Do you remember those teachers who would say, "Don't ever hesitate to ask a question. Chances are, if you are struggling with something, someone else is too?" Well, today we're going to put that theory to the test. I don't really have a question, but I am struggling with something. I have been trying for several days now to not write this post, but I need to share what I am feeling and hope that it helps someone out there.
It has been over six months now since Roo was diagnosed with Down syndrome. Soon after his diagnosis, I started to seek out support and encouragement from others whose lives have been affected by Down's. I connected with our local support group. I was put in touch with friends of friends. I sought out blogs by moms like me. And I have met some amazing people—people who have wrestled like I have to come to grips with their child's diagnosis. People whose lives were forever changed by two words, and people who are actively changing their lives due to the work God is now doing in their hearts as a result of this extra chromosome. I feel honored to know them.
I don't feel like I'm one of them.
Some of the moms I've met said that they never grieved the diagnosis—their only concern was the teasing and heartache that their child might endure. That wasn't me. Yes, of course, I did—and do—worry about Roo being teased, but that was far from my only sadness.
Some moms adopted children with Down syndrome, actively seeking out the blessings brought by raising a child with special needs. That wasn't me. Maybe it will be someday, but if God hadn't placed Down syndrome right in my lap, I would have had nothing to do with it.
Other moms looked more like me when they got the diagnosis—sad, scared, overwhelmed, maybe a little angry. (OK, I was actually way angry.) They cried and asked why and toiled through doctor's appointments and assessments and missed milestones. And, like me, eventually they realized that the heartache wasn't quite as painful. The anger wasn't quite as strong. The outlook not quite so dreary. And then, they realized that they had finally settled in to life in Holland. They are fully Dutch. The grief is gone, and they are ready to tackle this new life with excitement and vigor.
But that's where they lose me.
I read these blogs, talk to these moms, see their e-mails, and I feel terribly guilty. I am so amazed, so glad for them that they are adjusted—happy even. Why isn't that me? And I know, you're probably thinking, "Didn't she just say that they are doing great?" And yes, we are. Most days we as a family are doing great, and I take things one day at a time, and I love Roo fiercely. Please don't get me wrong about that. It's not that I am sad all the time or having trouble bonding with him or… anything like that. And I see huge things that God is doing in my heart through this. He is changing how I parent—all three of my kids. He is showing me how to live in the moment. He is giving me a passion for children around the world who need a voice. Those are all great things.
It's just… I still feel like a tourist in Holland. I feel like this isn't really where I belong. I've spent some time here, learned a lot, seen the sites, and I feel like I'm a better person for it. And now I want to go home.
I adore my baby boy with every fiber of my being, and I don't want to spend one single minute without him… I just want him to not have Down syndrome.
I am a better person for the things I have learned over the past 6 months. I have made some amazing new friends. But I would absolutely give it all back in a heartbeat. I would go back to being the "shallower" me who didn't know about the Buddy Walk or Reece's Rainbow or any of those things, if it meant I didn't have to worry about early intervention and cardiologist appointments and regular hearing checks and so many other things. I would trade it all for a "normal" life with three little ones.
But the bottom line is, that's not the way it works. Down syndrome is here in our lives for good.
Honestly, I have written and deleted and rewritten this post so many times, I'm exhausted. It's hard to tell you all that this is how I feel. It's hard to read the words of other moms and not think, "That's how I should feel." I feel like a lesser woman, a lesser mom. But this is it, the raw, honest truth.
But here's the rest of the story. I'm still struggling. And that's OK, too. I'm here, and I am fully committed to it. The grief may not be gone, but it is outweighed by the joy that Roo brings. My struggles may not be over, but I can continue to lay them at God's feet. And I will.
So if you're here and you're struggling… welcome. This post was for you. You're in good company here, friend. Let's meet for coffee and chat. We can go Dutch. ;-)