accurate portrayal of Down syndrome.
3. Down syndrome does not take away from the fact that Addison is a little girl.
When she was a baby with her many health concerns, it was hard to see past her diagnosis. It was hard to imagine her living past lying in the NICU attached to a million wires, so puffy that you couldn’t make out her features. And yet as she has grown past all of that, she has shown us a hilariously fun personality of a little girl who is obsessed with chocolate, books, pretty things, dogs, Signing Time and her papa. She is fiercely independent and has blossomed from the sick-looking rosebud from her early days into a gloriously beautiful red rose.
4. Down syndrome has taught (is teaching) me many life lessons.
Compassion for those who are different from myself, patience, understanding, appreciation for different learning styles, loving not because it benefits me, but because in spite of this unexpected version of motherhood, love has bonded us. Enjoyment for little milestones becoming a big deal because of how hard everyone worked to get there, thankfulness for life, happiness in the face of difficulties, confidence in my family’s ability to overcome hardship, peace with today, contentment in the giving of myself to nurture another life.
5. Down syndrome does not define Addison, yet it is a big part of who she is.
Oftentimes parents might choose to describe their children with Down syndrome by the physical features that set them apart. “Adorable squinty eyes,” “kissable flat nose,” “love the feel of lifting the body with low muscle tone out of the crib in the morning.” By doing this, I don’t think they’re highlighting the differences and exalting them to make them seem cool. I think those physical characteristics are so closely intertwined to who that child is that after a while as a parent you don’t see a difference. Addison is Addison. Her physical characteristics include very distinct markers of Down syndrome, yet she could easily pass for a twin of her brother, Carter. I’ve stopped thinking of her features as different and just part of who she is. If I mention them specifically, it’s just my way of describing my beautiful daughter.
6. Individuals with Down syndrome are more alike than different. But they’re also going to have different struggles, different points of triumphs, different paths of achievement. Can both be true?
Over the past six months, Addison took a gymnastics class with her peers. Yes, she was more like those other children than different (a little girl wanting to have fun!), and yet she needed so much more help to learn proper behavior than any of those other children did. We had therapists meet us at class to figure out the best ways to help Addison do well. I wrote long blog posts of frustrations when it didn’t go well, happy posts when she achieved small goals. To put a “She’s more alike than different” Band-Aid over the experience would completely ignore the the extra assistance she needed to meet her other peers where they were at. I want the world to recognize that she is a beautiful 3-year-old enjoying life, but it’s also completely unfair to Addison to not acknowledge all of the extra work she has to put in to do this.
Down syndrome Addison brightens my life every day and makes me happier than I ever thought possible.
It’s easy to assign blame or give credit to the genetic makeup of a person, but the truth is, Down syndrome isn’t what brings joy to our home. Addison is. Down syndrome doesn’t work hard to succeed in feeding herself, dressing herself and preparing for preschool. Addison does. Down syndrome doesn’t smile so brightly I think my heart might explode with love. Addison does. Down syndrome doesn’t have a streak for trouble as she steals food from her brother, hides toys, tears her room apart and refuses to let me brush her teeth. Addison does.
Down syndrome doesn’t make choices for Addison. Down syndrome doesn’t pre-program a certain path for her. Down syndrome doesn’t determine that Addison will be a certain way. Yes, Addison has the genetic makeup of Down syndrome which brings with it some delays and struggles, but like any other girl she takes what she’s been given and lives according to how she wants to live. She makes choices. She chooses to laugh or cry. She decides whether to charm us or stubbornly stiff-arm us.
To give Down syndrome all the credit for what Addison has brought to our lives is completely overlooking everything she has brought to the table as an unique individual.
8. Down syndrome does not warrant a death sentence.
I’m not here to argue pro-choice or pro-life. I don’t think that is the issue here. The issue I’m addressing is when parents find out their unborn child has Down syndrome and they then choose to end the life because of the defect even though they badly want a baby.
Medical professionals will feed new parents a line. Society will feed new parents a line. Friends and family who only know normal will feed new parents a line. Preconceived notions from past glimpses of differences will feed new parents a line.
It’s easy to listen. It’s easy to think “they would be better off” to not live. In addition, you can read my reality of the health concerns, delays, frustrations,and uncertain future and feel justified. “See!” You can reason with yourself. “She’s been through it already and she said that it is hard!”
But the truth is that parenthood is hard. Life is hard. To admit things are difficult doesn’t mean I love my daughter any less. It just means I am honest about our journey because I respect you too much to lie to you. If you are in the experience someday yourself and discover the snuggly puppies bite, it helps to hear real stories of parents who have been there.
Sometimes the things that are the hardest for us to do — the most difficult circumstances to live through — the most frustrating lessons that never seem to end are the things that shape us into who we were meant to be. And those things bring with it true happiness and contentment that never would have come our way on the easy path. I’m not saying Addison’s life is the most difficult thing, I’m just saying there have been moments along the way (health concerns, etc.) that fit that description.
As the mother of a child with Down syndrome — as the mother of a child with Down syndrome who has had significantly more health issues than a typical child with Down syndrome — as the mother of a child with Down syndrome who didn’t want a child with Down syndrome — I still say with confidence: WORTH IT.
Just because something isn’t easy doesn’t mean it doesn’t deserve our efforts.
Addison is worth every bit of medical drama we had to go through to keep her alive her first year. Addison is worth every minute of the long hours of therapy appointments. Addison is worth our love even though it had a bumpy start (surprise diagnosis anyone?). Addison is worth fighting against social stigmas to help her live to her fullest potential. Addison is worth our time and effort into caring for her as a baby long past the time her age says she should be acting like a baby. Addison is worth life.
I believe Addison was perfectly created by a sovereign God. I believe he then placed her in our family. I believe he has an amazing future ahead for Addison. And I am beyond thankful for her. She is my daughter. She is not Down syndrome. She is a little girl who has Down syndrome, living life to the fullest every day.
9. Down syndrome does not mean “stupid.”
I’ve mentioned this before, but one of the physical characteristics of Down syndrome includes a small mouth which then makes the tongue seem oversized. This then lends to difficulty with speech. First of all, it’s more difficult to learn to talk and then when conversation is possible, speech might be slurred or difficult to understand. Because communication is difficult in this way, oftentimes it’s hard for individuals with Down syndrome to express what they’re really thinking. This is often misinterpreted as not understanding or comprehending.
Addison struggles to talk. She signs mostly to us. Her spoken vocabulary is under 20 words at 3 years old. This makes it very difficult to know what she understands and such.
But what I have learned so far is that Addison is freaking smart. She manipulates situations when she wants something. She devises schemes to turn things her way. She problem solves like no one’s business. And she does this all with very little talking.
It might be easy for someone to make a rushed judgement when meeting Addison for the first time. But as someone who knows this little girl very well, I know better than to let her pull a fast one on me… again.
10. If viewed realistically, Down syndrome should be overshadowed by a life.
Down syndrome. It’s just a label. It’s not a life sentence. It’s not a promise of happiness. It’s not a promise of a certain outcome. It is a life.
As Addison continues to grow and go through new phases of life, I know I will grow and change right along side her. I’m not saying I’m an expert. I’m not saying I’ve seen it all because I haven’t. I’m just getting started parenting a child with Down syndrome, and I still have so much to learn. I’m sure if you asked a different family in the Down syndrome world to make this same list perhaps it would look far different than mine because we’re all at different points in this journey where certain issues seem like a bigger deal to us than they would at other points.
But there’s one lesson I learned early on that I plan to hold onto tightly through all the mountains and valleys still ahead of us. I love my daughter for exactly who she is. I go back and forth between wanting to be a part of the Down syndrome community and wanting to just focus on my family and our normal. I don’t claim to be a big Down syndrome blogger because I’m just a regular ol’ mommy blogger posting snarky pictures and the day’s happenings. But every once in a while I read something that someone else has written that reminds me that if I don’t share at least one version of this reality, people will stay in Ditch #1 because Ditch #2 seems like a lie special needs parents feed themselves to keep the world from feeling sorry for them.
Here’s to turning up the lights and seeing the whole picture. Here’s to celebrating differences, enjoying life and shaking off the glitter to take in the raw beauty of the truth underneath.