Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Thursday, April 26, 2012

Would you take it away?

The East Side Moms group hosted a Mom's night out this past week. We had six members show up that night and I think we ordered about half of the menu at Latitudes Cafe in Anderson Township. I like going there because not only were the owners the best men in our wedding, but they also share a birthday with Wyatt. Good men, good day, good food.

Our groups' conversation started with the usual catch up with how everyone is, and reminding each other of names of kids, etc. for those of us that hadn't seen each other in a while. Attendees included Tika, Callie, Missy, Melissa, Kelly and myself. We ordered our drinks and food. Soon plates arrived and were passed and shared. Our conversation was light at first. Our book club book was passed to those of us who hadn't had one yet. We're reading Kelle Hampton's Bloom and we briefly discussed it. Then, as if on cue, our Kelly proposed a poignant question:

"Would you take it away?" she asked.

I knew what she meant immediately: Would we take Down syndrome away from our children, if we could?

I was surprised by my immediate reaction: "Yes," I said emphatically.

But then I paused and thought, and listened. Other Mom's chimed in. I heard a few "no's": it's not something they'd change because of how it's affected their lives. Others agreed with my response and said "yes": they wouldn't want their child to struggle if they could choose. I think we were about half split. Either Tika or Missy commented that she loves how we can be talking about something light one moment and heavy the next without skipping a beat. I agreed, then I pulled back and thought, "you know, maybe I'm not so sure about my answer."

To be honest, I don't know if I would take it away or not. Part of me says no, it's what we were given. Part of me says yes, I want Wyatt to have the least difficult life possible. But I think it was a poignant question because earlier this week I was describing my bout with the What If's and the Why Me's. This question falls right in there, with a twist. But how do I even start to rationalize my answer to this question - on either end? Do we look at a disability like Down syndrome in the same capacity as Cancer or Blindness or ADD, even? If my child was sick and dying with Cancer, would I want to take that away? Yes. Blind? Not sure. ADD...? Nah...I'm pretty sure Eden has taken after me and is equally affected by that disorder, lol. Would I take away any of my children's other genetic traits? Eden has blonde hair and doesn't look like me. Would I change that? No, that's silly.

Wyatt isn't "sick" and he's not dying, at least not anymore than the rest of us. Will he have some uphill battles? Absolutely. So what? So will the rest of us. If we take the Down syndrome away, what else are we missing? What other things has that brought, or will bring, which completely enriches our lives? Would I take away what God has given us?

At the end of the day, it really doesn't matter if I would take it away or not. I don't have the option and it's futile to try and dreamily envision a different path. Wyatt is Wyatt. Eden is Eden. I have two great kids, just as they are. Just as HE made them.

And besides, if I took away Down syndrome, I would have never had the chance to sit down and have dinner with those five [EXTRA]ordinary women and have an awesome conversation on a random Tuesday evening.

Tuesday, April 24, 2012

The "What If's" and the "Why Me's"

I have days that just don't go as planned. A lot of them lately. I have been feeling overwhelmed and ineffecient, and when I feel overwhelmed, I start to feel insecure. That's when two very unwelcome visitors start to pop up in my head: The What If's and the Why Me's.

They don't visit very often, but when they do, it can really throw me for a loop. Since the last few years have been a struggle for me and my family, I could give you a laundry list of the What If's and Why Me's.

The first one is usually: What If Wyatt did not have Down syndrome? Then to: What If something happens to Eden? What If my Dad hadn't gotten sick and was still alive? What If I'm not a good teacher? What If all my hard work is for nothing? What if, what if what if....!?

And then there's the Why Me's: Why was I chosen to be Wyatt's Mom? (somebody must have some semblance of confidence in me). Why did I not find my Purpose until my 30's? Why do I have to drive such a crappy car? Why can't I seem to get organized in my house? Why did I have to lose my Dad? Why me, why me, why me...!?

BLEH! I hate those days. I hate those questions. But sometimes, in the midst of the What If's and Why Me's, you actually find the answers and some peace.

You see, I realize that I am the only one who was ever meant to be Eden and Wyatt's Mother. I was meant to lose my father when I was 35. I will work hard to be a good teacher. I will, one day, be able to buy a new car.

I will be OK.

Self doubt can lead to some terrible feelings. But God, IMHO has already done all the worrying for us. He has made us perfectly and wonderfuly, just as we are. He has a PLAN and a WAY set out for each of us. I'm not saying that it's going to be easy because of that, I'm just saying that's the way it is. Jeremiah 29:11 says "For I know the plans I have for you; plans to prosper you and not to harm you." And sometimes, we can't see the forest for the trees. The day Wyatt was diagnosed, I was flooded with he ugly What If's and Why Me's (someday I will tell you about it). And to have thought then that I would feel like I do now about this awesome, [EXRTA]ordinary, perfect little boy...well you just never know where God is directing your purpose.

So, when the overwhelming self-doubt, that all of us experience in some way or another, comes shouting in your ear - tell it to hush. Someone's already got it all worked out.

Here's a wonderful example:

In my cruddy evening of What If's and Why Me's, I was given the gift of reading a beautiful letter that was written to a little [EXTRA]ordinary baby, Nora Rose. Nora's Mom, Aleisa, chose to carry her daughter to term after doctors told her Nora was likely going to die because of a disruption in the split of her chromosomes at the very beginning of conception. Nora ended up with three strands of the 18th chromosome, instead of two (Wyatt has three strands of the 21st chromosome, for those of you wondering).  Despite the statistics and mortiality rates, my new, [EXTRA]ordinary friend Aleisa chose to continue her pregnancy, I'm sure with MASSIVE What If's and Why Me's. Here is an excerpt from her Blog about the answers to some of those questions: click here for Nora-4 days old. Get your tissues, first.

Monday, April 16, 2012

A few beautiful weekends

The weeks are splattered with ebbs and flows of panic and stress as school comes to a close. But this past week was bookended by two wonderful weekends. The laughter of my family, kids and friends is keeping me going!

First up, Easter weekend was amazing. My husband had a rare trifecta of days off in a row: Friday, Saturday, Sunday. We had an Easter party, dying eggs with family, a Saturday night date at the second Red's game of the season and Easter Sunday with church service and an afternoon flying kites and putting together big wheels at my Mom's house. The weather was perfect. I haven't' had such a great weekend for a long time...

Getting ready to cross the Purple People Bridge on our date
Cousins riding Big Wheels at Mom's
Dying eggs at an Easter party thrown by Miss Polly's Playroom (photo by Pollyan Camery)
Wyatt was guarding the Easter treats (Photo by Pollyan Camery)
Eden dying eggs with Aunt Lisa (pictured) and Great Aunt Joyce (background and below)
Easter stickers on our faces! (Three generations of Scheerer women, here!)

I'm also super excited that I got to spend more time with my Ds (Down syndrome) family this weekend! I love both my groups: the the East-side Moms group and the (Extra)Ordinary EO Friends group for different reasons.

The East-side Moms group is special because they have Mom's of kids of varying ages. There's women who have been-there-done-that. They are great to lead and gently support us newer Moms and the cycles goes on. Additionally, all these Mom's live in my general area of town. Which means I could meet them at the park, see them at the grocery store or just chat about the great new shop or restaurant nearby.

The 2011 birth club group, EO Friends, is unique because they all have kiddos about Wyatt's age. Apparently the DSAGC is excited about this new group and called us "trailblazers!" The Mom's in this group are going through similar challenges or therapies and we can use each other to bounce ideas off of or chat about how to do something best. And sometimes just vent about that person who just asked me if my 14 month old is 6 months old (in their defense, Wyatt is small).

BOTH groups are great because, besides having our one [EXTRA] chromosome in common, we find we have so much more as our friendships grow and progress. I love the diversity because there's all types of families and kids (both with and without Ds).

Saturday was the first meeting of the EO Friends group. We got together at our friend Leesha's house. It was so fun! We all just plopped the babies in the middle of her family room, took our shoes off and sat around and noshed on dips, chips, fruit and a fabulous punch (Leesha won't share the recipe, boo! haha). There were 7 of us and it was a really lovely afternoon, albeit pouring down rain. My sinus headache kicked into high gear as I left and forewent shopping for an afternoon of watching The Lion King with Eden and Wyatt.

Sunday was the East-side Mom's Group. We had a local photographer ask if she could do mini portrait sessions of our group with our kids for free in exchange for her using them in her Mother's Day marketing. We gathered at our friend Lisa's house (which is GORG), right on a golf course and thankfully the weather did a 180. We all had our time with the photog and our kids were hanging out and playing and adults chatting and having a mid-afternoon mini-glass of wine. It was a beautiful day and Trisha, our photographer, captured some [EXTRA]ordinary moments.

Here's a link to her website: Photography Inspired by TLC

But a few of our previews are below. She shot 19 Moms and kids in a day!

Me and my Wyatt: PURE JOY!

Emily with her twins, Nora (top) and Katie

Kelly and Shawn

Lisa, Jack and Vaughn (sitting)

Melissa with Lillianne (top) and Violet

Tika with Leightyn (toddler) and Bayli
Tell me about your [EXTRA]ordinary support group, friends or family that helps you do all that you do! I could have never maneuvered this last year without the support of the amazing women in my groups!

Friday, April 13, 2012


My brother-in-law, Reese, told me the other day that I favor Wyatt on Facebook. It bothered me at first, then I admitted it: I do. But not just on Facebook. I think sometimes I favor him at home, too and I actually recognized this a little while ago but was afraid to admit it. It bothered me again.

I think favoring him has happened for a few reasons:

1. He's so darned cute. I just can't get enough of him! (I mean really, who can't help but love those cheeks?)
2. He's little and I feel over-protective of him
3. I feel I need to work with him on Therapy and things a little more than I need to with Eden

I don't really have much control (or want to change)the first one! But I think the other two are changeable. But maybe it's not so much a drastic change in behavior, but just a simple change in attitude, for a variety of reasons. First, I don't want Eden to grow up feeling like I care for Wyatt more than I do her. She is my beautiful little first-born, special girl. Secondly, I don't want to "baby" Wyatt and do more harm than good. Being overly attentive can actually reverse some of the work I do to make him rely on his independence. I have been trying to foster this in him from the beginning. I think I need to look at it as growing both of my kids in their own unique ways ways. They are not the same people, so their development, personality and strengths will be different, but I should not be more or less attentive to one than the other. Wyatt isn't the only one who needs me (which I've always known in my head, of course). I DO need to work with Eden on developmental milestones and I DO need to play with her, just as much as Wyatt. I love playing, learning and working with both of them! So in the future, I'll just make sure that happens - equally.

I'm certain this aspect of favoring isn't a new concept. And I'm sure it's not even a concept related to just families of kids with Down syndrome! Lots of parents struggle with favoring one child over another, for each of their unique reasons.

So...Do you play favorites?

Have YOU struggled with this? How have you worked through it already or are you now trying to figure this balance out, too? I'd love to hear your stories, perspectives and advice!

(I simply request that you be respectful and responsible in your comments on my blog, please!)

Wednesday, April 11, 2012

Coming up...!

Very excited! We now have TWO playgroups that are going to happen this weekend...stay tuned!

Monday, April 9, 2012

The Pampers Commercial

As I get closer to finishing my masters and my final class for my resident (read: permanent) teaching license, I have been very reflective. I think some days I'm trying to hold on to all the memories of the past few years like they are going to go somewhere!  This has been a crazy three years, but none as wild as this past year.

This week, I was reminded of a very stark memory of The Pampers Commercial. It does not matter where I am or what I'm doing, I have to stop and watch the whole thing. And I get teary-eyed every time. It is such a powerful commercial for me because the first time I saw it was right after Wyatt was born. I think it was one of the first realizations that:

1. I was not alone in this


2. That he is my baby.

He is MY baby.

He is my BABY!

When Wyatt went into the NICU, we really did not have a full picture of what was happening. It was a very lonesome feeling. We had cut ourselves off from contact with many friends because we just didn't know how to tell them what was happening. How could we? We could barely process it ourselves. We weren't sure at first if he was okay or not and I was wrapped in complete, debilitating fear that he would never come home with us. Those first few days I was so scared to love him as much as I knew I did. I didn't want to lose him and let myself feel that much pain, or even happiness for that matter. I tried hard not to think too much, but all sorts of thoughts flooded in without warning or control. When I saw this commercial, it was breathtaking for me. It was healing for me. This is when I started to come out of those cement shoes of fear. We started to understand what was going on and that Wyatt was going to be fine. You see, there are many, many types of [EXTRA]ordinary families in this world (with or with out the extra chromosome). "Typical" is so far from the norm. We were not the only ones out there going through something. That realization was a great relief (as obvious it should have been!).  That day, I had finally let myself see Wyatt as the special and wonderful and perfect baby he was, just like I hoped he would be. He was all MINE. And for one of the first times, I felt immense gratitude for him.

This commercial wrapped it all up for me for some reason. And now every time I see it, I'm transported back to that day; the day I stopped holding back and started to release my fear of the unknown and embrace it with everything I had.

Monday, April 2, 2012

Our [Extra]Ordinary Eastside Group

In Cincinnati, we are fortunate to have lots of medical support. Children's Hospital of Cincinnati is one of the best in the country. We also have one of the largest and most active Down syndrome associations in the country in the DSAGC (Down Syndrome Association of Greater Cincinnati).

I know that not everyone in the US (and even more when you look globally) has these resources in their back yard like I do. We are the 1% and I'm grateful for this. Some people have to travel very far distances to be near all the services we take advantage of, just 15-20 minuted from our house. But regardless what you have in your back yard, our greatest resource can be others who are traveling through a similar life path. I'd bet you that there is another person or family with Down syndrome or another disability relatively close. In fact I did bet, and I found way more than I ever dreamed I'd find.

Thus, one of my greatest resources: The East Side Mom's Group and Playgroup.

We are a group of approximately 50 or so families of kids with that [EXTRA] 21st. Yes, I said 50. In just one area of the city. I about passed out when I heard that number. I thought, I really don't see that many kids with Ds around town. But I realized that I wasn't looking.When I did look, I found a wonderful resource of older and younger Mom's and families of kids with Down syndrome. Kids with unique personalities, likes and dislikes, and varying abilities and gifts. I was hooked from the beginning. I am so incredibly proud to be a part of this group. We are a group of resourceful, dedicated, educated and strong women. What I don't know about one aspect of Down syndrome, someone else does. The older Mom's help us newbies find our way and pass down information. The newbies help remind the Mom's of older kids how sweet it was to have a baby and also just how far they've come. It's a perfect system (or at least pretty close)!

We try and get together in two ways: a playgroup and a Mom's night out. Each of these two events run about every 6-8 weeks. It's a great way to see other Mom's, let the kids play together in a peer group and just keep plugged into what's happening with everyone. It's great because, sometimes it's tough to go out in the world and see all the things other people's kids are doing at Wyatt's age. I see kids that are giants compared to his slight frame and weight. I see other kids who are walking, talking and into everything. And I see parents who love to share about how great their child is. Yes, I know you think your child is gifted at one year, and that's great (really, it is). But some days, I'm just not ready to hear it. Some days I've just come from therapy where I'm grossly aware that Wyatt cannot crawl yet, and is probably months away from doing so; or that he has very transient skills that are here one day, not there the next and don't return for long periods. But when I'm with my Mom's group, I am with people who get this. I'm with people have walked in my shoes. More importantly, I'm with people who can remind me how great our lives really are and with people who celebrate the little things (thanks for reminding us to do that, Kelle Hampton). Instead of Wyatt being the obvious tiny little guy in the room, he's in the mix of other kids who are like him. Don't get me wrong: I think it is vastly important for Wyatt to be around other typical kids his age and older. And I am in no way saying that I can't or am unwilling to celebrate your beautiful, typical child (quite the contrary). But sometimes, it's nice to know that I'm not the only one who feels that tinge of "different" sometimes. I love that I can get advice from these women and families and bounce ideas off them about various things, like how to incorporate therapy into our everyday lives (thanks to Missy Skavlem for that one).

Overall, it's just a really nice addition to our lives. I joke that it's our new [EXTRA]ordinary family; a family I never knew I wanted to be a part of. And that makes me happy.

CORRECTION: I'm told we have over 100 members in the Eastside Group!! However, approximately 52 are considered "active members" and included on our private Facebook page!

Our most recent playgroup at The Honeybee Bookstore in Maderia, OH. We had a little private concert by April Eight and lots of fun with all the kids...of all abilities!

April Eight captivates. Well, kind of, haha : )

Wyatt (the little one in the center) flirts with Becca (with the bow in her hair)

Yay, Nora! Look how strong you're getting!

My beautiful Eden (in blue) and handsome Wyatt, Becca and her sister next and Sean in the back

Shake, it Wyatt! (I love those cheeks)