What now?

It has been several months since my last post...sounds like I'm in confession...and I'm not even Catholic! :) Simon has been doing great! It was a rough road emotionally at first...but then it eased up as we got used to the idea of raising a child with a disability...if you can call it that...I rather like my new bumper sticker: My kid has more chromosomes than your kid!

So...in my memories of Simon's birth, here's what happened after that NICU Dr. bluntly told us about Simon's condition...

I looked at my husband, then my mom, then the Dr..."Yes. I know what that is..." my husband tells her. She says they will examine him closer in a little while, but his heart sounds healthy.

I've not even held him yet and you're telling me there's something wrong with my baby? But, I had ultrasounds. I even paid like two hundred bucks for that 3D ultrasound...they're mistaken. I'm only 31. We both have other children that are healthy...they're wrong.

She's mistaken.

What?

I finally took him in my arms and looked into those deep deep blue eyes...yes, slightly slanted, but that doesn't mean anything...all babies have funny shaped eyes right after birth...they've just been squeezed out! "Hi sweet boy! I'm your mama!" He's so warm and cozy in his blanket. I look at my mom with tears in my eyes...what do I do? What do I say?

"I want to call him Simon." We had decided on waiting to tell anyone the names...we picked out Simon Matthew or Matthew Simon. My husband wanted the first, I the later. Matthew means "gift from God," and Simon means "God is listening." We felt these names really spoke of us and our relationship and how we found each other...(that will be another blog....)

"Okay," my husband says. What next. What are we supposed to do...now what? "I don't want to tell anyone until we know for sure." My husband and mom agreed.

Everyone wanted to see him...we agreed that our children would be the first to see him...wow this is gonna be hard...hiding our emotions from everyone. Logan, Ben, and Samantha came in and we told him his name was Simon. My dad came in (my mom told him) and saw him. Then the rest of our family came in....The nurse showed up to take him for his bath and so I could get ready to go to my room.

I'm speechless. I don't know what to say. I don't know what to do...how to feel...how to react...It's that unconditional love you have for your child the minute they're born...but yet...there's something wrong...he's not the "perfect" baby you plan on...what will his future be? What will our kids say? What will our family say? Where will he go to school? Will I go back to work? How can we afford this? He will be made fun of! Oh my God...I can't do this...I want to hold him again!

Ok...so I stop myself from thinking any further than today...Let me get through today. Markus, my dad and Ben went to the nursery to see him. They came back and told me that they were doing a test on him. Ben said they were peeling those sticky things off his chest and he was screaming! My poor baby...wait....why were they doing that test!? I immediately told Markus to go see what was going on...

My room was pretty much full the whole day with family. They finally brought Simon back to my room. He's so sleepy. I unroll his blankets so I can look at him. I look at his hands, see the single crease...but I have the same in my left hand. Examine his eyes...yeah, there's these folds, but Markus said I have the same folds. His toes look just like mine, a wide space in between the first two...I think they're mistaken. Finally..everyone leaves so I can nurse.

The pediatrician on call comes in. "He looks great! No issues I see at all." "So he doesn't have Down syndrome?" I ask. "Oh yeah, I'm pretty sure he does...didn't you know that before?" "NO! the NICU doctor suspected it." "Oh, well, we'll run some tests, but his heart looks strong." She leaves.

What the heck?

I'm in tears again. Logan comes in. So I dry them and put on my "happy face."

The doctor comes back later in the evening to apologize. She said she assumed we knew about Simon's condition prior to his birth. We explained what happened after delivery, how the NICU doctor bluntly told us...we showed her all my features that match Simon's...looking for some hope in her eyes that they're wrong...all we see is pity...that "look" I'll never forget. Sad eyes...pity eyes...eyes I never want to see again...yet I cannot forget...

We agree to have the chromosome test on Saturday. The results will take about a week to get back. Dinner time, then everyone leaves. It's just me and Mark. We turn out most of the lights. Mark wants to read. I wish I had my laptop so I could do some research. I turn over so Mark can't see me and begin to cry. I totally lose it...he comes to the other side of the bed and holds me. He cries too. Wow...how do we get through this?