Sunday, May 30, 2010

The teenie-weenie

Just a warning, but this post contains way too much information. I'm hoping some of you other moms of boys with Ds can help me. My little guy has a teenie-weenie turtle penis. It is small and constantly hidden by a fat pad in his groin. I'm concerned that when we eventually start potty training, it is going to be a big problem. Plus, it's kind of awkward that it doesn't resemble his brothers. They, at 4 and 3, are totally into all things gross and private and have taken note that Eon's is just not right.

I have repeatedly asked our beloved pediatrician about it and he basically blows me off every time. (I love the man, but he has a stubborn streak.) Does anyone have any experience with this? Which doctor should I address this with? He has an appointment at the Ds clinic in July and an appointment with his endocrinologist in the fall.

Thursday, May 20, 2010

The well-meaning comment

At only 15 mos., Eon has yet to face ridicule or discrimination because of Down syndrome. I don't doubt those moments will come, but I try not to dwell on them. I do know other moms have had to put up with negativity and insensitive comments related to their little one's diagnosis, but we have escaped relatively unscathed.

Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.

What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.

Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?

Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)

Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)

Monday, May 10, 2010


I have been MIA in bloggy land for the last several weeks. It's probably hard to imagine since I have birthed six children, but I am not a fan of pregnancy. Those early weeks are difficult on everyone in the family. So, I have spent much of my time away hugging the toilet and fighting off the frequent migraines that accompany this blessed condition. I wish, at 13 weeks, I could assure you that I am well past that, but I can't. I keep thinking I should be feeling better and I am, but still not great.

I was truly spoiled in my pregnancy with Eon. I felt great the whole time. After going overdue with all of his siblings, I was amazed and blessed when he even gave me the gift of showing up a week early. He's such a great kid! :)

Speaking of Eon, one of my biggest fears for him is that he will be nonverbal. It is really important to me that he become an effective communicator. Probably because this family is full of gabbers and I want him to fit in, I'm worried that speech will never come for him. His oldest brother, Ben, has mild speech apraxia and two of his other siblings also needed EI for speech therapy, so it's kind of at the front of my brain. His speech therapist remains unconcerned and I wish I could adopt her attitude.

Because of that, whenever he learns a new sign, I am thrilled! But, right now, I am even more thrilled because, at 15 mos., he has added two spoken words to his "momma" and "dada" repertoire! He started signing "dog" a while ago and then started saying, "goggie" with it a few weeks ago. His newest addition is "book" which sounds more like "ook". He is very consistent with both of them. Earlier, he was out of my line of sight, but I heard him repeating "ook, ook" and I knew he must be looking at one. Sure enough, he had found his sister's book of sea creatures.

I know he will be behind in language development, but it gives me hope that one day, we will have meaningful conversations with this kid!

In other news, we should be receiving his SMOs early next week. The PT is confident that he will be walking behind a push toy shortly. I'm unconvinced, but we'll see. He is starting to cruise around furniture, but it's a little awkward and slow. He's also starting to let go after pulling up to stand and pause in midair before crashing to his diapered bottom. Makes me cringe, but he thinks it's great fun.

We have taught him to rely on a bedtime routine that is just ridiculous and it's beyond time to teach him to fall asleep in his crib, but I don't have the stomach for it. Isn't that sad? Any words of wisdom or encouragement on that front would be greatly appreciated.

Now, it's time to sign off here so I can spend some time catching up on the many blogs/lives I have been neglecting in my hiatus.