Today, I find myself looking back on this journey of raising two daughters with special needs. It’s an amazing journey, full of unexpected joys and unintended heartbreak.
But it’s my journey and I wouldn’t trade it for the world. On this journey, I found my God. On this journey, I found out how to love unconditionally. On this journey, I learned to fight for the things that matter, give up the things that don’t and how to know the difference when it’s not at all obvious.
On this journey, I’ve grown up.
As I raise my girls, I want to have no illusions, nor do I want to give up hope. I want my girls to live their best life and live out God’s purpose for them. That alone should dictate the choices I made for them.
But it is difficult when you have a world telling you every day that “success” means a career that pays a ton of money, marriage, a family of your own, and home ownership with as much stuff as you can cram into it.
I want my kids to succeed but when you are raising kids who’s strengths and limitations are outside the norm, it means you may have to redefine success for them. As usual, success comes in fits and starts, in tiny small movements, in the gentle breeze rather than the earthquake. And sometimes for me, as for my children, it comes with 2 steps forward and 3 steps back, again and again.
Today, I’m reposting this blog from 8 years ago, because I was struck by the fact that I’m still dealing with some of the same issues on this journey.
When Amelia Was at Daycare…
Amelia’s preschool graduation in 2008. YES, it’s a thing.
Today at daycare there was a nice little envelope in Amelia’s cubby. I assumed it was a party invitation as usual, but it turned out to be a lovely note from one of the girls in Amelia’s daycare class. She is moving on to full time kindergarten and Friday will be her last day. Amelia and Meaghan really like each other, and Amelia frequently hugs her. Meaghan’s mom has done a good job – it was a sweet little note telling Amelia how much she’ll miss her and especially her hugs.
Amelia was not too interested in it, but I showed her the hearts on the cover. I brought over a picture of Meaghan and explained what the card was about and then read it to her. She seemed to have no interest and zero comprehension.
Little things like this on a daily basis break my heart. I really want her to get it. She is nearly 6 and it’s hard to admit that she’s this far behind.
Socially, she did get past that but she still struggles linking up people and what they do without being visible. Onward:
I’m not overwhelmingly sad, though, or angry or upset or “unaccepting” of her condition. An interesting thing, you see, happened yesterday. Chris took Amelia and his mom to Saucon Valley Mall movies to see the Star Wars cartoon, while I took Zoe for some shopping and a walk. Zoe had a fit that she couldn’t play in the water (we had not brought a change of clothes) and it took her a LONG time and several blocks to calm down, all the while people looking at me. (I don’t care, honestly, if your baby was caterwauling or tantruming I’d completely ignore it myself.)
Ha, good for me!
Anyway, they pump in music and during our 2nd hour, they played that Natalie Merchant song “Wonder”. I saw this video once and there is a Down syndrome child in it, and I’ve always just thought the song was gorgeous, empowering, feminist, and incredible. I have been quite worried for Zoe bit lately, as I’m wondering if I’m as naive about her prognosis and her future as I’ve been about Amelia.
I turned a corner and the lyric came, “she’ll make her way”.
And boom, it hit. She will make her way.
They will BOTH make their way.
They are “perfectly made”. They are part of a bigger plan, one that I can’t see, but one that I knew existed, even before they were conceived, when we were planning these children to be.
I have no doubt now. The excruciating events of this summer have convinced me that into each life a friggin’ torrential downpour will come, but it’s all part of a masterpiece we cannot see nor even, at times, fathom. There is so much beauty from things the world calls broken, like Zoe’s capacity to break into hysterical, infectious laughter over nothing, or how Amelia comes running with a hug and an “OK?” when you’re crying.
Ah, crap, I’m crying now, with joy and absolute smitten love over my two girls.
Fast Forward to Today…
Those last few lines above? They are why I wanted to repost this post. I *still* need these reminders. Maybe I always will but the good news is that my kids are moving forward. Amelia is becoming a young lady and Zoe is discovering her tween personality. As for their futures, I know that my only choice is to put it in God’s hands.
But how can I know that my decisions are right? Last night at Bible study, we discussed how do you know that God is telling you to do – or not do – something. The answer was easy for me, because during the last few days, I had gotten several big messages in different places alluding to the same thing – teach your kids God’s laws. My summer schedule is still out of whack so I know that I have dropped the ball these last few days.
Beyond that, though, God is been reminding me that is not just about teaching His ways to my kids. Why do we teach our kids our faith, beyond the fact that God tells us to? It’s to protect them, inform them and give them a solid foundation that they can choose for themselves in their good time.
It’s more than that, too. In all things, we teach our kid because, sooner or later, she will no longer be your responsibility, even if she has special needs.
But if they follow God, they will ALWAYS be God’s responsibility. As a parent, God has to remind me to give them to Him.
That means not worrying about their future, and that, my friends, is really hard.
This post from so long ago reminded me of that. After a very difficult spring, we accepted the fact that Amelia’s middle school was shut down before the completion of her middle school career, that our kids are going to different schools most likely from here on out, that many other scary changes will come hard and fast this year and the kids need to weather that.
In all things, though, they – and I – need to hold fast to God. That’s the only way they can make their way. It’s the only way I can make it too. He is greater than any disability, inability, misconception, assumption, prejudice, discrimination, laziness, crime, rage, hurt, tantrum, confusion, anything you’ve got. He is great and their faith in Him will give their lives beauty, meaning and purpose, like it has for mine. And in all this, then, I’ve discovered how they – and I am – am perfectly, purposely made.
Originally published Aug 18, 2008.