Wednesday, September 29, 2010

I am so excited about the Buddy Walk that I think I could explode if I let myself think on it too long. I got out of bed to blog about it b/c even after this long, crazy, busy day, I can't fall asleep. Our T-shirts came in today & they are SO stylin'. I absolutely love them and would wear mine tomorrow if I wouldn't have to wash it again for Saturday!

I am amazed at how many people are pulling together for this little boy and his extra chromosome. I wondered if we should even sign up for this year's Buddy Walk, thinking that we wouldn't be able to contribute much so early on. When we signed up I was still getting a grip on this new world of mine. Now I wanna scream, "Go big or go home! Bring it on! Buddy Walk, here we come!" It all parallels the way I have progressed in my feelings about raising Levi. I went from feeling insecure and worried about the opinions of others to feeling like I can rock this thing out. I am ready to take on and beat those challenges that will come our way. My fists are up. My gloves are on, and I am ready to push through the tough stuff and work for this kid. And I know I can do it. I have an awesome man on my side which is a big deal to me, and a key element in being able to feel like I do. Love ya, hubby!

Tuesday, September 28, 2010

Adam enjoyed Levi's physical therapy session as much as Levi did today! The therapist brought something special just for Adam to play with...

And Levi rocked the house! He is getting so strong!

The Buddy Walk is this Saturday, and I am pumped! I hope it is great fun for everyone! Lots of pics to come.

Tuesday, September 21, 2010

An interesting article in the New York Times about Down syndrome...
I still can't get the hyperlink to work on the blog, but you can cut and paste it into your address bar. I read this on someone else's blog & thought it was interesting.

Monday, September 20, 2010

Written 9-17-10
I had an interesting day. I'm out of town doing a 2 day staff development training for an elementary school out of town. Yesterday, during dismissal, I asked a teacher if they had any students with DS. As I was asking more questions, she pointed “Jay” (I’m not using his real name) out as he was being escorted thru the building to catch his ride home. As I saw him awkwardly lifting his floppy ankles and holding on tight to the teacher that walked in front of him, my heart sank. He was thin and looked like I imagine Levi looking when he is that age. I wondered how much help my little guy will need in the future. I fought back tears as I walked out to my rental car.

This morning, my first stop was Jay’s classroom. I asked the teacher, “Can he read? What are his parent’s like? Do they push him to work hard? Does he go into the other classes with the other kids his age? What kind of therapies does he get and for how long?”

The parents baby him, and always ask this teacher if the work she is giving him is too hard. His last teacher (at another school) told the parents he wouldn’t be able to read, so no one bothered to try. But the teacher I was talking to taught him how to read last year, and the parents like her so much, they kept him with her another year, even though he should be in a 4th grade self-contained room.

Why self-contained? I don’t know. I don’t think could’ve calmly had that conversation or asked about it without sounding mad, so I didn’t ask. (Remember it is first thing in the morning & I am about to do a 5 hour training for these people- I need them to like me).

He only gets 50 minutes a week of therapy. He has done so well, he doesn’t need as much as he used to. So here is something to think about…Is he doing so well because of the therapy he was getting? And if so, shouldn’t it be continued? What is wrong with being proactive? Is this a money issue? Are the parents making up for the lack of in-school therapy by doing things with him at home?

I went to Jay’s desk to say hello. He stuck out his hand to shake and told me his name. Such a sweet boy. Then I realized I needed to get to the library to get ready for my presentation. We were doing a Bully-free inservice, but, boy, did I wish we were doing an inclusion inservice!

At lunchtime, I went to the cafeteria because I was told the special ed kids eat with everyone else. Well, they were in the same room, but they were NOT sitting with the other children. There was even a row of empty tables between these kids and the others. Grrrr…

Anyway, what was reinforced to me is what I’ve been reading about the past few days (and yesterday’s conversations with another mama)…parents have a HUGE influence on what their child with DS achieves. I recently read about a young man with DS that has is driver’s license. How big is that?!?!?

SOOO…after lunch, when I gave the teachers an activity to do, this teacher sitting near me says he has a question. He asked, “How did you find out your baby had Down syndrome?” After I went through our crazy experience during Levi’s first week, he said, “Well, I heard you say that you didn’t get the prenatal testing b/c it didn’t matter to you, but my wife has “that trait,” and it does matter to us. I thought, WHAT?!?!? Why would you tell me that? You think my kid isn’t good enough to live?” I stopped talking to him, stood up, and said to the teachers, “Okay, back to page 95 in your workbooks” and started right back to the seminar. I did not want to talk to him anymore.

After I dismissed for the day, I thought I needed to be fair, and was dying of curiosity, so I asked him, “What did you mean about your wife’s “trait” and it mattering to you? His eyes immediately turned red & watery , and he told me about his daughter born at 24 weeks. She did not make it. She had DS. They were told they had a high risk of having another child with it, but have since had a girl, then a boy, neither of which have DS (I always abbreviate that to save time, by the way). They did the prenatal testing for both of these children and knew ahead of time that they did not have “the trait” (as he referred to it- he never would say the dreaded words Down syndrome). He said it didn’t matter to his wife and she still would’ve wanted the child, but he didn’t think he could handle it. They were told if the boy had it, it would be very severe. I have no idea how a doctor could tell that, but this man said it would’ve been so bad the child would need to be institutionalized. I thought, man, I need to educate this guy! Is he in the dark ages? We had a really good talk about the first part of this post (parents making the difference), and I told him I didn’t see any reason for ANY child with DS to be institutionalized…EVER. I still can’t believe I had to have that conversation with someone living in 2010!

Which leads me to another story…I was searching online the other day for IQ ranges for DS (just curious and wondering how much influence we can have over that) and stumbled on to someone’s blog. Her opinion is that if a woman finds out her child will have Down syndrome, she should not get any help from the government to pay for the child’s therapies or other special needs. It is her fault for bringing the child into the world and she should pay for it. I am wording this very nicely compared to the blog, and the people that commented had even more hateful things to say. Basically they think everyone should get the screening and should terminate if they find out their child will have DS. Many made comments implying that any person with a low IQ is worthless. It was unreal. My conclusion is that those people are the ones with intelligence problems! They have no intelligence for compassion, and people like that are the ones the world needs less of. I wish I could shelter my sweet Levi from people like that and pray that he never encounters that kind of hate.

Sunday, September 19, 2010

Levi was all dressed up for church this morning. This is one of his Uncle Ben's hats (Mom made it when he was a baby). Not to be outdone, Adam decided he needed a hat, too. Neither ended up wearing them after this little "photo shoot." Levi's wouldn't stay put, and Adam found other things to play with.

Saturday, September 18, 2010

A New Nephew!!!

We just got home from seeing my new nephew, Tyler. We got to watch his proud mommy & daddy pull into the driveway and take him home for the first time. He is absolutely gorgeous, and he's such a good baby!!

Earlier in the day, we took Adam to a fun-filled birthday party. This morning, I told him we were going to the party after his nap. The next thing I knew he was in his bed (at 9:30am)!!! He slept for an hour an a half and was DEVASTATED that we weren't leaving immediately. I mean to the point of crying so hard he almost threw up. I thought it would be nice for him to brush his teeth and get out of his PJ's before we left, but he had other plans. He had a wonderful time...The poor kid just couldn't get there fast enough!

Levi's Fancy Pants (AKA Hip Helpers)

The physical therapist gave Levi these "Hip Helpers" ( to help keep his hip joints straight. He just needs matching sweatbands, some 1980's high top sneakers, and he's all set!

Thursday, September 16, 2010

So at 10:30pm, I arrive at my hotel last night, VERY anxious to use my breast pump after a long day of travel. I soon realize that I am missing a vital part of the pump! I left two of these teeny tiny pieces of plastic on the kitchen counter top after sanitizing them the other day. They are about the size of my fingertip. The pump doesn't work without them!

I immediately started to think about the possibilities of not being able to pump for the 2 1/2 days I will be gone. I wondered what I would do if my milk supply got so low that I couldn't nurse Levi anymore. Obviously, no stores that would carry this part are going to be open at 10:30 at night. Wes had a good idea, & I called the local hospital (I thought maybe I could rent a pump for a couple days)...I only got a number to a place that opened at 9am the next day.

Finally I bit the bullet and called the principal who invited me to train his teachers. Thankfully, I've been here 3 times before and know everyone pretty well! I told him I needed the number of a mother with small children & explained my predicament. He said, "You are a character!" and called his assistant principal. (He told me this morning that he had dozed off watching TV and thought he was dreaming when I called) After many phone calls back and forth, she showed up at my hotel a little after 11pm with the parts I needed. She climbed up into her attic, found her breast pump from 6 years ago and had these extra pieces, still in the plastic packaging!!

The funniest part of the whole ordeal was this text message from the principal... "You have obviously learned our school's theme to 'Never Give Up, Never Quit, & Never Settle!'"

The interesting thing to me is that I never got worked up over it. I kept thinking in my mind, "There will be a solution to this." I didn't feel my heart race and never panicked. And this is something that could have had a really terrible outcome! I used to get really anxious, even about running late. Over the past few months, I have learned that (with God's help) I can handle things I didn't know I could handle. I like this new quality that Levi has brought to me.

Buddy Walk

We are currently in first place for the Buddy Walk!! $2,661 raised so far! If you haven't signed up to walk and are planning to be there, please sign up soon. It is just around the corner. If you can't make it, please consider making a donation to help our team make a difference. I am still not having any luck getting my blog to create a link, but you can cut and paste the address below...

Sunday, September 12, 2010

Happy Birthday, Adam!

I can hardly believe it has been two years since we first saw his face. Happy Birthday, Adam!

I wanted you in my life long before you were born, and you have made motherhood even better than I expected it to be! You are awesome, and watching you learn and grow is one of my greatest joys. (Adam at 5 months, below)

The cake I baked looked good for about 10 minutes, then the red icing started dripping down the sides. Oh well! It tasted good!

I mixed the cake before church this morning, and he loved licking the beaters. He kept saying, "Adam want more of that."

Thursday, September 9, 2010

Just some random-ness before I go to bed...

How stinkin' cute is this?!?!

I had the camera on the wrong setting, so it is a little blurry, but I'm so happy to have captured this sweet moment before Adam started smiling, turning his head, and saying, "Cheese...cheese" for the camera.

Oh, I should have already gone to bed, but sweet little Levi is resting like a sack of flour on my shoulder. I'm not ready to let go of him. It's hard to believe just a few months ago, I was afraid of him. Now I can't imagine life without him.

Wednesday, September 8, 2010

Here's an intriguing article I want to share. I kept thinking I'd post it with some deep thoughts about my reaction to it, but every time I read it, I don't know what to say. I couldn't get the link button to work, so here is the article in it's entirety...(taken from

Will The Down syndrome Children Disappear?

This is the incredibly provocative question asked by a Children's Hospital Boston researcher in a recent article published in Archives of Disease in Childhood.

Given the new prenatal tests available to mothers, the author, Brian Skotko, asks, are we entering an era where slowly Down Syndrome babies will begin to be born in dwindling numbers? And is this, he asks something that we as a society would even want to happen?

As covered in the Washington Post, Skotko provides some interesting data: "in the USA, there would have been a 34% increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15% fewer babies born [with DS], representing a 49% decrease between the expected and observed rates."

This difference between what is expected and observed is not likely to change, but only increase when some 92% of women who know their fetus has Down syndrome choose abortion. And as testing becomes more sophisticated and more reliable, this number may increase as more women know even sooner and may choose this option given more time to choose it.

But what will our society lose if all the Down syndrome children disappear? There will certainly be a thread of our humanity that would be lost. Moreover, I doubt that there will ever be a time when Down syndrome is ever completely gone from our population. 100% of women will never terminate their Down syndrome pregnancies--nor should they. Their is a richness and fullness that raising a handicapped child brings to parents' lives and for some parents that is what they wish to have.

So will the Down syndrome children disappear? No. But will they dwindle in number? Yes, due to advances in prenatal screening and genetics and parental choice. And yes, we will lose something for having fewer Down syndrome children and adults among us.

Summer Johnson, PhD

Okay, I do have one thing to say...We didn't even want the genetic testing done. We wouldn't have ended Levi's life if we had known. And it is NOT because we wanted the "richness and fullness raising a handicapped child brings." His life is of great value. So many other thoughts are spinning in my mind, but I keep deleting sentence after sentence because none of it is coming out right. This article has been weighing on my heart for weeks.

Tuesday, September 7, 2010

After Adam's nap, we had a great time playing outside with his huge blocks. I got them when a day care nearby went out of business. Today was the first day I think we've ever played with them. I built things, and he knocked them down, immediately asking for another one. I didn't notice his bedhead hair until looking at these pictures on the computer!

Saturday, September 4, 2010

Today was a great day with great friends and great weather! We played at the playground, blew bubbles, went to the apple orchard, and topped the night off with some Twinkie Cake!! And with a high of 74 degrees, what more could we ask for on a Saturday with some of our favorite out of town guests?