A Celebration of Milestones

This week has been a real special week for me and Hendrick! He has achieved some milestones, as have I.

1. Smiling -- Hendrick is just starting to smile. It's a small smile, but it's there, and it is amazing to watch. I had started to wonder if he would, given that other "typical" babies his age have been smiling for a while now, but I must learn to stop comparing him to others and celebrate the joy that HE is. So, smile away, little boy.

2. Holding head up -- Yes, he's getting better about tummy time and lifting his head up. He rolls over from his stomach to his back, and his sisters cheer him on every time he does.

3. Standing up for myself -- I avoid confrontations in difficult situations, but this week I stood my ground against a person who was acting unreasonably. While it was hard -- and even harder to offer that person forgiveness, which I did -- it was a big step for me to calmly and firmly state my case.

4. Networking -- I attended my first meeting of the Down Syndrome Association of Greater Richmond. http://www.dsagr.com/ What a wonderful collection of families! I felt completely at home, even though I was nervous about going into a new situation. I was thrilled by the normalcy of it all -- we all have families, we all have a child with Down Syndrome, and we all eat pizza and talk about our kids. Hopefully next month our whole family can attend and get plugged in to this very welcoming network.

What a joyful week! Every day brings something new in parenting three children five and under, and I am glad to have weeks like this when I can smile and share the blessings with others!

About those first posts

I appreciate everyone who reads this blog! I am still learning about blogging, and especially about how what I mean to write and what comes across may be two different things. So please know that while I did want to "vent" a bit, I also was in a more pondering, introspective place when doing so, rather than feeling angry.

I hope that my posts in the future can show a variety of feelings -- like the next post I will write!

Thanks,
G

Why Do You Say That?

"He doesn't look like he has Down Syndrome."

I've received this comment several times in the past weeks since Hendrick's birth and diagnosis. Often, the comments come from people who know our situation but are acquaintances -- the cleaning lady, a mom in my daughter's class, a person from our previous church whom I don't see often, etc.

What I can't figure out is this: What are these people trying to say, and why are they even saying it? Just because he doesn't look like he has Down Syndrome (DS), does that negate his condition? Are they trying to make me feel better, as if "not looking like" DS is better? To be fair, I'm sure these people don't know what to say and are trying to be kind. But it puts me in a strange position. What, then, do I say?

Just once, I'd love to sarcastically say, "Well, Hallelujah! He doesn't have Down Syndrome, because you think he doesn't!" Mean spirited, I know. But this "he doesn't look like DS" comment makes me feel awkward and puts me in the position of having to interpret, comfort, and educate, perhaps at a time when I just want to be a mom, not a parent of a child whom others label.

The first time I heard this, I didn't know what to say. I think something along the lines of "Well..." and awkward silence. Now, I tend to say something like, "He looks a lot like Emily did when she was born." Definitely true, and this response certainly reinforces the "normalcy" of this child and all of his siblings.

But maybe I need to ask the questioner why he/she is asking. I'm glad that they are looking at my son, but what's wrong with looking like he has Down Syndrome? Maybe the next time I should say, "Yes, he does have DS, and doesn't he look great?"

Blessed Risks

I am very blessed. I have an amazing husband who has a good job and who treats me like a queen. I have two beautiful girls, Belle and Emily, one by adoption and one by birth. And now I have a son, Hendrick.

My pregnancy with my son was challenging, both physically -- due to severe morning sickness -- and emotionally due to the roller coaster of medical testing. When I was thirteen weeks into my pregnancy, my husband and I met with a perinatologist for genetic testing due to my "advanced maternal age" of 38. The ultrasound and blood work showed a 1 in 9 chance of having a child with Down Syndrome. Repeated testing at 16 weeks and an ultrasound at 18 weeks raised that risk to a 1 in 2 chance. Then, a further ultrasound at 22 weeks showed a strong heart and facial features not in common with Down Syndrome. What to do? I declined an amnio, due to the risk of miscarriage and because his condition, whether Downs or not, wasn't worth losing the baby. He's my son, not a risk.

At 35 weeks, another ultrasound showed that Hendrick had slowed down significantly in growth, and I was placed on hospital bed rest. A week later, my beautiful boy was delivered via C-section weighing in the 5 pound range and breathing on his own. Minutes after his birth, while he was peeing all over the nurses and crying, a labor nurse came to me and said, "He looks perfect." She went on to say that he didn't look like he had Down Syndrome. I knew she meant it as a comfort, but I didn't understand why she felt she needed to say that. Didn't she know I would love him no matter what.

He does have Down Syndrome (DS), as we learned later that day. But, in my mind, he is still perfect. He has an extra 21st chromosome in every cell, perfectly aligned. He has cute little ears, and darling toes, with an extra space after his big toe just like many children with DS.

And he has the most beautiful eyes. Many people tell me how cute he looks, how blue his eyes are. Little Almond Eyes.

I can't imagine life will always be easy raising a child with special needs. Raising any child has its amazing moments and times of utter exhaustion and frustration. But right now, Hendrick is a baby like any other, and I'm so glad I have him.