Tuesday, January 4, 2011


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. ;-)


Patti said...

I just had a mommy email me and say the exact things you just said. And she asked me why? Why was she still here and I'm here..
so I asked if she read this post


or this post


or this


and said that I am just a TEENY bit ahead on the grief road.

And those posts were just 2 months ago. So you just never know what lies around the corner...

Time, life, etc. heals and I'm sure you know that guilt mixed with grief is a load TOO heavy to bear.

You're doing so good, dear friend- 6 months is not much time to process a whole change of life, and let some dreams die. You know?

It's gonna get better, I promise:)

And believe me- I KNOW how much you love Roo. Grief has nothing to do with that love, and everything to do with the fact that we just don't want our kids to struggle.

LOVE YOU, friend!!

Heidi said...

Katy, I've certainly never been through anything like you have, but I don't think what you are feeling is unusual. I would guess that a lot of people don't put it in writing because of the guilt that may accompany it. My David has a neurological tic. When he was diagnosed we were told he would probably out grow it because it is so mild, but he hasn't, so far. It came back worse than ever this year, and we were told (by a non-professional) that these often turn into a vocal tic. I want it gone! I don't want this to happen. It won't change how I feel about him, but I don't want to deal with it. I want him to outgrow it like we were told he would. We'll see what happens, but if it's something we have to deal with long term we'll do what we must, but I know I won't like it one bit!

Thanks for being transparent. We all have things that we have to deal with that we just don't want to, no matter how much it may make us better. :)

Wren said...

I know EXACTLY how you feel! I love Sutter beyond words and I have accepted that Ds will forever be a part of our lives....but if I could wave a magic wand and make the Ds go away I would in a heartbeat! I don't want him to struggle, I don't want to have EI teams at my house, I don't want twice a year evaluations of my baby, I don't want to worry about delayed milestones or medical problems....

Am I a better mom and person because of Ds and having Sutter - YES, but that doesn't mean I don't wish it wasn't a part of our lives. I have however come to a different place recently, a place of acceptance. The reality is I can't go back and the only way to not have Ds in our lives is to not have Sutter and that is simply unimaginable....therefore I accept Ds and all that it brings.

Just wanted you to know that you're not alone and there's nothing wrong with how you feel! Big hugs!!!

erin said...

I love you.

Jenny said...

I am in tears right now...Thank you for sharing this! I have been struggling with some of the same thoughts and feelings...I have been fighting off writing about it cause sometimes it is hard to be honest about not being happy or totaly ok with the Down syndrome yet...This post really helped me, this was just the thing I needed to read today...Thank you so much for posting this and being so honest with your feelings!

Maryn said...

Hugs and love, Katy.

There's no "right" or "perfect" way to be a mama in any circumstance or situation; we're all dynamic unique people and our kids are all dynamic and unique - and as they grow, we grow. Or that's what the experts say - sometimes I really wonder if "they" even have children ;)

Being honest with yourself is really all you have to do.

Elisabeth said...

Thanks for sharing this post. I don't think it's wrong to still be grieving and struggling. I love my Wesley with all my heart and am thankful that God gave him to us, but if God were to offer to heal him, I would jump at the chance. And you're right, this isn't where we belong. As I read your post I kept thinking, the reason I feel like a feel like a tourist in Holland is because really I'm just a tourist here on earth too. Heaven is my home, and when I get there, then all things will be made right. I long for the day when I will see Wesley in his perfect body and mind.