Wordless Wednesday...

Happy Birthday to my baby...

John -- 7 months
Age 1 year - 1994
Dear John,
Happy 15th Birthday. Where has the time gone? We love you so much and are very proud of the young man you are becoming. You have a big heart, caring attitude, and an awesome way about you that will get you far in this big world. Congrats on passing your learner's permit test today - we knew you would! Love you lots - Mom, Dad, Tommie, Joey, Emma & Abbie

God took one giving spirit,
a pair of helping hands,
two arms to lighten burdens,
a heart that understands.
He added smiles and laughter,
and a knack for having fun...
He wrapped it up with tender care
and called this gift a "Son."

And a little child will lead them...

Today, I want to share something written by our 14 year old son, John. He was confirmed at our church earlier this year, and for class, each child had to pick a subject to do a faith project about. Our son, bless his heart, picked his little brother Joey. And here is his story...

The subject of my faith project is my brother Joey. We was born on April 26, 2004. The doctor's thought right away there might be something wrong with him. When Joey was a few weeks old, he was diagnosed with Cornelia de Lange Syndrome (CdLS).
CdLS is a congenital syndrome, meaning it is present from birth. It affects children and adults both physically and cognitively, and there are estimated to be 10,000 children and adults living without a diagnosis. Children with CdLS tend to have low birth weight or delayed growth and small stature. Small hands and feet are common. The most prominent feature seems to be thin eyebrows that meet in the middle and long curly eyelashes. Some of these children experience seizures, heart defects, reflux, and vision and hearing problems. Some also battle against feeding difficulties. There can be several different physical and mental delays, and missing or malformed limbs. Early intervention is important with such activities as physical, occupational, and speech therapies. Joey attends physical/occupational therapy twice a week and speech therapy twice a week. He goes to preschool one day a week, and participates in horse back riding therapy during the summer months.
I chose to write about Joey and CdLS because my Grandma says everything happens for a reason. My mom and dad believe Joey was sent to us because God has a special plan for our lives. At first we were scared, mainly because we had never heard of Cornelia de Lange Syndrome and weren't sure what the future would be for Joey. He is truly a blessing and we feel privileged to have been chosen to take this special journey with him. We have learned a lot from him. He wakes up every day with smile on his face, and whoever takes him out of his crib gets some very cool pats on the their back from him. He tries his hardest every single day to gain strength and do the best he can do. Thanks to Joey, we have met a lot of very special people -- people who have dedicated their lives to helping Joey and other children strive to be the best they can be. My family and I have a lot of faith that God will guide us in the right direction and help us make the most out of our lives and of Joey's.

"The wolf will live with the lamb,

the leopard will lie down with the goat,

the calf and the lion and the yearling together;

and a little child will lead them."

Isaiah 11:6

Wordless Wednesday...

Another summer weekend has come and gone. Can you believe it? We don't quite know what to do with ourselves now that baseball is over, but we managed to spend some time with some family we hadn't seen for awhile. On Saturday, the girls & I went with my sister & Cooper to Albion to see the folks. My brother Eric and sister-in-law Sherry and my beautiful niece Aubree came to visit also so was nice to see them. Aubree is getting so big! On Sunday, Andrea & Cooper took John & I to Omaha to do some dishwasher shopping. After almost 16 years, mine is finally giving out. It was here when we moved in in 1992, so not sure how old it is. It leaks water from time to time, and has several issues with some of the parts falling off. We found a nice one at Nebraske Furniture Mart that I will pick up next week when I take Joey to Omaha for a Dr.'s appointment. Then we'll see if Shawn knows anything about installing it. On Sunday evening, Shawn's brother Aaron and sister-in-law Beth had a birthday party for our twin niece & nephew, who turned 2 on Monday. Happy Birthday Dylan & Lexi! We had a great meal, followed by some fun water play for the kids. As you will see from the pictures below, they had a blast. Our week is proceeding as usual -- so far, so good! On a side note, it has been 1 year ago today that Shawn's Grandma Heany passed away. We miss you Donna!

Family

Hello fair...good-bye bankie

Well, we had a major catastrophe -- at least a catastrophe in a 2 year old's eyes. Our county fair was in Columbus last weekend so we took the girls on Friday evening. Abbie never likes to go anywhere without her favorite pink "bankie", so of course we took it to the fair with us. We had a great time and didn't realize the blanket was missing until we arrived home around midnight. She carried it at various times during the evening, but I can't pinpoint exactly when she might not have had it. She didn't take it on rides, so we're thinking it fell out of our double stroller, which was hauling a cooler, diaper bag, balloons, popcorn, cotton candy, some bouncy balls, and other various game prizes that cost about $10 to win but are worth about 10 cents(you know the ones -- right?). Anyway, we searched the van when we got home with no success. We tried giving her a blanket that seemed similiar, but she would throw it down, and say "NO! YUCK!". She was so tired, she eventually went to sleep. I went to bed also, but sleep would not come because I kept thinking that maybe her bankie was laying in the parking lot or somewhere just waiting for me to come and get it. So I get up at 1:15a.m., John happens to be in the kitchen, I tell him where I am going, he hops in and back we go to the fairgrounds. The whole drive, I'm thinking it will just be there in the lot, we will pick it up, and head home. Not the case. We end up parking, and walking through the now deserted midway just in time to see all the beer garden patrons trying to find there vehicles. Needless to say, we saw and heard some interesting things, but of course no blanket. At least I got to spend some quality time with John. The next day, I head back, check lost and found, leave my name, number, and description of the missing bankie, ask around at a few different game booths and carnival employees, and you guessed it -- no sign of it. In the meantime, at home Abbie is getting increasingly more upset. We received her favorite friend along with some clothing and other items handed down from some friends, so I have no idea where it actually came from. It is a pink woven material, with satin sewn around the edges, and a bear/angel emblem on it and says Angel Baby. Did they have one at our local Walmart? No. Schweser's? No. Anywhere else in town? No. Although I did find a plain pink woven blanket with satin sides at JC Penney's. I took it home, snuck it in, wrinkled it up a few times, asked Shawn if he thought it would pass, to which he wisely replied "I don't know", presented it to Abbie and said "Look Abbie! Mommy washed your bankie! Now it is all clean!" I held my breath while she reached for it, grabbed it, hugged it, smiled and said "Bankie!" Thank goodness! Problem solved! It will be okay! This lasted for a few precious seconds until our adorable Emma piped up and said"That's not Abbie's blanket! Where is the bear! That's not Abbie's blanket! It always had strings hanging from it!" My mama always said there'd be days like this....

Thanks Emma...

Friday morning things around here were pretty hectic. I had the kids at the baseball games the night before, and Emma was looking for her backpack that we had taken with us stuffed with crayons, markers, color books and paper. I couldn't get much done (not that I ever do), the kids were cranky and the animals were underfoot. Emma & I made one trip out to the van to look for her things with no luck. We came back in, searched some more and still no luck. We went out once more and found it stuck under some other stuff in the back. Emma, with all her 3 year old wisdom, looked at me and said,"See mom, at least you can get somethin' done right!" Needless to say, the smile she brought to my face made everything go a little better. Thanks Emma.

1 Hotel Room, 2 Beds... & Just the 7 of Us

Happy Thursday! Hope everyone had a safe and happy 4th of July! We did, although I came down with a nasty cold but am feeling tons better now. On the 3rd, we went to a friend's house to watch the fireworks from Ag Park. The little ones liked them pretty well...Emma had her hands covering her ears the whole time so Abbie had to do the same thing. On the 4th, Shawn took the girls and John and Tommie to Omaha to spend the night as John's Mariner's team played in the state baseball tournament. Joey and I stayed behind and had a great supper at my sister's house. It was really strange being in the house with one child -- Joey and I enjoyed ourselves. On Saturday, we joined the rest of the family in Omaha. It was interesting having all of us trying to sleep in the same room, but we found a place for everybody. On Sunday, John's team played at 8a.m. and won, 12:30p.m. and won, finding themselves in the State Championship game at 2:30. It was a great game, and we all felt in our hearts that they were going to win, but unfortunately they lost in extra innings 3-2. They boys gave it their all, and we are really proud of them. This was their last game together as Mariner's, so they really wanted to go out with a State Championship title. It was an emotional experience for all of us involved because the kids have been together for so long. 2nd place is excellent too and the b

oys have worked really hard. Anyway, now our weekends are free for a little while -- maybe we can get caught up on all of the things that have been neglected around here all summer. John will be 15 on the 29th, and he is anxious to get his learner's permit test

taken. I don't know if I am ready for him to be driving or not, but I guess I will find

out. School will start in about 5 weeks, I am having a tough time with how fast the summer is going. Seems like school just got out, and now we have to think about getting ready for it again. 4 of the 5 will be

going off to school, two preschoolers, one in middle school, and one in high school. Will we survive? Stay tuned to find out!

Positive Exposure...

Just a quick note -- Please take a moment to visit Positive Exposure, listed under our favorite websites. Rick Guidotti is a photographer with this organization and he attended the CdLS Conference in Chicago and took several amazing photos of our kiddos. He really captured their beautiful faces and spirits. When you get to the site, click on gallery, then under genetic conditions you will find Cornelia de Lange Syndrome. Watch for Joey and enjoy the show!

Back from the Conference

We are back from the CdLS Conference -- actually we have been back since Sunday but it has taken me this long to find the time for a blog post. The conference was amazing -- a little overwhelming at first but it didn't take long for us to feel at home with all of the wonderful people we met. The families, the children, the CdLS Foundation staff and volunteers -- they all felt like old friends even though we hadn't met any of them in person until the conference. We arrived Wednesday evening and Joey tolerated the plane ride very well. I wasn't sure what to expect from him, but he was a very good boy. Thursday was the registration and from 5-7 there was a pasta dinner. On Friday, there were various workshops to attend, and Joey managed to win the hearts of a few Girl Scouts providing daycare. In the evening, there was an ice cream social and a musician playing songs for the kids. Saturday there were some general sessions and a wonderful banquet and dancing in the evening. Unfortuantely, we had to catch our flight at 8a.m. on Sunday so we missed the farewell breakfast but said our good-byes Saturday night. It's hard for me to put this whole experience into words, although a few of the parents I met said it is a life changing experience and I would have to agree with that. The feelings and emotions that I felt were somewhat overwhelming at times, and it's great to know and to have the support of people that are going through the exact same thing. The CdLS staff are the best, and I thank them for all the kindness and caring shown to everyone. I also want to thank Ashley for making the journey with us, I couldn't have done it alone. I am in the process of uploading a video that we have of a few different moments over the weekend, and I am also going to post some photos -- hopefully I will have some time to finish up over the weekend. We hope everybody has a safe and happy 4th of July!