Thursday, April 9, 2009

Happy Birthday, Randall

My brother, Randall, would be 44 years old today. He died in a motorcycle accident when he was 25. I can't believe he's been gone so long. Sean was only 2 years old when he died. Neither Clayton nor my nieces were even born. At the time, and for a long time after, we didn't see how life could go on. But, eventually, with the births of babies and the healing of time, it did. It wasn't the same life, but we learned to live a new normal. Even after all these years, I cry as I type this. I miss him. I wonder what he would be like at this time of his life. Would he have married his girlfriend? Would he have kids? Would he be happy? One thing I do know is we have a guardian Angel in heaven looking over us and we will see him again one day.

Until then, Happy Birthday Randall. I love you.

Saturday, February 14, 2009

Happy 21st Birthday, Sean

It was Sunday, February 14, 1988, Valentine’s Day. I was 36 weeks pregnant and eagerly awaiting the arrival of my first child. Just four more weeks and my precious baby would be here. My sister-in-law had me a baby shower on Saturday. I had already had one baby shower in Marion thrown by my best friend. The nursery was ready – it had been for a couple of months. We had started our Lamaze classes. At that time the “natural, no drug” approach was big. I could hardly wait until the baby arrived. Turns out, I wouldn’t have to wait much longer.

My mom and dad had planned to come up on Saturday for my baby shower but my dad was not feeling well so they didn’t come on Saturday but did get to come on Sunday. My mom had baby things to bring me and she wanted to see what I got at my shower. I didn’t sleep well Saturday night. I kinda had some stomach cramps and my back was hurting. I didn’t think that much about it. My mom and dad got to our house and I was in the shower. Carl had already told my mom how I was feeling and she barged in on me in the shower. She knew that I was in labor. I insisted I was not but she insisted I call the doctor. I called and when I told them how I was feeling they thought I should go to the hospital and be checked out. Well, a little before noon off we went to the hospital. We lived 30 minutes away from the hospital so we all rode in the same car. All the way to the hospital I said I couldn’t be in labor, I wasn’t due for four more weeks. And, it was Valentine’s Day, I couldn’t have a baby on Valentine’s Day. I got to the hospital and they put me in a room. They hooked me up to a monitor and said I was having contractions. My mom was in the room with me and Carl and my dad were in the waiting room. A doctor came in and examined me. His eyes got big and he said “You’re dilated to 5 cm. You’re going to have this baby today.” I turned to my mom and said “Go get Carl NOW.” I couldn’t believe it. I couldn’t believe my baby was coming early. I wasn’t worried by that. I was excited. I didn’t have to wait any longer to see if it was a girl or a boy. We didn’t find out ahead of time because we wanted to be surprised. We had a girl’s name picked out and a boy’s name – Kathryn Elizabeth or Sean Michael. It wouldn’t be much longer before I would find out. I progressed quickly. The doctor that was on call wasn’t my regular doctor, who was a male. The doctor on call was female. She was very calm and very caring. She came in a few times to check on me and would hold my hand through the contractions. I didn’t want to take any kind of medicine because I didn’t want to look like a wimp. I would breathe through the contractions and it did help a little. Everything went pretty fast so I didn’t really have time to think about it. It soon came time to push and they wanted to take me to an operating room in case there were any problems. They gave Carl a pair of scrubs to put on and we had quite a laugh about those. They were huge. Carl isn’t real tall and they had given him scrubs that would have fit the Jolly Green Giant!! I think we were laughing so we wouldn’t be so nervous. I was nervous about spitting out a baby, not about anything being wrong. That thought hadn’t even occurred to me.

My pregnancy had been normal. I had all the prenatal care, including sonograms. There was never any mention of him being small or anything else. I wasn’t sick at all and I loved being pregnant. I loved feeling that life inside of me. Looking back, I am so glad that I didn’t know anything ahead of time because I was blissfully unaware of how my life was about to change and the journey I was about to embark upon.

It was about 4:00 p.m. by now. We went to the operating room and I was finally able to push. That actually felt good. I didn’t have to push too much and the head started coming. I remember the doctor saying “It’s a good thing he’s got a small head or he wouldn’t be coming out this way.” I ended up having to have quite a few stitches afterwards. At 4:27 p.m. we heard “It’s a boy.” I, of course, cried. Carl did, too. It was very overwhelming. Unfortunately, we didn’t hear much else. There was a very weak cry. Carl said he knew something was wrong right away. I didn’t. All I wanted to do was see my baby. All I got was a quick peek. They immediately took him over to a table and started working on him. He wasn’t crying and wasn’t breathing well. They said they had to get him to the nursery right away. They took him to the regular nursery to give him oxygen and warm him up. He weighed 5 lb., 4 oz. and was 18 inches long. I did see that he had a head full of black hair. It was parted on the side. He was so tiny but so adorable.

I was taken back to my room and we were not told a whole lot. My mom and dad left to go home because my mom had to work the next day. We really didn’t think there was anything wrong. At that time it was not a big deal to breast feed and I had already decided before he was born that I didn’t want to try it. They gave me a pill to dry up my milk. It was really a good thing because he would have never been able to breast feed anyway. Also at that time you didn’t really keep the babies in your room. They were in the nursery except for feeding time. Sean didn’t get to come back to my room at all because they were having trouble getting him to eat. Every time he would suck he would quit breathing and turn blue. Carl went down to the nursery to see him but couldn’t hold him or touch him. We still didn’t know what was going on. We both slept that night and Sean stayed in the nursery. The next morning he still wasn’t able to eat without turning blue and the decision was made to send him to the NICU. The pediatrician came in to tell me that they were transferring him to the NICU to see if they could figure out what was going on. Soon two nurses wheeled him in for me to see him before going to the NICU. I was upset at that time and wanted to hold him. One nurse asked the other one if I could hold him before they took him but she said no, they wanted him to go right then. It was only two floors away in the same hospital but at that time it felt like they were taking him to the moon. I just wanted to hold my baby and know that everything was going to be okay.

Once he was in the NICU they started running all kinds of tests. We still didn’t know what was going on or if something was wrong. We suspected that something was wrong but we just thought he was sick. I was discharged from the hospital on Tuesday morning without my baby. That was, at that time of my life, the hardest thing I had ever had to do. Little did I know the challenges that were on the horizon.

Sean was in the hospital for 9 days. He was discharged on February 23, Carl’s birthday. He was discharged without any diagnosis or explanation for why he was so small. We brought him home and began the next chapter of our lives. We were finally a family and it didn’t matter what we had to face, we could do it together.

Happy 21st Birthday, Sean. I love you. You have shown me what true love is. I am so proud to be your mom.

Monday, February 2, 2009

CdLS Blog Challenge

Today's CdLS blog challenge is:
What kind of jerry-rigging or child-proofing have you done at home to meet the needs of your child with CdLS? This could be a serious or comical post.

We have certainly Sean-proofed our house.

When Sean was little he could run like the wind so we have fences in our front yard and our back yard. There are locks on the gates so that he can't open them. Now that he is older, he moves much slower and that has helped alot.

We have locks and chains on all of our doors. When people come to our house and then try to leave they say it's like trying to get out of Fort Knox.

We don't have end tables because when we did have them Sean would clear them off. He broke many a lamp until we got smart and got the kind that attach to the wall.

Speaking of attached to the wall, most of our furniture is attached to the wall. He has on more than one occasion knocked over large pieces of furniture. He still tries but doesn't seem very interested when he sees they aren't going to go anywhere.

All he has in his room is his bed and a dresser. It's long enough that he can't get it turned over. We got Clayton a chest of drawers a few weeks ago and put it in Sean's room until we could get it up to Clayton's room. Guess what? Sean knocked it over. It had only been in his room for about 10 minutes.

When he was small we could have things on the kitchen counter but not anymore. We call him Stretch Armstrong because it is amazing how far he can reach.

I have a wooden tray that we keep the salt, pepper, toothpicks and napkins on. We can't leave it on the table while we're eating because he pushes it off (actually, he pushes it into his brother's plate which doesn't make him happy).

The bathroom door has to be kept shut and we have the childproof covers on the knobs. If he finds it open, he will get in the bathtub and turn on the water. Luckily, the few times that it's happened it's been the cold water.

We have a gate permanently attached to the wall between our kitchen and front room so that we can keep him out of the kitchen when we're cooking. He doesn't bother the trash in the house but we had to get a trash can with a lid that snaps on in the motorhome because he was constantly turning it over.

And, don't even think about leaving a pen or marker within his reach. I learned that the hard way - twice. (I'm not a quick study) Once we had brand new carpeting in the front room and I turned my head for 2 seconds. When I came back, he had found a black magic marker and performed his magic on the floor and TV cabinet. Luckily because the carpet was new and had the stain resistant stuff on it, it came out. Most of the marks came off the TV cabinet but there are still a few there. He also found one in our motorhome once and colored from one end of the motorhome to the other on the cabinets, fridge, stove, everything in sight.

I'm sure there are other things that I can't even think of, like others have said, this is just normal for us. You do what you have to do to keep everyone safe.

Wednesday, December 31, 2008

Blog Challenge - 2008 In Review

As 2008 comes to a close, take some time to reflect on the past year. Tell us about acomplishments and triumphs, good times and bad times. What will be most memorable for you about 2008?

We have had a good 2008. Lots of things have changed in our lives.

First, we added to our family in the form of a pet. We got our dog, Rascal, in April. He is a cute little guy and he loves to go camping with us. He is part beagle but we don't know who the daddy is. Everyone swears he looks like a rotweiler. He's almost a year old and bigger than we expected him to be so who knows what he is mixed with.

We also did some room rearranging and it's been the best thing we could have ever done. I got into a bad habit years ago because of Sean's reflux and sleeping habits. I started sleeping with him to make sure that he didn't get choked from throwing up and to keep him in bed at night instead of roaming (and tearing up) the house. Well, 20 years passed by very quickly and I was still sleeping in his room. He got to the point where he didn't want me in there and started some behaviors (like slapping) which were his way of letting me know, I guess. So, we moved Clayton upstairs to a room I would have killed for when I was growing up. That gave Sean his own room and me and Carl our own room. We put very little in Sean's room - a bed and dresser - and soft toys and lots of pillows. He can be in there and we don't have to worry about him hurting himself. I'm sure at some point he'll figure out how to do some damage to himself or something else but he hasn't so far. He goes in there himself and I think he really enjoys his alone time. Clayton really enjoys his alone time. We barely see him. Our house is a 1-1/2 story and the upstairs is one big room. His bed is on one side and his TV and computer are on the other side. He can have friends over and they have their own area and it is really nice. He's had a sleepover and is about to have another one. He also became a teenager this year. No signs of raging hormones yet but I'm sure they'll be here soon. God, please give me strength!

Another big change is that Carl retired this spring. He is older than I am so I am still working (for about 20 more years. Yuck.) Anyway, he had worked at the same place for 40 years so he felt he had paid his dues. He thought he was retiring to relax but, oh, was he wrong. With him being home and me still working, he is now Mr. Mom. He does the housework and, for the first time in 20 years, takes care of Sean. He sees now what I had to do for the past 20 years, except I still had to work, too. He is doing a great job and I am so totally grateful. It has given me some much needed rest and I feel like such a weight has been taken off of me.

Carl's help has given me time to stretch my creative wings. Well, they're not really wings, and I'm not really that creative, but I've been trying. Several months ago I told you about key ring clips I was making. I still make them and I have started making spoon bracelets, too. I had never heard of a spoon bracelet (I had heard of rings). I had made some key ring clips out of old forks and someone saw them and asked if I could make a spoon bracelet. I said I had never heard of them but I would see what I could come up with. Well, after some internet research, we created our first one. It is a collaborative effort between Carl and I. He does the physical work and I do the decorating. He cuts them and bends them and then I put beads on them. I will have to post pictures of some because you probably can't picture what I'm talking about. I had one friend say "Aren't those dangerous since you use forks?" She thought we were using the tines of the forks - we are not. We cut them off. She is such a goofball! Love you, Bonita!!

Another exciting thing was that a new Wal-Mart Supercenter opened about three minutes from my house. I am in heaven. I used to have to travel about 20 minutes and while that may not seem like much of a trip, when you consider I only went once a week and had to do all my shopping, it made for about a two or three hour trip weekly. Now, with it so close, I can make small runs and don't have to load down the cart and my car. I LOVE IT!!! Thank you, Wal-Mart, for making my life easier. Now, could I please have a Target?

One thing that was not so good this year was that Sean was diagnosed with Barrett's Esophagus. The pediatric GI doc. that we went to in St. Louis diagnosed him and was not very encouraging with the news. He admitted that he didn't have any knowledge really because it normally isn't a pediatric condition. We have since seen an adult GI doc. and he was more encouraging. He said that there are stages that it progresses through and he normally doesn't see it progess to cancer. He said that Sean being young doesn't give him any greater of a chance of developing cancer than anyone else. We have to meet with him again when he has seen all of Sean's records and he will do a scope in July of next year and we will go from there. I hope he is right in his thoughts. Sean's reflux is finally under control and he has had a good year healthwise. (Great, now I've probably jinxed us.) I am trusting in God and trying not to worry too much about the diagnosis. Keep Sean in your prayers, though.

Another biggy for me this year is joining the blogging world. I didn't even know what a blog was a year ago. I started reading one family's blog and from there "met" other people and then started my own blog and have "met" many more. It is so amazing to be able to connect with people like this. It is so nice to know that I am not alone. Even though Sean is one of the older CdLS kids, I can so relate to what everyone else is going through. It is such a great tool for everyone. I only wish I would have had access to something like this when Sean was born. Besides being able to connect with CdLS moms, it is so amazing to see other people and read their stories and see the support and love that comes from complete strangers. So many times we only hear the horror stories of the world but when you see some of the acts of kindness, you know there is still good in the world. Thank you, blogging world, for sharing your humor, sarcasm, good times, bad times, and all the other stuff. I look forward to another year of connecting.

We, of course, camped this year but I won't bore you with those stories again. I hope the gas prices stay down so we can go a little more next year. Maybe we'll even venture out of Illinois. Okay, we probably won't, but if we did, where would we go? I would like to go see the ocean again. I have only seen it once. We went to Florida when Clayton was about 5. I would like to go to Virginia Beach. That sounds like a fun place.

2008 was a good year. I am looking forward to 2009 and all the fun that comes with it. See ya next year!! (I love saying that.)

Saturday, December 27, 2008


I hope everyone had a Merry Christmas. We did. The kids opened presents in the morning. I even got one this year. Carl and I normally don't exchange presents because we never know what to get each other. I had gotten him a laptop when Wal-Mart had them real cheap a couple of months ago. It was supposed to be for Christmas but he saw it before I could hide it. He wanted to start learning how to use a computer and I didn't want him messing mine up so that's why I got him one. It's just a basic one but he can surf the net and that's all he wanted to do. Our anniversary is today - 22 years. So, for Christmas and our anniversary, he got me a ring. It is one I had looked at and wished for but never thought I would get it. He totally surprised me. It was great.

After opening presents, I started cooking. Our friends came over for Christmas dinner. We had turkey and all the trimmings. It was quite tasty. After we stuffed ourselves we sat down to play Buzz. It's a Playstation game and it's like a game show. It's pretty fun. While we were playing we noticed that Russ's top lip had started to swell. He said it felt like he was getting a fever blister. Not wanting to miss any fun, we kept playing. About 30 minutes later we noticed his bottom lip was swelling. That's when we got worried. Dianne called the nurse hotline and they said to take him to the ER. We were worried that his throat would swell shut. After two hours in the ER on Christmas night, two shots (which he was not too happy about), and prescriptions to take home, he's fine. They said it was an allergic reaction to something. I thought I might have poisoned him but since no one else got sick, I don't think it was me! It was pretty weird. He probably won't be coming to our house to eat anymore!

Here's a couple of pictures of the boys on Christmas morning. I didn't take too many pictures and, sadly, I didn't get one of Russ's plumped up lips!

Clayton got Guitar Hero World Tour which includes drums and a guitar and Sean got electronic drum sticks and a harmonica so it's been very musical (loud) around here the last couple of days. But, I wouldn't change it for anything.

Happy New Year!

Sunday, December 7, 2008

Where have I been?

Well, in case anyone has been wondering where I've been, I can now tell you.

I have been working on a special project that's near and dear to my heart. I worry about all the small animals in the wintertime and how they keep warm. Well, I have created a safe, warm haven for them this winter. Here's where several of them will be spending the next few months!!!!

Don't ask me how, but this is how I woke up looking yesterday. The weird thing is that when I sleep, I don't move. I sleep on my back and wake up in the same position I fall asleep in. My mom has always said I didn't move as a child and Carl says I don't move now. So, can someone please explain the above picture? I'm afraid I might be living a second life at night!

Monday, November 3, 2008

More Birthday Fun

Our family doesn't just have one birthday celebration. We always have one at home and then we have one at Grandma's. We went to Marion this weekend for Clayton's second party. It was just my family but it was fun. We got down there Friday evening which was Halloween. My mom's church had "Trunk or Treat". They take their cars to the church parking lot and decorate the trunks of them and hand out candy to the kids. It's a safe way of trick or treating. I had never seen it before and it was actually pretty cool. There were lots of cars and the people dressed up too. My nieces dressed up and so did I and we went to Trunk or Treat. Here are some pics.

On Saturday we had lunch and then Clayton got to open his presents. He is at the stage where he wants money so he got $50 and some boxers in a Guitar Hero tin. My dad had surgery a couple of weeks ago and had to have his hair cut and the nurse brought the hair back in a bag and gave it to my mom. No idea why they would have done that but since they did we thought it would be funny to wrap it up and give it to Clayton. He opened it and thought it was funny.

Some have said our family is weird. I wonder why! I tease Clayton about loving Sponge Bob. He watches the show but always says he doesn't really like him. It's kind of a running joke now so we got him a Sponge Bob cake.

After cake we wrote wishes on paper and attached them to balloons and went outside and let them go. I wonder where they went. I was hoping maybe they would have flown up to Springfield but we haven't found any yet!! Who knows where they could be.

Then it was time for some silly string fun. It was a fun weekend and I think the boys had a good time. Here's some more pics.

Funny faces in the car.

Sean & PawPaw.