Walk with the Riedmiller Family...

Our little cover boy...

2009-11-16T12:37:00.007-06:00

Is that a handsome face or what? Joey is on the cover of the latest issue of Reaching Out...the newsletter that the CdLS Foundation publishes 4 times a year. Reaching Out is full of all the latest news about Cornelia de Lange Syndrome, fundraising efforts and all kinds of helpful information. The picture of Joey was taken by Rick Guidotti of Positive Exposure last summer at the CdLS Conference in Chicago. To read the latest issue of Reaching Out, click here. If you are raising a child with Cornelia de Lange Syndrome or know someone who is, please contact the CdLS Foundation. You will be so glad you did. They are a wealth of information and support. You will discover that you are not alone.

Halloween adventures...

2009-11-03T10:34:00.005-06:00

Halloween has passed. Setting the clocks back an hour has passed. 23 days til Thanksgiving. Only 51 shopping days left til Christmas. Is it just me or is 2009 getting away from all of us? I feel like everything is happening in the blink of an eye! We had a lot of activities we took part in for Halloween. Our local downtown businesses had a trick or treat day. We went to a Halloween Carnival in a neighboring town. Our church hosted a Halloween party for kids. Joey and the girls had classroom parties. The day before Halloween, I successfully managed to get 1 eighth grade science project, 1 crocodile, 2 princesses, 2 teenagers, 12 teacher treats and 68 kid treats out the door by 7:45a.m. Yay for me! I also sported my orange light up Halloween shirt and helped out with Joey's kindergarten party. And don't forget the good old fashioned trick or treating. We have enough candy in our home to feed an army 3 square candy meals a day for several weeks to come. I also found a new favorite - Reese's Fast Break. Chocolate, peanut butter and soft nougat. It is yummy! But of course I didn't figure that out by sneaking into the kid's candy when no one is home! I would never, ever do that!

Here we are at a Halloween party at our church. There were all kinds of games to play!

Joey wore the same costume he wore last year...it still fits and it keeps him warm when we are trick or treating! We will have to see if it sticks around for a third year!

Emma wore a mermaid outfit and Abbie wore a Snow White dress...they wanted to save their princess costumes for their school party and trick or treating.

That's Tommie under the hoop - he was helping at the basketball game station

Ready for trick or treating! Princess Emma in pink and Princess Abbie in purple! She claimed she was still Snow White - just dressed for a party!

Caught a couple shots of Joey walking in his crocodile suit...

Tried to get them to stand still together for a picture...

The boys took them trick or treating to our neighbor's house. Right after this the boys took off to be with their friends. We weren't cool enough to hang out with I guess!

I went and helped at Joey's kindergarten Halloween party! Put on my orange light up Halloween shirt and had fun with the kids. Joey is at the end of the table with his para having a cookie.

Here's Joey class in their costumes...they got to parade around to the other kindergarten classrooms.

X marks the spot

2009-10-27T13:43:00.007-05:00

I'm not sure if you can read the above picture, but it is Joey's Kindergarten report card. He brought it home in his folder the other day. At first I was so excited! I'm thinking to myself I can't wait to look at it! I am so proud of how well he is doing in school! His social skills are great, his teachers really like him, he's been doing some great learning activities and his walking is getting better and better every day! As I started to read his report card, my emotions slowly deflated. Knows letter sounds...x. Knows letter names...x. Uses sounds to make words...x. Understands math concepts...x. Writes name...x. Counts objects correctly...x. I'm thinking "x"? What kind of grade is "x"? It turns out that "x" stands for "not evaluated at this time". I'm not sure what I was thinking...I guess I should have prepared myself somewhat before I looked at his report card. I guess I didn't know what his first kindergarten report card would be like. I was just excited to see it. I don't know if I thought I would see A's and B's like on John and Tommie's report cards...or E's, S's and G's for excellent, satisfactory and good. I don't know. All I know is I was sooooo excited that Joey brought home his first report card! And I can't leave out that he got two G's for music and two S's in P.E. Yay Joey! But it was seeing all those x's that really brought me down. Why is it when things seem to be going so great for your child there always seems to be one word, one phrase or one action that just knocks the wind out of you? Not evaluated at this time. Of course he can't be evaluated for these skills at this time...he is unable to do them. This is what hit me like a ton of bricks. When will he be able to be evaluated for these skills? When he is 10? 15? 20? 30? 40? I know he is unable to perform the same tasks as his kindergarten peers - but he has a great ability to learn. We have high hopes that someday he will be able to do these things. It's just kind of scary to not know when that someday will be. When you are raising a child, regardless of their abilities, there are joys and triumphs and unfortunately some sorrows too. Hopefully the joys and triumphs far outweigh the sorrow. This report card called life is full of A's, B's, G's, S's, E's and of course X's too. We just have to do the best we can. A friend of ours has this saying in her email signature: "Nobody can go back and start a new beginning, but anyone can start today and make a new ending." So that's what I'm gonna do.

"You tried to win tickets???"

2009-10-22T12:48:00.008-05:00

Shawn called me from work a couple weeks ago and said "Guess what? I just won 4 tickets to Vala's Pumpkin Patch on the radio! I was caller number 5!" Now Shawn is a good sport and usually goes along with any crazy schemes we may have of taking all the kids somewhere, but there is usually a little mumbling and grumbling. Plus the patch he won tickets to is about an hour and a half drive each way from our home. Needless to say, I was a little surprised that he would try to win tickets to this place and promote an out of town trip with the kids. So I said "You actually tried to win tickets to a pumpkin patch?" And he said "Sure, why not?"
Now I did a double take and wondered if this was the same husband talking that I have been married to for 17 years. I said "Okay! That's great! When should we go? How about next Saturday?" He says "Well, Nebraska plays football on TV that day and such and such game is on at 3:00 and then I wanna watch so and so play at 7:00 and..." No more doubts...this was definitely Shawn I was talking to!

So I looked at our calendar and discovered the kids had no school on October 19. A teacher work day or something. Shawn got the day off from work and the plans were set! We had a great time! The weather was gorgeous...we really lucked out because it has been cold, windy and rainy here for quite a few days. Monday it was 75 degrees, sunny and the perfect day to spend outside. John had to stay behind because he still had football practice in the afternoon. I could tell he was deeply saddened to have to stay home...a quiet house, computer and Xbox all to himself, his car in the driveway and $20 in his pocket "in case he needed anything". Of course he really wanted to go with us (yeah - right!).

We had a fantastic day filled with pig races, dragon shows and jumping pillows. Did I mention the Barnyard Animal Band and giant rocking chair? Yes, there were pumpkins too. Also, before you ask, Emma is wearing a blue/greenish tye-died type shirt and pink and grey striped pants. Why? It wasn't a battle I was gonna win. She picked out her outfit the day before we went and was bound and determined to wear it to the pumpkin patch. She wanted to be pretty for our trip she said. How can you resist that? Plus I wore an orange Happy Halloween shirt that lights up when I move. So technically she wasn't out of place. You gotta dig it.

(Ummmm...yeah - somehow I left these two pics out of the slide show)
Us at the beginning...How tall this fall?

Tommie and the girls ended the day with giant lollipops!

Do You See Me?

2009-10-17T12:01:00.002-05:00

The above video was made by a good friend of our family. She used to be Joey's Service Coordinator for the Early Development Network up until he turned 3. She had a vision of giving all kids with disabilities a strong voice...and an opportunity to be heard. When she approached us about including Joey in the video of course we said yes. She did a great job and we are so proud to be part of such a wonderful project. Thanks Jen - you are awesome!

Awareness about any disability is a big step towards acceptance. We have found in our experience that the more people that know and understand about Cornelia de Lange Syndrome, the more comfortable they are around Joey which is greatly beneficial to him in all aspects. We have to be the voice for our children, stand strong and help people realize how much of a blessing our children are in our lives. How much they teach us. How imporant they are to us. And how much we love them. Don't feel sorry for us...be happy that we are so fortunate to have these amazing children blessing our lives every day.

Please feel free to share this video with friends and family...you never know when you may reach that one person and help them on get on the road to acceptance. Let them know the journey will be awesome...and the trip will be the best one they have ever taken.

You can get the link to the video by clicking here.

Special Exposure/Wordless Wednesday

2009-10-14T17:06:00.001-05:00

Who needs toys when I've got this great box???

Read Joey's story and help support Team CdLS

2009-10-09T13:33:00.009-05:00

As you all know, our son Joey was born in 2004 with a rare genetic condition called Cornelia de Lange Syndrome. Our lives have changed in so many ways since the birth of Joey. Therapy sessions, doctor visits and special education services have become our lives - our normal. But we wouldn't have it any other way. Joey is a bright star in our lives - he is a gifted teacher, a hard worker and a loving human being.

The CdLS Foundation has been a great resource to us. We receive an immense amount of information and support. There is always someone available to lend a helping hand or offer guidance to families who face the daily struggles of raising a child with Cornelia de Lange Syndrome.

On October 11, many dedicated individuals will hit the pavement and run in the Chicago Marathon as a part of Team CdLS. For this we are grateful. Their goal of helping to support the wonderful work of the CdLS Foundation needs our help too. This year I am participating as a phantom runner in hopes of giving back in some way all the wonderful gifts we have received from the Foundation. Below, please read Joey's story and consider giving a donation to this awesome organization and help Team CdLS reach their goal. After you have read Joey's story, please visit our First Giving Page by clicking here. Donations through this site are safe and secure. Give as much or as little as you like, but please help Joey and the other children and adults like him to continue to receive the awesome support of the Cornelia de Lange Syndrome Foundation.

Joey's story

Joey was born April 26, 2004. My husband & I already had two sons, John who was 10 at the time, and Tommie, who was 8. We had tried to have another child for 4 unsuccessful years, and had resigned ourselves to having only 2 children. Heck, we would still be spring chickens when they graduated and left home! What would we do with ourselves? Needless to say, we were caught by surprise when we found out I was expecting after all this time. We were very excited and nervous too - it had been a long time since there had been a baby in the house, and by this time the old high chair, swing, playpen(are they even called playpens anymore?), etc. were long gone. Everything now-a-days is battery operated, plays music, vibrates, and lights up. No hand cranked swing for this little one! Anyway, my pregnancy went off without a hitch, although I developed gestational diabetes and had to keep tabs on that. I only had 2 or 3 ultrasounds (and was amazed at the pictures and video you can get now) and there was no indication that anything had gone awry. The baby was growing well and we opted not to find out what we were having. We went to the hospital on Monday, April 26, so I could be induced (I was also induced with the previous kids) and our beautiful son Joseph Edward was born at 4:41p.m. weighing 7lbs. 1oz. Although he was smaller than the other two boys (8lbs.2oz, and 8lbs.9oz. respectively) he appeared to be healthy and doing well. His blood sugar was low, but this is to be expected from babies with moms who have gestational diabetes. So the happy phone calls were made to relatives and friends, my mother-in-law brought the boys out to see their new brother, my sister came to visit, and so began the whirlwind that comes after you have a new baby. I went to bed that night, feeling tired but comfortably happy, with our long awaited new baby snuggled in the nursery. The next morning when I awoke, I was gingerly getting ready to take a shower, when the doctor knocked and came in on his rounds. After asking the standard questions about me, he proceeded to tell me that Joey was doing well, but he had some pediatricians come in and take a peek at him and they think he might have something called Cornelia de Lange Syndrome. Here I am, in the ever fashionable hospital gown, towel in one hand, underwear in the other, and someone was telling me there was something wrong with my baby. Wait, back the truck up. I was floored. "What do you mean, there's something wrong? He was fine, no one said there was anything wrong with him! What is this Cornelia de Lange Syndrome, is it like Downs Syndrome? Is he alright? You think he's (forgive me here) retarded? Is he sick? Is he healthy? Will he be able to walk, talk, go to school? What's wrong with him? What are we supposed to do?" I will admit, yes, I was flipping out. Here we had this seemingly healthy, full term baby, and now someone was telling me there might be something wrong? No way. Not my kid. Not us. Not my family. The doctor went on to say that he has some facial characteristics typical of the syndrome, and that they were going to do ultrasounds and scans, and blood tests, and this and that, and can they have my permission to take his picture to send it to some geneticists? Is there anything he can do for me right now? Let him know when my husband gets here, and he will come in and talk with us. In the meantime, try to relax, and I will put you in touch with the right people. The doctor left, I am still clutching my underwear, and I must call Shawn to tell him to get to the hospital, there may be something wrong with Joey. How do I make a phone call like that? And let me tell you, it's one of the hardest things I ever had to do. Shawn answers, I say get to the hospital, they think there's something the matter with Joey. He says "What?" I say "They think Joey might be (forgive me again) retarded!" He says"What?" and we go on like this for a few minutes. Unbeknown to us, our lives had just taken a dramatic turn towards the path of geneticists, therapists, all kinds of people with titles ending in "ist". When my husband arrived, we clung to each other, tears rolling down our cheeks, he asking questions, me not having any answers. What do we do now? We had no clue. We called the nurse to have Joey brought in. We sat down and waited, trying to comprehend everything that had happened in the last 45 minutes. 45 minutes?!? Is that all it took to turn everything we hoped for, prayed for, dreamed for into a spiraling trip into a life that we had no idea would be like? Enter, the nurse, with our darling son. She must have caught wind of what was going on, because she started in on a spiel about how she'd seen babies diagnosed with something before, only to have it turn out there was nothing wrong. She was sure Joey would be fine. Is she trying to make us feel better? I suppose, in her own way. I wanted to hold Joey. I tried holding him, I really did, but all I could do was cry, and search his face for any signs of this Cornelia de Lange Syndrome, not even knowing what I was looking for. I tried holding him, I really did, but I was too scared I would find some evidence that something was wrong. Soon, I had to give him to my husband, saying I'm sorry, I just can't hold him right now. I felt terrible, what kind of mother has a precious new baby and is too afraid to hold him, afraid of what she might discover? Me, I guess. And so began my trip into denial, which I hate to admit lasted for the better part of Joey's first year of life. The doctor came in after an hour or so of Shawn holding Joey, and me wanting desparately to, but just couldn't at the time. It's hard for me to explain, but I guess I can blame it on the mind numbing fear that was racing through my body. He said they were going to do an ultrasound of Joey's brain (what?) and basically his whole body, to see what they could find. He had already been in contact with some geneticists in Omaha, and normally it takes 3-4 months to get an appointment, but he was able to pull some strings and get us in a week from tomorrow. Do we have any questions? Questions? Of course we have questions. What are we supposed to do now? Is he healthy? Can he see? Can he hear? Is he in pain? What is Cornelia de Lange Syndrome? Will he walk? Will he talk? Is he sick? What does all this mean? Where do we go from here? Joey showed no signs of distress, was good size, but was having some trouble taking a bottle. He showed some facial characteristics of CdLS, and also small hands and feet. He does not have enough characteristics to say that this is definately what he has or doesn't have. He should be able to go home tomorrow. Okay, so we have a baby that someone thinks there is something wrong with, possibly CdLS, but no one can say for sure at this point. So what did we do? The next day, we took him home of course, and tried to absorb everything that was happening. At home, we took care of him, just like we did our other kids. Only this time, when Shawn was at work and the boys were at school, I would wander around the house bawling like a maniac, trying to find some answers to something I didn't want to believe was true. When Joey was 10 days old, we took off for Omaha to have our first encounter with a geneticist. He examined him, telling us he does have some of the signs of CdLS, but not enough to say for sure if this is what it is. He has the general facial qualities, small hands and feet, only one line across the palms of his hands, but doesn't have any of the health problems that are associated with this particular syndrome. And guess what-there is no blood test currently available to recognize CdLS. Great. So what do we do now? We make a follow-up appointment and head home with this precious baby and no one can definately tell us one way or another what is going on. So, like I said, I was in a deep state of denial, but I knew deep in my heart something wasn't quite right. When Joey was about 4-6months old, we noticed that he wasn't doing some of the "typical" things a baby his age should be doing. No rolling over, no wanting to sit up, and basically falling into the good old "failure to thrive" category. When he had a check-up with our family doctor, we discussed this and he gave us a referral to our local children's therapy facility. He began attending when he was around 8 months old. Meanwhile, I will still blame denial as I had not yet bothered to reach out to any early intervention programs or do any research about Cornelia de Lange Syndrome. Oh, and did I mention that through all this, I became pregnant again? We never thought that was in the cards, given how long it took to have Joey. Our beautiful daughter Emmaletha Mae was born March 14, 2005 as healthy as can be, weighing 8lbs. 1 oz. and only 10 1/2 months younger than her big brother. Our other daughter, Abbigail Diane followed along 14 months later, also as healthy as can be, weighing 9lbs.1oz. But these are stories for a different day. When Joey was around a year old, we had an appointment with a specialist to have him evaluated for a cranial helmet, as his head seemed to be a little misshapen. Well, he didn't meet the criteria for the helmet, but this particular doctor had some experience with CdLS, took one look at Joey and declared that he had Cornelia de Lange Syndrome, no doubt about it. And I'm like okay, someone has finally told me that he definately knows this is CdLS. That's all the kick in the rear I needed. I climbed out of my pit of denial, and finally took some action. I contacted all the early intervention services I could find, and one of the most important things I have ever done was to contact the CdLS Foundation. They are an incredible wealth of information and support. Since that day, we have hit CdLS full force and done everything we can to enrich Joey's life. When the denial phase was over and done with, there was a whole new world open to us. The more we learn and share about Joey and the syndrome he has, the better off he is. We try to utilize every resource available and spread awareness about CdLS every chance we get. I do regret not being honest with myself that first year, and not getting the help we needed right away. As much as I would like to, I can't turn back the clock. All we can do is forge ahead, take it a step at a time, and pray for the best. I would like to sign off with these thoughts--- Yesterday, I took Joey to therapy, and his PT took him outside for a little workout. As I was watching them through the window, he played in the play house and enjoyed some sand and water time. And something I will never forget, she had him climbing up the stairs and sliding down the slide. She put him in the swing, and he was actually enjoying it, which is not typical of Joey because swinging is usually one of his least favorite things to do. He was laughing and smiling and playing. It was one of the best days of my life.

CdLS Family Gathering...

2009-10-05T16:54:00.004-05:00

On Saturday, we had the pleasure of attending a CdLS family gathering here in Nebraska. We had such a good time! It was hosted by Christy and Dave, whose daughter Baylee has CdLS. There were 5 families in attendance - Vinny was the youngest at age 15 months and Beth Ann was the oldest at age 20. In the middle is Joey, age 5, Baylee, age 13 and Katy, age 15. It was so nice to get together with other families that have children who have the same syndrome Joey does. I think we could have talked and laughed and compared notes all night! We had a delicious meal and yummy desserts. It feels like we are all old friends and hated to have our time together end. Hopefully we can get together again soon! I can't hardly wait for the CdLS National Conference which will be held in Dallas in June 2010. Here are a few pictures from our time together!

Joey, John and Vinny

More Joey, John and Vinny

Shawn, Joey, John and Vinny

John and Vinny

John, Abbie, Vinny and Emma

Our family kind of liked Vinny - can you tell?

Me and Vinny

More me and Vinny

Beth Ann

Katy

Delicious food and fellowship...

Beth Ann, Katy and Baylee - aren't they gorgeous! If you look close you can see Joey flipping the light switches in the background!

Time for Thursday 13!

2009-09-24T20:51:00.006-05:00

Holy cow! Has another week passed by since I revived my weekly Thursday 13 post! How has your week been? Ours has been good - despite a small outbreak of the sickies around here. I had to pick up Joey early from school Monday (he had thrown up) and kept him home from school Tuesday and Wednesday. But he had no fever, no further vomiting and was in pretty good shape although we did put a call into the doctor and got him on an antibiotic for a sinus infection. Unfortunately we had to reschedule a couple appointments we had for him on Tuesday...he was to have a check up with his GI doc in Omaha and we were also going to have some blood drawn from him for some genetic testing but we are doing all that next week instead. John stayed home from school on Tuesday too with a complaint of not feeling well but didn't really have any bad flu symptoms. His high school has really been hit hard with over 300 students absent in one day earlier this week. But hopefully this is all the further the illnesses go in our house - knock on wood, cross my fingers, etc., etc. Other than that, things are as usual - Tommie's 8th grade football game today, John's varsity game on Friday night and Shawn and I will celebrate our 17th wedding anniversary on Saturday the 26th. I know you are thinking how could someone as young as me possibly be married for 17 years? lol The jury is still out on whether we will get to go out on the town or not. What would we possibly do with ourselves - eat a meal that is uninterrupted and doesn't involve ketchup or kool aid? Go to a movie that is not rated G? Actually get to carry on a conversation? Oh my - the possibilities are endless! Well, enough about us - here's what you came for! The continuation of Thursday 13 - letter N!

1. Negotiate - Have you ever tried to negotiate with a 4 year old? It goes something like this:
Emma: "Mommy, will you color with me?"
Me: "Not right now Emma. Let's clean up all these toys first."
Emma: "Why?"
Me: "Because the house is a mess and we need to pick everything up."
Emma: "Why?"
Me: "Because we have to put all your toys away then we can color."
Emma: "Why?"
Me: "Because if we leave everything on the floor it might get stepped on and broken."
Emma: "Why would somebody break our stuff Mommy?"
Me: "Well, it wouldn't be on purpose, it would be an accident."
Emma: "Why?"
Me: "Because sometimes people don't mean to do some of the things they do."
Emma: "Why?"
Me: "Because sometimes things that happen are an accident."
Emma: "It was a accident we got our toys all over Mommy. But that way Joey has every toy he wants to play and he can be happy! So we better leave all the toys out Mommy!"
Me: "You're right Emma. Let's color instead!"

2. Nickelodeon - The home of some of our favorites! Sponge Bob, Dora, Diego - we know them all!

3. Notebook - I made a communication notebook that Joey takes back and forth to school. It's a great way for us to be on the same track as his teachers and keep up to date on day to day happenings.

4. Need - Joey and his CdLS friends need you to donate to the CdLS Foundation and help support the runners in the Chicago Marathon on October 11th. It's not to late! You can donate by visiting our fundraising page at First Giving by clicking here. Thank you!

5. Noise - There is usually some type of noise going on in our house - unless by chance everybody is sleeping. You get used to it - and develop a sixth sense to what certain noises mean. The flicking of the light switches, the opening and closing of the microwave, dishwasher, refrigerator or oven doors means Joey is busy. And the disaster you will find if you hear water running in the bathroom too long - it means the girls have been busy.

6. Noodles - We are a noodle kind of family - we love pasta!

7. Nursery - Do you have a favorite nursery rhyme? We like Hey Diddle Diddle.

8. Necessity - Baby wipes are a necessity in our house. We use them for everything from wiping little faces and behinds to cleaning counters and walls. I always keep some in our van too! They are great for quick clean ups!

9. Nuisance - Don't you find all those plastic ties and strings and tape inside a box containing a new toy a huge nuisance? Come on! How many does there have to be?!? We spend more time undoing all the packaging than the kid actually spends playing with the toy!

10. Neuroblastoma - I know a brave little girl named Charli. She battled a rare form of childhood cancer called Neuroblastoma when she was a baby. She is now a beautiful, thriving 3 year with great future ahead of her. September is Childhood Cancer Awareness Month. To learn more about Charli and help spread awareness about childhood cancer, click here.

11. Night - I love to look at the night sky full of beautiful stars!

12. Newton - Anybody out there love a good Fig Newton?

13. Najadaceae - Our random learning word for the week. It means: A monotypic family of aquatic plants having narrow leaves and small flowers.

Welcome to the revival!

2009-09-17T17:07:00.006-05:00

I was sitting here thinking I just feel the need to blog today. Anyone else ever get that feeling? You know the one where you feel like you have something to say but you aren't quite sure what it is or if you find out what it is you want to say you aren't quite sure how to say it? Exactly. So here I am feeling this way today and I think hey - it's Thursday! And what goes with Thursdays? 13 of course! I dig in my blog archives and find my last post of alphabetical Thursday 13 was in June with the letter L. Why did I stop you ask? Well, I'm not quite sure exactly. A lot of things were happening around that time and I guess I kind of lost the enthusiasm for the good old Thursday 13 posts (sometimes entitled Friday's Edition of Thursday 13 if you recall). Now I am thinking to myself if I would have kept up with them and my calculations are correct, I would have, should have, and could have been on the letter X this week. But why dwell on all that - right? So, you are all cordially invited to today's revival of my Thursday 13 posts which occasionally may come on Fridays. And I am not going to start over with the letter A. If you want those wonderful, witty lists you can go dig in my archives. My post, my rules - correct? lol So here we go...fun with the letter M!

1. Mystery - Are any of you familiar with the Dum Dum suckers? You know the little ones that come in a bazillion flavors and nobody every eats the popcorn flavored ones? Anyway, today I grabbed two Dum Dum Suckers for the girls when I picked them up from school. One was blue and one was mystery flavor. You'd think mystery flavor would be fun - right? Not right. Not where Emma and Abbie are concerned. They both wanted blue, Emma ended up with it and Abbie screamed all the way home - "I don't want Mystery Mommy! I want blue!" Note to self: Always take the same colored suckers to the girls. And also: Dear Dum Dum Sucker Company, When packaging your suckers, would you consider putting the same color suckers into different bags? This way my girls won't fight over which color they get and I won't have to pull my hair out. Thank you.

2. Music - Joey loves music! Whether he is playing it or hearing it, music is his thing! He also has quite a good rhytmn when he bangs his hands on stuff!

3. Mopping - Hate it. Totally Shawn's job!

4. Marathon - Team CdLS will be running in the Chicago Marathon on October 11. Please consider donating to my phantom run to help these awesome people out. Visit our donation page by clicking here.

5. Miracle - Miracles are happening every day. Make the most out of them.

6. Motor - We had to get the passenger side electric window fixed on John's car cause it didn't work right. Apparently there is a motor in there that was done for. You'd think this would be fairly inexpensive. That's what I was thinking anyway. $300 later I'm thinking not so much.

7. Macaroni and cheese - One of the few edible items all our kids agree to eat.

8. Mountains - I would love to take a long, relaxing trip to the mountains someday.

9. Missed - Tommie was sick and missed 2 days of school this week. Hopefully it stops there and the rest of us don't get it!

10. Mother - Being a mother is the hardest job I've ever had. But definitely the most rewarding!

11. Montana - The girls love Hannah Montana. We saw the movie this summer - it was actually pretty good! The last movie soundtrack I probably bought was Footloose or Purple Rain. A couple weeks ago I purchased the Hannah Montana Movie soundtrack. What have they done to me???

12. Money - Our two teenage boys seem to think we have a money tree growing in the back yard. News flash boys - money doesn't grow on trees! For example John came home tonight and asked for money to put gas in his car. We ask "Do you have any money?" He says "Yeah - 20 bucks. But I don't want to use it for gas!" Of course not. How silly of us.

13. Madrepore - Our random M word for the week. It means: corals having calcareous skeletons; aggregations of which form reefs and islands.

Will you go the distance?

2009-09-12T19:44:00.004-05:00

Please support my phantom run for children with CdLS.

Chicago Marathon
Sunday, October 11, 2009

To benefit the CdLS Foundation in honor of Joey

This marathon honors our children, you see
to help raise funds and provide services they need.
Your support will help our programs expand,
giving hope to loved ones, to help them understand.

No sneakers to lace up or stretching to do first,
no band-aids for blisters or water for thirst.
It's the most effortless 26.2 miles ever run,
join me with a gift and my race is already won.

Thank you for your gift, your time and your love
on behalf of the beautiful child named above.
For if life, as has often been said, is a race,
you've put the child that we love in first place.

Visit our fundraising page by clicking here.
Please consider giving $1, $2, $10 - whatever you can. A little bit can go a long way. On behalf of Joey and our CdLS friends and families, thank you.

Pictures as promised....

2009-09-02T13:40:00.006-05:00

Here are a few pictures of some recent happenings around here. Enjoy!

John and Joey went for a walk...

Joey says let's go!

My beautiful niece Aubree...

My nephew Cooper turned 2!

Abbie sports a Columbus High bandana...

Emma gets in on the act...

Great poses right?

Gotta love that smile!

Not exactly sure what Emma is thinking of in this one...

Abbie likes to play dress up!

Joey hanging out under his crib...looks like he's giving us the peace sign!
(And yes, that is chalk drawings on his dresser drawer in case you were wondering!)

Abbie...all smiles on her first day of preschool!

Emma...ready to go to preschool too!

2 preschoolers and a kindergartner!

Joey...all ready for his first day of kindergarten!

Off he goes!

Tommie...1st day of 8th grade

John....1st day as a sophomore

John playing varsity football...he's out there somewhere I swear!

Got a good shot of John on the sidelines...good old #75!

To my classmates...

2009-08-30T15:06:00.003-05:00

A couple weeks ago I shared a letter I wrote on Joey's behalf to give to his teachers. We got a great response - everyone feels comfortable and they know the lines of communication are always open. I also purchased an inexpensive notebook which we use to communicate back and forth with Joey's teachers every day. This way they always know what time he will be picked up, what he's eating for lunch, etc. It is also a great way for the teachers to write about Joey's day so we know how he spends his time. It is a wonderful communication tool. Anyway, tomorrow Joey is the Star Student of the day. Each child in the kindergarten class gets a turn at Star Student. They are able to bring 2 or 3 things to class to show the other kids and they are able to tell them a little about their lives. I wrote a "kid friendly" version of his teacher letter that will be read for him. A copy will also be sent home with each child with a CdLS brochure attached so their parents can learn more about Joey too. This worked well in preschool last year so I'm hoping it will work well for kindergarten too. Educating others about CdLS helps win the battle against ignorance. Here is the letter Joey will be sharing:

Hi! My name is Joey. I am one of your classmates in Mrs. Emerson's class. In a lot of ways I am just like you. I am 5 years old. I have a mom and dad, two big brothers and two little sisters. My brother John is 16 and is in 10th grade. My brother Tommie is 13 and is in 8th grade. My sister Emma is 4 and my sister Abbie is 3. They go to preschool. I have 3 cats named Reggie, Blackie and Casey. I like to play with toys and go outside. I like building blocks and music. I really like to play my piano. My big brothers play lots of sports so I get to go to lots of footbal, basketball and baseball games. They are a lot of fun! But you might have noticed I am different in some ways too. I was born with Cornelia de Lange Syndrome. I am not sick, I am just taking a little longer to grow and learn some of the things that you already know how to do. I just learned how to walk by myself this summer. I get to go to a fun place called Wiggles and Giggles and a nice lady called a physical therapist is helping me to learn how to get better at my walking. I don't know how to talk much yet either, but another nice lady called a speech therapist is helping me to learn words too. So don't be upset if you talk to me and I don't answer you back, I am still learning how to say things. Sometimes you might see me in a blue chair when I come to school. Don't be afraid, it's just something I can ride in to help me get around better. If you have any questions about me, please ask Mrs. Emerson or Mrs. Weiser and they will help you find out what you want to know. I am happy to be your classmate. I know we will have lots of fun together!
In other news, now that school has started we are busier than ever. We have had a lot going on - the boys started back to school and the girls started preschool ( there were tears - only on my part though!). We got a new roof on our house and been to watch John play in his first varsity football game. Joey went to a pediatric ENT last week and doesn't have to have his tonsils out! Yay! When we had him at clinic in July, the doc noticed one of his tonsils was enlarged so we followed up with an ENT visit. There are no growths or abnormalities and his tonsils don't look diseased so that was good news. One is just larger than the other. Unless that starts to give him problems with eating or breathing, they can stay put for now.

I will update with pictures of all our happenings later this week. In the meantime, you can catch me on Facebook - that's where all the action seems to be and it is a wonderful way to connect with other CdLS families. If you haven't joined I encourage you to do so. It is an awesome source of communication and support. If you and your family feel alone in the daily battle of having a child with Cornlelia de Lange Syndrome, come on over - you will find lots of friends. Oh yeah, and I have a farm or two that keep me busy over there too!

To my teachers....

2009-08-20T10:55:00.003-05:00

Here is a letter I wrote on behalf of Joey to share with his teachers at school. It will help them learn more about Joey and all the things he can do. I have found that by sharing information about Joey and being open and honest about his condition works towards his benefit. The more the teachers know about Joey, the more they will be able to help him reach his goals. With each letter I attached a CdLS brochure to help promote awareness about this syndrome.

To My Teachers:

My name is Joey. I am 5 years old. In many ways I am a lot like most of the kids in your class. I have a mom and dad. I have 2 older brothers and 2 younger sisters. I have grandmas, grandpas, aunts, uncles and cousins. They all love me very much. I live in a house. I have my own room. I have 3 cats. I like to play. I like to go to school. I also like to learn. But I am also different from the other kids too. I was born with a rare condition that is called Cornelia de Lange Syndrome. I am not sick. I am a little bit smaller than other kids my age but I am healthy. Kids with CdLS have a lot of similarities. We share the same facial features and have many things in common. If you would like to learn more about CdLS, please visit www.CdLSusa.org.

Now that I am in kindergarten, I am busier than ever. In addition to going to school, I get to go to a fun place called Wiggles & Giggles 3 days a week for physical, occupational and speech therapy. They help me in a lot of ways. I also get to ride a horse called Buttermilk once a week. This helps me get stronger too. My big brothers play sports so I also get to go to a lot of baseball, football and basketball games. We are a busy family!

Usually I am very happy. Some things that make me unhappy might be that my braces have gotten uncomfortable on my feet. Will you take them off for awhile so my feet can stretch? Or I might be hungry. I can eat crackers, cookies and other snacks myself. Could you help me with my lunch? I also might be tired. Sometimes when I get tired I get frustrated and mad. Will you take a few minutes to play with me or sing me a song? This always helps me feel better.

Even though I have a disability, I am able to learn a lot of things. I just need a little extra time and help. I may not be able to speak but I can communicate in other ways. I know how to use PECS and I am in the process of learning how to use my new Dynavox. Sometimes I will tell you what I want or need by taking your hand and showing you. I like to figure out how things work and the easiest way to do things. My mom says I am very good at this. I like building things, playing with blocks, music and playing with my classmates. I also like light switches. I like walking with my walker and I am able to take some steps on my own. I always like to go to school and I have the ability to learn new things. I know other kids with CdLS that can talk, read and write - it just took them a little longer to do these things. I know I can learn to do these things too. All I need is your help. Thank you. I am happy to be in your class!

Joey Riedmiller

Dear Joey

2009-08-18T09:27:00.003-05:00

Dear Joey,
Today I had to let you go. Just a little. You see, today you started kindergarten. You are such a big boy! When I asked you if you were ready to go to school today, you smiled and laughed and clapped your hands. I know in your own way, you were trying to tell me "Come on Mom - it's not so bad! I love school!" Thank you for that. To tell you the truth, this whole kindergarten thing is pretty tough on your old mom. I'm trying to be brave like you taught me but I am missing you so much right now my heart hurts. I know you are okay but I can't help worrying about you and wondering what you are doing right now. I am also crying a lot - I promise to stop before I pick you up from school today! I am so proud of you and all the amazing things you have accomplished in the last 5 years. It seems just like yesterday you were the tiny baby we brought home to love and take care of. Now you are off to kindergarten and I can't turn back the clock no matter how much I want to. I want to thank you for all I've learned from you and for making our lives so amazing. Thank you for picking me as your mom. Even though I am not with you at school, I want you to know my spirit and my heart are right there beside you the whole way. I know you will do a great job. I love you Joey.

Kisses & (((((Hugs))))
Mom

25 random things about Joey...Part 2

2009-08-06T13:33:00.002-05:00

I was originally tagged for this challenge and posted it on Facebook. If you are not a part of our CdLS family facebook network, I encourage you to do so. It is a great way to connect with families. I have completely enjoyed learning new things about the other CdLS kiddos this week and wanted to post Joey's list on our blog too in case some of you are not on facebook. Some of the similiarities between Joey and his CdLS brothers and sisters is remarkable. Thank you to everyone for sharing their information and their pictures. Their smiles just make my day!

So here goes, a new random 25 .... you now the drill - if I tagged you, its because I am interested in getting to know you and your child better. If you decide to post your own 25, please tag me.

1. Joey loves light switches. If he sees a light switch, you can bet he will turn it on. (And off, and on, and off...you get the idea!) If he can't reach it, he will find a way to get to it! :o)

2. Joey has a very sweet disposition. Most of the time he is content and happy with the exception of an occasional melt down.

3. Joey turned 5 in April. He is 3rd in the line of 5 children. He has two older brothers ages 16 and 13. He also has two younger sisters, ages 4 and 3.

4. Fortunately, Joey is healthy. Despite a sinus infection here and there, he has never had any serious health issues except for reflux. He had a fundoplication in January 2008 which did wonders for him.

5. Joey weighed 7 lbs., 1 oz. when he was born which is pretty good size for a child born with CdLS. We had no previous indication anything was wrong with him until the day after his birth. He now weighs 30 lbs.

6. Joey is in his third season of equine therapy. He rides a horse once a week from May thru October. He really enjoys it!

7. Joey has physical therapy twice a week, occupational therapy twice a week and also speech therapy twice a week. He has been going to the same therapy facility since he was 8 months old. The girls are wonderful with him! He always looks forward to going.

8. Joey will start kindergarten in a couple weeks. He had one year of preschool/playschool when he was 3 and one year of preschool when he was four. I am nervous for him to start kindergarten but I know he will be in good hands.

9. Joey doesn't have any hearing or vision problems. His hands and feet are small but proportionate with the rest of his body.

10. Joey likes to figure things out. He is always trying to find the easiest way to get something done. When we put new batteries in one of his toys, he always likes to use the screwdriver and he knows exactly what to do with it.

11. Joey loves music. I have lost track of how many keyboards he has. Of course not all them them have new batteries at the same time. I should own stock in Duracell!

12. Joey loves Legos. He likes to put them together, take them apart and make towers on his Lego table.

13. Joey likes to wear his shoes and braces. Usually the only way he will stand and walk is if he has his shoes on. He started walking on his own a few weeks ago (yay!!) but is still a little unsteady. He walks on his terms - just like everything else he likes to do.

14. His favorite song is The Ants Go Marching. If he is crabby or if there is something we want him to do, we sing this song and it works wonders!

15. Joey loves to be outside. This hasn't always been the case. He's come a long way!

16. Joey likes to have his head scratched. Right on the top towards his forehead. It helps calm him down if he is upset.

17. The only word Joey says is Mama. He can communicate his needs by emotions and gestures. If he wants something he will take our hand and pull it towards what he wants. He is very good with the Picture Exchange Communication System and recently started working with a DynaVox.

18. Joey is a little ladies man. Every woman or girl he meets falls in love with him. He has a lot of lady friends! :o)

19. Joey dislikes having his picture taken. Once in awhile we can get a good one of him but if we are trying to take a family picture or something he doesn't usually cooperate too well.

20. Joey is very strong. Stronger than you would think he would be because of his small size. And boy does he have quick hands! He is also the fastest knee walker you will ever see!

21. Joey has become very social. I think going to school really helped that. He used to want to be by himself all the time. Now he prefers to be where all the action is.

22. Joey is a great teacher. I have learned so much from him. Patience, understanding, trust, love...the list goes on and on. I am a much better person because he is in my life.

23. Joey is very observant. If something is different or has changed, you can bet he will notice it right away.

24. I am grateful for all of the wonderful people we have met because of Joey. He has enriched our lives so much it is unbelievable. I can't imagine my life any other way.

25. We are so happy to be a part of the CdLS family. I don't know what we would do without everyone's support. It makes each day better to know all of you are out there for us. :o)

Catching up....

2009-08-01T20:16:00.006-05:00

I didn't think I had much to blog about but when it gets down to it, there has been a lot going on around here. So time for some pictures and catching up. First of all, Joey's visit to the Children's Developmental Clinic went well. This is a clinic we go to at Children's Hospital in Omaha once a year and get to sit in a small room for 5 or 6 hours while different doctors and therapists come in and tell us what they think. I was smart enough this time around to take Shawn along for reinforcements so keeping Joey entertained wasn't entirely left up to me. All in all clinic went pretty well. They check his progress and make any recommendations they may have. I am happy to report that they were all very pleased with his progress (I knew they would be!). Everyone was delighted with his walking skills he has developed and he gained 4 pounds since he was there last. A couple of them do think his braces are a little short and recommended a different pair of shoes (possibly Sketchers) but all in all very happy with his walking. When the pediatrician examined him, he thought he noticed that one of his tonsils is enlarged. So this means we get to make an appointment with an ENT doc for follow up to see if anything needs to be done. And when we spoke with the geneticist, she finally convinced us to have blood drawn from Joey for CdLS testing. We will have this done in September when we go back for a GI appointment. Joey kept himself busy trying to escape out the door (as you will see from the pictures) and taking off down the hallway. He also discovered the chair makes a pretty good drum. I will keep you updated on any future appointments he has. The next one is August 12 with our family doctor for his physical for kindergarten.

Let's see...what else...Abbie got her hands on a pair of scissors the other day when no one was looking. I guess she was trying her luck at being a beautician and cut a big chunk of hair right off the front. This prompted two haircut appointments for the girls on Friday. Neither one of them had ever had a haircut before so this was a new experience. They did pretty well.

John turned 16 this past week too. Gosh - I can hardly believe it! We celebrated by spending about 3 hours at the DVM getting his driver's license. Everybody and their dog must have been there that day with license issues. It took forever! But it was worth it cause he passed on the first try. Way to go John! It's really hard for me to let him take off in a car all by himself. It just feels so weird! Some days I feel like I should still be 16 instead of a mom of a 16 year old! When did I become the grown up?

That's all I've got for now. I'm trying to get geared up for school which will start here in about 2 1/2 weeks. For the record, we will have 2 preschoolers, a kindergartener, an 8th grader and a sophomore. Hopefully everything will go smoothly. I will let the following pictures do the rest of my talking! Have a great week!

John on the Columbus Reds...Season record 21-7! Way to go guys!

Joey spent most of his time trying to escape out the door at clinic...

We would bring him back in and he would get the door open again and again...

Playing drums on the chair....very entertaining!

John by his hand me down car with his new floormats!!

Sweet sixteen! With his Oreo ice cream cake and 16 candles...

Getting some help blowing out the candles...

This is what prompted the haircut appointments...

Probably about 4 inches right off the top!

Abbie before haircut...

Abbie getting hair cut...

Abbie after haircut....

Emma before haircut...

Emma getting haircut....

Emma after haircut...

Aren't they adorable!!

Sixteen candles...

2009-07-29T09:00:00.002-05:00

Dear John,

Happy Birthday to my strong, handsome first born son. Today you are 16 years old and will be driving on your own. My goodness, where has the time gone? I wanted to take this time to tell you how much I love you and how proud I am of you. It seems just like yesterday when you were the baby we brought home from the hospital to be held and cuddled and loved. Now you are the oldest of 5 and the kids couldn't ask for a better big brother. You are a caring, compassionate person and are a great example for your younger brothers and sisters to look up to. You work hard and have the determination that will get you far in this world. I know things are crazy around here most of the time but don't ever forget that your dad and I love you very much no matter what happens. Keep your priorities straight and you will stay on the right path. You have so much to look forward to and we will always be here for you. In the meantime, keep up the good work. Happy Birthday Son! I love you!

Just rambling...

2009-07-21T21:01:00.002-05:00

Boy - I just realized that I don't think I have ever gone this long without doing an update on the blog. So I have decided just to ramble on a bit. As I write this, I am on a computer at a lovely place called Rainbow House. It is a wonderful place that provides lodging for families when their children are patients at Children's Hospital in Omaha. Don't worry - none of the children are sick. Shawn and I came down with Joey tonight to stay cause he gets to go to whats called the Children's Developmental Clinic at the hospital bright and early in the morning. It saves getting up at 5am and driving here. My sister graciously agreed to keep the girls over night for us and Tommie tagged along to her house too. Which means John, who will be 16 in a week, has the house all to himself. He has weightlifting and open gym for basketball in the morning that he needs to get to. You better be behaving yourself John! We have ways of finding things out you know! Anyway, Children's Developmental Clinic is something Joey participates in once a year. We get to go and sit in a small exam room for 5 or 6 hours while doctors and therapists and whoever else wants to comes in. They look him over and give their opinions about what else we should be doing. It's not as bad as it sounds - in the past it has been very helpful and I know they will be very pleased with his progress this year. I will let everyone know how it turns out. I brought Shawn along for reinforcements this time. It's always good to have back up in situations like this with Joey, especially when the appointment will go on for a few hours. There won't be a light switch in a ten mile radius that won't get flipped or a chair that won't get knocked over. Thank goodness there won't be any lamps around! Tonight for instance we had him in the playroom here and there was a nice woman in there with her grandaughter. Unfortunately this woman had a cup full of ice in her hand. Before we even knew what was happening Joey went over to her, grabbed that cup and ice went flying everywhere! He has the quickest hands west of the Mississippi! But in all fairness to Joey, the lady wasn't supposed to have drinks in there anyway. Other than that excitement, things have been pretty tame for us. The boys are both done with baseball now, the girls are usually up to something and Joey is doing well. We have a family reunion coming up this weekend. We have relatives that live in Minnesota so the relatives from here are meeting the relatives from there at a half way point for all at Sioux Falls, South Dakota. Doesn't everyone aspire to vacation in South Dakota or is it just me? (lol) It will be fun to see everyone again as it has been a long, long time. 5 kids, 1 hotel room, 2 nights - come back for all the insane details!

The day the fair came to town...

2009-07-14T13:14:00.006-05:00

There are two things that happen in the summertime that I am happy to participate in.... and ecstatic when they are over! lol One of them is the 4th of July and the other is the fair. As you know, the 4th is over. The fair came to town last week so that is another summer milestone that has passed. Where is the time going? John will turn 16 in two weeks, baseball season is winding down and soon we will be shopping for school supplies. (Don't tell the older boys I mentioned the dreaded "S" word!) We had a good time at the fair - 5 hours and $5000 later everybody was tired but happy. Okay, we didn't quite spend $5000 but it sure seemed like it! For example, a couple orders of chicken strips and two slushies for the girls only set us back $18! Don't even get me started on what Tommie paid for some Dippin' Dots! Gotta love those spiral spuds smothered in cheese! I would pay anything for those! John tried something new this year - fried Oreos. I kid you not. They fry anything these days. Unfortunately I didn't get to try one cause he was with his friends when he got them but he said they were really good. I will have to try those next year. Yeah, yeah I know - complain and then head back for more. Will I ever learn? lol The boys spent most of the time with their friends - it's uncool to be seen with the old folks you know. The girls had a blast - Emma wasn't afraid of anything this year. Tommie took her on the big ferris wheel while Abbie waited below crying her eyes out cause she was too short to go with them. She was able to get on the bumper cars with them so that made up for it. Joey tolerated everything pretty well. We had never had him on any rides until this year. He liked the merry-go-round but wouldn't sit on one of the horses so Shawn rode with him on a bench. We got him on some race cars and he wasn't too impressed with those but I think he had fun too. All in all, good times and great memories!

Joey and Daddy on the race cars...

The girls are in on the action too...

Ever seen an alligator roller coaster?

Tommie and Abbie coming down the big slide...

Emma went down by herself this year!

Good old Merry-go-Round!

Joey didn't want to sit on a horse...

so he settled for the bench...

Gotta ride the train!

Here chickie, chickie, chickie!

Got one!

Joey wasn't too impressed with the ducks...

No Emma - we are not bringing home another cat!

Round and round goes the swing...

Can't go to the fair without riding the bumper cars! Here's Tommie and Abbie...

Tanner took Emma...

Tommie and Emma are on here somewhere...she wasn't afraid of anything this year!

A much needed proclamation...

2009-07-09T15:57:00.002-05:00

My friend Staci over at Mi4boys recently posted a Bill of Rights for Parents of Kids with Special Needs. A friend of hers compiled this proclamation using suggestions from parents. I was really moved by this bill of rights and felt compelled to share it here also. It gives a strong voice to all of us who try our best every day to face the challenges of raising a child with disabilities. I hope anyone who reads this gets the feelings of inspiration, hope, comfort and support that I felt.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world

4th of July highlights...

2009-07-06T19:20:00.003-05:00

Make a Smilebox slideshow

We hope everyone had a safe and happy 4th of July! The pictures in the slide show are from our busy weekend. There are also some pictures of Joey riding Buttermilk last Wednesday. If you haven't checked out the video in the previous post of him walking, take a peek at it before you go. He is doing awesome and getting better everyday! Go Joey! We are so proud of him! On Friday night, we joined some friends to watch our local fireworks display. We had fun and it gave the kids a chance to run around. On Saturday, we went to my mom's house and had a grilling bonanza! We had so many different kinds of meat we could have ate for a week! I enjoyed a thick juicy ribeye grilled to perfection by my brother-in-law. Thanks man - it was delicious! The kids lit off their fireworks at dark (and before!) and we all had a good time. The boys suprised me with a huge firework they bought called "One Bad Mother". Bad meaning good I hope! lol They were pleased with themselves and that was our grand finale of the night. Sunday was spent relaxing a little (FYI - relaxing is usually impossible in our house!) and I took our 5 kids and my nephews Cooper and Tanner to the park. We even stopped at Dairy Queen for ice cream! Yeah - I'm not entirely sure they will let us back into the joint but it saved having the mess in our van!

How was your holiday weekend?

Joey's Walk...

2009-07-03T14:43:00.004-05:00

Good news! Joey has been taking a lot of steps on his own! He has been doing great at therapy and walking all over the place when he is there. We are all so proud of him! The little stinker won't walk much around home though - we think he likes bigger open spaces to take off in. We caught him on video showing off to the volunteers at SMILE on Wednesday when he went to ride Buttermilk. They were thrilled too! He is a little unsteady yet but all in all he is making great progress! We have waited a long, long time for this and it's a dream come true that the time is here! Enjoy the peek at his new moves - there will be lots more to come!

Thank you...

2009-07-02T18:03:00.004-05:00

First off, I would like to thank all of you for your comforting words and support these last few days. After all of the kind words, I feel I need to offer more of an explanation as to what happened. Yes, unfortunately I did suffer a miscarriage last weekend. I was about 8 1/2 weeks along and we were just getting ready to tell the happy news in the next couple of weeks. We had intended to try and keep what happened a private matter but I ended up losing quite a bit of blood, had two trips to the ER, a D&C and spent Sunday night in the hospital. It was quite an ordeal. This baby caught us by surprise but we were definitely excited! Physically I am doing a lot better but emotionally I am a complete wreck. I know it has only been a few days but I am having a hard time moving on. You just never know what a day will bring. I know it has been hard on Shawn too, but he has remained strong for my sake and together I know we will get through this. The older boys have been troopers and have really stepped up by helping with the little ones. I can't stop wondering why? We already have 5 children. Why send us another baby now only to have it taken away? What if this would have happened when I was pregnant with one of the other children and then we wouldn't have one of them either? I am afraid I will spend the rest of my life wondering what if? What would he/she have been like? Or he/she would have been this age or that age by now. I am scared about a lot of things that I wasn't scared of before. I told you my emotions are running rampant! I know a lot of people probably think that I wasn't very far along, it wasn't a baby yet, etc, etc. move on, get over it. But to us, it was a baby. It was already a huge part of our lives and we already loved him/her with all our hearts. And now it's gone. If you are wondering why I am sharing all of these intimate details of our life with you, I have found it is helping me a great deal by getting my feelings out there and not keeping them bottled up inside. We have found comfort and support from many different people and places and it warms my heart to know that you are all out there rooting for us. You are all helping pull us through this difficult time. And for that I thank you. For any of you that may be reading this and have been through a simliar situation, my heart goes out to you. You have my sympathy and I'm sorry this happened to you too. I would like to end this post with a poem a friend sent me on Facebook. I found it very moving and it will be an inspiration to me every time I read it. Something good will come out of this, I just know it. I just have to figure out what it is.

What Makes a Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a mother
And I know I heard him say.

A mother has a baby
This we know is true.
But God can you be a Mother
When your baby’s not with you?

Yes, you can He replied
With confidence in His voice.
I give many women babies
When they leave is not their choice

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there’s no need to stay.

I just don’t understand this God
I want my baby here.
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say...

“We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.

I feel so lucky to have a Mom
Who had so much love for me.
I learned my lesson very quickly
My Mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don’t be sad today
I’m your baby and I’m here.”

So you see my dear sweet one
Your children are ok.
Your babies are here in My home
And this is where they’ll stay.

They’ll wait for you with Me
Until your lesson there is through.
And on the day that you come home
They’ll be at the gates for you.

So now you see what makes a Mother
It’s the feeling in your heart.
It’s the love you had so much of
Right from the very start.

Though some on Earth may not realize
Until their time is done.
They’ll be up here with me one day
and know you’re the best one.

I am sad...

2009-06-30T09:37:00.003-05:00

I am sad. Unfortunately, Shawn and I faced a personal loss this past weekend and have had a rough few days. Thanks honey for staying strong and all you've done with the kids and the housework while I try to get back on my feet. I also want to thank my sister for all her help - you are the best! I am on an emotional roller coaster right now and I am having a difficult time getting past all of this. I thought if I put some of my feelings in writing it would help me to heal. Thank you all for your support while I try to get back on track physically and emotionally.

You Are Loved...
A soft cry we'll never hear
A sweet smile we'll never see
Why did this happen?
How can this be?
No cheeks to caress
Or shower kisses upon
No tiny hands to hold
The dreams are all gone.
We won't know what you looked like
How big you would grow to be
Whose personality you may have
Hear you talk and laugh with glee
We won't have a chance to comfort you
And make everything alright
We won't get to take you to the park
Or watch you ride a bike.
Even though we couldn't meet
We love you with all our hearts
Before we got to be together
God chose for us to be apart.
He will take good care of you
Our angel up above
Our time was not meant to be right now
Just know that you are loved.

written by R Riedmiller 6/29/09