Last night Lanie tried to turn herself into a mummy.

Or maybe it was a cyborg.

 

Not really.

In real life she was actually having a sleep study done and it was an awful experience.  While she was initially delighted in all the probes and wires and laughed and clapped as the techs covered her in goop and gauze, she quickly tired of the stickies on her face and fought me like she has never fought before. It was almost an hour of her screaming and pushing me away with her whole body and a strength that had me thinking hypotonia my arse before she had spent all of her little baby energy and fell asleep. For one hour.

Then restlessness set in and she was angry-napping, half waking often and wanting to suck her thumb but this probe thing was in the way or roll over but the wires kept stopping her.

It was a long, sad night watching Lanie having such a hard time.

We got home at around 5:45 am. She took a really long nap and has been exceptionally happy since.

Me…
I feel like I have a hangover.

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Filed under: Down syndromeLanie

Three times.

Three times in a row this boy has been the 100th customer at Chick-fil-A and won a bag of Chocolate Chunk Cookies.  I’ve never won anything by placing an order there. Even when it costs more than $60 because I forget that feeding 10 kids actually costs a lot of money.

Matthew has some sort of magical chicken ordering skills or something.  I need to start having him place all of our orders.

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Filed under: MatthewSometimes we do stuff

Things Maggie Says

Rabbit was holding Lanie and Maggie was talking to her, trying to get her attention.

After about 10 second she gave up and said, we need to get another baby. This one isn’t smiling.

This child would like me to get her a new baby of her own. I’m going to encourage her to at least wait until she learns that babies can’t be carried by their necks.

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Filed under: Uncategorized

Did you know that I run every day? I’m not exaggerating. My legs do at least one mile each and every morning and most of the time I run longer. Sometimes I run in the evening too.

Rabbit and 5 of my kids run every day too (6 if you count Lanie in the stroller) and even though we all prefer to run at different times of the day, we run in pairs and I always have at least one of them running with me.

There are things I’ve noticed since my family started running together that are definitely worth telling.

When I started running every day I was not new to running. Matthew(13) and I had been regularly competing in local 5K runs, and I was pushing Lanie in a jogging stroller (Lanie is another reason I run. I’ll explain that in another post later). Pushing that stroller, however, was taking so much out of me that I decided to do a little bit every day to build up more strength. Matthew joined me in that every day running challenge. Two days later, Sam(9) decided to start running with us and the day after that Ben(12) opted in too.  Since then, Gabe(16) and Rabbit started up with our little running club. And just a few days ago, I bought Jesse(8) a pair of running shoes because he wants to start running with us too.

Kait doesn’t run with us because she’s out on her own but she runs every day too and joins us for 5k races.

And now Joe(19) is considering it.

A while back my sister and I were having a conversation about getting kids to be active.  She said (and I’m paraphrasing here) that it should be a family thing and that she had this idea to start a family exercise program to get parents and children working together to achieve fitness goals.

And what she said is really starting to make sense because, while that wasn’t my goal when I started everyday running, I have noticed that in this short time of doing something hard together every single day our already bonded family has become considerably closer. We are setting goals together, encouraging one another, and holding each other accountable. We keep each other working toward something bigger. We keep each other running.

Running every day has become this huge bonding experience that I could never have predicted.

I’m not saying that you need to run everyday or workout or start this crazy, sweaty, heart pounding program to bond with your kids.  What I am saying is that doing something hard with your children, setting goals with them and meeting those goals with them, being proud of what you have accomplished together…  This is the kind of stuff that binds people. And while they grow up and morph into adults in the blink of an eye, and it sometimes seems like there is not much you have in common with them anymore, you’ll have this big thing to give you that common ground.

I am really having trouble figuring out how to end this post so I’m just going to leave it at this.
Don’t be afraid to do hard things with your children.

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Filed under: Friends & Familyi runSometimes we do stuff

I have a lot of words today.

I’ve put together 21 things I’ve learned and observations about being the mother of child with Down syndrome. I’ve only been doing this for a year so far so I’m sure I still have tons to learn and I’m interested in seeing how my views change and grow in future years. But as of right now, this is where I am.

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  1. Having a child with Down syndrome is so easy.
  2. Having a child with Down syndrome is so hard.
  3. How I reconcile numbers 1 and 2, I don’t know. But they are both true.
  4. In the beginning, I felt broken and lived most of my days in denial to avoid dealing with it. Other moms who had been where I was said that it would eventually be okay. That I would be okay.  They made me angry because I didn’t believe it would be that way for me.  I thought that I would be the eternally broken mother that would never be able to accept what was and that I would fail Lanie because of that.
  5. They were right though. Everything is okay. Really okay.
  6. But I’m still afraid I am going to fail her.
  7. I’ve learned that a baby with Down syndrome is just a baby.laniebunny She eats and poops and has opinions about things. She giggles and plays with toys and rambles on about nonsense in her baby babble talk. She loves her daddy and her siblings and vanilla icing. She grows and meets milestones and is always learning new things. She cries when she doesn’t get her way. She dances when she’s happy.
  8. I have learned that many mothers of children with Down syndrome can be sensitive and snarky about what you ask and how you ask it and what order the words are in and people first language, people! It’s too hard for me to remember all the rules and I have a child with Down syndrome! I get why people are hesitant and uncomfortable to ask about our kids.
  9. I am really okay with people asking me questions about Lanie’s Down syndrome.
  10. Lanie has to work hard at so many things and everything has to be therapy.  I knew this but didn’t           understand it. Most babies learn things in a natural pattern with no need for much encouragement but with Lanie, we have to make her work for it, reach further, try harder. Simple things like getting a toy that’s a few inches out of her reach take every bit of effort she has and she often fails. It makes me sad to know this will be her whole life.
  11. But unconditional love, forgiveness, generosity, joyfulness and optimism are things likely to come naturally to her thanks to that extra chromosome. If only these attributes were valued more in our society.
  12. Parents of children with Down syndrome (me!) are unbelievably proud of their kids. lanieclapsmarch31We want to talk about them and show them off and celebrate every little thing they do because they are amazing and you won’t understand this unless you have a child with Down syndrome. You’ll just have to trust me. Amazing.
  13. Lanie has numerous therapists.  Most of them live right here in our house and are under the age of 18. maggiehugslanie It’s really cool the way my other kids love her and play with her and work with her. They are so encouraging.
  14. Knowing what I know now, there is nothing I could go back and tell myself that would make any difference in how I felt and handled the news that Lanie was likely to be born with Down syndrome.  I had to feel what I felt to learn what I’ve learned to grow as much as I’ve grown to get where I am now.
  15. Having a baby with Down syndrome slows everything down. It’s such a blessing to get to enjoy each stage of babyhood just a little bit longer than I did with my typical babies.
  16. But, also, I get discouraged by this more than I’d like to admit.
  17. I want to buy all the therapy things. Anything that Lanie’s therapists have in their rooms I want to buy for her.  It’s not realistic but it doesn’t stop me from trying.
  18. People are sometimes uncomfortable around me now. I know they don’t mean anything by it, and it isn’t terribly visible, but I can feel it in all its heaviness none-the-less.
  19. Having a child with Down syndrome can be very lonely.
  20. God has spent many years preparing me for this. Even though it took a long time for me to accept that Lanie had Down syndrome, looking back I can see that before she was even a thought, God was already teaching me many things to prepare me for her. 
  21. And it’s a better place since she’s come along.

And if you have run across this page because you are just starting this journey and are searching for help, this is the best I can offer you:
Be patient with yourself. It takes time to get through the shock. It is an emotional rollercoaster and, for me, it didn’t matter how positive anybody was about Lanie’s diagnosis, I just had to let myself feel those emotions as they came. After a while, they didn’t come as frequently and joy has now replaced any sadness, for the most part. You may not be ready to hear this yet so just put this in your pocket for when the roller coaster slows down: Someday soon it will be okay. You will be okay.

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Filed under: Down syndromeGod is.Lanie

Florida. Where the leaves fall all year long.

Here is our freshly seeded backyard.

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The abundance of leaves is causing a minor problem but a couple of days ago Matthew took the leaf blower to it and it is bald spots are starting to fill in and look good but now we have a huge pile of leaves on the side of our house.

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Which brings me to the main point of this post.

There is only one nice thing about living in a tree dense neighborhood.

It’s pretty.

That’s it.  That’s the only nice thing.  Because oh my word the leaf problem is significant here.  We cut down 5 trees in our back yard a year and a half ago and it has appeared to make zero difference in how much raking and blowing we have to do. And then getting rid of the leaves is impossible because the trash guy won’t take them and we had to rent a Uhaul once to drag them to the dump.  It was 3 tons of leaves.

Three
Freaking
Tons

So this time around we decided to call a lawn company to do some serious leaf removal. And while I would much rather pay my boys to do it, we just don’t have the time or equipment necessary for such a big job. Plus, some rattlers have been spotted around here and the last thing I want is for one of my kids to find one while cleaning up the leaves and try to keep it as a pet. One of my goals since moving into this house is to create a very snake unfriendly environment in our backyard because Jars of brown widows are bad enough.

The picture above really doesn’t do our leaf problem any justice. That’s only a small part of our backyard and the front yard is much worse off. I cannot wait to see what our yard and gardens really look like.

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Filed under: this house

In search of a Spring garden.

I took the little kids to pick out some flowers at our local nursery and let me say that it was so much more expensive than Lowe’s.  I am all for shopping locally but, seriously, it was prohibitively expensive and we’re on a budget around here so I can’t drop $300 for the same thing I can get at Lowe’s for $75. I just can’t.

So we did what we could and I let each kid pick out two small flower pots at the local place and decided we’ll have to head over to Lowe’s to get the rest later.

Jesse only wanted blue flowers and when he found them he was finished.  Lucy could have wandered around the nursery all day long talking to herself about how much she loves all the colors and smells.  Maggie just wanted to reorganize all the pansies and bring home one of everything.

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Just looking at this picture reminds me of how much I spent on some simple flowers and makes me cringe just a little but these three had a lot of fun and you can’t put a pricetag on that, right?
Actually, I can. And I did. And it was ridiculous.

 

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Filed under: JesseLucyMaggieSometimes we do stuff

I blogged on Friday and then I didn’t blog through the weekend.  I had expected I would pick it up again on Monday but then I didn’t do that either and now it’s Wednesday so I figured I’d just post an update of sorts.

Things that happened while I wasn’t blogging:

— Our main toilet has started flushing on it’s own.  If you have read this blog for any length of time you know that it was about time something like this happened again.  We are known for appliances and other supposedly inanimate objects to start deciding things for themselves.  Remember the Tell Tale Microwave? How about the range?

— Kait’s guy sprung for dinner on Friday night and it was a great evening.  I really enjoy double dating with those two.

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I almost spit water out of my nose, which is par for the course when I’m around Kait for any length of time.  I would explain why she’s sitting on the ground by the trash can but you kinda had to be there. You really missed out on that one.

— Rabbit got me exactly what I wanted for my birthday, which we celebrated on Sunday night.  I wanted my own Aden & Anais bamboo blanket because Lanie’s is so soft and I felt bad for constantly stealing it from her.  He got me two of them.

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I’m over the moon in love with these blankets. And him.

— Will somebody please make an infographic to help husbands understand that if an Amazon Prime package is delivered to our door we will be compelled to open it unless we know that we shouldn’t because you tell us there is a Prime package coming that we shouldn’t open? Because that happened.  Again.

— I turned 42 on Monday and now have the answers to life, the universe, and everything. This should be a very informative year for you all. You’re welcome in advance.

— Spring happened on Monday as well and BAM! Just like that, it’s 85 degrees. Loving it.
I love Spring weather. I love the sun. I love warm afternoon rain showers. I love the rosy glow of my kids’ cheeks when they’re warm from running around outside. I love their bare feet and dirty toes and wild hair.  I love Florida.
Also, I love free ice cream at the Dairy Queen.

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— Tuesday was World Down Syndrome Day. We are still trying to figure out how our family will celebrate this day but yesterday we wore our Nothing Down About It tee’s and went to the library.

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Then we went to eat a Chick-fil-a.  There wasn’t one table open. Not even outside.  We ended up having to have them bag our food so we could take it home, which was sad because the kids couldn’t trade their kid’s meal toy for an ice cream cone.  I gave them a dessert anyway but now I have all these little kid’s meal toys all over the place.
Rabbit commemorated the day by wearing mismatched socks under his flight suit and I also did my morning run in mismatched socks.

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— Matthew and I have been running at least a mile every day. We do 5K races together but pushing Lanie in the stroller was killing me and running was no longer fun. We have some good hills in our neighborhood so I make sure to run some every day to help make pushing the stroller easier and help keep the enjoyment in running. Today was day 8.  Lanie loves it.

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The hills are still killing me but I can tell that I’m getting stronger. I’m starting to wonder how it would feel to run without pushing a stroller. I bet I could run like the wind blows.

Oh, and Maggie decided to floss.

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I asked her what she was doing and she said, I need to floss. My tongue is stuck in my tooth. 

And there you have it, my (mid) week in review. Now go and make yourself a Bavarian Crepe today because it’s National Bavarian Crepes Day.  Who knew.

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Filed under: Down syndromeFloridaFriends & FamilyHappy Birthdayi runLanieMaggieSometimes we do stuffthis house

How they do St. Patricks Day in Whoville.

Last year on this day I was in the hospital with Lanie, who was just 2 days old. She had bad jaundice, was not pooping well, had a wonky thyroid, unsettling sugar levels, and a rough echocardiogram.

wpid-wp-1460835101529.jpgThey couldn’t find a vein to redo her IV and had to call in the NICU nurses (again) to help find a vein. I remember nurses wearing cute shamrocks and one had a small one painted on her face. I appreciated her effort but, and I don’t know why, it all made me feel so sad.

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I’ve been thinking back on that day and I realize how far she has come. How far I have come.

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#theluckyfew is darn right.

A few days ago I told the kids that I was going to make them green pancakes for breakfast on St. Patricks Day. Then I woke up this morning and remembered that Gabe has cello lessons on Friday mornings so I promised the kids that I would make the green pancakes for lunch instead and that is what I did.

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Traditionally, I try to remember to buy the kids a box of Lucky Charms for March 17th, which I did, so I topped the pancakes with some syrup and added Lucky Charms marshmallows on top to keep the old tradition going strong and the whole thing turned out to look like something you’d see in a Dr. Suess story.

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The kids thought they were terrific, especially Jesse, who couldn’t stop talking about how amazing it looked and how great the color green was going to taste.

Pancakes with Lucky Charms on top for lunch was delicious, indeed.

I should also note that I went on a run today.

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Filed under: Down syndromeJesseLanieLook what I madeSometimes we do stuff

Lanie. A year in review.

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Filed under: Down syndromeLanie

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