I wish I knew…Oh my, we could be here a while. There is no end to what I wish I knew. To what I want to know. To what I am trying to learn and what I wish was just deposited into my tiny brain without me having to work so damn hard for it!
Lately, I’ve been reflecting and noticing what I’ve learned over the last few years especially about medical and social issues relating to disability, of course, most specifically to Down syndrome as a condition, and the ramifications of trisomy 21, particularly as it, pertains to a variety of potential medical implications.
I’ve learned so much that I’m co-authoring a freakin’ book on the subject. (now done – here: The Parent’s Guide to Down Syndrome) I’ve reached that point where, when I go to sessions, webinars, or classes relating to subjects surrounding medical and social issues regarding Down syndrome, I don’t hear much new-to-me. It’s weird. Note: This does not – DOES NOT – mean that I know what the researcher, doctor, or professional speaking on the subject at hand knows; it means I know the “first level” stuff that they can squeeze into the hour that they get to present. It means to know more I have to dig deeper. Hopefully, it also means I’m ready to teach other people this “first level” information.
Wait a minute, aren’t we talking about What I wish I knew? Well, alright.
Ok, just a minute. So the last time I was in a class with a super-heavy expert, I was thinking…yeah. I know this. Then I started thinking, but I didn’t know this 25 years ago, when my son was born. I didn’t know it 20 years ago when he was a tiny, tiny kindergartener. I didn’t even know it ten years ago when he was a teenager.
Personally, I read one book on Down syndrome shortly after Marcus was born and then said, (profanity here), we don’t need a book. This book does not and will not define my son. And I left it.
Now…I’m writing that. book.
Over the years we’ve talked about Down syndrome so little in my house, that only this last February my husband looked at Marcus in shock when Marcus himself said “Down syndrome.” Marcus was 24 years old and Quinn had never heard him use the term.
Why did I bring that up? Right, because some of the parents I talk to now are all-down-syndrome-all-the-time. Of course, I’m sure that looks like me, too, cause – well, look around. (PS, also, did I mention the freakin’ book?)
ANYway, I wonder, what if I had taken the time to learn more 25, 20, 15 years ago? Instead of just living our lives. What would be better? worse? different?…if I knew then? More importantly, because it’s now, How can I help other parents the most?
What are they wondering, I wish I knew…about?
I can only guess, and my guess is it’s not the bits about thyroid issues, or IEP’s, or the ABLE act. Nah. The I wish I knew(s) are more likely:
- I wish I knew if he’ll be able to make friends.
- I wish I knew if she’ll read.
- I wish I knew if he’ll have a girlfriend.
- I wish I knew if she’ll outlive me.
- I wish I knew if he’ll want to live away from home.
- I wish I knew if she’ll get a job.
I’m probably right about a few of these. Which, of course, a book cannot answer. Sure, we talk about housing, and employment, and relationships, and all of the new opportunities and growing possibilities because, well, it’s out there and true. But let’s face it; we don’t know with any of our children what will be.
We put this huge weight on what the future holds for our children with disabilities, while we encourage typical children to fly, to grow, to play, and to be.
What is with that?
Maybe that’s not fair for me to say, because I only have one son. I’m just going off of impressions I get from articles, the media, and other parents. Ok, so 700 words in and we’re finally getting to it…I wish I knew.
I wish I knew how to help parents of young children with Down syndrome (and parents of young children with any set of different abilities) to, well maybe, don’t try so hard wishing to know what will. Maybe just go with it. Maybe encourage both your typical and non-typical children to fly, to grow, to play. Maybe you should play a little too.
I wish I knew how to teach you that.
Although I can’t tell you, “It’ll all be OK” (even though I want to) because I don’t know that for your child or any child.
I can tell you this: worry does not help you.
“Knowing” a future is not a fact.
I wish I knew how to give you today.
This book I’m working on, I do this to help your busy brain, give it something to chew on, but you are in charge of your heart.
Go love with it and, well, then you’ll know all you need to know.
This was originally posted as a Finish the Sentence Friday post. “I wish I knew…”
I’m posting it again today as a classic #TBT – still true.
Host: Kristi Campbell from Finding Ninee
Co-hosts: Jill from Ripped Jeans and Bifocals and Me! Join in!
*PS – “That Book” is now ready for Presale. Check it out here:
The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood
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Congrats on co-authoring the book. I think if your title is anything like “What I wish I knew” then someone who is in your shoes won’t put it down and say, “I don’t need this (insert profanity here)”.
Plus resources are all the rage now 😉
Thank You! And, well I actually encourage book throwing if they are reaching overload. Now a days, with access and overload of information. ..one book to focus on may actually be a relief. One hopes. 🙂
My new favorite. Just cuz, well, awesome.
Wow – thanks Kelly
Good stuff, and as a conference junkie, I totally get you about going to sessions! Let’s dig deeper, I hear myself saying 🙂
Spot on about the worrying about the future. With a grown daughter flown away, I kicked worry out the door with Caleb. Planning and worry are two different things. We live in the moment as much as live allows!
Yes! We learn this as we go, that’s for sure.
This is such a beautiful post, Mardra! I love it. You’re so right about the things we wish we knew being the ones that there are no answers to. And YES to the worrying not helping and to encouraging our kids to fly and to play. I love that. Thank you so much for co-hosting Finish the Sentence with me!!
My pleasure! Off to read and enjoy and learn more from these great bloggers now!
I wish I knew… what kind of coffee supports your brave, thoughtful and relentless writing. One presumes it is coffee, but I’m guessing other beverages are involved as well.
Thank you Brian. I’ll never tell, unless we’re in a coffee shop and it’s time to bust out our caffeinated superpowers as we journey into solving all of the worlds problems, as can only be done in coffee shops and wine bars.
Wow, I’ve loved discovering your blog through FTSF! There are SO MANY things we don’t know the answer to…so many things. Have a wonderful weekend!
“I wish I knew how to give you today.” That’s it. Summed up right there. Such a thoughtful post, Mardra. Worrying about something doesn’t prevent or create it. Thanks for the reminder. When I lie awake on those nights where worries loom huge I’ll remember this. Thank you.
I hope you do, because I know that’s the hardest time to remember. 🙂
Mardra, a lot of what you write about in your post resonates with me. I encourage both of my kids (one with ASD and one NT) to fly. It’s just that my older boy likely will need a much greater support for the rest of his life than the younger one. We as his parents are the ones who need to organize that support. So while I still want my oldest to fly, we’ll be the ones providing the wings and flying lessons……
Yes! We do need to equip our children to be able to fly, with flying still being the intention all along. That’s it!
“I wish I knew how to give you today.” That line really struck me, and it made me think of all the parents who spend today and everyday worrying about their child’s future.
Congrats on the book, and it’s so nice to meet you through FTSF!
True for all parents – for sure. Thank you!
Great post! I think that going with the flow works for all parents, at least it for sure has for me. Congrats on the book, what a wonderful accomplishment! Have a great week!
Thank you and yes 🙂
You DID give us today. You gave us your present…your “right now”… your “I know” and “I feel”. And you shared it beautifully. Thank you!