Watching Life's Meaning and Purpose Unfold

God has made this life a true adventure. Sometimes there are very fun parts, sometimes very scary parts, sometimes there are happy times and unfortunately there are sad times, too.

What I think what we often search for, is in meaning in it all. We do not have God's vast wisdom as to his big plan, so that feels very dwarfing sometimes. And sometimes you are downright angry about the things that happen in your life.

I have two [EXTRA]ordinary friends from college named Molly and Kendrick. I met them somewhere around 1997-1998 when I was at Anderson University. Molly was in my sorority (which was more like a social/service club) and Kendrick was good friends with a group I hung around. I liked both of them from the start. They are, at their core, beautiful people. Happy, faithful, often quiet at times (which was probably a balance to my un-quietness, haha!). They were laid back but I automatically held a connection with them. Molly is strong, not afriad to share her opinion or tell it like it is. Kendrick is strong also, but in a different way. A quiet confidence that fills the room when he enters. As we expereinced some really, really fun times together. We also experienced some tough times, as well. Like when we lost Brian,  a very close friend (and Kendrick's one time roommate) at the age of 23 in a fire. I'll never forget walking onto our old hang out and hugging Kendrick after Brian died. It was healing, and I will never forget it.

Molly and Kendrick married after college, so their relationship has progressed throughout the years. I have watched it progress from the outside. As time and space passed, our friendship reduced itself to primarily a Facebook connection. They had two beautiful children, with some typical struggles of family life, to my knowledge. I enjoyed catching up with Molly on her page and watching the kids grow.

Fast forward to December 2011. Molly posted that her daughter was going in for removal of a tumor. cancer. That big, giant word.

CANCER. 

I was heart broken for them. I wanted to do something, but my Facebook posts about praying just didn't seem to suffice. But then reports were positive. Whew! Things were looking up. Her son had surgery to repair a twisted spinal chord that was causing him issues. It seemed like things were heading toward the "norm."

But then we had the post. Izzy's cancer was back. It was back with a vengeance. It was explained that it was a neuroblastoma. Stage Four. My heart ached. I cried tears of pain and sorrow for them. I cried out to God begging Him to heal her. When I found out they were coming to Cincinnati from Indianapolis for treatment, I was almost excited. I get to see my friends! (great) $%*&&*^@%(& I don't want to see them for this reason.

When I finally met with Molly at Cincinnati Children's Hospital, it was wonderful. Molly has since shaved her head for her daughter. She ROCKS IT OUT. We quickly got to work chatting and catching up on our lives. We talked about our kids. About all the really stupid things people say to us about kids with special needs. And about our understanding that people just don't understand what to say if they've never experienced a major change in expectations for their childrens' lives.

I have mass love for this woman, for her husband and her family. She embodies strength that not many people could ever even hope to have. She is [EXTRA]ordinary, as well is Kendrick and her children.

I encourage you to follow their story on her blog (click HERE) or on Facebook (click HERE).

Pray for this family. Love this family. They are amazing people and their daughter is a fighter.

If you are interested in donating a financial contribution, please email me at bekah47@hotmail.com and I will make sure the funds are directed to them.

Life is not what you expected sometimes. But sometimes, regardless of how much it sucks, you get to watch a purpose unfold. Izzy's meaning and purpose is to not have cancer, but maybe, just maybe it's to embody strength and to unite people through her beauty and the amazing faith of her parents.

God is good. God is faithful.

That Never Really Entered My Mind...

For months last year, as we were working through what having a child with Down syndrome meant, we were very micro focused. It's hard to see the forest for the tree sometimes. And we were definitely seeing the trees only. Sometimes only one tree at a time. For a bit, it seemed like life was never going to be the same. There are things, though, that have happened recently that never really entered my mind to remind me that our life is quite often the same as it would have been with or without Down syndrome.

The big thing that I encountered recently is.....VACATION! I am blessed to have a really [EXTRA]ordinary set of in-laws. Although my husband's parents are no longer with us, he has some wonderful Aunts and Uncles who are a big part of our lives. And he has fabulous sisters. They are funny, caring, compassionate and they really love the kids. So this past week was family vacation. We participated first in the Scheerer Family Reunion in Atlanta and then we went to North Carolina to a cabin in the woods for a week. (Where I had intended on blogging, but we had no wireless access or cell service). We had a really wonderful time with everyone (save for a few panicked moments from me about scheduling and packing!).

We had a similar vacation in the Smoky Mountains when Eden was about 19 months old, just a few months older than what Wyatt is now.

As we were getting ready to go hiking one afternoon, Josh turned to me to say, "When I think about where Eden was when we took her on vacation and where Wyatt is now, I really see a difference."

I acknowledged his moment of awareness of Wyatt's delays. "Yes," I said and continued, "but Eden was 3 months older and alot can happen in those 3 months!"

"True," he answered matter-of-factly.

That conversation really got me thinking. Yes, Wyatt has delays. BUT - when planning this vacation, Down syndrome never really entered my mind. I mean, it was just a given: Wyatt was going with us. We didn't have to make any special arrangements, make any special food (other than you would have to modify slightly for any 16 month old), and we didn't worry about the fact that he's not walking. We just went right along like everything was completely the same as it was when we took Eden on that previous vacation. I did nothing different to prepare.

We were able to do lots of great things, like go to the Georgia Aquarium, go hiking (with Wyatt in the same hiking backpack we used for Eden a few years ago), go gem mining, relax, make Clover necklaces, go into town for dinner, make s'mores and generally have a good time. See below for some pictures from our first family vacation as a family of four!


I know it sounds so simple, but this vacation is a case where things that never really entered my mind have made me FULLY aware that Down syndrome is not an interruption to our lives. Sometimes it takes some alternative routes, and sometimes things take a little longer or require a little more effort, but it doesn't interrupt the natural flow of our lives. We can do all the [EXTRA]ordinary things with our lives that we would have done anyhow. I think it's important for people to know this. Especially since there are so many tests and things out there to identify the chromosomal abnormality early. Some people use these tests for education and preparation. Some people, or most rather, use them for selection of the fittest.

What a bummer it would be if Wyatt wasn't in this world. His smile brightens many of our days and his laugh is infectious!

The truth of the matter is: Wyatt is more like other kids than he is not. And although Down syndrome has brought us [EXTRA]ordinary new friends, personal growth and experiences, life isn't all that different at the end of the day. And that is something that doesn't always enter my mind, but is a thought of great importance. 

For more on diagnostic testing for Down syndrome, please, click HERE.

Eden and I (with Great Uncle Dan to the far left) on a boat!

Aunt Kelly points out fish to Eden at the Georgia Aquarium

Wyatt is super excited watching the fish at the Georgia Aquarium

Great Aunt Carol with Eden and Wyatt

Josh and Wyatt ready to go!

Josh and the kids at our Waterfall hike

"Hey baby, what's up?" Wyatt is stylin' for our dinner out the last night of vacation!

 

Cincinnati Down syndrome Support Line, May We Help You...?

We may as well have an 800 number.

One call out and the troops rally. Although it's not an actual hotline, our East Side and Extraordinary Friends Mom's Group Facebook Page pretty much operates as one. It's amazing what you can accomplish with an internet connection and a computer or your trusty iPhone.

This week, we encountered a number of issues, triumphs and informative articles. One post and we are communicating with 50 plus different perspectives, ideas and sources of encouragement. Here are some examples:

First, Wyatt fell down the stairs this week. I mean hit nearly every single step on a whole flight. I was totally panicked. I decided to post something in the group Facebook page. In a matter of an hour, I had about 15 responses from other Mom's who had their child experience a fall down the stairs, nurses who provided me with crucial medical information and a bevy of supporters, ensuring me I was not the horrible mother I felt like I was. Thankfully, he is fine!

We had another Mom ask about her child's obsession with a certain movie. Again, there were Mom's providing input and support, offering ideas about how to incorporate movie character stuffed animals for therapy play or learning body parts, or social stories, how to manage behaviors or just tell that Mom that she is doing great and she is not alone.

Then we had another Mom experience a really tough sleep study. And again, Mom's chimed in to offer support, encouragement and ideas about how to improve next time or how they survived the sleep study.

Over and over again I experience a multitude of blessings for being a part of this group. I encourage other Mom's to plug into a Mom's group. Whether you have a "typical" child or a child with special needs, I believe we can all benefit from this environment.It's a global community. Where you're not just getting the ideas or support from your inner circle, but rather from a community of individuals with different backgrounds, expertise and general knowledge. It's fabulous!

Last weekend, we had an ice cream social for the DSAGC. We had a great time talking, watching the kids play and just generally being around a bunch of great people who undoubtedly accept every child for the [EXTRA]ordinary person they are.  And it didn't hurt that Eden got to play and be tortured by her brother and Wyatt got to flirt with his fiancé...

Hi, we are CUTE!

Excuse, me...may I have this dance?

I will hold your dress for you, like a gentleman. See, I'm not looking!

.

I get TWO firsts

I loved when I first became a Mom to my beautiful Eden. She impatiently joined us 3.5 weeks ahead of schedule, but came out pink and healthy and perfect. She was tiny (I mean TINY...4.14 the day we brought her home). That weekend was the when the "hurricane" came through Cincinnati in the Fall of 2008. Without electricity, we furiously lit candles and tried to keep up with her demands. We really didn't know what to expect but ended up just sitting around with the screen door open, staring at each other, thinking: "what do we do now...?"

The unknown was both exiliarating and fearful all at the same time. We didn't know what twas coming next. We didn't know when she would start crawling or how we would feed her or how she would grow. We had never done this before, so we really didn't know what to do and we had to learn "on the job." When those "firsts" started coming, wow were they exciting! We celebrated everything: saying "dada," sitting up, playing with a toy, turning a certain way, hi-five-ing. Even the mundane was celebrated - Eden's in a new size diaper...YAY! (LOL).

It was pure joy.

I was told that once you have a first child, those subsequent "firsts" of other children never quite live up to the excitement of the original (although still celebrated in their own way). You kind of know what to expect and how things will go. The security of that makes you feel rather, well...seasoned. When I found out I was pregnant the second time, this is how I expected life would go on with baby #2.

Boy, was I wrong.

After Wyatt's diagnosis, I was wrapped in the fear part of the unknown. Who, what, wehn, where, how, and even that why all circled in my head. It was an uneasy feeling at first. But as things have progressed, I now feel like the luckiest person in the world!

I get to have TWO firsts.

Because having Wyatt is kind of like having that first child again. We didn't know when things would happen for him and we were not sure what to expect (and still don't!). We surely are learning about Down syndrome "on the job."

That uncertainty and fear has now turned into alot of excitement (well, mixed with some cautiousness, just like with Eden). We celebrate EVERYTHING!  For example, this week Wyatt sat himself up for the first time from laying on his belly. We were sitting there playing and he did it, right in front of my eyes. Eden was sitting next to me. When I realized what had happened, a turned to Eden and squeeled with such excitement, it scared her! I exclaimed, "Eden, he sat up! Wyatt good job buddy!" I clapped and called out, "Yay! Wyatt!!!"

What a wonderful joy this adds to life. I realized, as I was filled with immense pride and joy for my son's seemingly small accomplishment, that I felt that way with all of Eden's firsts.

And now I get to feel that pure "first" exillaration, all over again! : )

Mother's Day Amnesia

What beautiful weather for Mother's Day we had!

Insert sarcasm.

Yuck! It was pouring down rain. Josh worked al day as a result of having to be off last weekend for a wedding we attended. But overall , it actually a really nice Mother's Day. I got to go see Les Miserables with my Mom and my sister. It was the first time just the three of us had seen a show together, without my Dad.

This spring seems like there's a lot of firsts. Mostly because I really don't remember much between February and about June of last year. I was still in a fog over having a newborn, wrapping my head around Wyatt's diagnosis and feverishly moving forward with my education. So much so that I feel like I was an amnesiac for that time! Yesterday, I woke up and thought: Wow, my first Mother's Day with two kids!

Um, yeah, not so much. It's my second.

It's kind of fun, in a way. I'm getting to feel the excitement about things that I "missed" during my fog. I honestly, have zero recollection of what we did for Mother's Day last year. So, to have a very nice one (minus a fever for Wyatt and a melt-down with Eden) with my kids this year is just peachy. I love that I was able to be a Mom - of both a boy and a girl - something I wasn't ever sure I'd ever fulfill at one point. And I loved snuggling on the couch with them on a rainy afternoon, even if it was just for a moment. Overall, I felt blessed this weekend, for the big things and the little things.

And for things I don't remember.

Happy belated Mother's Day all!

Thank you for being [EXTRA]ordinary

The culmination of the last 16 weeks was anti-climactic, almost. At 2:32, I hurriedly hit the "send" button as I submitted my last assignment for my Student Teaching. Although the previous 24-hours were spent scrambling, sleep-deprived and panic-stricken, that last moment was no big deal. As I closed out of Blackboard, the bell signifying the end of my planning period rang and students shuffled through the hallways. One popped into my room, oblivious to the momentous feat that had just occurred.

"Mrs. Scheerer, can I come into your room for Advisory?" he said.

"No, sorry. Not today, I already have an extra student. Maybe Friday," I replied.

He grumbled and moved on while my other students excitedly came in, asking, "What are we doing today? Can we go play basketball?"

Life had already moved on, only giving me a moment to revel in my accomplishment.

But as I think about all that has occurred over the last three years, I cannot believe that I made it here. When I started in August 2009 I could not see my path and I did not have a clue how I was going to make it through. Thankfully, God knew exactly what I needed to make it through. And it came in the form of friends and family.

I have met the most [EXTRA]ordinary friends and teachers, many of whom I will proudly call my friends for the rest of my life. And the support from all of my "old" ; )  friends has been invaluable. Many of you have sent me messages, made me laugh, helped me with homework, allowed me into your classrooms and just gave me that boost of confidence I needed when I was frustrated and feeling overwhelmed (which was like every day!). THANK YOU. It has made a huge difference!

Specifically, I'd like to thank Gina, Heather and Sarah for just being amazingly great people, watching my kids and helping me through classes, etc. Emily, you are the best, girl and there for me til, literally, the very end. To Minda, for being my great, great friend. We don't see each other as often as we should but just knowing you'd be there at the drop of a hat brings great comfort. And Dee, oh Dee, there are just not any words to express the gratitude I have for your friendship. If nothing else had come out of this experience, your friendship would have made it all worth it. To my DSAGC friends for making this journey with Wyatt not so uncertain, you are all amazing. You've helped me keep things in perspective so that I can move forward with my education. To my running friends for keeping me motivated to take care of myself (either in person or just on Facebook), thank you...the Bad Angels rock! To my sister and Reese, I love you and I will pay for your phone bills one day. For a year. I have the best Mom EVER. PERIOD. Mom, there's nothing I can do or say to ever repay you, but I'll try. And for my Grandpa, thank you for the love you've given and the financial support. They broke the mold with you, sir. I love you dearly. And to Josh, for holding down the proverbial fort while I was off chasing my Purpose; I am forever grateful. [UPDATE: And, of course (apologies for my serious forgetfulness in full effect) thank you to my husband's family as well! They have provided lots of encouragement and supprot along the way! Couldn't ask for better in-laws.]

Now, as the school day has quieted to a dull hum, I am able to relish in the quiet success of the last three years of my life. Although, there's a few things still to do...I'm almost completely done! The end is now beginning and I see the light at the end of the tunnel. I have 5 weeks of my last Masters class and my Masters thesis to finish by July 13th, but the heavy lifting is done. The most important part of my education is now complete: I can submit my paperwork to the state for my residential teaching license!

As I have said, many, many times: I cannot do it all by myself, so I am thankful for each of the gifts you all bring to my life. Thank you for being you. Thank you for being [EXTRA]ordinary.

With love and sincerity,
Becca

The Return of Normalcy...?

Around the time that Eden turned one, I found that our lives started to feel more normal again. When you have infants, things change so rapidly, so often that you feel like you're stuck on a baby revolving door! You are constantly reworking things you are doing. When you get a schedule to work, suddenly it changes, then you find that you've gotten the baby food thing down, you move to table food, you get one thing baby-proofed, then you realize your kid can swing the fireplace curtains open and you find a soot-covered hand reaching for the white carpet...or is that last one just me...?

Regardless, the first year of life after a new baby is a whirlwind. But then, all of a sudden, you turn around a think, wait...change isn't smacking you in the face every other day!

And you start to feel the Return of Normalcy.

It may not be exactly like it was before, but at least you feel like you are starting to crusie at your new altitude of normal. So, I was asked the question this week of "when does it slow down?" by a friend. I thought: Never! But when I really looked at how life was going, I started to realize: I'm starting to cruise!

We were told when Wyatt was born that the first year is the hardest. Well, I think that's true with any infant. But for kids with special needs, the first year can be a little [EXTRA] challenging. There can be lots of doctors appointments. I mean, "let's-rent-an-apartment-next-to-Children's" lots and "I'm-on-a-first-name-basis-with-the-parking-staff" lots. And we don't even have as many as some other friends, with whom I totally empathize.

In Wyatt's first year, we had the following: 13 days in the NICU; countless additional appointments with his pediatrician plus all regular check-ups, multiple developmental health check-ups with the Tomas Center for Down Syndrome at Children's Hospital; three cardiology appointments; three appointment with the ENT, one out-patient procedure to put in ear tubes; two appointments with the othomologist; one trip to the ER, one admittance to Children's for overnight observation; and non-medically related appointments in the form of bi-weekly visits from the developmental specialists for Help Me Grow.

Being checked in at Children's Hospital after an ER visit (it's like 3 am here and I look awful)

Daddy holds a sleepy Wyatt pre-op for his ear tubes

But now, it's starting to feel like it is slowing down. We do have bi-weekly Physical Therapy (which is turning into weekly PT while I'm off for summer break) and regular check-ups, but the big stuff is subsiding. And that feels good. We have a few follow-up from the Ear Tubes and Audiology, and then a follow up for Cardiology in two years. Wyatt is on table food and I can typically modify whatever we eat to fit him, even if it does mean sticking it in the blender for a moment if he's struggling to finish the last bit. And Eden and Wyatt are starting to actually kinda play together (or at least Eden palys with Wyatt.)

I'm ready to checkout Mommy! Didn't I make a good purchase?!?

 And additionally, my own school work is slowing down. My student teaching is near complete, which I'm sure has a big hand in feeling like I'm not insane! (I'll post specifically on my school stuff later this week).

But overall, it's feeling, well, manageable now.

I feel like I can start to breathe a little. I'm trying to let that feeling stay with me, rather than worry and wait for the other shoe to drop, because I like cruising sometimes. I can sit back, and even if it's for a moment, close my eyes and feel the wind in my hair. I looked at Wyatt sleeping the other night, before I went to bed...

What a precious little guy

...and I felt very "normal" ; )

That is, until Eden starts Pre-School in the Fall. Oh well, the cruise will be nice while it lasts!