Sunday, August 29, 2010

I worked in Springfield, MO Saturday. Did you know I was born there? I left early in the day on Friday, which allowed time for a very special day. A day so special, I was giddy as I got into my rental car and set off for all I had planned.

First, lunch at Ruby Tuesday's with a cousin that I hadn't seen in 15 years! I could have sat at that table all day with her talking, listening, and sipping on iced tea. Now that we are in touch again, I am certain that we will continue our ongoing conversation of catching up and enjoying one another. She has been a real support and encouragement to me these last few months.

Next stop, to visit some dear friends of the family. It would take too long to share all the reasons they are so extraordinary. One child toughing it through multiple heart surgeries, another with Down Syndrome, an older sister that survived a terrible, terrible car accident, a house that burned to the ground, these are just a few adversities they have been through while continuing to be beautiful people that are a joy to be around. We moved away from Springfield when I was three years old, but visited this family a few times every year when we went to see my grandmother and the rest of our family there. My brother & I were always so excited to see them b/c we had such a blast at their house hanging out with the two youngest siblings, Matt & Dusty. They were so much fun. They fit the true definition of rough and tumble boys. One of my favorite memories is when Dusty, the lovable little guy with Down syndrome, didn't want us to go home. He locked himself in our car and was so pleased with himself! I think it took an hour before we finally convinced him to unlock the doors.

Dusty is now 30 years old. He has a job and is a very active guy with a lot to contribute to those around him. It was a pleasure to be reintroduced to someone I have such fond memories of. I was so pleased that his brother stopped by while I was there, too!

Favorite moment of the day...when "Dust" saw me standing in the kitchen talking with his mom and dove to the floor beside the island in the kitchen to hide from me.

After a few hours with them, I went to see my aunt and uncle, then went back to the hotel to set up for Saturday. I got a good night's sleep and had a fantastic Saturday. Oh, yeh, remember the older sister I mentioned earlier? Her best friend was at the seminar! Crazy!

I love my job for many reasons. Weekends like this is one of them. I had such a nice time, I am almost able to forget that I didn't get back into my own car until midnight, couldn't keep awake enough to drive the 2 hours home (so I spent the night in a crummy hotel) and drove home this morning just in time to have breakfast and get ready for church!

I love how these brothers pat one another on the back, put an arm on the other's shoulder, or hug every few minutes.

Love the expressions the twins had in this pic. They remind me of what their daddy was like at that age..

my cousin & her daughter (who, by the way, showed me her high school year book's senior superlatives page. Her classmate with DS was given the title "Best All-Around Person." How cool is that?)

Wednesday, August 25, 2010

I fall in love with this little guy more and more every day.

As adorable as these pictures are, they don't do him justice. His laugh reaches deep into my heart. Just what I needed to boost my spirits and adjust my attitude this week.

Sunday, August 22, 2010

ER copay: $75...prescription copay: $5...refreshments from hospital gift shop: $3.35, surviving Adam's first trip to the Emergency Room: priceless

Adam got up so early this morning that he was really tired by the time our worship service started. He had a hard time behaving himself, and we surely won the "most disruptive" award in church today. I was determined to make it a great day anyway, so even though it was fairly warm out, as soon as he woke up from his nap, I took Adam and Gretchen (our dog) outside to play catch. Not 5 minutes after we got outside. I tossed a tennis ball to Adam. Gretchen dove after it, and tore into Adam's cheek as she snatched the ball out of the air.

He didn't get stitches. A dog bite that gets closed is sure to become infected. He is on antibiotic to prevent infection, and thankfully they are both up to date on their shots. Hopefully it won't scar too badly.

He was a brave, brave boy and stole everyone's hearts at the hospital. A trip to Wendy's for a chicken nugget kid's meal was a great way for him to end his exciting day.

P.S. Levi was full of smiles today!

Wednesday, August 18, 2010

11:00 pm - feed Levi
11:30 pm - go to bed
12:30 am - Levi wakes up hungry (growth spurt, I'm assuming- he's done this for a couple days now)
2:00 am - Adam wakes up & wants me to sing to him. He falls right back to sleep.
4:00 am - Levi wakes up hungry
6:00 am - time to get up- Wes is getting ready for work, Adam is awake
6:15 am - Levi wakes up to eat, the dog is spitting up, & Adam wants breakfast
7:15 am - I forget everything else that has been happening because while changing his diaper, Levi looks up at me. I talk to him for awhile & he maintains eye contact the whole time. The look on his face says, "Everything's gonna be okay, Mommy."

Tuesday, August 17, 2010

Warning: Not such warm, fuzzy thoughts...
I cried for my sweet baby today. Haven't done that in a long, long while, and don't want to be doing so. I just had one of those moments that made it all real. The physical therapist was here, and when I bragged that he rolled over in his bed Sunday, rather than being impressed, she shrugged one of her shoulders and told me the bed has more give (like it was easier for him there). Then she wanted me to look over his paperwork, and I saw it in print...low muscle tone. I really had to fight back tears and think about something else (the crying came later in the day). It isn't like I don't know the child is going to have problems, but everyone else seems so impressed with his muscle tone, it hurt me to see that paperwork. I know the time is coming when the differences will be apparent and we will be working to catch him up on the skills he needs. I guess I just forgot he was different...and there will be so many days that I will forget that. Hopefully tomorrow will be another one.

I recently read an interview with the actor, John C. McGinley (He plays Dr. Cox on Scrubs). His son has Down Syndrome. He said that at first he wanted to know what he did wrong and wondered what he did to deserve a child with special needs. He said he was completely caught up in himself. Then he talked about his son's major health issues as an infant and said, "Every morning, you see this kid who doesn't really care about you and your issues--the kid needs help." That is when it all changed for him. I am still not there yet. I do wonder how I will handle it if Levi gets teased, how I will feel when he is in school, what I will need to provide for him as he grows. But it is not all about me... That is what I need to focus on today.

If he could just make eye contact with me and smile and act like he knew I was there. Right now I rarely get that. Sometimes I do and it is wonderful, but I was working so hard for that reinforcement this evening after Adam went to bed & Wes was working outside... no eye contact...that's when the tears fell.

Monday, August 16, 2010

Guitar Hero

Levi fell asleep in this position yesterday morning...Wes cracked me up by saying it looked like he was resting between sets.

I don't have much to write about today...or maybe I'd just rather be sleeping. I couldn't get any good pictures of Adam today, but here are a few of baby brother...

Tuesday, August 10, 2010

Almost every day for the past two weeks, I've thought to myself, "I should have walked today." So today we started the day with a nice walk. Gretchen (the dog) came along, too and did very well. I was afraid she'd be too much when alongside a double jogging stroller, but it was a pleasant experience (besides the heat), and I think it will be a habit worth starting.

Today was one of those days that reminded me how blessed I am to have such a great balance between home life and work. I love my job and appreciate so much that it allows me to be home all but a few days a month. I am able to be a professional, enjoy travel, room service, and time alone (while contributing to our household financially). Yet I am also able to be a full-time mommy and wife all but a few days a month.

Today was one of those days I used to dream about...bringing the kids to eat lunch with Wes at work and lots of tender little moments like this one, watching my boys learn & discover their world...

Yesterday Connie (my mother-in-law) & I took Adam & Levi to see their great-grandparents. We had a nice visit and saw Wes' cousin & family before heading home.

Here's Levi with his great-grandma:

Adam with his great-aunt Loretta (just after eating some Cheetos) :

Adam & Levi with great-grandma and grandpa:

And some playtime with Maddox:

Sunday, August 8, 2010

I have two batteries for my camera & try to always have one fully charged. Of course today was the only time I can ever remember that both of those batteries were dead at the same time. And of course the boys were dressed in matching outfits. And of course they both looked as sweet as could be sitting by each other in the recliner as I finished getting the diaper bag packed for church. And of course I forgot all about taking their picture later in the day when the batteries were charged. Oh well.

Big strides for both boys today. Adam "read" Hop on Pop by Dr. Seuss tonight! He knew most of the words on each page he turned to. Sooooooo cool! Yes, I know he is looking at the pictures for clues and has it memorized, but that's what emergent reaing is all about!!

And as I baby talked to Levi tonight, he made serious eye contact and was really listening to me! I've been waiting for that moment to arrive. He's getting a pretty good grip, too.

Have I ever mentioned that I love being a mama?

Friday, August 6, 2010

I've been thinking today that I didn't explain what bugged me so much about that man's comment about the high divorce rate for people with special needs kids. I am tired of the statistics. That's what it is. We are the 1 in 800 people with a child that has Down Syndrome. He is in the 50% that (thank you, Lord) don't have heart defects. One in 95 children with Down Syndrome get leukemia. Half have hearing and vision problems. He is at a higher risk for obesity, thyroid problems, & respiratory problems. He is likely to have a weak immune system, which puts him at risk for all kinds of things. And as if these children don't already have enough against them, their parents are more likely to divorce, too? I am just tired of all the "increased likelihoods" I hear about. That's all.

Here are my sweeties ready for nite-nite...

This caught my eye yesterday after Adam & I came in from playing outside...(Sigh)

Thursday, August 5, 2010

Recipe for a rough day at our house...a grumpy toddler, a hungry & gassy baby, a tired mama, and a daddy who put in over 14 hours at work (open house). Now the sun is down. The only light on in the house is a bedside lamp, and it is very, very quiet. I love the quiet at night that makes everything all better. I love "recharging" at the end of the day...getting the last few stray toys put in their proper place, starting the dishwasher so everything is clean in the morning, and winding down before Levi's last feeding and some long awaited shut-eye.

I keep thinking about something that I better just write about so I can put it to rest in my mind.

Last Saturday, a temp who worked the sales table at my seminar told me about his daughter, who had Rhett Syndrome. She passed away at age 15, about 6 years ago. He was very kind and open. I enjoyed our conversations throughout the day, but he said something that really burned me up..."I am just warning you that 85% of couples with special needs kids get divorced." As he went on, I realized he was only trying to tell me that I need to make time for my hubby and not get overly wrapped up in Levi's needs. He & his wife divorced, and it seemed like he felt very neglected after the daughter was born. Still, I was thinking, "Dude, if you knew anyone who has met us, you'd realize that you don't need to have this conversation with me because it isn't an issue." It just really bugged me. His intentions were good, and whether a child has special needs or not, parents need to remember to make time for each other.

Wednesday, August 4, 2010

I had a FABULOUS lunch today with two new friends that mean a lot to me. We were at the Olive Garden from 12 noon til after 3pm!! If we'd stayed another hour or two, we could have ordered dinner there, too!!

I had been looking forward to that lunch date so much and for so long. Just me and the open road on a 45 minute ride to Lexington. No diapers to change, no one to worry about but myself. So I was really surprised at how lost I felt when I got into a kid-free car. I love being a mommy! I knew I would, but it is much better...than I'd dreamed.

So many deep thoughts keep running through this busy mind of mine. I feel so at peace with Levi's diagnosis right now. Especially since...for the moment...he is right where he is supposed to be developmentally. The problem is that I sometimes trick myself into thinking that things will stay that way. It isn't that I don't have high hopes and expectations, but a big part of Down Syndrome is developmental delays. The two go hand-in-hand. The good news is that he WILL reach his milestones, I don't have any doubts about that. It will just take him longer to get there.

We are in this little window of time where Levi is right on track. I know that in a few months, it all will change. I am scared. I want to handle it with poise. I want to be strong and proud. I want to feel ready for the next step.

Tuesday, August 3, 2010

Here is Levi looking up at his big brother with a little grin.

Wes has been spending all his extra time getting the wood siding on the house scraped, sanded, and repainted. It (like most home improvement projects) has turned out to be a much bigger job than anticipated.

We are so thankful for the time others have given to help us out. Hopefully it won't be much longer. Grams & Grandpa worked very hard yesterday. Adam entertained us while we worked by blowing his train whistle and wearing Grandpa's hat.

The ice cream truck came by last night just as Adam was getting ready to go to bed. Wes & I were excited to let Adam experience this fun event for the first time.

Unfortunately, he only ate one bite. He didn't like it!

I guess I should see that as a good thing!

Sunday, August 1, 2010

Levi took his first big road trip this weekend! I did a seminar in Greenville, SC. Meredith and Bri came along and took care of him while I spoke. Of course, he made an appearance at the seminar during our first break, and everyone was delighted to see him! He was a great little travelin' man...just chilled in his car seat and slept most of the trip. He is a delight to be around.

Adam stayed with his grandparents Friday and Saturday night, and just in case anyone is wondering if it is hard for him to spend the night away from home, this is Adam's response when I sadly tell him I'll miss him...