Always Human

My son isn't happy all the time. 

Shocking, I know. It's one of those "facts" everyone knows about Down Syndrome, right? People with Down Syndrome are sweet and gentle, and they're always happy. Basically angels, incapable of doing wrong: innocent babies forever. 

This has been a difficult false assumption  for me to counter personally, because in our case, Troy is indeed very sweet and gentle, and spends a lot of time being happy. The things he loves best in life are people, music, and ice cream, and he spends most days surrounded by the first two, and has fairly frequent encounters with the third. So yes, Troy has a generally happy disposition, but to say Troy is happy because of something about his DNA makes about as much sense as saying everyone who's 5'2'' is gorgeous, witty, and a bottomless well of wisdom. Just because it's true in MY case (cough cough) doesn't mean I can speak for everyone who shares that psychical characteristic. 

I know that if anyone makes a comment about how "they" (speaking of people with Down Syndrome as an entire group) are "always happy", that person is not meaning to be hurtful. But it is. I don't get offended at the person speaking, because they honestly don't know differently and probably have never been told differently. But it makes me so, so sad, because I see it as a symptom of our society's deeply-rooted belief that people with Down Syndrome are less human than people without. 

That's a shocking and offensive thing for me to say. How dare I accuse well-meaning people who are just being friendly of such things? 

Please, let me explain. 

To look at a person, and assume that you know everything you need to know about them after .2 seconds, cheapens their humanity. It puts them into a tidy little box that you can understand. To put them into a tidy little box labeled "Always Happy", and "Sweet and Gentle" might make you feel very generous and "Not Like Those Prejudiced People", but you are still taking an entire person and making them completely 2D in your mind.

I'll bet you treat your dog as more human than that.

My son is fully human, with full range of human emotions. He is capable of generosity and selfishness, joy and sorrow, love and anger. He is made by God in the image of God, and that is more than enough. Saccharine comments and patronizing assumptions will only keep him "less than" in the eyes of society, and that doesn't do him any favors. 

If all of this still hasn't convinced you, let me know and I'll post a video of Troy when the ice cream runs out. "Always Happy", indeed. 

Heaven is a Thing

Troy turned one a few weeks ago.

Any baby's first birthday is something special. You're transported back to the day they were born, the day you finally got to meet the little person you'd been longing to hold for months, and who you now can't imagine life without. Family gathers to celebrate not only a year in a child's life, which is in itself cause to party, but really they are there to celebrate that this child exists. First birthdays are a big deal, and Troy's was no exception.

Maybe this is just me, or maybe this is another aspect of adoption that I'm figuring out as I go, but for me, those "birthday thoughts" of remembering where we were last year has naturally led to thoughts of how we got there at all. It goes back a lot farther than the typical memory of that first ultrasound or positive pregnancy test, or even the day you and your spouse decided to "start trying".

The decision to adopt is the decision to dive into uncharted territory, to knowingly and willingly bare your deepest hopes and fears and become vulnerable in ways that are still tender a year after your baby is safely home with you, and the decision to adopt a baby with special needs is all that and more.

My baby is the baby that people are terrified of. When people get the news that their baby has a "high risk" to be like mine, they lock themselves in the bathroom and sob. If the tests come back negative, they heave a huge sigh of relief and celebrate. If the tests come back positive, they (not always, but way too often) receive a sympathy hug and the number for the nearest Planned Parenthood, and are comforted with the words that "you can try again; there will be other babies"...because their baby is like mine. Mothers-to-be everywhere tenderly pat their rounded bellies and say that "they don't care if it's a boy or a girl, as long as it's a healthy baby".

Those words: "as long as it's a healthy baby" haunt me. I have seen things I cant un-see, and I know things I can't un-know. What sounds like the reasonable wish for a baby to be born happy and healthy has a dark flip-side, because sometimes the baby isn't healthy, and what then?

We honestly struggled with the decision to say yes to adopting a baby who we knew would have Down Syndrome, and the long list of things associated with that diagnoses that could go wrong. Many times I'd just be going about my business, folding the laundry or standing at the sink washing dishes, and suddenly the fear would creep in. What if we were making a terrible decision? What if adopting a baby with special needs leads to daily struggles that leave us broken? What about our bio kids? Were we risking their childhood?

Those fears were heavy. Those fears came very close to convincing us to say "no" when we were presented with the decision to say yes or no to a baby boy who had spots on his ultrasound indicating a possible heart defect, possible duodenal atresia, and possible hydrocephalus. When I think of how close we came to saying no, I feel a little sick, but also incredibly thankful that we were saved from making such a terrible mistake.

Looking back, I can see that God started laying the foundation to save us from making that mistake years ago, in many different ways that I am still realizing as I go. One such way was that He put us both in a church where we grew up hearing week after week from our beloved Pastor John that all the pleasure this world has to offer is nothing, it is worthless, it will all pass away, and the only hope is to put your hope in Jesus and the promise He gives us of an eternity with Him after everything on this earth is long gone. This man didn't just say these words, he lived them, and the distinction there was obvious. That is how I grew up hearing the gospel. He didn't just preach truth to be right; he preached truth to lead us to a hope in Christ. He did it with his whole heart, and by God's grace his words found purchase.

Every time the fear would creep in, I could say with confidence, "Heaven is a thing." It doesn't sound that deep, but it became my mantra. We could be headed for dark times. We could be voluntarily signing up for loss and heartbreak. This could all go down in flames, but HEAVEN IS A THING, and heaven is forever. We can risk rocking the boat of our cozy little existence on this earth when we compare how the value of that temporary comfort pales when compared to the solid hope we have in Jesus Christ and the promise of salvation we have in Him.

So we said yes. I can't say that the fear entirely went away, because that's just part of living in a fallen world, but I can say that having that solid hope in heaven as our forever home, no matter what lay ahead in this life, gave us the confidence to say yes.

Pastor John died years before we were even seriously talking about adoption. I miss him deeply, and I long to be able to run up to him and hold up my baby and say "See? See? I was listening!! I understand! This is my son, my beautiful, beautiful son, and God used you to bring him to me!"

It actually physically hurts sometimes, like a knife in my chest, that I can't do that. But do you know what? Someday, I will. Because heaven is a thing.

Summertime Growing

I don't know how it happened, but August is halfway over.

Right now, the big kids are in the kitchen arguing over the last of the "good" cereal (apparently Honey Bunches of Oats are far superior to Frosted Mini Wheats...who knew?), Troy is practicing his tummy time on a blanket next to me, and I am finishing my daily pot of coffee in the cozy dimness of an impending thunderstorm.

It's days like this that I wish my hubby had a job that allowed him to work from home...and not actually have to work. *sigh*

Life has literally been a blur...which doesn't seem fair because I very intentionally didn't sign up for any busyness this summer. Our days have been long scooter walks to parks, hours of playing in our sandbox and swingset, occasional playdates with friends, baby snuggles, and picnics.

...Also a ridiculous amount of dishwashing, laundry folding, floor sweeping (the downside of the beloved sandbox), and general clutter busting. I would add vacuuming to that list, but let's face it, I honestly don't vacuum enough to have it make it onto the list. I'm almost thankful we have a friend with a cat allergy, as it forces me to vacuum once in a blue moon. I put a lot of thought into what carpet would best disguise the inevitable trail of five kids and a cat, and it's paying off big time. Does this make me untidy? Perhaps. Does this make me extremely clever? Wise? Far-seeing? Definitely.

I am in the midst of prepping for the coming school year, while simultaneously trying to pretend that summer will never end. (It's complicated, but possible.) I am excited about this new school year though, as we have joined Classical Conversations, and while I'm a little nervous about the learning curve of a new curriculum, I'm happy about all the support available to me, and all the friends the kids will be making as they learn. Also, on the once-weekly community days, the tutors will be doing the science experiments with the kids, which I am SOOO excited about. The idea of trying to gather experiment supplies, when in a typical week I can barely get out grocery shopping (I've been out of soft scrub for weeks, and I just can't make myself go out to get more and keep forgetting to get some when I'm out. This is my life right now.) and then work through them while keeping my three-year-old from trying to grab it and keep Troy entertained while hoping the big kids are actually learning something is simply magical, and is honestly one of the reasons we joined CC.
As we get into it and find our stride, I'll post updates for potential readers considering their homeschool options, or potential readers not at all considering homeschooling but who are simply curious how the crazy people live. (You know who you are)

My kids will be rubbing shoulders with kids who have been learning classically their entire lives, and I honestly think that if we'd tried this even one year ago I would be a lot more concerned with how my kids will compare with their peers. Will they be as well-read? Will they learn their vocabulary as fast? Will they have grade-level math skills? Will other kids think they are weird? Will they fit in? Obviously, as their mom, I want happy answers to these questions, and that hasn't changed. But, and this is a BIG but, Having Troy in my life has already changed my perspective on all these things. Troy is different for his peers. His little cousin who is one day younger than he is is crawling all over the place and is walking with support...probably independently before the month is out. Troy is developing at a whole different rate and in entirely different ways, and I've always expected this and it doesn't make me sad. I can just let Troy be Troy and help him learn and grow and thrive.

I feel a little silly for not applying this mindset since day one of parenthood.

My kids are a little quirky. They have some things they are good at naturally, and some things they need some extra help and encouragement with. I know that this is normal, but I've also never know how much is normal and I've looked to their peers to compare and see how "on track" they are. But how unfair is that?! Seeing Troy develop, seeing the PERSON he is: unique, amazing, made in the image of God...seeing that his probable future difficulties with algebra or geometry will in no way diminish his personhood or worth...I feel confident that he will live a beautiful, full life: growing in the knowledge and love of God, pouring into the people he loves and who love him, and, Lord willing, growing into a young man who values learning and hard work. I was dwelling on this one day, when it smacked me in the face that of course this applies to my other kids as well. If Troy can have Down Syndrome and lead a beautiful, full life, it's ridiculous to feel like my other kids need to fit in a particular box society calls "normal" to lead a beautiful, full life.

It's my job to help my kids learn and flourish, yes, but not compared to other kids, not compared to averages, statistics, or that other family who seems to have it all together. This school year, I am excited to tackle their education with this fresh, healthy mindset, and see where it leads us. Also, this school year and forever, I am excited to see what else God has to teach me through Troy...and I'm so, SO thankful He chose to place him in our lives when our family is still so young, and we can all learn and grow together.