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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, December 13, 2012

Christmas Hope

As Christmas draws nearer, I can't help but be overwhelmed with many emotions and thoughts. The journey we have been on the last year has been a whirlwind. To think that this time last year I had just buried my father, was going to start a new job on the tail end of finishing graduate school, and Wyatt wasn't even sitting up yet on his own.

Now, a year later, so much has changed. Wyatt is near walking, I'm working in a district that I will, hopefully be in for the long run and I've come to feel peaceful regarding my father's passing. And as I want to write all these happy, encouraging things today, I want to really be honest. I have been back and forth feeling hopeful about things lately. I have always been hopeful overall, but sometimes life is just overwhelming. I'm overwhelmed. I need some Christmas hope.

I know we are relatively stable now in our jobs and finances - things are tight, but not unmanageable - so what could I possibly need to feel hopeful about? I think we all have those moments of maybe not feeling hopeless, but hope lacking. It's that feeling at the end of a hard day where you sit down, sigh and feel a little defeated. Eventhough we've come a long way, I still sometimes see that mountain in front of me. I really hope Wyatt walks soon. I really hope I get better at my job. I really hope my husband succeeds at his new job. I really hope we can get out of this house sooner than later and I really, really hope I get the honor of having another baby someday. And with all that said, I really, really, really hope I can also learn to be present more in each and every day!

I'm not looking for a pitty party here, just a little sprinkle of Christmas hope.

The magic of Christmas and the joy that the birth of Jesus brings every year seems to come at just the right time. We all get so busy, so stressed, so over run with responsibilities and the rush of the end of the year. I think that the end of the year makes us think about all that we have not done yet and what we hope to do next year. Every Christmas, for me is almost a reset button. I get all worried, all distressed, then the celebration of the birth of the Christ child just seems to wash it all away. I'm ready for that moment now. I'm ready for rejuvenation. I'm ready for that peace, that joy and that hope the Christmas celebration brings!

Monday, November 19, 2012

Home

We go to Crossroads Community Church. It's considered a "mega" church, but it feels much smaller to me. I really love  it there and so does Josh and the kids. Recently, they started a church-wide series and study about Home. It has really got me thinking.

Our study book starts with this quote:

"What if it were possible to feel completely at Home, no matter where you were? What if you could always feel understood, valuable, protected and loved - like a child who is treasured? What if you could let down your guard, get recharged, find rest and be filled with bravery and hope? And what if you could experience that place right now, right here - and every single day from now on? No matter where you are right now, you can.

Wow. What a thought. Each time I read it, I get a little choked up.

When I think about what it feels like to be home, I'm transported back to my childhood, to my family home. I have to be honest: it was ideallyic. Partly because I was a little shielded by the "real world" becuase of not being so "connected" as kids are today, but mostly because I had a fantastic family who always made me feel safe, taken care of, loved and secure. We had woods in which to play, a pony in our back yard, my grandparents living behind us and a dinner bell to call us home when it was time to call it a day. My parents were married for 40 years (and lived on the same property since they got married) before my Dad died; my grandparents married a whoipping 67 years before Grandma passed away.

Norman, where were you when we needed a family portrait?!

I call it my abnormally normal childhood. I reconize that I am in the minority. I don't tell you this to boast or brag (although I'm admittedly immeasureably proud to have come from this family). But I say it because I have great feelings of inadequacy sometimes.

How can I ever live up to this for my own kids?!!?

I live in a smaller townhome, that needs more cleaning and fixing than I have time or resources. I have a 10 x 10 back yard for my kids...and there in no pony in sight. My mother, the only grandparent, lives 30 minutes on the other side of the city. I do not have a dinner bell, and it would likely freak the neighbors out if I did. We will probably move a number of times before we are ever able to settle into a more long-term house.

So with all this, how do I create Home for my family? When I really started to think about it. I noticed that, not only was I focusing on all the things I didn't have or didn't have control over, I was also focusing on all the actual THINGS. I pondered: did the security I felt as a child come from the Pony, or the woods or even the dinner bell? NO! Those are all things that were just plesant tangible reminders of the joy and happiness I felt as a kid.

I reread the quote from our book and realized: I WAS TREASURED! Not only by my parents and family, but on a level I also knew I was treasured by GOD as a child!

I want to be sure that my kids feel the same level of saftey, care, love and security that I did. I want them to feel equally (or even more) TREASURED! That doesn't mean that I have to live on a farm and have all the things I did as a kid. I can provide my children the gift of feeling treasured through my actions, love and examples; not just through physical things. I always have known that things don't buy happiness, but for some reason, this was na Oprah "ah-ha" moment for me. Those more tangible things may come for our kids, as we regain control of our finances after Grad school and a 100K medical bill (the latter of which is thankfully nearly gone thanks to insurance and the Bureau for Children with Medical Handicaps). Because I do want them to benefit from enjoying some things in life. But even if the things don't come, I can still show them how treasured they are!

Eventhough I will (hopefully) not be living in my current home in 20 or 40 years, I can still make a beautiful Home for my children.

I visited my Mom this past weekend. Mom and I were talking about how surreal it is sometimes for me to see my own children at her house. I get emotional about it sometimes because it makes me feel so happy. I'm thrilled that my kids get to experience that home like I did. They will have some of the same memories of playing there that I do. However, in thinking about all these things, I realized that the home is not the same: Dad is gone, the neighbors have changed, the property is smaller and the pony has long been put out to pasture. But it still feels like home because I am surrounded by the peace of God and the treasure of what is my family. And I think that is the most important part.

I am Home there, not because of what things were there, but because we were a family.

So, all things considered, now I'll try and relax and work on building my family Home, no matter where I am or what I have. We can do lots of things in our house to support our kids in feeling treasured, like reading stories, playing under tents made from bedsheets, going to a Reds game together in the cheap seats, playing in the snow, baking cookies, playing at the park or just simply eating dinner together. Above all, my parets gave me time and experiences, not that cost a forturne financially, but that were ultimately priceless in meaning.

This, I feel like I can certainly live up to. And no matter what your family looks like, what you have or where you are, you can do this, too. Teach your children what it's like to be treasured so that they can treasure others as well. If we all made each other feel treasured - no matter our gifts and abilities are - what a beautiful world that would be!

Ahhhhh.....HOME.



Friday, November 2, 2012

Meet Tika

I have met so many [EXTRA]ordinary Friends over the past 20 moths! (Hard to believe Wyatt is that old now!) I want you all to meet them, too! So I'm going to feature an [EXTRA]ordinary Mom each month (or at least try!

First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:


First Name: Tika
Children: Leightyn (3) (Ds) and Bayli (9 months)
Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)? 
I work from home (or the pool, zoo, aquarium, or wherever else me and the kids might be) doing the filing, paperwork, and answering the phones for our online business. I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.
How many years have you been involved with the Eastside or Extrordinary Friends Mom’s group
I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus in 2009. We had a Mom’s dinner group there and a small group that met once a month with speakers and socials for the families. We did not have any other family or friends here locally so this is something I really wanted for us. Melissa Skavlem and I started the group in 2010 and our first meeting was in Feb. of that year! Over two years later and we are still going strong. This group is my baby and I could not be prouder of what it has grown to be.
Why you like being a part of this group
All of the best information I have ever been given about Down syndrome has come from other families! Now that we are almost 4 years (hard to believe my baby will be 4!!) into this journey I love being able to share what I have learned with the families who have just started their journey. Like I mentioned we do not have family in town and this group has become my family. We have made many life long friends by being a part of this group.
Best advice for new parents of a child with T21
BREATHE!!!! The most important thing you can do for your new baby is love them, everything else will come in time. The future can be scary even in the best of circumstances but especially when you have a baby with special needs. Just focus on today and live in this moment! You will soon see that you are stronger than you ever knew you could be. Your child will teach you so much more than you can ever teach them so just hang on and enjoy the ride; the ups, the downs, and all the in betweens!
Greatest joy in having a child with T21
The amazing connection that you have with other families who have a child with Ds. There is something about that extra chromosome that allows us to make an instant connection and fosters the beginning of lifelong friendships. Leightyn is the light of my life and has taught me to celebrate every accomplishment and to live in the moment! If the world could only see things through Leightyn’s eyes it would be a much better place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs are the best thing in this entire world!!!
What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?
It is easy to feel like you are not doing enough for your child. With all of the doctors, appointments, therapy, etc. we can all get overwhelmed at times. What your child needs most is your love and if you are giving them that then they will be just fine. Your child will reach their milestones when they are good and ready and not a second sooner so try not to put pressure on them or yourselves. That sweet moment will come in time so sit back and wait (I know easier said then done) and be ready to clap, scream, hug, kiss, and even cry when the moment comes!
Favorite Therapy Trick/Tool: 
The best tip I have when it comes the therapy is to make it fun and try to incorporate it into your everyday routine. I am NOT saying make a point to have therapy every day, that would get exhausting, but remember that things you already do can be therapy too J For example we had a picnic lunch it the fort yesterday. Climbing the stairs to get in was physical therapy. Signing and saying the colors of the different items we were eating was speech therapy. Using her utensils to cut things up and eat, drinking from a straw, and then cleaning up and putting things back into our bag was occupational therapy. All three therapies in one thirty minute lunch! Use your child’s interests to make therapy personalized and more fun for them. If they like Mickey Mouse use that as a tool. It can be a reward or a motivator.
Random question
If you could see 24 hours into the future what would you do with this ability? I would make sure that I actually shower, wear something other than sweats, and put on a little makeup when I knew I would be seeing someone I know while out running errands LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy happiness but it can buy clothes, shoes, and hair bows which can get expensive when you have two little girls J

Tell Me About Your Diagnosis:
We chose not to do any prenatal testing. All of my ultrasounds and routine screenings never indicated that anything was a concern with our baby. I had an easy pregnancy and labor. When Leightyn was born she was not breathing and the room quickly filled up with hospital staff as they began to work on her. I heard one of the nurses ask another doctor, “Are you thinking what I am thinking?” to which they replied “Yes.” All I could think was that they thought my baby was going to die or that she was already dead. Down syndrome was not even a thought. After what seemed like eternity, although really only minutes, she was crying and breathing on her own. The nurse came over to me and told me that they thought our baby might have Down syndrome based on some of the physical characteristics they were seeing. When they handed her to me, I knew she did, although that would not be confirmed for several days. I fell in love with her and instantly felt the need to protect her. This momma bear was born that day as well. She spent her first few hours in the room with me but it soon became apparent that her heart might be a concern and she was taken to the NICU. An echo two days later confirmed their suspicions and made a Down syndrome diagnosis more likely. She had a complete unbalanced AVSD. At five days old she went into heart failure and was transferred from her birth hospital to Nationwide Childrens Hospital where she spent another week. Sometime during that stay her diagnosis was confirmed but we already “knew” although up to that time there was still a small sliver of hope that we were all wrong.
The Down syndrome diagnosis came as a shock but it was not nearly as scary as the heart defect was for me. I always say that her AVSD was a blessing in disguise when it came to the acceptance of having a child with Down syndrome. Suddenly Ds was not that scary at all and instead something we could manage. The heart defect could actually kill my baby and it almost did Down syndrome could not. It really helped me put things into perspective. Down syndrome was a part of Leightyn but it was not all of her, she was my beautiful new baby girl, and I loved her to pieces!
When I was 13 my youngest sister was born at 26 weeks but measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at birth and spent several months in the NICU. I think this was also key in me adjusting so quickly to Down syndrome. I had been in the NICU before and had seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow and therapy. I had seen my little sister have many ups and downs in her first year health wise and yet she had grown into a mostly healthy and happy child. Another reason I was able to adjust to our new normal quickly.
It also helped that Leightyn was my first born so I did not have another child to compare her to. She met her milestones on her timeline and it really wasn’t too obvious to me when she was behind as a baby. She did things when she was ready and in her own way and I didn’t know any different! The extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.
This is not to say that it wasn’t hard at times, it was. I cried, I worried, and I was afraid of the future.  I certainly never thought I would have a child with Down syndrome at 24, but I also never expected to have two beautiful redheaded baby girls with light colored eyes either but I did! There are still times when I cry, worry, and fear for the future, but that is what I have all of my amazing friends and family for, to support me on those days. Down syndrome is a part of our lives and we have chosen to embrace it. Today there is so much more joy and love than there is pain and fear. Everyone has a different journey and that is okay. This is a glimpse into mine! 

From me:
Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!
 Here is Tika with her beautiful girls!

Thursday, October 4, 2012

The [EXTRA]ordinary Face of Disability

I'm just going to put it out there:

Is it just me or does it seem like individuals with Down syndrome are the face of disibility?

Everywhere I turn, I notice that when disibility is portrayed in the media, they often use an individual with Down syndrome. I open up my mailbox, and bam! There is a boy in the Target ad with Down syndrome.

There have been a number of stories in the news regarding this topic and people are paying attention. Is this an [EXTRA]ordinary phenomenon or just good marketing? Should the use of photos of children with a disability in marketing be a big deal? Well I guess it was a big enough deal for me to write a post about!

I do see lots of individuals with Down syndrome in the media. But sometimes I question my obviously skewed perspective. Yes, I admit, I have a skewed perspective. Let me explain...

You know when you buy a new car, and all of a sudden you see that car everywhere? Or if you put your house up for sale, suddenly it seemes like every house on the block has a sign in front of it? Its because suddenly, these things become personally related to you and you notice them more. This is how I think my perspective is skewed.

Hence, I revert back to my first question: Is it just me?

I'll answer my own question: I think it is and it isn't. I think I'm noticing it more because of Wyatt, but I also think the frequency of media using individuals with a disability in the media is rising.

Look at the following examples of recent advertisements or news article samples featuring individuals with Down syndrome.



This little cutie is "the face" of DC Kids Swimwear for the 2012-2013 season campaign


This princess was in the news for her modeling prowess

Everyone knows the handsome boy from the Target ads

Toys-R-Us has featured a kid with an extra chromosome more than once

And don't forget The Pampers Commercial!

The use of kids with Ds in the media is out there, so maybe it's not just me. I think I notice it more, but I also think that Down syndrome, in a way is often used as the face of disability. The first reason for this I can think of is that the facial characteristics of an individual with Down syndrome is nearly universally recognized. Yes, our children look like us (anybody who knows Wyatt can attest to the fact that he looks more like me and Josh than he looks like any random kid with Ds). But there is also the fact that they do have some overwhelmingly common and identifiable facial features. So, because of this, it may be poingant for an advertiser to use a person with Ds because it is a more commonly physically identifiable disability.

The other reason I think advertisers use our kiddos is to represent happiness. This is a good and bad thing, I think. We parents of children with an extra 21st already struggle fighting the generalization that all our kids are happy all the time. This fact is simply not true. I'm not saying that they are not happy, I'm just saying they may not be all the time happy. I mean, you might be happy with you're life, but are you happy all the time? I think not. It is (and let me reiterate thie ) THE SAME with kids with Ds.

Don't believe me? Come to my house. I'll show you Wyatt's alternative superhero personality: captain fussypants face.

Finally, I think that our kiddos are used in media because we advocates are doing our job, and the people who came before us really have done their job. We try to advocate so much for our kids. We want to have them live as 'typical' of a life that they can. People before me have paved the way so that we can see a kiddo in a Target ad who has a disability and it be cool. The disabled population has a place in our society and countless advocates have created that spot. And the overall population is seeing the beauty of our kiddos through the [EXTRA]ordinary faces of those with Down syndrome. Just as people of different races should have been and still be represented in the media, so should individuals with disability. Afterall, they are an amazing part of our community.

Did you know that the Census 2010 reported approximately 56.7 million people (or 18.7 percent) of the civilian noninstitutionalized Population in the United States (about 304 million), had a disability? (according to www.census.gov)

To put that statistic in perspective, let's look at the percentage of people who are Black/African American either alone or in combination with another race, in the US: 

The 2010 Census showed that out of the total population, 38.9 million people (or 13 percent), identified as Black alone. In addition, 3.1 million people, or 1 percent, reported Black in combination with one or more other races. Together, these two groups totaled 42.0 million people. Thus, approximately 14 percent of all people in the United States identified as Black, either alone, or in combination with one or more other races. (Also from www.census.gov).

That means that there are 4% more people reported with a disability than there are people who are black/multi-racial in the US.

I'll be honest, that one kinda blew me away.

So why shouldn't we see people with disability in the media? And I'm not talking about just seeing our kids, brothers, sons or cousins in a pamphlet for toys for "specially abled kids" or in a medical equipment ad in their wheelchair. We should see them in more frequently because they are as much a part of our rich culture and history as anyone else. Personally, I'm glad I'm feeling like we are seeing our kids and adults with Ds more and more! Because I think it is a beautiful honor to be such an [EXTRA]ordinary face for persons with a disability.

So Macy's or Target, McDonald's or Subway, if you call to book Wyatt for your next major ad campiagn, I'll pick up the phone. Because who wouldn't want to see this kid when they open up the mail?







And just to add, you can use Eden, too cause she is equally gorgeous : )

Just sayin'




HAPPY ADVERTISING!


Friday, September 21, 2012

Baby Foodie

Many people ask me about food. No, not big people food. Baby food.

And, as it was never my intent to become an amateur Baby Foodie, it just kind of happened.

See, my kids are great eaters for the most part. We are able to give them a great variety and they don't really complain. They have preferences and things they definitely don't like, but overall the only struggle we have at mealtimes right now is getting Eden to eat her dinner in under an hour (holy slow poke!) and getting Wyatt to stop smirking at me while he chucks food over the edge of his high chair onto the floor. Sneaky little stinker.

So, after many requests and my own failed attenpts to put together a Baby Food seminar for our East Side and Extraordinary Friends Mom's group (one of these days, I'm telling you, it'll happen). I thought at the least I'd jot down some good points here on the topic.

So, how do you create good eaters? I say 'create' because I do think parents have great influence on children's eating habits.

First, I think it starts with educating yourself. My sister made alot of her own baby food for my niece and so it all started when I got some basic tips and information from her. One of the best resources she offered me was the Super Baby Food Book by Ruth Yaron (the website is nice, but you can find it used on Amazon for cheap HERE). This is a great resource for me because Ruth really details when to introduce certian foods. And her list goes WAY beyond introducing peas and carotts. And once I started really reading about feeding my baby and how a heathy diet early on can support brain development, self feeding and create life-long heathy eating habits, I was sold on making this a priority in my kids lives. So talk with other [EXTRA]ordinary Mom's and read whatever you can get your hands on. I highly suggest you get Ruth's book.

The second important part of creating a good eater is VARIETY. That means making your own baby food. Today's baby food market has really taken off compared to four years ago wehn I was starting to feed Eden. Now, you can get those Organic baby food pouches that have a built-in straw-type thingy (yes, I'm sure that's the technical term) and baby food comes in lots more variety than ever before. I admit that I do buy those pouches, mostly for convenience, but the majority of my kids' food came right from my little food processor. So, even with those pouches on the market, you still want to make your own, because those things are expensive! Whew! Usually over $1 an ouch. I mean pouch... I average a 50% savings per serving when I make my own food. Sometimes more, sometimes less depending on produce costs and what I buy. And as saving money is awesome, I revert back to my initial point of variety. Variety is super important. If you feed your child the same things over and over again, they will never get used to trying new things and experiencing new tastes. So you have to offer variety. My kids ate beans, kale, spinach, brussel sprouts, winter veggies, summer veggies, every kind of vegetable and fruit I could get my hands on! And that's easy sometimes when they are a baby, but the secret to variety is DO NOT STOP! Once you get past the baby phase and you're moving into toddler phase, don't stop the variety. You will undo all the hard work you just put in over the last 6-12 months. You must be purposeful about presenting variety in your children's diet. That means ythey have to try new things. And on that note, please don't let one bad experience keep you from serving a food again! It takes anywhere from 10-20 times for a taste to be developed! Keep trying it again and again. Eventually, they might like it!

Now that you're planning on making oyur own food and keeping your kids' diets full of variety, you have to make sure you have the right tools. Please, don't spend a ton of money on those commercial baby food making sets you see on TV. It's a waste, IMHO and I have a much easier and cheaper solution. This idea is in Ruth's book, but I used the Freezer cube method for storing baby food. Here's how it works: I use a small mini food processor to puree food. I can make food super smooth with this or I can pulse it to make food chunkier as time goes on. With Wyatt, this was very important. Kids with Ds can have low tone, which makes eating a challenge sometimes. Since I was making my own food, I could control the consistency of foods for him so that I could find the best blend for his ability, so he wouldn't choke and so that food wasn't just falling down his throat. I could add water or other foods to the baby purees to help thicken or thin a food so he could be successful in his eating. So many baby foods are just one consistency. This is not helpful when trying developing those all-important mouth muscles for clarity of speech later down the road.
HERE is something like the style mini-processor that I used, but they don't sell my version anymore.



Once you start blending, you need somewhere to put all that food. So go get yourself some basic but sturdy ice cube trays. One serving of baby food = one cube. Easy peasy. So you put your food in the trays and freeze. Then you store the cubes either in a zip lock type freezer bag, or if you are environmentally minded, you can put them in reusable containers that are meant for the freezer. When you are ready to feed your baby, just grab a cube and defrost. They are great on the go. Frozen in the morning, thawed by lunch! It's a great method, too because you can make large batches and not make food so often yet keep a large supply of variety. I used to make food on Sunday nights. It would take me about an hour every Sunday to keep my supply up with good variety.

Here's a few pictures of the process and my foods:


Cooking Kale with onions and garlic (yes, my kids eat this)
 
Freezer Cube method with fresh veggies - just LOOK at that COLOR! This was orginic zuchini and yellow squash grown out of a friends garden!

Watermelon puree - have you EVER seen watermelon baby food sold in stores? I haven't.

Next stage asperagus slices. Soft, gumable peices that are easy to chew. And I can even just throw in a few cubes to the adults dinner as an added bonus!

Here is a picture of my freezer, with all the zip-lock bags of baby food. Each bag is a different food!
 
Now my kids eat amazing this, like this homemade organic bean soup with shredded cheese and guacamole on top.     SO GOOD!
 OK, so please don't think I am this picture of pure health. Yes, my kids eat chicken nuggets (although mostly Morning Star Farms, so they are not really chicken, but we do visit Wendy's on occasion). And Eden loves Frency Fries and Wyat could eat a whole pint of ice cream (right along with me). But for the most part, they do eat great.

I think the final pieces in getting your kids to eat great is modeling and setting standard. If you eat crap, so will they. I was shocked when I was eating a salad and Eden asked for some one day. I laughed and gave it to her, thinking, yeah right, she's going to spit it out! Much to my surprise, she loved it and said something to the effect of "see Mommy, I eat like you!" Awwww. So model healthy eating for your kids, then set what I call the "I'm not a short order cook" standard. This is the final piece of the good eaters puzzle. I don't make seperate meals for the kids. Sometimes for lunch, sure, OK, they get peanut butter and jelly and I get a turkey sandwich or something. But overall they get what we eat. And if they refuse, well...tough luck, you're gonna be a hungry kid. Now we've been a little more leanient with Wyatt here and there because of his issues with weight gain. I will make a more hearty, calorie-heavy version of what we are eating for him sometimes. Thankfully, over the last month or so, he's really gained, so we are reverting back to 'all-in' meals. But don't make it harder on yourself. If you set the standard early and model good eating yourself, then you will have less trouble later!

I also want to take a moment here to discuss how Wyatt came to start feeding himself early. Self-feeding and eating solids can be challenging for kids with Ds, thus people also ask me about how Wyatt came to be such a good eater. For Wyatt, I find that his learning needs to be much more purposeful compared to Eden's ability to self-discover. Let me explain: Eden naturally began feeding herself and need little, what we call in the ed world, direct instruction. Wyatt needs direct, purposeful instruction. At 9-10 months, I would put him in the high chair and sit directly in front of him, with Puffs or Cheerios spread out on the high chair tray. Then I would slowly and very over-dramatically put a puff in my mouth and chew. Then say "yummy! eat!" and sign eat. Then I would put my hand on top of his, pick up a puff and put it to his mouth and simutaneously make chewing motions myself and say "Wyatt eat!" I followed this routine for at least one meal a day utnil at about 12 months, he just started doing it himself. And I felt really silly doing it so dramatically, but now, he's a great eater, so it obviously worked! We started working on the spoon recently, but I'm not overly concerned about pushing that right now. I just can't deal with the mess some days, haha!



He's interested, but even Eden didn't master the spoon until well after the age of two, so it's not a priority for me.

OK, I know this is a lot of info so let's review:

- Give your kids Variety
- Get the right kitchen tools
- Make them LOTS of great food yourself
- Continue variety through the toddler years and beyond
- Set the standard for healthy eating through modeling and don't be a short order cook
- For kiddos who may need a little more support, offer direct, purposeful instruction with some great modeling (and if you don't feel silly and over the top doing it, you're probably not getting their attention)

It takes practice and time to get some of these things down. Over time you'll get it and figure out what works for you. I have found this Baby Foodie journey to be an enlightening and rewarding experience and I hope you do too!

Please SHARE tips of your own below in the comment section or ask me if you have any specific questions on how to make your own food!

HAPPY EATING!


Sunday, September 2, 2012

What It Is, Is...

My husbands family has this long-running inside joke about the phrase 'what it is, is..." It's a phrase commonly used when trying to explain something that is more complicated. Because sometimes we can't always put our finger on what, exactly it IS.

The phrase is often an used as an interlude into something that either the speaker isn't communicating very well, or a difficult topic. And ometimes, we just don't know what the heck we are talking about and break it down with a "you see, what it is, is..." The phrase is usually followed by a unanimous chuckle and then a regrouping to get to the point.

I've had a "what it is, is" week. And I'm not exactly sure what it IS. What ever the IS is, it's had me up and down all week.

First, my daughter is starting pre-school this week. I thought weeks ago that I would be completely fine with it. Little did I know that when I went to drop off her paper work and see her room, I walked in and nearly cried. I reached out to my friends looking for some comfort that it gets easier, this letting them go thing, and unfortunately, the overwhelming majority said 'no.'

You see, what it is, is, when I walked into the room, I just thought about how much she will absolutely love it; and then I thought, she's never going to need me again! I could just see her, wistfully waving goodbye like "see ya later, Mom!" and never looking back. I know (at least hope) that we still have a long time toghther, but it just felt so overwhelming to me. When I got to the car, I streamed tears the entire way home. And then we went to her open house, and I sat there thinking about how this is good and fine. We left, and again, I sat there in the car in tears. I'm sure getting used to idea of letting our kids grow up and become their own person gets easier, but it's all so complex. The idea of letting them go and giving them up but still protecting and nurturing them is like in and yang.

My IS is all outta whack. It's tough to explain, I feel.

The other thing that has thrown me for a loop this week is some things with Wyatt.With Eden starting school, I think about Wyatt starting school and how I'll handle that. But then I worried about the fact that he's not walking yet and how his gross motor skills will be and about his speech quality and his clarity of speech. Then I started thinking about him graduating and post-secondary plans...and all sorts of things! Holy snow ball from hell!

What it is, is...I think that I just need to calm down and take a step back.

I am anxious. I just started a new job and my daughter is going to pre-school and none of us are used to my new schedule yet and I want Wyatt to walk, like NOW. I know the walking will come, but this week I've seen a few kids Wyatt's age running and climbing and doing things he is not yet, and that sometimes makes me feel a little sad and anxious. When I get anxious or nervous, my head gets foggy and I feel out of control. Then I think about all the things I don't know and don't have control over and it all gets overwhelming.

I think sometimes I need to think about that phrase, which was born out of humor, but has much truth in it: What it is, is... Originally was intended for beginning an explanation.

But what if there's nothing more to that phrase? What if you just stop there and leave out the explanation?

What it is...IS.

I want to relinquish control and Lord (literally) knows that can be tough for me. But I just need to let my IS's be. Sometimes, it is what it is. I need not worry about tomorrow, because tomorrow will worry about itself. I don't need to always go into lengthy explanations about why I'm feeling sad or anxious, or even justification for feeling happy! Rather I should try more often to just let it be what it is and be in the moment.

I will cry when I drop Eden off at pre-school for her first day on Tuesday. And she will need me again, for a long time coming, just as I still need my Mom at age 36! Schedules will change and then fall into place again. Wyatt will walk and face more challenges and many successes. And I will try to not let that snowball take me to far away places that I can't control.

And that's just what it IS.

What is YOUR "IS" about this week?

And please...if you are reading from outside of the US, I would LOVE to hear from you!! Please leave a message and tell me about yourself!




Monday, August 20, 2012

People first, people

When I started my career change and graduate school (simultaneously, mind you), I encountered this strange and foreign concept to me called People-First Language. When I was taught the concept, I thought, well, this makes sense! I get that we should discuss individuals with disabilities focusing on the fact that their disability does not define them and they are people or children before they are the disability.

What I didn't know was how long it would take me to make this very conscious change in my own language. And to be honest, it didn't even take full hold until after Wyatt was born. Sometimes I forget that learning curve that I had. ME! The Special Ed teacher who has a child with a disability! So when I now encounter people who don't use People-First Language, I try to be understanding and I try to educate them on the most recent terminology preferences.

So, what exactly IS People-First Language, might you ask?

Like I said, it's identifying the person before you identify the disability.

Let me explain further...




You see, those of us who have kids with a disability want the world to see that our kids are kids FIRST, not the disability. Thus, you say the child WITH Down syndrome, not Down syndrome boy or Downs baby (that one specifically makes me cringe) or for example, say the child who has Autism, don't say Autistic child.

Think of it this way, if you will: this is a medical issue, thus discuss is as such. You don't hear people walking around talking about 'that Cancer kid' or the 'Leukemia Baby'. So why do it with disabilities, which are medically grounded conditions? I prefer that people don't identify our children as only having a disability. They are often bright in many ways, have strengths and weaknesses, just like any child. I prefer that people take the more respectful route of People-First Language. And, please, don't call my child retarded. That's like calling a person who is black a 'Negro' in the disability world, IMHO. See THIS SITE for a better explanation of the "R" word

I encourage all of you to make this slight, but important change in your syntax (order of language) from this point forward in your writing and verbal language. I know I would appreciate it, along with thousands of other parents of beautiful children...who just happen to have a disability.

Saturday, August 11, 2012

Wyatt's Birth

I promise you this story has a happy ending. This is not a sad story of tumultuous decisions and utter heartbreak. This is a story of triumph, growth and the ultimate realization that we can do all things through Christ. This is a story of how joy cracks through fear of the unknown and breaks it wide open.

This is the story of how my son came into the world and changed us for the better.

For a long time now, I've considered writing about Wyatt's birth. It's been looming over my head for about a year. After he was born, and returning from visiting him in the NICU one night, I sat down, finally opened my computer and typed in the three words: Down syndrome birth.  For days I had avoided the computer. Josh was far from being ready to read anything. I was fearful and anxious but  ready to see into the new world in which I was dumped a few days earlier.

My internet search lead me to Kelle Hampton and her blog. At midnight, I sat, reading - hanging rather - on every word from Kelle's birth story about her daughter, Nella who also had Down syndrome (to read it, click HERE). I cried for two hours after that. I still go back sometimes and look at that story, although through very different eyes now. But in that moment, through tears and all, I found relief in some way from the fears I had in my heart. SHE seemed to find healing in writing it, too. I thought, someday, I'll write about the day Wyatt was born...when I'm ready. Well, after reading lots of stories this week about births and pregnancy after having a child with Down syndrome...

I'm ready.

Josh and I were beyond thrilled the day we found out that we were having a boy. To be honset...we were trying for a boy. There had been NO boys (and barely even any KIDS) born in Josh's family that would bare the Scheerer sur name since Josh was born in 1974. That's 37 years for those of you counting. It's really up to him to carry on the Family name. That's an important part of our story, I think. And even though we were trying for a boy, we really just wanted another baby. We felt that Eden should have a sibling. I always wanted lots of kids. We would have been happy either way. Part of me equally wanted a girl so Eden could have a sister, because I really love having a sister. But all in all, we were having a boy and we were very excited.

Eden came at 36.5 weeks. She was tiny: a whopping 4 pounds, 14 ounces the day we brought her home after losing a few ounces from her slight 5 pounds 7 ounces at birth. But she was healthy and we were totally unprepared for her early arrival. Her birth was fast and crazy for a first child. From arrival at the hospital to delivery, we were only there 6 hours.  I HATED having the epidural (although I think it was the best choice at the time, since I couldn't stop throwing up long enough to manage my contractions). But I felt the effects of the epidural long after her birth. Although it wasn't what I had in my mind, I really was happy with her birth overall, but I wanted to make some changes this time. I returned to the set of mid-wives who delivered Eden and started talking about a birth plan. For one, I was not going to be caught off guard again this time. I was going to be prepared at 35 weeks to have a baby (my mid wife said it was unlikely to happen again and my doula said it was unlikely as well, although not unheard of). I found, met with and hired the doula. I did my research and wrote a birth plan that included asking the staff at the hospital to never ask me if I wanted drugs. I washed clothes, set up my maternity leave and finalized child care for Eden. I was ready...haha...or at least as ready as I could be.

I had a pretty great pregnancy. I was in good shape, running until about 27 weeks. I had lost a good chunk of weight between pregnancies - more than I had gained when pregnant the first time. I had some pretty ugly migraines and some bleeding scares, but I love being pregnant so I took those things in stride.

At 35 weeks, I started having deja vu. I was feeling EXACTLY how I felt right before I delivered Eden. I thought - lightening can't strike twice, I had Eden's conception date wrong which made it look like she was early... But when I went in for my 35 week appointment for baby #2, I was starting to doubt all that. I was already a centimeter dilated. It was felling all too familiar. JUST LIKE EDEN.

When I reached 36.5 weeks, it was a Monday. I went to work as normal. I came home and ate, put Eden to bed, did some homework and went to bed myself at 11:00 pm, thinking: I made it! I'm not going to deliver at 36.5 weeks...there were no cramps, no contractions to speak of. I settled in and went to sleep.

At about 2:15 am, I, in a sleepy dream state, remember thinking that I should wake up because I'm peeing my pants. Then I realized: my water was breaking! By the time I made it to the bathroom, I was soaked to my knees. I sat down to a large GUSH.

Crap. I sat there and began to shake. Not from contractions, but from nerves. It's go time!

I can do this.

I am strong enough. I sat there for a while. What now? I can't get off the potty - I keep leaking! I called for Josh. He sleepily came in...asking what's happening, are you sure your water broke, etc. I called my doula and mid-wife. The contractions started to set in.

We made our phone calls, got our bags and waited a few hours. My doula came to the house and Josh left to go take Eden to the sitters at 5:30 and get me some Starbucks before heading to the hospital. At this point, contractions weren't unbareable, but enough to be uncomfortable.

I can do this.

We arrived at the hospital at about 7 am. We went in and started to work. I received an IV block, instead of a connected line to allow me to be mobile. I was 3 centimeters and I managed my contractions and we were able to set up a pool in our room to help with my pain management ( you can't deliver in water in this hospital, though). It worked well and things were seeming to progress. At 2pm, there was still no baby but contractions were picking up. They checked me again finally and I was only at 4 centimeters. My doula suspected that the baby was facing my hip. My blood pressure was dropping and the baby wasn't doing as well as they wanted. They were concerned. They hooked up my IV for fluids and they decided to position me on my side in the bed to try and get him to turn.

I can do this.

An hour went by of very difficult labor. At 3:00 pm they checked me again. Only 5.5 centimeters. The mid-wife and doula suggested that our family go take a break, that it might be a few hours still.

But the contractions kept coming - hard. I looked at Josh and my medical staff. "I don't think I can do this much longer," I said. I could see in Josh's face that he was concerned for my well being. I knew it was tough for him to see me n this much pain. I saw him mouth to the nurse, "you DO have something standing by, right?" I saw her nod. My mid-wife said they just needed a little more time. She knew: I can do this. The positioning, they felt, was working.  We kept going.

I can do this.

I kept telling my self that, in between contractions.

Thus began the longest 45 minutes of my life. It was so tough to hang on, but I did. There was lots of vocalization. Finally, I felt massive pressure and burning (TMI? LOL). They checked me again. I had moved 4.5 centimeters in 45 minutes to full dilation and the baby was crowning. I stared to panic and my mid-wife said, "Rebecca, I need you to focus!" I did. I pushed about three times...and he was out!

I did it!

They placed him on my chest. He was quiet at first, but squirmy. His little eyes opened and looked at me. I asked if all his boy parts were there (they were) and I kissed him on his tiny forehead. They kept him attached to me for nearly 10 minutes. Finally we cut the cord and he had some great healthy cries! He looked so beautiful. But different from Eden, though. The nurse asked us what we were going to name him. I looked at Josh and said 'so, what do you think?" He said "I think Wyatt." I agreed, he was a Wyatt. Wyatt Daniel Scheerer. What a good name!

They checked him, gave him a strong apgar score of 8 or 9, weighed him in a a whopping 5 pounds, 10 ounces, and left us to be with our baby. Family and friends came to celebrate. We posted about his arrival on Facebook and I proudly announced my natural birth - no drugs, not even a Tylenol. It stands to be one of the proudest accomplishments of my life.

We had a lovely evening with family and friends. We ooohed and aaaahed over his cute tininess. We snapped pictures and cuddled. In the midst, I found out later that apparently I asked my friend, Emily, three or four times if she thought he looked OK. Maybe it was paranoia. Maybe it was instinct. I can't be entirely sure which to this day. The staff came to draw some blood, although they were having difficulty doing so because he was clotting so fast. But they eventually got what they needed. The room began to clear.

As family and friends left, I told Josh to go home and sleep. It was what we had done with Eden. One of us needed sleep. And besides, Josh had a mid-term in the morning that I thought he should go ahead and take.

About 11:00 pm, he left for home. Normally, this would be the end of my birth story, snuggling up to baby bliss for the night, but this night was different. This time, I had no idea what the rest of the night would bring.

Shortly after Josh left, a nurse came in. She asked me how I was doing and we chatted for a few moments. Then she asked me a question, "So, have you noticed there have been alot of people coming in to check on Wyatt?"

I froze. "Kind of...?" I replied, almost as a question. And what she said next is a bit of a blur.

"We see soft markers of Down syndrome...low tone...skin behind the neck...want you to be prepared for the pediatrician in the morning...if it were me, I would want to know now..." These were all phrases I remember. It came like a Metro bus hitting me.

"Huh? Hold on...WHAT?????!!!" Is what my head said.

I think I responded with a firm "OK." But I was confused. You think my son has what? How could...what do you mean...?

She looked at me, "you seem to be taking this well,"  she said.

How the heck was I supposed to be taking this?!

I muttered something back to her about being in graduate school for teaching special education. That I understood what she was saying.

She told me that if I needed to talk that I could call her. I'm thinking, "why in the world would I call you to talk? I don't even know you!"

Then she left. Left me alone. ALL ALONE, in my room with my beautiful, perfect, new baby boy. The room grew and grew. And it filled with loud silence. You know, that point where you can't hear anything, except you can hear the deafening silence screaming in your ears? Yeah, that's what it sounded like. My mind raced. My heart pounded. I hugged him, kissed him, nursed him, loved him and spent the entire sleepless night studying EVERY feature. I made a decision that night that I regret. I was in denial and I was sure it wasn't the truth that Wyatt had Down syndrome. I chose not to call my husband. I wanted to protect him, to give him rest and to shield him from what was certain to be the most jarring news of his life.

Morning came and the deafening silence turned into a bustling maternity ward. The dreaded visit from the pediatrician came an hour before I was expecting. She was kind, but straight-forward. She eluded to the fact that she knew the nurse had talked to me already. She looked over Wyatt. She may have exchanged pleasantries with me, but I don't remember it. All I remember is that she told me she thought he may have Down syndrome. All my hopes from the previous hours that the nurse was wrong just flew out the window. She said Wyatt was struggling with his oxygen levels. They tried to take blood again but it wasn't working. They need to put him in the NICU, in case he had a problem with his heart. His HEART? All that came out of my mouth was the word "OK" I think.

Help.

What is going on?

I CANNOT DO THIS.

I sat there and thought about all of my education. All my training on disability. I hadn't even thought about Down syndrome when considering all the things with which a child can be born! I thought about how I can do this for work, but how in the world can I do this 24/7 at home, too?! It was completely overwhelming, I must admit. There are people who say they had immediate peace about their child's diagnosis. I was not one of those people. I had immediate panic. Not for fear of who he was, but for fear of how I could possibly give him everything he needed. And to add the question of a heart defect. Wow. I went to the end of the road: what if I'm never going to be able to bring my son home?!?

Josh was still taking his mid-term and I didn't think I could get ahold of him. So, I did what I thought was my only other option: I called my Mom.

"Mom...?' I said as she answered. "do you think you're going to be here soon?"

Why? she asked.

"Mom, I'm sorry, but I need you to get here as soon as you can. Something's wrong. Mom, they think he has Down syndrome."

The words didn't feel real. I burst into tears. I tried to control it, but all my emotions from the previous night just exploded.

'What?' she asked.

She was at Kroger's and I could hear her tears begin to fall. She was as confused as I was.

"Honey, I'll be there as soon as I can. I'm leaving now,"  she said.

From here on it was a flurry of nurses, doctors, information and stress. They took Wyatt to the NICU and hooked him up to what seemed like everything on the planet. My mother arrived and brother-in-law came to see Wyatt and support us in our current state of unrest. I was in chaos.

And finally, Josh called. I told him that something happened this morning and that Wyatt was just taken to the NICU. He said he was on his way. When he arrived, I was with Wyatt. I had talked to the pediatrician, explaining my concern in telling him what was happening, as I was still trying to protect my husband from the news he was about to receive. (Now, I think how foolish of me to think this way, but it's the truth of the story). The kind doctor said she would take the lead in explaining to Josh what was happening.

When he walked in the room, I could see the panic on his face.

"Come on over, babe," I said. "Have a seat."

The doctor proceeded to explain to him what was going on: Down syndrome. I asked him if he needed a minute, and he retreated to our room. I gave him some time and went to meet him. I had only seen my husband shed tears twice before. He was in shock and his mind reeled. And when I came to support him, this would be the third time. I felt saddened and responsible that I did not give him the son he was expecting - a namesake. I would later find, he didn't fault me at all. (Love him!)

It was a tough 12 hours after delivery. Wyatt continued to have issues with his oxygen levels and he was becoming very jaundice. These factors, coupled with the question of Down syndrome, a possible heart defect and the current hospital's lack of resources to deal with these issues meant only one thing: he had to be transferred to Cincinnati Children's Hospital Medical Center (CCHMC). He was barely 16 hours old when an ambulance and FOUR members of CCHMC came to pick him up. Josh had decided to go spend dinner with Eden (a good choice) so he was not there when they came to take him. I sat looking at my tiny, perfect boy, hooked up to so many wires. They let me sit with him and hold him for about 20 minutes as they prepared for transport. I cried the entire time. Audible sobs wondering if my boy would make it. I felt like I didn't have enough information as to what was happening, so my mind was preparing for the absolute worst. When they left, I returned to my room. My sister-in-law and Josh arrived.

I turned from distrought, into a woman on a mission.

Thankfully, because I had delivered naturally, my body was bouncing back like you would not believe!! My guts were already working again and I had no stitches. I called for my mid-wife and bluntly told her that there is absolutely no reason for me to still be here when my son is not. Ineeded out! I asked for, and was granted a discharge a mere 17 hours after delivery.

Josh hadn't been there when Wyatt was transferred, so he wanted to go to Children's. I agreed, let's go see our son! By 10 pm, I was waddling slowly down the quiet hallway of the hospital. It was surreal and I couldn't believe I was here. At this point, I almost felt like "Forget Down syndrome? Wyatt just needs to get home!"

We knew we were in good care at arrival in the CCHMC NICU. We stayed by his side for a few hours. We were not allowed to hold him because of all the wires he was hooked up to.  Then sadly, went home. Without our son. And that is one of the toughest things I've ever done.


Days went by and we awaited our test results from Genetics. Then finally, the answer came: yes, Wyatt had an extra 21st chromosome. It was a definitive moment. I went home that afternoon, still without Wyatt, and sat down on the floor to play with my daughter. I burst into sobbing tears. Partly for the sadness that my family was not complete without my son being home. partly from lack of sleep and partly from the fact that every idealism I previously had, just changed.

Eden hugged me. It was healing. I looked at her and thought about life and hopes and dreams for my children. I thought....

I CAN DO THIS.

Not because it is simple, but because there is hope for ALL of our lives. God does not make mistakes. And trust me, God does not hand out children with special needs to the "right" people. But, I started to realize that this was not the mountian I saw before me a few days ago. It was a part of me, my life path. It's what I was meant to be all along - a mother of two beautiful and perfect children.

That night at home, after everyone was asleep, I opened up my computer and typed in those words that seemed so fearful before: Down syndrome birth. And in that search, I found a calmness and joy through my tears and I found the new beginnings of my [EXTRA]ordinary life. You see, in the midst of chaos, we were offered a joy that we never knew we could find. The fact that he cannot have children of his own is now a moot point. I've come to understand that our legacy is not dependent on our ability to produce offspring. It can be so much more than that.

The first few weeks were not easy, I'll admit. But the eventual peace we now feel began to grow by the light of my computer screen.

Wyatt came home from the NICU after a 13 day stay. He was taken off his feeding tube after three weeks. He has no major heart issues to date. He is healthy and thriving. There is no more fear for his future than there is for my daughters. We are better people - a better family - because of this tiny boy that came into the world. And he is everything that I always hoped my son would be to me: one of the greatest joys of my life.

Wyatt begins to wake up after a few days in the NICU

Wyatt his first night at Cincinnati Children's Hospital

Mommy loving on Wyatt

Daddy loving on Wyatt

Our little Monkey!

Wyatt comes HOME!









Monday, July 30, 2012

Wyatt CRAWLS!

This past week has been a flurry of getting our house put back together after it being ignored for the three years I was in graduate school. It's been crazy. I have laundry up to my EARS. One big thing on my to-do list, along with cleaning and organizing, purging and planning, was to finally get Wyatt into his own room. He has been sleeping in our bedroom since he was born.

After his birth, we started to build his room. Literally. It was concrete floors with no walls as it was the unfinished part of our basement. We contracted out what we could and did some of it ourselves. The last part to finish was to put on a final coat of paint on the walls and paint the baseboards. It sat like that for months until this week. We still need carpet, but finances ruled and we decided to wait a few months to do that until my paychecks are regular again. So we pulled together carpet swatches from our old carpet, from my Mom and from Josh's sister to cover exposed concrete. I was so excited when it was pulled together enough to dis-assemble, the re-assemble his crib into his room. This is his second night there and he's doing great!

I thought that would be the big excitement for the week. But as I was painting and organizing, something else happened. Wyatt decided to crawl. I mean REALLY CRAWL! Up until now he has been army crawling for about 4 months. He is a fast little bugger doing it, too. He has not, however, four-point crawled. But a few weeks ago, I has him in the grass in our front yard and he did this funny little four-point crawl. I was so excited. So I started having him practice. But he would do it for a few rotations then stop and drop to the army position. He would NOT do it inside on the regular floor, though. Hmmph... I tried to mimic and model it for him. With Eden by my side we would crawl around on all fours in our living room trying to get him to do it. I'm sure we looked ridiculous. He would just laugh. Then army crawl. Grrrrr.

Then this week, it happened! He leaned over, on all fours and crawled right in the living room. He is now doing it all across our living room and was even nice enough to demonstrate it for our fantastic Physical Therapist today. It's a great feeling to see him crawling around on the floor like a big boy.

We had the DSAGC Family Picnic this week, too. And while I was there, I was talking to some [EXTRA]ordinary friends of mine, Stephanie and John. They also have a boy with Down syndrome who is 7 months old. Stephanie said that she tought we worry too much about when things would happen. John also chimed in. He said, "you know, we focus on that too much sometimes. I mean, I've never been to a job interview where they've asked me 'what age did you start crawling? Or when did you first roll over?'"

HOW TRUE!?!?

 I agree. sometimes we over do it and worry about when our kids are going to do things. Then they start doing things when we least expect it. Yes, we need to encourage our children with therapy and a little extra attention sometimes, but mostly, we just need to let them guide their own path.

This week, I was excited about his room, but Wyatt had a special surprise in mind for us instead!

Here is Wyatt doing his four point crawling in the grass. I have yet to get it on video inside. (Hope you can see it! My computer needs major updating!)

video

Monday, July 16, 2012

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.


Tuesday, July 3, 2012

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!
 

Monday, June 11, 2012

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 fiancĂ©...

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!

.