To blossom

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson

Today is World Down Syndrome Awareness Day. For the last week, I’ve been thinking about a blog that would adequately celebrate and educate on this day. I’m still completely stumped. I’m really not sure what to write about. Here goes. Sorry if it is a mess.

For the longest time, Down syndrome and Mia seemed synonymous. I couldn’t look at her without seeing T21.It occurred to me over the past week that as her personality has begun to fully emerge, I’ve thought about Down syndrome less and less. Now I look at Mia and just see Mia. Her joyful little smile, excited baby expressions, funny looks, her willful determination and overwhelming curiosity, and her sweet loving eyes. I see her.

And I love her. Oh, the love. For so many months before her birth the fear eclipsed the love. Even after her birth, I felt the love but it always had that dark cloud of fear hanging overhead. All of that is gone now. I worry about her future, yes, but only like a mother should, and I’m no longer afraid of raising this sweet, amazing little girl.

Albert Einstein said, “Any fool can know. The point is to understand.” I want everyone to hold Mia, to talk to her, and to look into her eyes. I want them to understand. Down syndrome is just her diagnosis. It doesn’t define who she is. No amount of medical definitions, journal articles, or statistics will be able to describe Mia. She is Mia, a unique and wonderful little girl. A little girl who, like everyone else, deserves to be understood.

My biggest surprise? The joy. The joy I feel every day. The joy I see in her. She exudes joy. After Mia was born, Nate and I said (maybe a little sardonically) that it was too bad that the extra chromosome didn’t give Mia some sort of super power a la the X-Men. Like it’s too bad that instead of causing delays and health problems, the extra 21st chromosome gave her the ability to walk through walls or something. We’d laugh about it sadly, especially early on.

Then a couple weeks ago, I thought back to that bad joke and laughed to myself. I laughed because it’s true. Somehow Mia did get blessed with a super power. The joy. She’s so full of it she just can’t help herself. And every time she smiles at me I can’t help but smile, too. She smiles, I smile, she smiles more and all of a sudden I’m so full of joy I can’t help but forget all the things I was sad about before.

I mean, I expected a lot of feelings to emerge after I had Mia. I expected sadness, disappointment, frustration, anger, and maybe some happiness, but joy? It’s by far my biggest surprise. Sometimes I see so much joy in her and in me and everyone that she meets that I want to laugh out loud.

Someday I’ll take a video of waking her up in the morning. I unwrap her swaddle, she stretches, yawns, opens her eyes and flashes me the biggest smile, and then another and another. It’s like unwrapping a little bundle of joy every single morning.

Why is it hard to write this blog? Because my life is so normal now. What seemed like the big scary thing is slowly, over time, becoming the little thing. Do we talk about it, yes, but it’s being pushed aside for more important things – like enjoying and raising and loving our two beautiful little people.

I believe now that I needed that early time with her when I just saw the T21. I needed that time to let my fear disappear as her personality emerged. Just like a good spring rain washes away what is left of winter before the flowers bloom.

Happy World Down Syndrome Awareness Day! I’ll be celebrating with my sweet little blossom.

A little Mia Q&A

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” – Dr. Seuss (Happy belated birthday, Dr. Seuss!)

Mia is going to be four months old tomorrow. Kind of a lot has happened in the last four months. I thought I would do a little Q&A for people in case they are interested in how she’s doing – or how we’re doing. Some of these are questions I get asked a lot, and maybe a couple of things people might be afraid to ask.

Q: How is Mia doing?

A: There’s a lot behind this question, I think. Genuine interest as well as concern. I would have asked the same thing of a friend who had a child with Down syndrome. Part of me would have been just interested in the new baby, but the other part of me would just be so curious about what it’s like having a child with a trisomy disorder. Not to mention, it’s scary. I’d be concerned.

Here is the truthful, honest, brutal answer: She’s doing great. I really see very little difference between how Mia is right now at four months and what Fynn was like at the same age. Actually a few things are different. She smiles a lot more than Fynn ever did. She also coos more. Fynn was definitely not rolling over at three months.

She’s interested in her world. Touches, bats at, and grabs all of her toys. The rolling really started because there were toys out of her reach and she wanted to get them. Her favorite thing (like all babies) is looking at the faces of her family members. She watches Fynn like a hawk as he’s walking around the room. She responds to our voices and we “converse” which is very cute. I’ll talk and then she’ll coo back. She is very interested in her hands and how they work. She loves to sit up and stand on her feet (both with help, obviously).

There are probably things she should be doing that she’s not. You may notice that I get really excited about milestones. That is not because I think she’s an extra special baby or something (I totally think she’s extra special because I’m her mother), but I get excited because I was literally told that she might lie there like a dish rag and not respond to any of us for a long time. You know, worst case scenario stuff. I’m literally shocked every single day at how well she’s doing. Normal, to me, is shocking. It’s better than being disappointed, I guess.

Health-wise, all is well. Since coming home from the hospital, she has not been sick one single day. Aside from her heart murmur, she hasn’t had any problems.

Challenges will come, but at this point things are pretty typical around here.

Q: Are you worried about her missing or having delayed milestones?

A: Not really. I’m only concerned with how to help her achieve them. I’ve learned something about parenting with the first one. You know, no one gives you a prize when they meet milestones early or even on time. No lottery money, recognition, or special gift. Not a thing. Sad but true. For all of you new parents, you’ll discover this and be as disappointed as I was.

Seriously, though. What does it matter if she talks at 8 months or 4 years? As long as we work on it and figure out some way to communicate to alleviate her frustration, then I’ll be happy. Even if we can’t, we’ll deal with it. Once I figured out that there was no one I was competing against, it was pretty easy to get over this part.

I’m sure I’ll have that twinge of sadness when I hear another child conversing easily with their mother or walking at 12 months if Mia is not, but I’m no stranger to that feeling.

Q: What is therapy like?

A: Right now, Mia has occupational therapy once every other week at our home. With a four-month-old, there’s not a lot of “therapy” that happens during that time. Really, she is just being constantly assessed for delays and other issues. For example at our last appointment, I expressed concern over a head tilt that Mia is doing when she is sitting up. She will tilt her head to one side. Her therapist massaged her neck and looked for any issues that she felt required a visit to the doctor prior to her four-month appointment. She couldn’t find anything and suggested it was likely a muscle issue so she gave us some different exercises to do to build the muscles in her neck. We’ve been doing them and the problem is resolving itself.

We started putting Mia on her tummy to play the day she came home from the NICU. She’s on her tummy every time she is awake for quite some time. We try not to use “buckets” in the house – swings, baby seats, and car seats. We don’t have a swing in the apartment. She only sits in a baby seat when I need to eat, shower, or when Fynn is running around the house and I need to do dishes. This is not because we’re awesome parents; it’s because Mia is going to always have muscle issues. Buckets restrict a baby’s movement. While that’s not a big deal, typically, it would be a huge problem for Mia.

Basically, the OT plays with Mia for a half an hour and tells us what we need to work on. The key is that we work on it. So every day, I sit with Mia and play with her. That sounds obvious, but there are certain things I encourage her do so that she builds muscles and continues to build core strength and the foundation for crawling, sitting, and ultimately, standing and walking.

Later on, Mia will get a physical therapist as well as a speech therapist. There are also services beyond three years old, but I’m not worrying about that quite yet.

Q: Are you worried about her future?

A: Yep, absolutely. If I dwell on it, I could drive myself completely insane with worry. Just like if I constantly worried about the bad things that could happen to Fynn. There are days that are worse than others. When Nate travels, the nights home alone get very long. I start to think about the bad things that might happen to her as she gets older. I have to stay off the internet. None of it is helpful. Each and every situation is completely unique, just like every situation with any kid is unique. Plus, there are a lot of cruel people, as well as people who are unintentionally cruel. I’ve been trying harder to surround myself with positivity versus the negative stuff. Be realistic but not pessimistic. Not to mention that I trust that God is by our side on this one.

But here’s the thing – she’s only four months old. I’m just going to enjoy these days because “babies don’t keep.” Someday, God willing, both of my kids are going to be adults. With Fynn turning four in May, it is happening faster than I’d like. It’s important to prepare, but it’s also important to enjoy each and every stage of their lives. There are no do-overs with kids. I can’t make Mia this age ever again. Time will keep marching on as time does, and we’ll face whatever challenges come our way.

Thankfully we have a lot of loving and caring people surrounding us and her. That makes me worry much less.

Q: Will you do a Buddy Walk with Mia?

A: I’m really thinking about this. It happens in Waukesha around the time of Mia’s first birthday. I’ll keep everyone posted if we do one because you’re all invited.

That’s all for now. If you have any questions for me, please let me know. I’d be happy to answer them. Maybe I’ll do it in another blog post…that is if I have the answer.