Our lives became a little [EXTRA] special on February 15, 2011 in a way we never expected.

This is about our journey and the [EXTRA]ordinary people we meet along the way.

Monday, August 20, 2012

People first, people

When I started my career change and graduate school (simultaneously, mind you), I encountered this strange and foreign concept to me called People-First Language. When I was taught the concept, I thought, well, this makes sense! I get that we should discuss individuals with disabilities focusing on the fact that their disability does not define them and they are people or children before they are the disability.

What I didn't know was how long it would take me to make this very conscious change in my own language. And to be honest, it didn't even take full hold until after Wyatt was born. Sometimes I forget that learning curve that I had. ME! The Special Ed teacher who has a child with a disability! So when I now encounter people who don't use People-First Language, I try to be understanding and I try to educate them on the most recent terminology preferences.

So, what exactly IS People-First Language, might you ask?

Like I said, it's identifying the person before you identify the disability.

Let me explain further...

You see, those of us who have kids with a disability want the world to see that our kids are kids FIRST, not the disability. Thus, you say the child WITH Down syndrome, not Down syndrome boy or Downs baby (that one specifically makes me cringe) or for example, say the child who has Autism, don't say Autistic child.

Think of it this way, if you will: this is a medical issue, thus discuss is as such. You don't hear people walking around talking about 'that Cancer kid' or the 'Leukemia Baby'. So why do it with disabilities, which are medically grounded conditions? I prefer that people don't identify our children as only having a disability. They are often bright in many ways, have strengths and weaknesses, just like any child. I prefer that people take the more respectful route of People-First Language. And, please, don't call my child retarded. That's like calling a person who is black a 'Negro' in the disability world, IMHO. See THIS SITE for a better explanation of the "R" word

I encourage all of you to make this slight, but important change in your syntax (order of language) from this point forward in your writing and verbal language. I know I would appreciate it, along with thousands of other parents of beautiful children...who just happen to have a disability.

Saturday, August 11, 2012

Wyatt's Birth

I promise you this story has a happy ending. This is not a sad story of tumultuous decisions and utter heartbreak. This is a story of triumph, growth and the ultimate realization that we can do all things through Christ. This is a story of how joy cracks through fear of the unknown and breaks it wide open.

This is the story of how my son came into the world and changed us for the better.

For a long time now, I've considered writing about Wyatt's birth. It's been looming over my head for about a year. After he was born, and returning from visiting him in the NICU one night, I sat down, finally opened my computer and typed in the three words: Down syndrome birth.  For days I had avoided the computer. Josh was far from being ready to read anything. I was fearful and anxious but  ready to see into the new world in which I was dumped a few days earlier.

My internet search lead me to Kelle Hampton and her blog. At midnight, I sat, reading - hanging rather - on every word from Kelle's birth story about her daughter, Nella who also had Down syndrome (to read it, click HERE). I cried for two hours after that. I still go back sometimes and look at that story, although through very different eyes now. But in that moment, through tears and all, I found relief in some way from the fears I had in my heart. SHE seemed to find healing in writing it, too. I thought, someday, I'll write about the day Wyatt was born...when I'm ready. Well, after reading lots of stories this week about births and pregnancy after having a child with Down syndrome...

I'm ready.

Josh and I were beyond thrilled the day we found out that we were having a boy. To be honset...we were trying for a boy. There had been NO boys (and barely even any KIDS) born in Josh's family that would bare the Scheerer sur name since Josh was born in 1974. That's 37 years for those of you counting. It's really up to him to carry on the Family name. That's an important part of our story, I think. And even though we were trying for a boy, we really just wanted another baby. We felt that Eden should have a sibling. I always wanted lots of kids. We would have been happy either way. Part of me equally wanted a girl so Eden could have a sister, because I really love having a sister. But all in all, we were having a boy and we were very excited.

Eden came at 36.5 weeks. She was tiny: a whopping 4 pounds, 14 ounces the day we brought her home after losing a few ounces from her slight 5 pounds 7 ounces at birth. But she was healthy and we were totally unprepared for her early arrival. Her birth was fast and crazy for a first child. From arrival at the hospital to delivery, we were only there 6 hours.  I HATED having the epidural (although I think it was the best choice at the time, since I couldn't stop throwing up long enough to manage my contractions). But I felt the effects of the epidural long after her birth. Although it wasn't what I had in my mind, I really was happy with her birth overall, but I wanted to make some changes this time. I returned to the set of mid-wives who delivered Eden and started talking about a birth plan. For one, I was not going to be caught off guard again this time. I was going to be prepared at 35 weeks to have a baby (my mid wife said it was unlikely to happen again and my doula said it was unlikely as well, although not unheard of). I found, met with and hired the doula. I did my research and wrote a birth plan that included asking the staff at the hospital to never ask me if I wanted drugs. I washed clothes, set up my maternity leave and finalized child care for Eden. I was ready...haha...or at least as ready as I could be.

I had a pretty great pregnancy. I was in good shape, running until about 27 weeks. I had lost a good chunk of weight between pregnancies - more than I had gained when pregnant the first time. I had some pretty ugly migraines and some bleeding scares, but I love being pregnant so I took those things in stride.

At 35 weeks, I started having deja vu. I was feeling EXACTLY how I felt right before I delivered Eden. I thought - lightening can't strike twice, I had Eden's conception date wrong which made it look like she was early... But when I went in for my 35 week appointment for baby #2, I was starting to doubt all that. I was already a centimeter dilated. It was felling all too familiar. JUST LIKE EDEN.

When I reached 36.5 weeks, it was a Monday. I went to work as normal. I came home and ate, put Eden to bed, did some homework and went to bed myself at 11:00 pm, thinking: I made it! I'm not going to deliver at 36.5 weeks...there were no cramps, no contractions to speak of. I settled in and went to sleep.

At about 2:15 am, I, in a sleepy dream state, remember thinking that I should wake up because I'm peeing my pants. Then I realized: my water was breaking! By the time I made it to the bathroom, I was soaked to my knees. I sat down to a large GUSH.

Crap. I sat there and began to shake. Not from contractions, but from nerves. It's go time!

I can do this.

I am strong enough. I sat there for a while. What now? I can't get off the potty - I keep leaking! I called for Josh. He sleepily came in...asking what's happening, are you sure your water broke, etc. I called my doula and mid-wife. The contractions started to set in.

We made our phone calls, got our bags and waited a few hours. My doula came to the house and Josh left to go take Eden to the sitters at 5:30 and get me some Starbucks before heading to the hospital. At this point, contractions weren't unbareable, but enough to be uncomfortable.

I can do this.

We arrived at the hospital at about 7 am. We went in and started to work. I received an IV block, instead of a connected line to allow me to be mobile. I was 3 centimeters and I managed my contractions and we were able to set up a pool in our room to help with my pain management ( you can't deliver in water in this hospital, though). It worked well and things were seeming to progress. At 2pm, there was still no baby but contractions were picking up. They checked me again finally and I was only at 4 centimeters. My doula suspected that the baby was facing my hip. My blood pressure was dropping and the baby wasn't doing as well as they wanted. They were concerned. They hooked up my IV for fluids and they decided to position me on my side in the bed to try and get him to turn.

I can do this.

An hour went by of very difficult labor. At 3:00 pm they checked me again. Only 5.5 centimeters. The mid-wife and doula suggested that our family go take a break, that it might be a few hours still.

But the contractions kept coming - hard. I looked at Josh and my medical staff. "I don't think I can do this much longer," I said. I could see in Josh's face that he was concerned for my well being. I knew it was tough for him to see me n this much pain. I saw him mouth to the nurse, "you DO have something standing by, right?" I saw her nod. My mid-wife said they just needed a little more time. She knew: I can do this. The positioning, they felt, was working.  We kept going.

I can do this.

I kept telling my self that, in between contractions.

Thus began the longest 45 minutes of my life. It was so tough to hang on, but I did. There was lots of vocalization. Finally, I felt massive pressure and burning (TMI? LOL). They checked me again. I had moved 4.5 centimeters in 45 minutes to full dilation and the baby was crowning. I stared to panic and my mid-wife said, "Rebecca, I need you to focus!" I did. I pushed about three times...and he was out!

I did it!

They placed him on my chest. He was quiet at first, but squirmy. His little eyes opened and looked at me. I asked if all his boy parts were there (they were) and I kissed him on his tiny forehead. They kept him attached to me for nearly 10 minutes. Finally we cut the cord and he had some great healthy cries! He looked so beautiful. But different from Eden, though. The nurse asked us what we were going to name him. I looked at Josh and said 'so, what do you think?" He said "I think Wyatt." I agreed, he was a Wyatt. Wyatt Daniel Scheerer. What a good name!

They checked him, gave him a strong apgar score of 8 or 9, weighed him in a a whopping 5 pounds, 10 ounces, and left us to be with our baby. Family and friends came to celebrate. We posted about his arrival on Facebook and I proudly announced my natural birth - no drugs, not even a Tylenol. It stands to be one of the proudest accomplishments of my life.

We had a lovely evening with family and friends. We ooohed and aaaahed over his cute tininess. We snapped pictures and cuddled. In the midst, I found out later that apparently I asked my friend, Emily, three or four times if she thought he looked OK. Maybe it was paranoia. Maybe it was instinct. I can't be entirely sure which to this day. The staff came to draw some blood, although they were having difficulty doing so because he was clotting so fast. But they eventually got what they needed. The room began to clear.

As family and friends left, I told Josh to go home and sleep. It was what we had done with Eden. One of us needed sleep. And besides, Josh had a mid-term in the morning that I thought he should go ahead and take.

About 11:00 pm, he left for home. Normally, this would be the end of my birth story, snuggling up to baby bliss for the night, but this night was different. This time, I had no idea what the rest of the night would bring.

Shortly after Josh left, a nurse came in. She asked me how I was doing and we chatted for a few moments. Then she asked me a question, "So, have you noticed there have been alot of people coming in to check on Wyatt?"

I froze. "Kind of...?" I replied, almost as a question. And what she said next is a bit of a blur.

"We see soft markers of Down syndrome...low tone...skin behind the neck...want you to be prepared for the pediatrician in the morning...if it were me, I would want to know now..." These were all phrases I remember. It came like a Metro bus hitting me.

"Huh? Hold on...WHAT?????!!!" Is what my head said.

I think I responded with a firm "OK." But I was confused. You think my son has what? How could...what do you mean...?

She looked at me, "you seem to be taking this well,"  she said.

How the heck was I supposed to be taking this?!

I muttered something back to her about being in graduate school for teaching special education. That I understood what she was saying.

She told me that if I needed to talk that I could call her. I'm thinking, "why in the world would I call you to talk? I don't even know you!"

Then she left. Left me alone. ALL ALONE, in my room with my beautiful, perfect, new baby boy. The room grew and grew. And it filled with loud silence. You know, that point where you can't hear anything, except you can hear the deafening silence screaming in your ears? Yeah, that's what it sounded like. My mind raced. My heart pounded. I hugged him, kissed him, nursed him, loved him and spent the entire sleepless night studying EVERY feature. I made a decision that night that I regret. I was in denial and I was sure it wasn't the truth that Wyatt had Down syndrome. I chose not to call my husband. I wanted to protect him, to give him rest and to shield him from what was certain to be the most jarring news of his life.

Morning came and the deafening silence turned into a bustling maternity ward. The dreaded visit from the pediatrician came an hour before I was expecting. She was kind, but straight-forward. She eluded to the fact that she knew the nurse had talked to me already. She looked over Wyatt. She may have exchanged pleasantries with me, but I don't remember it. All I remember is that she told me she thought he may have Down syndrome. All my hopes from the previous hours that the nurse was wrong just flew out the window. She said Wyatt was struggling with his oxygen levels. They tried to take blood again but it wasn't working. They need to put him in the NICU, in case he had a problem with his heart. His HEART? All that came out of my mouth was the word "OK" I think.


What is going on?


I sat there and thought about all of my education. All my training on disability. I hadn't even thought about Down syndrome when considering all the things with which a child can be born! I thought about how I can do this for work, but how in the world can I do this 24/7 at home, too?! It was completely overwhelming, I must admit. There are people who say they had immediate peace about their child's diagnosis. I was not one of those people. I had immediate panic. Not for fear of who he was, but for fear of how I could possibly give him everything he needed. And to add the question of a heart defect. Wow. I went to the end of the road: what if I'm never going to be able to bring my son home?!?

Josh was still taking his mid-term and I didn't think I could get ahold of him. So, I did what I thought was my only other option: I called my Mom.

"Mom...?' I said as she answered. "do you think you're going to be here soon?"

Why? she asked.

"Mom, I'm sorry, but I need you to get here as soon as you can. Something's wrong. Mom, they think he has Down syndrome."

The words didn't feel real. I burst into tears. I tried to control it, but all my emotions from the previous night just exploded.

'What?' she asked.

She was at Kroger's and I could hear her tears begin to fall. She was as confused as I was.

"Honey, I'll be there as soon as I can. I'm leaving now,"  she said.

From here on it was a flurry of nurses, doctors, information and stress. They took Wyatt to the NICU and hooked him up to what seemed like everything on the planet. My mother arrived and brother-in-law came to see Wyatt and support us in our current state of unrest. I was in chaos.

And finally, Josh called. I told him that something happened this morning and that Wyatt was just taken to the NICU. He said he was on his way. When he arrived, I was with Wyatt. I had talked to the pediatrician, explaining my concern in telling him what was happening, as I was still trying to protect my husband from the news he was about to receive. (Now, I think how foolish of me to think this way, but it's the truth of the story). The kind doctor said she would take the lead in explaining to Josh what was happening.

When he walked in the room, I could see the panic on his face.

"Come on over, babe," I said. "Have a seat."

The doctor proceeded to explain to him what was going on: Down syndrome. I asked him if he needed a minute, and he retreated to our room. I gave him some time and went to meet him. I had only seen my husband shed tears twice before. He was in shock and his mind reeled. And when I came to support him, this would be the third time. I felt saddened and responsible that I did not give him the son he was expecting - a namesake. I would later find, he didn't fault me at all. (Love him!)

It was a tough 12 hours after delivery. Wyatt continued to have issues with his oxygen levels and he was becoming very jaundice. These factors, coupled with the question of Down syndrome, a possible heart defect and the current hospital's lack of resources to deal with these issues meant only one thing: he had to be transferred to Cincinnati Children's Hospital Medical Center (CCHMC). He was barely 16 hours old when an ambulance and FOUR members of CCHMC came to pick him up. Josh had decided to go spend dinner with Eden (a good choice) so he was not there when they came to take him. I sat looking at my tiny, perfect boy, hooked up to so many wires. They let me sit with him and hold him for about 20 minutes as they prepared for transport. I cried the entire time. Audible sobs wondering if my boy would make it. I felt like I didn't have enough information as to what was happening, so my mind was preparing for the absolute worst. When they left, I returned to my room. My sister-in-law and Josh arrived.

I turned from distrought, into a woman on a mission.

Thankfully, because I had delivered naturally, my body was bouncing back like you would not believe!! My guts were already working again and I had no stitches. I called for my mid-wife and bluntly told her that there is absolutely no reason for me to still be here when my son is not. Ineeded out! I asked for, and was granted a discharge a mere 17 hours after delivery.

Josh hadn't been there when Wyatt was transferred, so he wanted to go to Children's. I agreed, let's go see our son! By 10 pm, I was waddling slowly down the quiet hallway of the hospital. It was surreal and I couldn't believe I was here. At this point, I almost felt like "Forget Down syndrome? Wyatt just needs to get home!"

We knew we were in good care at arrival in the CCHMC NICU. We stayed by his side for a few hours. We were not allowed to hold him because of all the wires he was hooked up to.  Then sadly, went home. Without our son. And that is one of the toughest things I've ever done.

Days went by and we awaited our test results from Genetics. Then finally, the answer came: yes, Wyatt had an extra 21st chromosome. It was a definitive moment. I went home that afternoon, still without Wyatt, and sat down on the floor to play with my daughter. I burst into sobbing tears. Partly for the sadness that my family was not complete without my son being home. partly from lack of sleep and partly from the fact that every idealism I previously had, just changed.

Eden hugged me. It was healing. I looked at her and thought about life and hopes and dreams for my children. I thought....


Not because it is simple, but because there is hope for ALL of our lives. God does not make mistakes. And trust me, God does not hand out children with special needs to the "right" people. But, I started to realize that this was not the mountian I saw before me a few days ago. It was a part of me, my life path. It's what I was meant to be all along - a mother of two beautiful and perfect children.

That night at home, after everyone was asleep, I opened up my computer and typed in those words that seemed so fearful before: Down syndrome birth. And in that search, I found a calmness and joy through my tears and I found the new beginnings of my [EXTRA]ordinary life. You see, in the midst of chaos, we were offered a joy that we never knew we could find. The fact that he cannot have children of his own is now a moot point. I've come to understand that our legacy is not dependent on our ability to produce offspring. It can be so much more than that.

The first few weeks were not easy, I'll admit. But the eventual peace we now feel began to grow by the light of my computer screen.

Wyatt came home from the NICU after a 13 day stay. He was taken off his feeding tube after three weeks. He has no major heart issues to date. He is healthy and thriving. There is no more fear for his future than there is for my daughters. We are better people - a better family - because of this tiny boy that came into the world. And he is everything that I always hoped my son would be to me: one of the greatest joys of my life.

Wyatt begins to wake up after a few days in the NICU

Wyatt his first night at Cincinnati Children's Hospital

Mommy loving on Wyatt

Daddy loving on Wyatt

Our little Monkey!

Wyatt comes HOME!