Tuesday, May 31, 2011

Staying Ahead

I had been told by many that summer classes are much more grueling and challenging than Fall and Spring. This is because you have around 4 less weeks to complete the exact same courses. Everything is crammed in. I'm finding this to be true with my Human Biology class. The professor jumps from one term to the next without stopping for the entire three hour class. I'm grateful I took Biology 1 this Spring because if it were not for that class I would be sadly lost. All the terms my new professor is going over instantly click because they were throughly explained in Bio 1.




Looking over the syllabus to all my classes the work load scared me so today I determined I would get ahead as much as possible. I set out a list of all I wanted to have done today for school. Most of it I got accomplished. This morning I got to sleep in. Normally Tuesdays are Ronan's therapy days. But my dad was supposed to have surgery today and I had cancelled. Then his surgery got cancelled which meant I cancelled therapy for no reason. It ended up being ok and gave Ronan a little break.





This also gave me more time to focus on the homework list. Above is Inara being silly. She loves to hang her head upside down and giggle. The other half of my day was spent with the two smallest members of my team. We played with Ronan's new ball popper which I think reminds him of therapy too much. When the balls pop up he will grab one and then crawl as quickly away from the device as possible. Inara on the other hand loves to put the balls in and then push the button and repeat the entire process. Honestly if Ronan had not come across this toy in therapy he'd probably be enjoying it just as much. He tends to be against anything people are forcing him to do.















Monday, May 30, 2011

Inara's New Phrase

The three big kids are at their Grandparents until Wednesday. It's been quiet without them and I even slept in a little this morning. I miss them even though they've only been gone about two days. They are having fun. I've heard tales of pumpkin pie making and tire swinging.

Back here at home we went out to the park and just walked around a little bit. We had lunch out and looked around Best Buy. We didn't do too much for Memorial day because it was really hot. Speaking of Memorial Day I'm grateful to all those who served and are serving our country. I'm proud of my Grandpa Chandler who helped to storm the beach of Normandy and helped liberate concentration camps.

One particular story he told me has always stayed in my mind. It is well known to our family and if the events that took place would not have occurred I wouldn't be here as well as my mother and the rest of his children and grandkids. He was marching which in a way was funny because he signed up to drive a truck but marched up until the war ended and he drove officers to trials.

But on this particular day he was marching as usual when a man in his infantry stopped him.The man told my Grandpa "You have to switch places with me. " My grandpa argued with him for awhile but the man insisted and finally picked my grandpa up to switch places with him. The man handed my Grandpa all his things and told him to get them to his family. There were bombs going off around them and when they finally got to their next stopping place my grandpa inquired about the man. He was told he had just been killed. If my grandpa had been in his spot that would have been him. Many men and women have made great sacrifices for our freedom and I am grateful that they have.

Inara has learned a new phrase. She loves to say "I did". I'll say something like "Did you eat that cracker?" and she will say "I did" I wasn't sure if she was saying that for sure even though it sounded clear but when I said "I did" to her she repeated it back several times and has been saying it all day. She is going to be a chatter box. She is also standing alone more and more. She has learned that I get excited when I see her stand and if she's standing and I don't notice she'll say "Hey!" really loud. I got tons of homework and since I've enjoyed the day with Isaac and the babies I better hit the books.






Yes there is a ton of space here. Why? Because for some reason my blog has started leaving me a ton of space at the bottom and won't allow me to fix it. I guess when people are reading several of my blog posts at once they will definitely realize where they begin and end. It annoys me.























Sunday, May 29, 2011

The Day I mourned a Gift

I've been thinking about what to do for this blog on Ronan's birthday. For my other kids I told their birth stories and some of who they are. But Ronan's birth story is rather long so long I'm writing an entire book surrounding his birth and the months that followed. It's not long because of him it's long because of me and the things I learned about myself through his birth. His birth is about the path God put me on with this beautiful gift as all my children are.But in telling his birth story I have to open myself up with pure, honest, raw emotions. Emotions that at times are hard for me to acknowledge. The day of his birth I mourned because I had been given a gift but in my ignorance I saw heartache where joy should have been. So if you bear with me to the end of this blog post you will see the beginning of a story of a beautiful little boy and how his mother learned to grow into who she is today. This will be the longest blog to date.Flashbulb memories. That term is the most fitting to describe Ronan's birth. While all my children's births are in their own ways flashbulb memories Ronan's stands out for several reasons. My entire pregnancy doctors had no clue anything was wrong. A few months after Ronan was born I was sorting through email. I came across one e-mail that startled me and in all the chaos that ensued after his birth I had forgotten. The email was to my best friend and I had told her that I knew something was wrong with the baby. I had nothing to go on other than a gut wrenching instinct. I realized all those months later that I had known my entire pregnancy.
The day Ronan was born I had been on edge. I couldn't get comfortable and I retreated from everyone, asking Isaac to watch the kids. I still had three and half weeks but there was concern over my unsteady blood pressure and chronic chest pain. The doctors had admitted me to watch and then sent me home with strict orders to watch myself. I'd never had problems with blood pressure during past pregnancies.That night Isaac thought a movie might improve my mood. He took me to see "Up". We had to stand outside the theater for them to clean. During that time I started getting mild contractions. By the time we were watching the previews I knew this was it. I informed Isaac and he thought I should see if I could make it through the previews but after one more contraction I told him we had to leave.He sent me to the car while he went to get our money back. He told the ticket boy that I was in labor and the boy ran across the theater to find his manager. On the way I thought Ronan would be born in the car and I let Isaac know. "Stay calm. He is not going to be born in this car!" I could tell those words were more for his benefit than mine. We made it to the hospital and Isaac ran in to get a wheel chair for me. As we got upstairs no one was at the check in desk. Isaac had to go searching for someone. Finally a receptionist walked in to get us checked in. My nurse didn't even send me to change my gown she just threw everything on me in the bed and had three other nurses help her.
She checked me and I was an eight. She called the doctor who was there within ten minutes. She checked me again and I was fully dilated. Two weak pushes and Ronan Jesse was born. They took him over to the table without me seeing him. Isaac followed over with the video camera. "His face looks funny." that was all Isaac said. I thought he was being his usual joking self and being hormonal I snapped "Be nice!"They wrapped him in the usual burrito fashion and handed him to me. " I don't think he's breathing right." I told the nurse. She assured me "He's fine. Just a quick delivery didn't get everything pushed from his lungs. He'll be fine." I continued to watch him and tried again. "I really don't think he's ok. Can you check him again?" She seemed annoyed this time. "We did check him, he's ok. I'll be back." With that everyone left the room. Isaac had gone down to move the car since he had left it in an unloading lane.
I looked down at Ronan. His color looked poor and then my heart began to race. His eyes rolled back and then shut. He went from pale to purple then blue. I pushed my nurse button. No one responded. I sat him up and rubbed his back. He was unresponsive. As Isaac walked into the room. He saw my panicked look. "Get the nurse Now!" He ran out in the hall and brought a different nurse with him. She looked at Ronan and quickly took him from me. She put him on oxygen and then rushed him out of the room.I started crying at this point and another nurse came in to tell me they were taking him up to the NICU and I could come and say goodbye before they sent him up. They wheeled me over to see him. "Is there something wrong with him?" I wanted to know. "No, he was just early. Otherwise perfectly fine." I was relieved. They took me down to the postpartum floor and a nurse was waiting for me. I really wish I could remember her name because I know as long as I live I will never forget her.
She checked me over and then let me know the neonatologist wanted to see me in the NICU. I was on the verge of tears. "Is it bad?" "NO, if it was really bad they'd come down here to talk to you. She probably just wants to show you he's getting settled in." With those reassuring words I left Isaac sleeping on the pull out couch. I also opted out of the offered wheel chair. I was fine to walk.
We made it up to the NICU and already I knew something was off. There were too many nurses and doctors in his room for a baby just on oxygen. They were putting tubes everywhere. Then the doctor said the words that changed my life forever. "We're pretty sure he has Down Syndrome, and he has a hole in his heart and his esophagus isn't connected. He'll need surgery in the morning." She said all of it just like that. Like she was simply checking items off of a grocery list. My hormonal, 3:00 am mind couldn't process her words.
Feebly I said "He doesn't have Down Syndrome. We tested him for that."

"You mean the AFP?" she asked without even glancing up from her clipboard.

I continued "Yes, I had that and it showed he's fine."

She countered "That test is highly inaccurate".

The room began to spin and dim at that moment. My nurse who'd come up to the NICU with me must have seen my distress because she wrapped her arms around me and steadied me. Right there in front of all the nurses and doctors I broke into deep sobs. They were uncontrollable. The same nurse handed me a tissue. I gained composure enough to say "I need to see my husband."
The nurse lead me back to the postpartum floor. In the elevator she said "At least all of it is fixable." I was silent but in my mind I bitterly thought "How is Down Syndrome fixable?" When we got back to the room the nurse insisted on checking my blood pressure. "I need to talk to you wake up!" I was already sobbing. Isaac sat up. I waited for the nurse to leave. "They think he has Down Syndrome!" I burst into full blown tears. " I thought so" Isaac said solemnly. It hit me then that was what he was trying to tell me when he had said Ronan's face looked funny. He just hadn't known how to tell me. He sat there for awhile and I got up to get a tissue in the bathroom. He followed me."I'm sorry." I said between tears. "Why this isn't your fault. It's no one's fault. It just is." He wrapped me in his arms and I fell apart. He helped me back into bed and then he had to leave to get back to the other kids. I laid in my bed in a very dark place. My arms felt so very heavy. So very empty. I cried until exhaustion lead me to sleep around 5:00am.
When I woke up in the morning it hit me. I had no idea what Down Syndrome truly was. Sure I had a basic idea but in all honesty I had no clue. I thought then about his heart defect and his esophagus. I thought how unlucky he is to have Down Syndrome and health problems. Now I know how naive I was. He has health problems because he has Down Syndrome.
I told my mom over the phone. I told her with no emotion. "They said he has Down Syndrome. He has to have surgery today." "Why?" "something about his esophagus I have no clue." I'm wondering if she thought I'd lost my mind. The emotion was there but I was too drained to put forth the effort of showing it. I called Isaac "You have to come up so I can see the baby." "Why don't you go up" "Because I need you to push my wheel chair. The nurse said I need to go up in the wheel chair this time." "So have the nurse push you." "I can't I need you to push me so I don't bother the nurse." "You aren't bothering her. It's her job." I gave up. I knew very well I could have the nurse push me. That wasn't the problem. I was scared to face that tiny baby all alone.I took a deep breath and called the nurse to take me. She dropped me off and I sat on the little pull out bed starring at his incubator. So many tubes and wires. A nurse came in "Are you mom?" I nodded. "What's baby's name?" "Ronan. Ronan Jesse." "Also we were wondering if you had had any prenatal care. Since none of his issues were known beforehand?" I was caught off guard. Hadn't they looked at my record? Were they thinking I had neglected my baby. I felt angry. I didn't let it show. I calmly said "Yes, I had prenatal care from the beginning. I went to every visit and had four ultrasounds. No one caught anything."

That statement lead me to feel betrayed by my doctors. How could they miss so much? This is all their fault. I thought it as though Down Syndrome, a hole in the heart and an esophagus defect could have been prevented. I knew the notion was ridiculous. But my thinking was skewed and bordering on the irrational.

I got a call from my mother in-law. They were on their way to see their new grandson. They had no idea anything was wrong. Isaac arrived shortly before they did and we met them down in my room. I sat on the side of my bed with my face looking at the floor. Isaac sat beside me. "They think he has Down Syndrome." he told them. I simply nodded a confirmation. We all headed up to see Ronan.We had to fill out paperwork to let my in-laws in the NICU. When we finally got into the room we all looked at Ronan and stood over his incubator. The nurse walked in and looked at me. "Would you like to hold him?" My face unexpectedly lit up. "Can I?" "Sure I'll help with his wires. Why don't you sit in the chair." She maneuvered all the tubes and wires and placed him in my arms.
My heart melted and I realized this is what I had been longing for. This is why my arms had felt so empty. I wanted nothing more but to hold my baby.Isaac sat beside me and my in-laws took the first picture of me holding him. I starred intently at him. They all had to be wrong. He looked perfect. A beautiful little baby. He doesn't have anything wrong with him. One look at his sweetness had brought me into pure denial. I cradled him and I realized then nothing else mattered. All that baby wanted was someone to love him. I determined right then he would have that. If there was nothing else I could do I would make sure he knew he was loved.There is Ronan's birth story summarized since this is just a blog post. There is more in the book I'm writing. This single post can not contain all the things I've learned or become since May 29, 2009. I am different. You have this sort of cookie cutter idea about your children before they are born. They will walk around a year, talk by two, go to the doctor for the occasional illness and maybe even one or two ER trips in their life for stitches or a broken bone. You dream about what they will become and what they will do. The day Ronan was born the cookie cutter dreams I had for him unraveled and I was left mourning a gift because of my own ignorance.
Ronan was just a boy who like my other children was sent with no other wish than to be loved. It was his imperfect mother who saw grief where joy was. I have been asked "If you could somehow go back and have Ronan be born without Down Syndrome would you?" On the day of his birth my answer would have been "absolutely!!!!!". Today two years later with him smiling up at me and his soft hands patting my face I answer "absolutely not!!!" To Erase the Down Syndrome would be to erase part of who my Ronan is. While it is far from being all of him it is a small portion of what makes Ronan Ronan. I am grateful that God gave me Ronan and was patient as I took the time to see the wonderment and beauty that is Ronan.





















Saturday, May 28, 2011

Two Parties in One

Xander and Ronan have birthdays two weeks apart. Xander turned five on May 16th and Ronan will turn two tomorrow on the 29th. Last year they celebrated their birthdays together and we went to the grand opening of Gigi's playhouse. They had a carnival and other fun things. This year we decided we would go to the zoo. Xander is a huge dinosaur fan and our local zoo had opened up an electronic dinosaur exhibit. Both my parents and Isaac's, as well as my brother and his family joined us. The forecast had foretold warm 76 degree weather and I took this into account when I laid out tank tops and shorts the night before. Instead we were greeted with weather that seemed to more accurately depict Fall. This called for last minute changes for jackets. Clouds threatened rain but we pressed on not willing disappointment on the kiddos. A light rain began as we headed into the entry building. We were fortunate that light rain was the worse it got the rest of our zoo outing. Minus a trip to the Omaha zoo when Ronan was four months this was his first zoo trip and Inara's. He loved it and clapped at nearly every exhibit. His favorite appeared to be the monkeys. Every time they would move he would grab the fence and bounce up and down yelling with excitement.
Inara favored the giraffes. When she saw them she let out a delightful squeal of laughter and pointed at the giraffes. She would turn to me smiling then look back at the giraffes. Xander couldn't wait to get to the dinosaur exhibit we'd been promising. He ran right for the large white building that contained all the animated dinosaurs. He requested his picture in front of each dinosaur. He got firm with one set of dinosaurs because they were fighting. He put his hands on his hips and told those dinosaurs that fighting was bad.Landon tried to figure out the clues in the zoo detective boxes. I still don't know if he figured it out by the time we left but he carefully remembered each clue box all the way through the zoo. Jadzia seemed to quietly walk through the zoo taking everything in all in normal Jadzia fashion. She was somewhat drawn to the dinosaur cut outs. She liked me taking her picture as a dinosaur. We had a full morning at the zoo.
My brother got Xander and Ronan presents for their birthdays. He let them pick out whatever they wanted from the dinosaur gift shop. Xander picked a bucket of plastic dinosaurs and I picked a long neck dinosaur for Ronan. He loved it and hugged it as Grandpa pushed him in the stroller.
We went home for lunch, cake and presents. Xander and Ronan each had their own cake. Landon held Ronan up to the table and helped him blow out his candles. Ronan gobbled his cake down as did Xander. Xander was pretty happy about the giant lion balloon his Grandma Fullmer had brought him.We finished the party with presents. Xander and Ronan opened their presents together. Xander's mouth hung wide open when he opened his khung zhu tank vehicle. He also loved the frog Isaac and I had gotten him. He had been wanting it from build a bear for awhile and squeezed him tight when he saw him. Ronan got a ball popper and a light up sea turtle. We cleaned up wrapping paper and Grandma Fullmer had even more surprises.

She had brought a bunch of science books and science projects for the kids to do for school. Landon and Xander both got electronic Venus fly trap plants. You put batteries in them and bait it. You place it outside to attract insects. When an insect goes into the waiting jar below it snaps shut trapping the insect inside. They can study the insect then release it through a little door on the side of the jar. Landon was happy to have a Venus fly trap at last. I think it's a pretty cool concept. I'm looking forward to doing the science projects with the kids.Jadzia was beyond excited to have a replacement "magic wand" it was really a baton with streamers. She got one for Easter but Landon had accidentally broken it so she was extremely excited to have a new one. In fact she refused to leave for Grandma's without taking it with her. The three big kids left with Grandma and Grandpa Fullmer until Wednesday. My parents took the two babies for the afternoon and Isaac and I went on a date.We had dinner and talked. I'm happy we still have good conversation and we talk about just about anything. After eating we saw a movie and then headed home. Tomorrow Ronan will be two. I'm trying to decide what I will do for the blog on his birthday. His birth story is extremely long. So much so I'm writing a book about his birth and the months that followed. I'm thinking I'll include a chapter I had written but it will make for an extensive blog. I can't believe he will be two.