May 10th is Cornelia de Lange Syndrome Awareness Day!

This Saturday we will celebrate CdLS Awareness Day!

Did you know it’s estimated that some 20,000 individuals have CdLS but remain without a diagnosis or support services?  With proper diagnosis and medical care, people with CdLS can enjoy a long life.  It is always our goal to raise awareness of CdLS and find those people who need a diagnosis or support services.  I can’t imagine what our lives would be like without the information and services we receive from the CdLS-USA Foundation.

Although the severity of CdLS differs in people, most have similar physical characteristics: small hands and feet, thin eyebrows that meet, long eyelashes, upturned nose and thin, downturned lips. Children develop both physically and cognitively much slower than their peers. Some have limb differences, missing limbs or partial joining of the toes. Common medical problems include severe gastroesophageal reflux, bowel abnormalities, heart defects, seizures and cleft palette.
Those of us in the “CdLS family” hope to provide information, hope and awareness on this special day. Please take a moment to educate yourself about CdLS by going to www.CdLSusa.org.

Yesterday, Nebraska Governor Dave Heinemen signed a proclamation declaring May 10th CdLS Awareness Day in Nebraska.  The Riedmiller family graciously accepted the proclamation.  You can read about it and see photos on their blog!

Our long day is over….

We decided that we’ve had enough paper route. It’s been approximately 1511 consecutive days of getting up at o’ dark thirty. Every.single.day.

It hasn’t been been terrible and most days it is actually quite pleasant, but since Dave broke his leg it’s gotten to be overwhelming. The fatigue has been crushing and I think that like Dave’s broken leg was a sign from God to quit, the fatigue was my sign (probably caused by the fact that I had to do everything around here while Dave was off his feet). Lately it has seemed absurd for me to come home from my part time job in the early afternoon with the sole objective of getting dinner together and going to bed as early as possible. It left little time for anything else. If I took time for anything else I paid for it with a dragging rear end and constant yawning that no amount of coffee could cure the next day.

I will miss it. I will miss the money. But I think we’re going to like having our life back. We’ll have the ability to travel again and see family. Maybe we’ll take a vacation this summer. We’ll get to sleep in on Sundays and snuggle in bed. Hopefully I won’t feel so tired all the time. Maybe I’ll start running again and train for another marathon if my body doesn’t protest too much.

Our last day is Friday. I’m excited for the rest of our lives.

Happy Birthday Baylee!

Baylee turned 12 on April 8th!

Like many parents of kids with special needs, we have a difficult time selecting appropriate birthday and Christmas gifts for Baylee. She’s not materialistic in the least, and doesn’t really care much for “stuff”. Just give her one good “baby” to love on, and her little TV and she’s a happy girl!

We’ve always felt she needed a bike, but she doesn’t have any concept of street sense and we didn’t feel it would be safe for her. She also won’t wear a helmet. By chance I happened to catch an ad for our local bike store that featured the Trek Mod. It’s a larger big-wheel type trike. It can even accommodate adults (see You Tube for videos of adults enjoying the Mod), so we went to see it up close and personal. It turned out to be a perfect fit for her and it comes in PINK!

The genius part of it is that it has a metal frame with a hole in the back that we can hook a dog leash to and walk behind her! I’m sure the hole wasn’t meant for that purpose, but it works for Baylee. We can keep a handle on her and keep her from veering out into the street at 100 miles an hour. She hasn’t quite got the hang of using the the brake, so for now we’ll be keeping her on the “short leash”. We have some bike trails in a nearby park that don’t have any easy access to streets, so she is riding there on her own.

It was a tad pricey, but as with any Trek bike, it is quality. Any gift that helps Baylee burn her destructive energy in a constructive way is worth every penny to me!

Blog Challenge: Photo Scavenger Hunt!

Here is my blog challenge assignment this week:

Share with us a photo for each of the following categories, and tell us about the photo, and/or the story behind it.

1. a sign of spring
2. an image of joy
3. a bad habit
4. a good word
5. a reflection of you

Get as creative or as simple as you want.
Be philisophical, or be silly.
The only rule is to open your eyes, and have fuN!

I guess I need to dust off the camera!  Feel free to join me!

RAK’D!

The other day I went to get our mail and there was a plain envelope addressed to us with no return address.  Curious, I thought…..I wonder who it’s from…..

I opened it and two one hundred bills tumbled out.  That’s all that was in it….two Benjamins.  It was a Random Act of Kindness.  I don’t know who it was from, and they don’t want us to know either.   I’m in awe….this person has the true spirit of giving….they can give without wanting or expecting appreciation or thanks.  What a great lesson to teach us.

To our anonymous Angel — THANK YOU.   We want you to know that we will definitely pay this forward hopefully sooner rather than later.   We know that God will continue to bless us and He will let us know when it’s time to pass on this gift and to whom we should bless with it.

Baylee 101

This is our latest CdLS-KIDS Blog Challenge.

Baylee 101

1.  Baylee is 11 years-old.  She will turn 12 on April 8th.

2.  Baylee likes to eat.  Her favorite room in the house is the kitchen and will spend hours in there foraging for food and grazing.

3.  Baylee’s hair is off limits.  Don’t touch the hair!

4.  Baylee loves music and watching Nickolodeon.

5.  Baylee touches everyone she meets.  She has changed many lives.

6.   Baylee loves baby dolls.

7.  Baylee’s baby dolls cannot wear clothing.

8.  Baylee is an expert at using a DynaMyte (an augmentative communication device).

9.  Baylee is our designated household toilet lid inspector.  All toilet lids are always down at our house.   This is a quite helpful quirk in a household of males.

10.  Our cats love Baylee because she lets them outside.

11.  Baylee can run very, very fast, but like the cheetah, she tires quickly and mommy can always catch up eventually.

12.  Baylee loves the movie “Lady and the Tramp”.

13.  Baylee loves to swim and can say “Pool” and “suit on”.

14.  Baylee notices every detail wherever she’s at….nothing goes unnoticed.

Baylee’s new word!

As is typical with the syndrome, speech is very difficult for our kids. Baylee has some words, but mostly only single words and very rarely a very short phrase. It is very exciting when Baylee says a new word! Her newest addition to her verbal dictionary is….drum roll please……”PLEASE”. The girl has manners! It sounds more like “peas”, but we’ll take it. Now I’m making her say “peas” for every request she makes and I’m sure she thinks I’m a bit nuts, but I just like to hear her say it.

Small victories are huge with our kids. It’s a bright spot in our not-so-fun February.

Spring, come quickly peas…..

When it rains, it POURS

It all started when Dave stepped on that fated patch of ice and broke his leg in three places. That was Friday, February 8th. Unfortunately, the emergency room missed a break up high in his leg and also missed one break in his ankle. They sent him home like it was no big deal with a bottle of Vicoden and told him to call a orthopedic doctor within 4 days. The soonest he could get in was the following Tuesday, so he spent the next four days suffering….just living from one dose of Vicoden to the next. On Wednesday after his break, he had surgery to place screws in his ankle. The surgery went well and the doctor thinks he’ll have a fully functioning ankle when it’s all healed. Today he had the stitches removed and a rigid cast was put on. He can’t do any weight bearing for at least three weeks at which time they’ll do another x-ray and decide whether he can have a walking boot. He’ll be off work for at least 3 months (if you don’t have disability insurance, GO GET IT NOW….we are quite thankful for it right now).

But that’s not all….when it rains, it POURS. Murphy decided to stick around our house for awhile and rub some salt into our wounds. By Saturday after Dave’s meeting with the ice, Lukas was sick with the “ick”…..cough, cold, sort throat, body aches, headache, fever….all the good stuff that is spreading like wildfire in North America right now. Of course, he had to share the disease with the rest of the family. By Wednesday, we were ALL sick….even Dave was sick. I think Wednesday was one of the lowest points in my life…I had to go deliver newspapers sick….not only to our regular customers, but also an extra 100 free papers we deliver to the people who don’t get the newspaper in our neighborhood. It was also 10 below that day. And since Dave was up all night in pain, so was I (not that I could sleep anyway with a nasty cough and the inability to breath comfortably!). Sleep deprivation at its finest. Also, as sick as he was, Lukas called me at about 5:15 am and asked me to pick him up so he could help me finish the papers. I was never so grateful for the help.

I think that week proved to all of us what we are made of. We made it through none the worse for the wear. Dave is now my fourth kiddo. I know he’d rather be slaving away at work, but I also think he’s enjoying being waited on constantly. I am putting him to work with “sit on your butt” jobs. He can finish our taxes on the computer, take over paying the bills and downloading our bank transactions, and I’ve assigned him the task of sorting recycled newspaper bags so we can increase my paper route profit. We unfortunately had to give up his paper route, so that means our debt snowball has come to a screeching halt for now. We won’t be calling DR anytime soon to scream “We’re debt freeeeeee!”, but this is only a delay. Victory will be ours someday soon.

Unfortunately, the people that live in the house where Dave fell have made no effort to make my approach to their house safer even when I specifically requested they do so. They won’t turn on their motion lights, nor salt or sand where they have drainage problems, but I’m trying to take the high road and trying to forgive. Anger only adds to the stress. When Dave called to get their insurance information, they didn’t even ask what his injuries were or how he was doing. A simple “we’re sorry we didn’t realize that a real person with real bones delivered our paper to our front door every day” would really help me, but I think this is an opportunity for us to learn to forgive even when it’s difficult to do so. Dave seems to be much more at peace with it than I am. I guess it’s just the protective Mother Bear in me! We will get up to $1000 to cover medical co-pays from their homeowner’s liability insurance, so that should help us weather the financial shake up a little bit easier.

To top off our lovely week, our 16 month-old dishwasher is broken with a “design flaw”! The timing could NOT have been worse. Unfortunately, it’s going to cost nearly as much as we paid for it to fix it. I stocked up on lots of paper plates and plastic cups to fill the landfill with, but still the dishes pile up and I’m quite short on the energy to wash them. Hopefully it will be fixed within the next 2 weeks.

I better go do dishes.

Murphy makes a visit….

I can’t believe that it didn’t happen sooner.  This month it’s been four years we’ve been “throwing newspapers for freedom”.  Four years of winter, cold, snow and ice.  It’s fabulous exercise!  Most of the time it’s easy if you don’t mind sleep deprivation.  It fits into our lives perfectly.

I should have know this would happen sooner or later, but our fears were realized today when Dave slipped on the ice in someone’s neglected, un-illuminated driveway and broke his ankle.  There was no way I could get him in the car, so we had to call 911 and he got a ride to the hospital in style.  X-rays showed a broken ankle bone, and it’s likely he has some tendon damage as well.  Basically, it’s a really bad sprain with a break.   He doesn’t see the orthopedic doctor until Tuesday.

As many of you know, my absolute pet peeve is people who do not shovel their driveways or treat their ice problems with sand and/or salt.  I’ve become the sidewalk police in my neighborhood.  If you don’t remove the snow and ice from your driveway according to city ordinance, the city is going to know about it.

What was so difficult to swallow about the accident in this driveway is that they have three huge floodlights on their property, but apparently are too cheap to spring for the electricity.  One fixture is a double motion flood light over the driveway, and then there’s another flood light over the  porch.  If either had been on, or turned on as he approached, he would have seen the ice.  Instead, the home owner had the gall to ask me why  Dave just didn’t step over the ice?  Umm….’cause it’s dark at 5 am?   Their negligence will have many lasting effects on our family….hopefully not devastating, but at this point, since Dave has not visited the doctor, we just don’t know.

All I do know is we won’t be calling Dave Ramsey to scream “We’re debt free!” anytime soon.  We’ll just pray that Dave can still work and that his break heals quickly.   Oh, and also hopeful our medical bills won’t run too high.

He was going to quit his route in the late spring anyway in anticipation of his new store opening.  Now he is retired.  There’s no way I’m letting the breadwinner of the family go out and risk his life and limb to get somebody’s paper to their front porch.

I know that these people didn’t intentionally mean to cause Dave or our family harm.  I know that they are also probably fighting some hard battles.  It’s just unfortunate that they don’t think about that real person who brings that paper to their door 365 days a year.  Sometimes I wonder if they think a flying fairy brings it every day….one that can fly safely in the dark over their ice.

So….if people come to your door and you live in a snowy climate, shovel your walks promptly.  Throw down some sand (it’s cheap, I promise!).  And turn on your fancy lights.  Someone’s livelihood depends on it.

Adventures in Paper Delivery

This time of year we get disgruntled. The weather is awful. It’s cold. There is ice and snow everywhere which means we have to get up even earlier to get papers delivered before deadline. We think about quitting every single day. Words come out of our mouths that we aren’t proud of when we have to trudge through unshoveled snow and shuffle tenderly and carefully over shiny ice one inch thick.

It is only this time of year that we wonder if this is worth it, but deep down, we both know it is. Financial peace, which we are already beginning to experience even though we haven’t quite met our goal yet, has been worth every single, awful, thankless day. As I tell my son, this job will put hair on your chest and make a man out of you….if you can do this, you can truly do anything. He probably doesn’t realize it or believe it yet, but I know someday he will. He doesn’t believe me about the hair on the chest, though.

DH and I like to try to inject humor into our often unfunny (and sometimes scary) experiences we’ve had delivering and we came up with our top ten list of things we’ve learned.

The Top Ten Things We Learned From Having a Paper Route in the Highlands

10. The little dogs are the ones you need to run from, but if you’re cornered, the dog can be beat back with a Wednesday, Thursday, Friday, Saturday or Sunday paper….but not a Monday or Tuesday edition.  If it’s Monday or Tuesday, prepare to get a tetnus shot and antibiotics.

9. When you step in dog poo, turn off heat in car. The car heater blowing on shoes makes the poo really ripe.

8. Even in young, affluent neighborhoods like the Highlands, people don’t shovel their walks or salt/sand their ice. Put the sidewalk inspector on speed dial.

7. Watch out for the teenage delinquent in NW 11th Circle wielding a metal scooter and intent on proving his manhood in front of his girlfriend at 4 am. He thinks we need to get a “real job”, and thus we deserve a scooter beating. His momma needs grow a spine and spank his butt.

6. Falling on ice hurts more at age 40 than it does at 15.

5. Teenage boys don’t like to get up at 4 am….and once you haul them out of bed, they are grumpy for some reason. I’m sure DH and I were NEVER like that at 15. Hmph….teenagers today….

4. Don’t hit the door of the house on NW Fairway with the newspaper….even if it weighs less than tissue paper and you couldn’t beat that little dog from #10 with it. If you do accidentally hit the door, high tail it out of there–in other words, RUN!

3. Teenage boy needs to learn to flatulate BEFORE he gets back in the car.

2. Repeated slamming of car door by teenage boy will cost $200 to repair and reduce net profit.

1. Put your car in park before you get out to deliver a paper. Failure to do so can cause injury to body and vehicle. Don’t ask me how I know.