5 years ago today, I got the call.

It was 5 years ago today that I got the call.  Jason was putting the boys down for their afternoon naps when the social worker called.

"Kendra, we got the results back from the amnio and there are 3 copies of the 21st chromosome indicating that the baby does have Down syndrome."  I was 18 weeks into my pregnancy.

I hung up the phone and stood in shock.  Jason came downstairs and I was able to tell him the news.  He went off to process the news in his own quiet way.  Oh let's be honest.  He heard the news, responded with, "really," and went to bed.  The man is one of a kind.  I made three very difficult phone calls to family.  I couldn't make it through any of those calls without breaking down.  I was struggling to get past this vision of Down syndrome I had in my head.  I was going to have a daughter who had special needs.  The vision in my head of the perfect family just died in the flash of a phone call.  I worked with people with special needs.  I wasn't supposed to have a child with special needs.

As a person who likes to have a plan, I sat on my couch for the next couple of hours crying, processing, and (because I'm a multitasker) making a plan.  Step 1:  I would give myself two days to grieve and cry and feel sorry for myself.  I was drained pretty dry of tears after a single day and, while still really struggling, ready to get off the couch.  Step 2:  Read up.  Reading all the medical things that might go along with D/s will scare the crap out of you.  So I cancelled step 2.  Step 3:  Ditch the plan and just go with the flow.  One day at a time.  And we did.

The next months were a whirlwind of doctors appointments, a diagnosis of duodenal atresia, meetings with doctors and surgeons, and realizing that Alexis's first several weeks would be in the ICU.  My doctor also put me on medication for high blood pressure.

It's so cliche, but if only I'd known then what I know now.  I wish I'd known 5 years ago how I would marvel daily at Alexis and all she can do.  I wish I'd realized how proud I would be of her, and how every little accomplishment warrants a dance party and ice cream.  (She dances while I eat ice cream.)  All I thought of 5 years ago was how her appearance would be different, how sick she might be, and what delays she could have.  If only I'd known then that while there are frustrations and stresses over things like therapies and IEP's, our day to day struggles are that of any 4 year old: limiting her time watching tv, making her stop stealing her brother's toys, and getting her to stop pulling all the toilet paper off the roll. I wish I had known then how perfectly "normal" she would be.

A little over a year ago I was invited to join a group of local moms that have kids with Down syndrome.  Primarily it's a group where we can go to vent, brag, or ask questions related to our kids and to Down syndrome.  The group has gotten so big that we've started a spin off group which has also quickly grown.  There have been a handful of moms recently who are either due to have or have recently had a child with Down syndrome and duodenal atresia as Alexis did.  It's one of the most therapeutic thing I've ever done.  I get the privilege of telling a young scared mom that Alexis has many of the same things that her baby has, and that Alexis is now a healthy, happy, social, and sassy 4 year old.  Hopefully those moms think I'm helping them.  They have no idea how much they're helping me.

My blood pressure is perfect now, thank you very much.

A Perfect 10.

A milestone was hit today.  My oldest turned double digits.  10 years ago today, my sweet, loving, smart, tenderhearted Nicholas was born.

Nicholas made me a mom 10 years ago today.  I was born to be a mom.  I am blessed to be a mom.

Happy birthday Nicky.  I am so proud of you.  I love you.  Thank you for making me a mom.

Chicago!



Chicago was fantastic.  I had a brief moment of panic when I pulled out my camera to take pictures on day 1, only to find out that my camera card was full.  I quickly discovered that there were numerous pictures of carpet, ceilings, and eyeballs.  The following picture revealed the culprit.

 

Case solved.

We headed to Chicago on Monday and made our first stop at the Museum of Science and Industry.  All 3 kids loved it. 

 

Some days we're still trying to figure it out.



l-r, Soldier Field, John Hancock, Lego Store, and the view of Willis Tower from our hotel room

I was a little worried/disappointed/irritated when I asked Blake early on in the trip, what his favorite part was so far.  His response was, "The Lego store!  It's just like the one at home at the mall!"

Shedd Aquarium



 

 







I was really excited to see the Willis (formerly Sears) tower.  As many times as I've been to Chicago, I'd never been up to the top.  It did not disappoint.  We all ventured out onto the glass ledge and the view was fantastic!

 





 



Willis Tower

Once we were done in downtown Chicago and ready to relocate to a different hotel, we had a few hours to kill.  We decided to check out the GiGi's playhouse in Chicago.  We had no idea what to expect, or if they were even open.  We lucked out because not only was it open, I got to talk to a board member, a tutor, and a couple of parents.  This was definitely the highlight of my trip.  I've been so excited to bring GiGi's to Indy, but now that I've actually been to see a GiGi's, I'm ready to ROLL!  (Notice the GiGi's donation link I added to the top right of my blog?)  I was also glad that my family could experience what it is that I've been talking about so much these past few months.

We relocated to our other hotel on Wednesday and it was a surprise to the kids that we were going to a hotel with a huge water park.  They loved all of it:  the wave pool, the many different slides, hot tub, kiddie pool, basketball court pool.  And an extra bonus was that it was so deserted, especially on our first day.  The hotel also had multiple shops, restaurants, snack bars, ice cream and candy shop, spa, arcade, duck pin bowling, and a kids craft and activity room.  The hotel was a big hit with all the kids.

 

When we got home, I asked the boys what their top 3 things were in Chicago.  Nick ranked his top 3 as the Willis Tower, the Shedd, and the water park.  Blake said that he couldn't decide because it was all so fun.  His answer was perfect, and much better than saying the Lego store that's just like the one in our mall.

 

Glad to be home.



Down syndrome in the news. Here's my hope:

I’ve seen several articles and news stories lately about people with Down syndrome who have been voted into their homecoming court.  I love these uplifting stories.  Usually when I think of Alexis’s future, I worry about inclusion or the possibility of being bullied, where she’ll eventually live, and what kind of college experience she’ll have.  These stories give me hope that her future will include late night YouTube chats with her BFF, school dances and boyfriends, just like her peers.  I love these stories, and I really do love that people forward them to me regularly, but for me, the one thing that would be better than all these newstories, would be for these stories to not be newsworthy.  I don’t expect it to eventually be common for kids with Down syndrome to be voted as homecoming queen, or to be a cheerleader, or to make the winning shot for their basketball team, but I can’t wait for the day when none of these things is such a newsworthy surprise.

But if Alexis is ever voted homecoming queen, somebody call Channel 8.

Not exactly homecoming material.  Yet.

BW 2013 and a not-so-hidden gem

23 family and close friends (who are also family!) gathered at the Buddy Walk this past weekend to form Lexi Lou's Whos 2013.

About 5000 people gathered on Saturday to participate in the Buddy Walk and over $200,000 was raised for Down Syndrome Indiana.  We are so grateful for everyone's support for Alexis, our family, and for the community of people who have Down syndrome.  We are blessed.

The kids are currently on a 2-week fall break.  Alexis had an appointment in Indy on Monday afternoon and when we were headed back home, we passed Coxhall Gardens.  My friend Julie told me about C.G. after I admired some pictures she had taken.  In one of the pictures, her kids had climbed up a hill, and Julie took their picture from below as they were jumping and cropped it so it looked like they were flying.  Not one to have many original ideas of my own, we copied.

Nick

 

You get the idea. 

 

 And then there was Blake.

Take 1                                  Take 2

Finally, he got the idea:

 

 

 

 

Coxhall Gardens was beautiful!  The kids loved walking along the paths, over the bridge, and around the water as much as I did.  From the road, it looks like a simple, grassy park with a clock tower.  I had no idea how beautiful it was after you drove in.



They have an adorable little children's village

The jail was my favorite.



My babies.



Blake

One of the 2 clock towers



Lex

I love finding a (not-so) hidden gem.



Happy October!

Happy Down Syndrome Awareness Month!!!

 

Life is Good.

I love that football season is back.  I love Sundays, sitting around watching the Colts (and the Broncos and the Giants, but not the Patriots) with my kids, following the fantasy football scores, eating pizza, and being lazy.  Life is good.

 

 

My foot is continuing to heal pretty well.  It's been 4 weeks since I broke it and I've been off crutches for 2 weeks.  I've started driving again, but my foot is still in the boot for at least 3 more weeks.  I feel fine, no pain at all, when I'm just walking around with my foot in this big black boot.  The doctor wants me to take my foot out a couple times a day to work some range of motion because all the immobilization makes it darn stiff.  The MRI revealed a lot of issues that couldn't be seen on the x-ray with cracks and chips and deep bone bruising.  So I'm grateful that I don't need surgery and have no pain, at least until I start PT tomorrow and that sadist starts working my ankle in ways it doesn't want to go.

 

Other things we've been up to:

 

Lexi's haircut from a couple of weeks ago

Our trip to Conner Prairie

I've been trying to do a bit more at the school with the PTO.  I've waited a bit for Alexis to get older and to have a bit more free time, which I do have this year.  I volunteered at the school fundraiser where kids got donations to run at the "Chipper Chase".



I'm so glad that the kids still get excited when they know I'm coming to their school.  I dread the day when I'm "embarrassing" and the eye rolling begins.  Right now, I'm only embarrassing to them when I dance in the aisle at Target. 

Lexi needed nourishment after all her running around at school.

We are continuing to raise money for both GiGi's playhouse and the Buddy Walk and are grateful to so many friends and family who have made donations!  The Buddy Walk is October 12.  Please let me know if you'd like to join us that day for the 2.6 mile walk around the canal in downtown Indy.  I'll be doing it in a big black boot, but will take suggestions in how to decorate it in a Seuss theme.
As for GiGi's, we're about $600 away from our families personal goal.  I've added a link to the top right of this blog or you can click here if you'd like to make a donation.  Thanks so much again for all your support and generous donations!  We are so grateful!



Updates! (GiGi's and my foot. Which are unrelated, by the way.)

We're still plugging along on the GiGi's Playhouse Indy fundraising front.  I'm so grateful for the people that have made donations or expressed interest in making a donation.  (Here's the link to make a donation:  https://interland3.donorperfect.net/weblink/weblink.aspx?name=E133245&id=40)

There's a video that GiGi's Playhouse made a few years ago that is awesome!  If you still aren't quite sure what GiGi's is about, it will give you a better idea of what we are wanting to build.  I love this video, even though it chokes me up every time.  If you've got a few minutes, you can watch this and see why I feel so passionately about bringing GiGi's to Indy for Alexis:  http://www.youtube.com/watch?v=am0HUBsNlMs


There's a GiGi's in Bradley, IL that has the best pictures!  I love these!!

And for an update on my foot (see the last post if you don't know what I'm talking about), I went to see my regular doctor on Thursday and he's "worried" about it.  Apparently it's a bit more severe than the ER let on.  The chip of bone that broke off is more like a chunk.  He called it an avulsion fracture.  And my doctor thought I might have torn a ligament, and the sprain is pretty severe.  I'm still on crutches and now in a big ugly (and hot and itchy) boot, which makes walking easier than the splint.

My doctor referred me for an MRI which my insurance company denied.  But after the insurance company talked to my (persistent) doctor, viewed my x-ray, and had a meeting about my foot (seriously?) they decided to pay for the MRI after all.  The fact that my foot required a meeting to take place, makes me feel like my foot is a bit famous.  It also makes me a bit nervous that it is indeed more severe, but I'm so grateful that I don't have any significant pain.  I'm swollen still, making my foot and ankle feel stiff.  I feel bruised and achy, but that's it.  And after I get the MRI on Tuesday, I see an orthopedic doctor on Thursday.  I'm so grateful that my mom, dad, and aunt have been so available and that so many friends who have offered everything from meals to childcare to transportation.  Not being able to drive is really my biggest obstacle, so I'm keeping a list of names in case I need help in the future.

Grateful.

It finally happened. My kid broke my foot and put me in the hospital.

Well, kinda.  So maybe she didn't do it directly.  And maybe it was just an ER visit.  And maybe the bone isn't exactly broken.  More like chipped.  But it isn't the Labor Day Weekend I had originally planned.

God had a different plan. 

Friday night I took my kids to dinner and then we swung by a park in a neighboring town.  We had been there almost an hour and were just a quick swing and a couple slide runs away from heading home. 

Why any park chooses to have a 2-story high metal curly slide is beyond me.

Not the actual slide, but you get the idea.



Alexis decided she needed to go down that stinkin' slide.  So as she climbed the two levels of steps, I stayed close behind her just in case she should fall backwards.  She actually does really well on slides, but with a slide like this, I find it too high for any kid.  So once she was safely to the top, I backed down the stairs quickly with a plan to catch her once she came down the slide o' death.  Unfortunately, as I stepped off the bottom step onto the mulch below, my ankle gave out and I went down.  Hard.  And I heard my foot crunch.

Oh, the pain.

I had to sit in the mulch and watch my daughter descend the slide independently.  Fortunately, it was a safe decent for Alexis.  Unfortunately I was stuck, still sitting on the mulch as she climbed and descended 2 more times.  The boys finally came to see why I was sitting on the ground.  They stayed with Lexi while I got myself upright and found my footing.  I decided since I was able to put weight on my foot, it probably wasn't broken after all, so I hobbled back to the van and drove us home.  And unfortunately, Jason was already at work for the night, so I was on my own getting 3 kids to bed.  Thank goodness they are easy kids.  By that evening I was crawling up and down the steps of our house.

Saturday, I called my aunt who took me to the ER while Jason entertained the kids.  The x-ray showed a pretty nasty sprain and a chipped bone, so they put my right foot in a splint, gave me a prescription for Vicodin and sent me off for some crutches.

 

Honestly, I'm not in any pain.  As long as it's all wrapped up, it feels stiff and bruised, maybe a little achy at times, but no major pain.  And as luck would have it, Mom and Dad arrived in town a few hours later to spend the Labor Day weekend.  Mom has altered a few plans so that she can remain in town for the week and Paula is available (as she always is) to help out with the kiddos.  I'm so grateful.


Alexis kissed my splint to make it feel better.  Sweet girl.  Guess I won't blame her after all.



The first night when I was crawling around the house, Alexis kept asking, "You okay?"  And now she continues to ask about the crutches and splint.  The boys have been helpful, constantly fetching things for me and they have been highly entertained by my crutches.

 

 

I can still get around, just very slowly.  I attended a party down the street last night, went to church this morning, and try to take it easy and put my feet up when I can.  Thank goodness for my folks and aunt who have been waiting on me hand and ankle.

 

The middle picture above I had texted to Jason on the first night, hoping to elicit some sympathy.
He texted back, "Cankles are hot".

The ER doctor told me to make an appointment with my regular doctor in 5 days, so hopefully by then I can get rid of the splint and crutches and drive again, but we'll see.

 

It's not the Labor Day I had planned, but it hasn't been a bust by any means.  I've still been able to enjoy a long weekend with family and friends, free of Labor.  Hope yours is fun and uneventful!

A Letter from Alexis

Dear Family and Friends,

I hope you are having a fantastic summer! My parents (Jason and Kendra) and my brothers and I were busy with vacations, summer school, camps, boating, and trips to the pool. I love nothing more than being on the water, especially tubing behind the boat, but Daddy never goes fast enough and Mom’s a nervous wreck. I was happy to return back to school last week. I love my teachers, and riding the bus is almost as fun and bumpy as being on the tube.

I’m really excited because my mom told me that she’s helping to bring a Down syndrome awareness and education center to Indianapolis called GiGi’s Playhouse.  GiGi's originated in Chicago and now there are about 15 of these centers around the U.S.  It's a place I'll be able to go for therapeutic services and educational and social programs.  My mom is especially interested in enrolling me in the literacy program, but I think the ease at which I'm writing this letter shows I'm really quite advanced for a 4 year old.  I think the socialization groups and activities will by my greatest strength.  They may just ask me to lead the group.

 

“GiGi’s offers over 20 different types of programs, 15 of which are educational in nature. The program development is very strategic for children with Down syndrome and their families. Each and every program has a purpose with specific goals in the areas of social skill development, speech and language, or academic achievement.”

I’d love for you to go check out their website (http://gigisplayhouse.org) to see what GiGi’s Playhouse is all about!

My mom is excited to help make GiGi’s Playhouse happen for my friends and me by serving on the board of directors.  For now, all the board members are primarily serving as fund raisers. To get a GiGi’s Playhouse built, we need money. I’m sure that in the future there will be grants and fancy galas (I’ve got my ball gown picked out already), but to start, the board is contacting friends and family (or making their children do it) in the attempt to raise the initial money we need to get started. Our family’s personal goal is $2500.

If you are interested and able, we would appreciate any donation that you could make. The easiest way to make the donation is to go to this website: http://gigisplayhouse.org/locations-in-the-works#Indy and scroll down and click under the picture of my boyfriend Nolan (He’s cute, no? Thank goodness he likes older women.) and make a donation to the Indy location. You can also write a personal check payable to GiGi’s Playhouse with “Indianapolis” in the memo line. Any support you are able to offer, whether it’s financial support, as a volunteer, or spreading the word of what we are trying to accomplish, is appreciated. If you want any more information about GiGi’s or our fundraising efforts, don’t hesitate to ask. You can also get updates on our progress by following the GiGi’s Playhouse Indianapolis facebook page. We are hoping to open GiGi’s Indy next summer.  Thank you for considering our cause, and I will make sure to keep you informed of our progress!

Love,

Alexis (and the family)

It's the most wonderful time of the year...

...because school is back in session!  God bless the teachers!  While I loved our full yet brief summer, I function a lot better with a routine and a few hours every day to miss my kids.

Since our school adopted a balanced calendar for the first time this year, summer vacation lasted only 8 weeks.  We filled that 8 weeks with vacations, camps, summer school, and plenty more.


I think the highlight of the summer for my kids was Holiday World.



We made a trip to Elkhart and fit in a trip to the beach, a baseball game, and a fair.


The surprise bonus at the Silverhawks game: it was StarWars night!

Lexi loves going on rides.  The picture of her in tears here is because she had to get off the ride.



We went to Colts camp for the first time.  Blake liked it for the first 10 minutes and was ready to go home to his Legos, but Nick was excited to be there...not excited enough for my shy boy to approach any players for autographs, but I met Pat McAfee and got his autograph.


The picture on the top right is Pat McAfee signing my hat.  We're like, totally BFF's now.

 

 

 

 

This past weekend we attended a "Fly-In" with Down syndrome Indiana.  It was a great time and I got to see lots of my d/s mom sisters.  But I was most amazed by my new photo editing skill:

This may not be exciting to you, but I'm quite pleased with myself. It might warrant a blog post of it's own. Okay, maybe not. But maybe.



And then we blinked and summer vacation was over.  We met the kids' teachers and all 3 kids seem to be in really good classes again this year.  Nicholas has several friends in his 4th grade class, Blake has a Russian tortoise in his 3rd grade class, and Alexis now attends afternoon developmental preschool with the same great teacher as last year.

 Time for my nap.