Our gift...

Markus took off a week to stay home with me and Simon. He went back to work on a Monday. We were told we would get the chromosomal test on that Wednesday. However, the phone rang about an hour after he left. It was the doctor. "The test results are back...and they're positive for Down Syndrome..." I didn't know what to say. He apoligizes and gives me some numbers for First Steps, a program for infants and toddlers with special needs. I jotted it down and politely ended the call. Then I broke down as I'm holding my sweet sweet boy, saying profusely, "I'm so sorry...I'm so sorry...I'm so sorry..." I felt so guilty, like I somehow had something to do with this. That I didn't do something right for the cells to divide properly. If I had taken better vitamins before we conceived, was in better health, maybe lost some weight prior to getting pregnant... I knew deep down that none of these things would've made a difference, but I kept looking for justificaiton. Statistically it is usually the mother's cells that don't divide evenly. So naturally I was blaming myself. I also felt like I should've known. I grew him for heaven's sake...how could I not know!

I called Markus and he came home. We spent the day just being together...not talking much...I finally feel like I can do some research. I sent out an email to my friends and family with the news of his birth: weight, height, fingers, toes, and an extra chromosome. Their replies are all encouraging, none of that pity crap. Thank heavens!

In my research I found the National Down Synrome Society, and the National Down Syndrome Congress. The NDSS put me in contact with our local chapter, the Down Syndrome Group of the Ozarks. I talked to a lady from there on the phone and was very encouraged. The more people I talked to on the phone, the more comfortable I got saying, "I have a son that was born with Down Syndrome (last week) what do I need to know at this point?" They ALL immediately said "Congratulations on your new baby!" Their attitudes were very encouraging and upbeat. They said to just enjoy him and treat him like I did my other children. They recommended books (which I bought all of them!) and different websites for support.

It was that week after the doctor called that I lost it for the last time. I was having a difficult time one night (which was when my post partum tended to kick in...) and was laying with my husband going to sleep. We were talking and I was saying how I felt it was unfair for Simon to have this disability...why us? And what my husband said...stopped me in my tracks...so to speak...

"But Simon was up in heaven, waiting to be placed with a family, he would've gone to someone...anyone...God just chose us."

That right there hit me so hard..."No way! He's OUR baby!" From that moment on...I've not cried, not had a pity thought, not felt bad or ashamed, only joy that WE were given this gift. I realized that he isn't a disability, he isn't ashamed of himself, he's doesn't think he's any different...why should I think he is? He smiles at me, recognizes me, chatters at me, takes a bottle, messes his pants, sneezes, cooes, and looks at me with these amazingly ocean blue eyes. I can't wait to watch him grow and succeed in everything he sets his mind to. He find things more challenging than his non-chromosomally enhanced friends...but he is our gift from God...our "little Japanese buddy," as my husband affectionately calls him.

On the fence...

We wake up...my eyes are very swollen and red. They brought us Simon during the night...but he's too tired to nurse. They bring him again in the morning...he nurses a little..but still very sleepy.

The Pediatrician comes back and gives us the consent form for the test and his circumcision. She explains the chromosomal test is a pretty big stick in his heel so they'll give him some sugar water to drink while they're doing the test to help him relax. We have lots of visitors again.

One thing is for sure, I certainly feel better as far as the nausea goes. Wow...9 months of throwing up just about every day, then poof, he's out and I'm cured! Bring on the food. The nice thing about our hospital is it's sort of like room service...I get a menu and can order pretty much whatever I want. :) My cousins brought me one of those edible arrangements! OMG!!

Markus' boss and his wife come to visit and bring us a great gift. The story of them picking out the gift makes us laugh, which feels good...to laugh...We had originally registered for your basic baby monitor. When we were looking at them at Target, Markus, of course wanted the video one, the two hundred dollar one! I responded with: "No one is going to buy that! It's two hundred bucks! You're crazy..." So we went with the basic Graco one. Well, low and behold, I opened the gift and there was the expensive video monitor. So the story goes, while they were looking at our registry, his wife finds the Graco one, his boss fins the video one. She says, "Well they registered for that one..." He says: "yeah, well I know Markus wants that one!" and takes it off the shelf...he was right. It's awesome! (and worth every penny!)

Markus takes a walk with them (my room is full of people) and I wonder if he's going to tell them. I visit with our other guests. They come back later and I can tell by the way his boss' wife is looking at me and hugs me that they know. It's nice to have someone else know though.

My best friend finally comes Saturday night. I go through the delivery and open her gift. We chat for awhile. Then I get quiet and ask Mark if I can tell her what's going on. I, of course, lose it and start balling. She hugs me and tells me everything will be fine...That God picked the perfect parents for this little guy. I tell her I think He must have more faith in me than I do.

We sleep better that night. Simon is brought in but won't wake up enough to nurse. We keep him in our room and fall back to sleep. I was nervous about him being in our room overnight while we were sleeping...afraid someone would sneak in and take him...but my ingenious husband comes up with a great floor plan idea. We moved Simon's bassinet over near the window, and moves his recliner (poor guy had to sleep in that!) in front of the door...so basically to get to me or Simon you had to move the chair...with him in it...

Sunday: Time to go home! During the process of getting our stuff together and gettin Simona nd I checked out for the last time by the doctors...Markus had a coughing fit and somehow blew a bloodvessel in his eye...so he's has this blind spot...(which almost 8 months later is STILL there...will he go back to the dr? Of course not! Men!)

Since we thought we had more time until he would be born, we didn't exactly see if the car seat would fit in our van...and of course...it doesn't. So we didn't use the base, and strapped him in the infant carrier and used the seat belt. Off we go with our tiny baby...leaving not at all like we imagined when we arrived just two LOOOONG days before...what a weekend!

Simon left the hospital very jaundice. So throughout the first week, we went back in for weight checks, more needle sticks in his poor little heels, and finally ended up taking home a biliblanket...this thing with LED lights that attaches to his back and wraps around him. He has to wear 24 hrs a day. We nickname him our little glow-worm! It works and soon his count is back to normal.

When we saw our pediatrician we told him about our delivery experience and what the NICU doctor told us. He did some examinations of Simon and tells us very honestly, he doesn't know what to think about the Down Syndrome. He says Simon's muscle tone looks good, his features aren't that prevalent. He of course says he doesn't want to give us false hope, but of course I immediately get hopeful. I'm certain that NICU Dr made a mistake...

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?

"My little Japanese buddy..."

Well, this is my first ever blog...I have lots to say...but not sure where to start! It sort of feels like my life has been sectioned off into chapters...so should I start at the beginning...or start with the most interesting? I guess this will sort of morph itself into whatever it becomes. So I'll start with what is happening right now.

Right now I'm trying to get my 5 months old son, Simon, to take a nap...easier said than done...he's currently trying to put his toes in his mouth, at least that's what it looks like on our video monitor... I have his playskool rainforest mobile turning and Allison Krause singing "baby of mine" on the ipod...hoping that helps. I picked 'baby of mine' by her because of the lyrics. Well, actually I used to play it for my preschool kiddos during naptime and decided to sing it to him after he was born. I sang 'you are my sunshine' to my daughter and she still loves that song. But then after Simon was born, I couldn't remember all the words, so I looked the lyrics up online. It was so surreal, when I read them. I picked out this song prior to his birth, lines like: little one when you play, don't you mind what they say. Let those eyes sparkle and shine, never a tear, baby of mine. Simon was probably four or five days old when I actually read the lyrics. We were in limbo at this time wondering about his chromosome test. The NICU doctor told us she suspected Simon had Down Syndrome. God what a roller coaster that was. Simon was born on February 27, ten days early. He was my last baby...I have two older children, Ben 11 and Samantha 7. My husband has a daughter, Logan, who is 14. Simon was the first time I actually went into labor. My other two children I was induced. Not fun! But they were fast deliveries, 6 hrs and 3 hrs. Simon was 8hrs.

I began having contractions at about 3:45. I didn't wake up my husband because I wasn't sure if they were really the "real" ones. I had been having some minor ones the day before, but none that were regular. I tried to time them, but fell alseep in between and when I'd wake up with another one, I couldn't remember what time the last one started. The alarm finally went off at aobut 6:30. Markus, my husband, rolled over and opened his eyes sleepily, saying "good morning beautiful" (his nickname for me) I said, "I think I'm in labor...." He got up and called his mom to come watch the other two kids. (Logan was at her mom's) It was quite funny watching hi wander around amilessly...trying to get himself dressed. I asked him to get me some clothes...some underwear, a tshirt and some sweats...so of course he pulls out a thong with a boyish grin on his face...very funny sweetheart! um...no...I said...his face fell...instead I chose the maternity underwear, grey sweats and my "geek inside" t-shirt. Its amazing to me that a human body can actually do this...actually contract and get ready to push another human being out.

My contractions were about 5 min apart. They hurt! We made it to the hospital and got situated in the inte triage room...you know...the room where they check to make sure your body is serious about giving birth today. Oh yeah, mine was serious. 4 cm. dialted! whoo hoo! I'm being admitted! They wheel me over to my room. Try to get a vein to hook up the IV fluid ( I have to have two bags of fluid before they'll give me an epidural!) Blew out my vein in my left arm...had to stick it in my right arm by my elbow...not fun. Everytime they left the room, I'd up the flow of the IV fluid so I could get that epidural faster! Dang those contractions hurt...and all this w/o any meds to help labor...still amazes me that my body knows how to birth a child on it's own!

My dr showed up..."lets break your water!" "Oh no you're not!" See, with my last two kids, whenever my water broke, those babies were out within 30 min...I was haivng no water broken till I had my epidural. So he said ok and would be back later to check on me. Famous last words! I began saying phrases I never say...like "holy mother of GOD!" Where did that come from. Thank God I had Markus and my mom to help...and I nearly broke their hands. FINALLY the drug lady shows up...and isn't she arrogant! Epidural went great...but I'd waited so long that I moved from the pain to the pressure...so the epidural didn't numb me totally...bummer!

By the way...I just checked the video monitor...Allison Krause did it again! Sleep away baby Simon!!!

Shorty after the epidural...my water breaks...and my sweet baby boy has pooped! Yes, meconium everywhere! YUCK! So they have to call a NICU dr. down...this means that I won't get to hold him right after he's out...bummer!

I'm finally 10 cm...probably 11 or 12 by the time the dr. shows up! Where is he! I was holding it for like an hour waiting for him to get there! He runs in with his "catchers" hat on and delivers my 7lb 10 oz baby boy! I got to seem him come out too...thanks to the mirror I insisted on. I was so glad my mom was there too! Markus cut the cord and they wisked him off to suck out his lungs before they'd let him cry. I tell Mark to go over and check on him. I can see the NICU dr examining him...checking his neck, fingers, toes...boy is she thorough...listening to his heart for a quite a long time...hmmm...when can I hold him! I've not even gotten to look in his little eyes yet. I can see lots of red hair...and he's grabbing at the nurses! He doesn't like that stethescope thingy...she keeps listening to his heart...whats up with that? The hustle and bustle of putting the bed back together, delivering the placenta, a picture with the doc...finally it settles down....

The NICU dr, who is of asian descent so her accent is a little thick...comes over to my husband as he's holding the baby (we've not yet named him) and says words I'll never forget...


"Your son has some features consistent with Down Syndrome. Do you know what that is?"

What?

What did she say?

What do you mean...features?

I've not even looked at him...what?