He's not the only one!

Shawn and I decided to join a nearby gym (nothing like deciding to finally exercise while pregnant). As we were touring, we dropped the kids off in the babysitting area. When I scanned the room, I was so excited to see another little boy about Eon's age with Down syndrome. He was so cute! I asked the attendant about him and she said she thinks he's the youngest of four and that he's 18 mos.

Later, when we picked the kids up, she told me that she pointed me out to the mom who didn't want to interrupt when we were signing up. I hope she sees me there, again, and "makes contact". :) I still think we need a secret handshake or something. Ellie told me that when she put Eon down, he crawled right over to him and they played together.

I know it's silly to get so excited over a chance encounter, but I just never see kids his age with Ds unless we are at a Ds event. It was a momentous occasion. :) I think the attendant was as excited about it as I was.

At least with Down syndrome...

As this blog is primarily about our life with Simeon, I don't talk much about our other kids. But it's another kid of mine that prompted this post. Ben is 4 (will be 5 in August). He is tall and lanky with sandy colored hair and a dimple in his left cheek. He is my sweet, first born son. The first time he brought me a bouquet of dandelions, I thought my heart would melt right there. I am forever blessed to be his mom.

Ben is also my most challenging child. His was my most difficult birth, most difficult postpartum period (complete with postpartum depression), most difficult nursing relationship, etc., so it makes sense that he is my most difficult child. There is some trauma in his history and I am certain that many of his behaviors stem from that.

He has mild speech apraxia, some sensory issues, some vague learning issues, and who knows what else. We have an appointment with a psychologist in July to try to identify his issues and get the help we need. In the meantime, he has outbursts...moments of rage in which he seems to lose all control. He screams, kicks, throws things, bites, pinches, etc. It is exhausting for both of us and I am at a loss as to how to help him. Some days, I parent him with love, grace, and understanding; some days, with impatience, frustration, and anger. Typical parenting doesn't work for him.


I find it so ironic that mothers are devastated to get the diagnosis of Down syndrome for their baby, when I've found that typically chromosomed kids can be so much more challenging. It makes me so much more aware of the benefits of a Down syndrome diagnosis:

• At least with Down syndrome, we have an entire community to ask questions of. Someone in my network somewhere will have advice for me when a new situation with Eon pops up.
• At least with Down syndrome, we get an inkling of some of the challenges we may face at or before birth.
• At least with Down syndrome, people visually recognize that this is a child with special needs. When your typical looking child has a meltdown in the store, people blame you and your poor parenting. (If you happen to have a lot of children, they may blame that, too.)
• At least with Down syndrome, there is the knowledge that this child is this way by design and not some failure on your part.

As with all of our children, I am grateful that I can rely on the wisdom of God in parenting Ben. He is a handful, but he is worth it.

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.

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 chromosome...an 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? :)

MIA

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.

SURPRISE!

Shortly after Eon was born, I discovered Reece's Rainbow and it became my passion to see those precious children with Down syndrome rescued from almost certain death. It was my hope that, one day, we would join the amazing families that are bringing them home, and adopt one of our own. We were moving to that end. I felt as if both the passion and the desire were from God. I was excited that we would finally do something "big" for Him.

So, imagine my surprise when I discovered I was pregnant. "This cannot be happening," I thought. We had the perfect, albeit large, package - three bio girls and three bio boys. The tie-breaker was supposed to be a chosen, adopted child. Honestly, six seems nice and compact to me. Seven just seems Duggar-kind of crazy! I sobbed the entire day after seeing the pink line. This was not the plan!

I wallowed in misery and disbelief for days. I'm not a big fan of pregnancy. For the previous seven months, I had not been pregnant or nursing for the first time in almost seven years. I discovered that I like myself without all those swirling hormones. So certain was I that we were finished with infancy, I discarded all things infant-related.

I remember telling a friend, "It is so hard for me when I'm all set to zig and God says, 'Zag'."

A few weeks ago at church our pastor was talking about following Jesus. He said that we need to learn to follow Jesus before we can truly serve Him....that sometimes we jump in and start serving God, and that it's possible to do that without actually following Jesus.

And then it hit me: I was irritated with God for interrupting my plans to serve Him.

I realized that I had a decision to make. I could either continue in my misery and believe the lie that this pregnancy was a mistake. OR I could choose to follow Jesus. I could believe the truth that this child was chosen by God, that his/her days were planned at the creation of the world, and that he/she is a blessing.

I chose the latter, and He's slowly changing my heart.

Someday, maybe we will adopt. But for now, we are rejoicing in new life, swallowing our pride, and looking Duggar-kind of crazy. :)

EDD: 11/13/10