I have hesitated to write this blog post for several reasons. One is I prefer to spend my time illustrating how typical our family is. I don’t spend a lot of time dwelling on how Lina – and by extension our family – is different, because in most ways, we’re not. Another reason is I don’t want to sound like I’m putting on a hero cape; I am no more a hero than any other parent of small kids. Also, I’m still kinda new at this whole “parent of a kid with special needs” thing. We’re still feeling our way along, learning as we go.
I do want to be real about the challenges we face. I mean this blog to be a glimpse into a real family that happens to have a child with Down syndrome. Sometimes there are things about that that are hard. There are things about being a family of any kind that are hard. But I’m also very lucky. Parenting a child with Down syndrome demands my best; it requires that I step up my game. I get to see the world from a little different angle, and that turns out to be a beautiful thing.
I see endless blog posts that purport to speak for whole groups of people. (“Ten Things Never to Say to People Who Pick Their Noses.” “Twenty Things Mermaids Wish You Knew About Life Under the Sea.” I obviously made those up.) I get it, and I suppose those lists have their place, but it’s way too presumptuous for me. I’m just going to share what I’ve taken from my experience thus far. Maybe it will mean something to you; maybe it will just help me clarify my own thoughts.
Things I’m Learning as Lina’s Mom
1. A new language – TEIS, IFSP, IEP, OT, SLP, sensory diet, petechia, hypotonia, typically developing child, peer model, ABA… You get the picture. But I’ve also learned that no one starts out knowing it all. We all learn as we go. When I need to understand a new term or concept, I do. My new vocabulary has been accumulated step by step, and it represents how far we’ve come in the last two-and-a-half years. I have a much greater confidence in my ability to suit up and face the next thing, whatever that is.
2. To live in the moment – If I let it, the future can sometimes feel like a scary place. There are so many uncertainties that could be crippling if I allowed them to be my focus. Instead, I make a deliberate choice to embrace the present moment. Jon and I pour our energy into being the very best we can for both our kids today, doing everything we can right now to prepare them for the future we want for them. We celebrate today’s victories and look for ways to overcome today’s challenges. I am soaking in these days with little kids, because I know how quickly they are passing. Being Lina’s mom has required me to do better at what I should do, anyway: focus on what’s in front of me, and spend my energy on things I can actually control.
3. Real optimism – I’ve mentioned before that I struggled in the beginning with knowing how to find the right balance between realism and optimism when it came to Lina’s capabilities. With a little time, the right answer came. I’m going to choose optimism, every time. I am going to believe that my greatest hopes for her are possible, and then I will do everything I can to make it happen. I recently in my work learned an organizational change process called appreciative inquiry. One of its key tenets is the “anticipatory principle,” which suggests that what we believe about the future influences how we act today. It turns out that decision for optimism I made after Lina’s birth has solid roots in change theory research. This natural realist is no longer afraid of planning for the best possible future. Life today for young people with Down syndrome looks nothing like it did a generation ago. I believe that it can look very different again by the time Lina is striking out into the world. That belief shapes my actions right now.
4. To measure my children only against themselves – This is one we all know but sometimes have a hard time practicing. We watch another child master something our kid hasn’t even begun to tackle yet and worry: “Am I missing something? Should my kid be able to do that?” With Lina, this can go to a very hard place. Simply interacting with kids her age makes her delays apparent. Add to that the periodic assessments that measure in black-and-white the gaps between her and typically-developing kids, and suddenly those comparisons color how I see my daughter. I am learning to better keep all that in its place. I can be clear-eyed about the goals we need to work toward, but with the solid understanding that my child is not defined by how she compares to anyone else. She is fierce and independent and goofy and affectionate, and she is growing and learning new things every day. That perspective has also made it much easier to avoid comparing Corin to any other child, or myself to any other parent, for that matter. We are all works in progress, thanks to the grace of God.
5. How to live in the real world – Neither of my children is perfect. I’m not perfect. My husband’s not perfect. Our marriage is not perfect. Our faith is not perfect. Our life is not perfect. We live in a messy, imperfect, sometimes downright awful, sometimes dazzlingly gorgeous world. I know – and I want the world to remember – that Lina is not some aberration in an otherwise perfect universe. She is a beautifully imperfect kid in a world full of beautifully imperfect kids. We talk about “celebrating differences,” but do we, really? We congregate in increasingly homogenous churches, neighborhoods and towns. We seek out people who are like us, because – let’s face it – it’s just easier. Let me turn this into a challenge: Seek out people who are different from you, and look for opportunities to really hear their stories. If in your daily life, you’re never uncomfortable or challenged to see past your preconceptions, something’s missing. It may be a cliche, but God’s children are a kaleidoscope. We come from different backgrounds. We come in all shapes, sizes and colors. We talk and move and think differently, and we all have our own struggles. The most basic thing God asks of us, after loving Him, is to care for each other. If we’re not doing that, nothing else matters. If we’re spending our lives in a comfortable bubble, we’re not living the gospel. Having a child with special needs doesn’t make me immune to this problem, but it does help me to leave my comfort zone and to seek to really understand people who appear to be different. I’ll say it again: I challenge you to seek out and get to really know and love people who are not like you. That’s how God changes lives, starting with our own.
It’s not a pithy Top Ten, but there it is: the ongoing lessons of my daily life. Stay tuned; I guarantee there is more to come.