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Wednesday, June 29, 2011

Memories of Birth, Teale, part three

When the doctor got to the hospital, I was relieved to realize it was a high school friend's Dad. Another friend's Dad would be involved in this child's birth, how strange life can be. There was no rush to get me into surgery. He didn't show up in a panic, like he had been told we need to get this baby out. I often wonder about this and if my daughter was still doing well inside me at this point? Would she have been born without issues had there been a rush to get her out? The day and hours before her birthday every year are one of my toughest times still, I can't help but think she had been "normal" until the waiting began. There is much proof of my feelings. A monitor strip of her heartbeat in her hospital records was shown to me years after her birth. The strip had huge blanks where the heartbeat monitor had blanked out and there was no record of her being ok or being in distress. We don't know what she was experiencing as we waited, trusting the doctors knew what they were doing. There was much talk that an "emergency" cesarian section was unnecessary and would be much tougher on me. The things I wish I could take back, I would recover, as it turns out, my baby never would. When they finally went to take me into surgery, Mark was not allowed to come, my fear increased drastically without him next to me. As we said goodbye, I could see the fear in his eyes also. I still can see his face, trying so hard to be strong for me. Mark needed to get scrubbed and into scrubs before they let him into the room. They also would not allow him in until the spinal had been done on me. My friend's Dad lovingly held me as the spinal was injected, keeping me still and trying to calm my fears as tears rolled down my face. It wasn't pain that made me cry, it was a deep sense of dread. Just typing this makes the tears start again, I needed Mark with me and at this point I still wasn't sure where he was or if he was going to be allowed into the room. When they lay me down there was a curtain placed to shield me from seeing them cut into my belly. I am not a squeamish person and told them that was unnecessary, I wanted to see my baby born, but it was hospital policy and the curtain would stay. Mark finally came into the room, his eyes bigger than I have ever seen them, fear he had missed the birth, fear I was scared and alone, fear as to what was going on? He was told to sit, also behind the three foot curtain, so he could not see the incision made. He held my hand and prayed. He was my rock and I was relieved to have him near me, but still I was terrified to see my baby and finally know what the extent of her gastroschisis was. We knew her stomach was open and her intestine would need to be put back into her by surgery shortly after her birth. The many ultrasounds we had had could not tell us how extensive this surgery would be though. If the repair was minimal, her stay in the NICU would also be minimal, but if it was much of her intestine and colon, we would be looking at a much longer stay. We had been warned that the worst cases could be many, many months and several surgeries to repair. The moment of truth was upon us and that feeling was more than I could bare as I squeezed Mark's hand as hard as I could. I reminded the doctors that we did not know if this baby was a boy or a girl and I wanted my husband to tell me the sex.  The tears are rolling down my face as I try to put this into words. The doctor talked to me as he began the surgery, explaining each step, then as he cut into the placenta and pulled out the baby, the room went silent.  No one said a word as the baby was handed over to the team of specialists waiting in the room. Mark said nothing, my memories of Beau's birth at this point are running through my head. At our son's birth Mark repeated over and over "Come on buddy breath!" This time even he was silent, I looked him in the eyes and asked "Is it alive?" His response shocking, "I don't know." I finally conjured up the guts to ask out loud, "Can someone please tell me what I had, so I know who I am praying for?" I'm shaking as I write, reliving all this is tougher than I could ever imagine. I have told her birth story many, many times, but somehow writing it is very powerful and I'm grieving once again the "what if's." Grief comes in waves, it comes with milestones achieved and milestones not achieved, I am never done grieving Teale's birth, but I am often at peace with it. Finally the doctor told me I had had a girl and he sweetly asked, "What is her name? I responded "Teale Tatiana" and I prayed out loud. My baby girl was in trouble, the silence still piercing as the team worked on her for what seemed like forever. Mark had been unable to tell me her sex because her intestine hung so low as they placed her in a sterile bag up to her armpits and whisked her over to a table in the corner, far away from our view. My memories are sporadic at this point, I know what I have been told since those awful moments. She was unresponsive, no pulse and they worked on her for seven plus minutes trying to "get her back." Teale is a true miracle, dead for seven minutes, but the team finally got a pulse. I can picture the OBGYN's face as he took her out of me, the shock was apparent, he was devastated, how could this be? All these images go through my head, the doctor's look, Mark's face, the rush and the silence. Not hearing a baby cry in the delivery room for the second time (Beau had not cried either) was just more than I could bare. Remarkably I stayed calm, almost too calm. I had been scared to bond with this baby, I had been scared of not taking an infant home and now I wasn't sure I would be. They finally spoke to us, saying that they needed to get her to the NICU to stabilize her and whisked her by me. I got hardly a glance of my baby. Feeling completely numb emotionally and physically, the doctor finished sewing up my incision and we were taken to a room. There I told Mark I could not make the necessary phone calls with our news, I could not even speak to him.

Tuesday, June 28, 2011

Memories of Birth, Teale, part two

Soon it was apparent we needed to go to the hospital. This wasn't the plan, I was being induced on the 30th and today was only the 9th. I reluctantly packed a bag and we made phone calls to have someone come be with Beau after we left for the hospital. Mark's Mom wasn't home and my Mom lived about 40 minutes away, so her coming on this snowy night to hopefully just be sent home in a few hours didn't make sense. One of our daycare families who lived up the street was able to come. They could stay until we could get in touch with Mark's Mom. We didn't tell Beau anything, still convinced this was a false alarm, we were going to put him to bed before leaving for the hospital. So as we walked out the door, leaving Beau and the warmth of the house behind, my mind spun with questions and my body started giving more and more signs that this was real. As we came up to an intersection on the way to the hospital, a contraction took me over and Mark suddenly feeling an urgency to be someplace safe, hit the gas as the light turned from yellow to red. I felt as if I were in my own dream, only hours earlier we were sitting with the surgeon discussing the plan. When we got to the hospital the urgency seemed to stop. The procedure was much different than it had been with Beau's birth and I wasn't sure what to expect. The hospital we were to give birth is a teaching hospital, meaning there are usually many students also anxious to talk to you and examine you. The resident I had was a woman and she was determined to be right and look good to her supervisor. She and I seemingly butted heads immediately, we should be working toward the same goal, the safety of my baby, but her agenda seemed more about her than about me. I'll never fully know what her intentions were, I have never crossed paths with her to ask, but to this day I lay much blame on her for what was about to happen. The doctor was kind and decent, a man though and no offense to all you men out there, but you will never fully understand how it feels to be in labor. The pain was not intense or maybe it was, I am very high tolerance for pain and not much of a whiner. I was sure at this point something was wrong, but the resident felt otherwise. Their machines were not picking up my contractions, so therefor, in her eyes I was not in labor. Exams were done, they knew this was a high risk pregnancy, yet the machines were being trusted far more than my feelings were. I am a firm believer in gut feelings and at this point, even though the doctors are telling me I'm not in labor, I am scared for my baby's and for my safety. As I hit the bathroom for what felt like the hundredth time, my body seemingly clearing out, I hear them talking about me. The resident is telling the doctor that she is sure these are braxton hicks and they should just send me home. When I get back into the room, I tell Mark what I heard and that they are wrong, if they send me home we may lose this baby. Mark was strong enough to argue with the doctors, I knew he would trust me and protect me. I also start to trust my own feelings more and am stronger with the resident, when it happens. I was laying on the bed with monitors on, still she was arguing that the monitors were not picking up strong contractions. The bed was suddenly soaked, but because I had been to the bathroom many times and she wanted to be right so badly, she insisted I had just had diarrhea on the bed. When I insisted that that was not the case, the thick liquid was tested. It was amniotic fluid, so thick with meconium it looked like diarrhea. At this point I am finally taken seriously, and ultrasound is brought in, discovering why the contractions were not being caught, the baby had turned to breach position. I am unsure why this was an issue, but I do remember the resident was still very righteous acting, using this excuse as to why she didn't think I was in labor, why their machines were not picking up my contractions. When looking back, I often think about that "different" braxton hicks I took, leaning against the wall of my hallway, saying goodbye to my last daycare family for the day, as the time I believe the baby turned to breech. After all I had had an ultrasound within that day and she had been in the correct position for birth. At this point I know I am going to have this baby tonight and fear wrecks me. The doctors are called, but time seems to slow down as monitors are placed and the waiting begins. Looking back, I will never know why there was not a rush to get my baby out of me. She was obviously in distress, as she had flipped into breech position and the meconium were both signs of.  As we waited in a room, away from triage, I prayed to myself, tears and fear filling me. I was to have this baby by cesarian section tonight, it was no longer just a false alarm, she was coming. Mark held my hand, watching the monitor that was beeping with our baby's heartbeat and we prayed together.

Monday, June 27, 2011

Memories of Birth, Teale, part one

December 9th, 1998 started out as any other day. I had "made it" to 35 weeks in my high risk pregnancy after a scare just two weeks earlier. My husband had overreacted and called an ambulance because I had woken up bleeding. At the hospital it was determined I "just" had an infection and I was sent home on high doses of antibiotics. The goal was to make it to at least 35 weeks and I had made it, without a hitch. That day I had an appointment with the doctor who would be doing the gastroschisis repair on my baby after her birth. The meeting was to determine a final plan for her birth, we would pick a date for me to be induced. Because the baby was in need of surgery right after birth, all ducks needed to be in a row. The team of specialists needed to be available and ready to go as soon as I delivered. Although a bit more tricky than a "normal" birth, it was still determined it was unnecessary to plan a cesarian birth for this baby. Cesarians are major surgery and would be a much tougher recovery me. I was going to need my strength, as this baby would be in the NICU far longer than I would be at the hospital. So Mark and I had weighed the pros and cons by researching and talking to our team of doctors. We had decided I would be induced about two weeks early, in the controlled environment of the hospital, so I could be monitored carefully. This plan was helpful to many people, as Mark and I ran in home daycare and our daycare families could make plans also. December 9th was just like any other day, I woke feeling great and ran our in home daycare with Mark, except for the appointment time with our surgeon to pick our delivery date.  We would induce on December 30th, 1998. The kids would be off from school, my daycare families were able to find other help or take some time off fairly easily. The days were moving fast at this point in the pregnancy. They were filled with specialists appointments, ultrasounds, steroid injections to increase the babies lung growth and counseling for Mark and I to discuss our fears for this baby and ourselves. We continued running our busy in home day care and of course taking care of our active three year old son, Beau. As we said goodbye to our last daycare family on December 9th, I leaned against the wall and took what I thought was just a stronger braxton hicks contraction, it took my breath. I had been having braxton hicks many times while working my long ten hour day. This one was stronger though, different from the others. The family I was saying goodbye to was a close friend, we had gotten closer with our caring for her daughter. Over the two plus years of care she had separated from her husband and we had done much with her and her daughter outside of the daycare. Beau and her daughter were close in age and both of them were very active kids, enjoying being on the go often. That night a friend of ours was singing Christmas carols with his Barber Shop group and we were debating going when the "braxton hicks" took my breath away. I hadn't felt great for the last part of the afternoon, my stomach had been off, needing the bathroom again, I told Mark and my friend I thought I just wanted to stay home tonight. The snow was falling outside and the couch with a book and a cup of tea in front of a fire and the Christmas tree seemed ideal. So there I sat with a blanket over me, wondering if I was getting sick. I was needing the bathroom over and over again and the "braxton hicks," I was now questioning. I felt "off" as I called my friend who had had four children. We discussed what was going on and decided after a few hours of symptoms that "this might be it." I wasn't very sure, the pain was tolerable and to tell the truth, I just wanted to stay home on this snowy night. The thought of going into the hospital and sitting around for hours, just to be sent home was not in the least bit appealing. I wasn't ready, I couldn't be having this baby, could I?

Saturday, June 25, 2011

The Call~ Years Later

I was the co president of my neighborhood association and was running a Halloween Party. My neighbor and good friend was the other co president but she was "off" that day. I couldn't figure out why? She wasn't helping me, usually she & I worked so well together, but she seemed to be hiding in her house. Then she called me over and told me, she was pregnant. This would usually be a joyous thing, but she was due to go to China in just a few months to pick up a daughter. She had wanted three children and already had a boy and a girl. After a miscarriage she had decided she wanted to adopt her third child. Finding out she was pregnant was a big surprise and she was trying to process it all, four kids, two very close together. Wow, this wasn't the plan. This party couldn't be on a worse day, she needed to be with her husband and talk about all they were feeling, but we had a hundred people in our yards all dressed for Halloween. There was food to be served and small talk to be made. Our life was crazy, filled with therapists coming to our house daily to work with our disabled daughter. We also saw about 12 specialists for her many medical needs. Besides that we had an active son and an in home daycare my husband and I ran together. I felt for my friend, the baby they were adopting had a hole in her heart and would need surgery once she was back in the states. The delays had been many in the adoption process and I had cried along with her with every setback. We had already fallen for this baby from pictures and a video. My son was especially excited. One day a setback on paperwork had us all very worried and Beau asked for the "silver shovel." What he meant was the adult shovel that I used in the garden. I asked why and his response was "I'm going to dig my way to China and get the baby." Tears still fill my eyes thinking about how sweet & innocent his intentions were. I got him the shovel and he dug in the sandbox for hours. I broke down in tears when my friend told me she was pregnant, I was terrified this meant the baby waiting in China was not going to happen & how would I ever tell Beau? Her response was "absolutely not, we will still get the baby." So with that relief, I ran the party as best I could, not sharing our secret and trying to give her time with her husband. I was trying to keep things running smoothly but was in a bit of a fog when the strawberry blonde walked up to me. She introduced herself as a new neighbor and then said "I don't know if you recognize me, but I was the ultrasound technician who worked with you at the hospital?" I will never forget my response, all I said was "I threw up the whole way home!" What a way to greet someone, one of my most memorable responses ever, for sure! Luckily I had plenty of time to redeem myself, she lived down the street and we ended up becoming friends. Mark & I cared for her youngest son and we had another thing in common also. Her oldest son had had cancer years earlier and his hearing was damaged from the chemo. Teale is mildly deaf in the low frequencies and profoundly deaf in the high frequencies. Both of our kids wear hearing aids. I remember standing with her in my front yard during the chaos of the party and finding it unbelievable that she now lived just houses away from me. Why had she been so good to Mark and I when she did the ultrasound, were those doctors pushing abortion as hard as I remembered them doing? Questions I had often wondered about but never thought I would get the chance to ask. Had our birth been a fluke, all the specialist had said it was the best of all the situations it could have been, yet it had not gone well. Well, we talked then & have many more times since. She said she learned from our experience and no longer looks at a baby with gastroschisis as an easy fix. She also confirmed the doctors were harsh and pushing abortion. As I sit here typing, I wonder what the plan was in all this, why my friend got pregnant when she was hoping to "just" adopt one more child? Why Mark and I were blessed with the challenges of Teale? Why I often cross paths with people who are just simply amazing and change my outlook on life? And why my daughter often teaches, even the most educated people?

You Got to Have Friends

 School of the Holy Childhood sent a social story in the mail today to my daughter Teale. The story had PICTURES & NAMES of teachers & kids Teale will be in class with. This is to help her feel less anxious about the change in schools she will be going through this summer.  For those of you that don't know, a social story has simple text & pictures to help children with special needs through a new or difficult situations. Sometimes Social Stories give ideas about how to deal with a situation differently than how the child has been. Sometimes it is a story to teach/model appropriate behavior. In this case the story just illustrates some key people Teale will be with in her new school. As I flipped through the simple story with her, I felt overcome by emotion. This is so different from the HIPAA law excuses I was fed last year concerning inquiries about connecting us to other families in her classroom. We couldn't get a friendship list and there was not a class picture or a yearbook. Inviting kids to her Birthday party was allowed, through the school only though and only two kids came. I never received notice from the families who didn't come. I never could follow up with them with a phone call asking if they just forgot because I was not allowed phone numbers. My daughter can not communicate with her peers in a way other 12 year olds can. She can not say to a peer, "Hey, have your Mom call mine so I can have you over." She doesn't know her phone number or how to use a phone. Teale counts on Mark and I to connect her to others in this world. For the most part I would say Mark and I have failed badly at giving Teale friends. It is not for lack of trying, there are many factors involved, but my frustration with her last school was the lack of understanding they had at how important it is to connect these kids and families. Often families like mine feel alone, until they make a strong connection to another family like their own. Mark and I are lucky to have many good friends who get our life, but Teale has few friends. She has no close friends like an average 12 year old would. Mark and I are her best friends along with her sister and brother.  Anyway, after looking through the social story a few times and teasing her a bit about the adorable boy in her class. I then took Teale onto the SHCH FB page to look at pictures again. We have done this several times before. I have also taken her onto their website and both Mark & I have driven her to the school just to look at it from the outside. She has visited twice, the first time we ended the visit early because her anxiety kicked in. The second time she laughed with peers, which we found astonishing! She also smirked at us with a twinkle in her eye when we asked about her second visit! Today as we looked at the pictures, Teale said "It'll be fun!" She is finally understanding this change coming & seems to be excited! There is no way for Teale to feel even half as thrilled as Mark & I do. We have finally found our daughter a community where she will be loved and respected for who she is. We know this is the place for Teale. We are confident in it being a very special community where great things happen.  But even more importantly a place for Teale to finally have the opportunity to develop social skills in a natural setting that hopefully leads to her having real friendships!

Wednesday, June 22, 2011

The Call, the final chapter

So home we went, me still ribbing Mark for throwing me to the wolves instead of just calling my doctor. We laughed about all the people in our bed room that morning and what they were looking at, the vision of it all very clear to this day for me. I can't exactly remember the correlation between when this all took place and Thanksgiving, but my thought is it was right after Thanksgiving 1998. The month of December rolled in and we set a plan of inducing labor on December 30th, about two weeks before my due date. These babies could be born naturally and I was hoping for a vaginal birth. The team of specialists would be in the labor room with us and the details of what would happen after birth were explained. I was doing well, working full days in Mark and my in home daycare. I still had high energy because of steroid injections that were to help with the growth of the baby's lungs, should she come early. We saw the surgeon, my OBGYN, a pediatric cardiologist and a genetics doctor. There were the weekly ultrasounds, steroid injections and counseling for Mark and I, just in case things didn't go well. Beau was three and Santa would be coming soon. This was important to him, so we also tried to be on our game and had most of the Christmas stuff done. We had gotten a real tree and it was up, the house was decorated. The last Christmas picture of Beau alone was taken and mailed, afterall, we would not have this baby until after Christmas. We even sent a picture to the NICU, as Beau had been helped there after his birth and we wanted to have a connection again as we prepared to be there with our new baby. Most gifts were bought, and wrapped. But the one thing I had not prepared was a nursery. My courage about this project was lacking, I was skeptical, I was scared, I was realistic. What if there wasn't a baby to bring home, how would I ever face that room? That was the one thing I procrastinated and to this day it still makes my gut ache thinking about how I must have felt. I had this baby in me and knew she was alive and well, I saw ultrasounds, I heard heartbeats. Although Mark and I never found out the sex of our babies, we would guess based on the heartbeat rate. This baby's heartbeat was faster than Beau's had been. Since we were disagreeing on a boy name, but both loved the name Teale, we were hopeful it was a girl. I had come up with the name years earlier and we had kept it a secret, knowing if we had a girl, Teale would be her name. We like unusual names, but not way out there. Beau had been easy, Mark was nicknamed BoBo by his brother Todd. It had been a brother insult, after some big ugly wrestler in the 1970's. In HS some boys got wind of the nickname and he was called it by a select few. When Mark and I met on a local coed softball team, Mark was introduced to me as BoBo. I stopped calling him that, preferring Mark, but loved the idea of naming our son after him in this untraditional way.  So that is how Beau got his name.  I remember thinking it was tough envisioning a girl with gastroschesis, she may be more self conscious of her stomach and the scaring than a boy. Babies born with this do not have belly buttons, as the wall was not formed, so the pulling together of their stomach will not have a belly button. There were so many things to think about, to worry about, I was in constant thought about how this would be. Then I got the call that my friend had had her baby. She had done well and her son was in the NICU, we were invited to meet him. His surgery to fix his gastroschisis had gone well. Soon Mark and I were scrubbing at the sink before walking into the NICU to meet him. Little did we know how many times we would scrub at those sinks to go see our baby. I remembered the NICU from Beau's birth, but this was different. I asked a ton of questions, meeting nurses and looking around at all the critical babies. My friend's baby had been practically full term as I recall and was really quite sizable compared to many of the babies in the NICU. It all seemed surreal, this was going to happen to us and sooner than we thought.

Saturday, June 18, 2011

The Call, Continued

We went home and told some necessary people our news about the baby and then called the Emmens home. I got Mrs and explained the situation, they quickly volunteered to come over to our house and sit with us to talk. My memories about that discussion are vague, except his telling us that if I was his daughter, he would not recommend an abortion. These babies usually do very well and although it may be months in the NICU, recovery is very good. I hesitantly then asked the question I was needing to ask, is this a conflict of interest, our knowing each other so well? Would it cause a problem with his doing the surgery? His response was no, he would do the surgery and the beginning of a plan to move forward was begun. News spread quickly among family and friends that our baby was going to need surgery after birth. Our church family began offering support right away, knowing this could be a long haul. This pregnancy had been tough, I had been nauseous often and now with this news, Mark became even more protective of my well being. I was often exhausted and to escape the constant nausea, I napped daily. Those days are a blur to me though. I know I was scared and the gathering of knowledge about our baby's condition obsessed my every thought. I had many conversations with well meaning people who told me stories of people they knew who were born with gastroschisis and went on to do well. The ultrasound tech also had implied this was the best of situations. I tried to remain positive, but fear often plagued me. Ultrasounds were done weekly to check growth of the baby, who I still didn't want to know the sex of. I had a tough time gaining weight and was put on a high calorie drink three times a day along with my regular diet. My OBGYN set Mark and I up with a counselor, as the the risks were high and she wanted us to have a relationship with someone. Then there was the news that another woman in my OBGYN office was going to be delivering a child with gastroschisis. I found this incredulous, she was due just weeks before me so I asked that my phone number be given to her. When she called we immediately connected, having something so uncommon in common bonds people quickly. We had many of the same fears, the uncertainty was overwhelming at times for both of us. We had only been talking a few minutes when we discovered we were from the same home town, her voice sounded familiar, so I had probed for more information. She had graduated a year before me from the same high school and we had known each other well. How could this be? The odds of having a baby with gastroschesis were very slim and I knew the other woman delivering within weeks of my delivery? We joked that it must have been the water in high school and expressed how nice it was to be back in touch. We quickly became friends again, calling each other often. Our doctors were taking different approaches to the births and we compared notes. We both saw Dr Emmens and she had known his daughter a bit in high school also. We didn't have very long to go in our pregnancies when we connected with each other. I was getting steroid shots to pump up the growth of my baby's lungs, should she come early, my friends doctor had not recommended this for her. I loved the steroids, my energy increased and I finally felt good enough to eat, although my weight gain was still very low. For the entire pregnancy I gained about 13 pounds, but the weekly ultrasounds showed growth. I loved the boost in energy, but it was so great I read much most nights, only sleeping sporadically. I always read to escape my thoughts at night and help me sleep, but in pregnancy it was constant. Still to this day, I can not always remember a book I read during those long months of worry. One morning at about 32 weeks gestation I woke up and I was bleeding, bright red blood. Mark was already up getting ready for the first of the daycare kids to show up, he had been letting me sleep in, as sleep had been so hard to come by during the night. When I went to find him, he overreacted to the situation and to this day I still tease him. Instead of calling my OBGYN office, he called the ambulance. Within minutes I had several police, fire fighters and ambulance crews in my bedroom looking between my legs! Some thought they saw the baby crowning, some weren't sure what they saw, as this was not their specialty! Well, it was decided I needed to be ambulanced into the hospital. Mark followed in the car. At one point in the drive something happened that scared the crew and they put on the lights and took off, leaving Mark in the dust. He was terrified as he walked into the hospital to find me. There was was much confusion as to what was going on with me. Worry that I was going into preterm labor was high. I was a high risk pregnancy due to my babies condition, but also due to my son's birth that had not gone well either. Finally the diagnosis was that I had an infection and I was put on high doses of antibiotics and sent home. Hopefully I would make it at least two more weeks without delivery. TO BE CONTINUED

Friday, June 17, 2011

The Call

I remember it well, I was standing in the downstairs family room, where Mark and I ran in home daycare when he handed me the phone. It was my OBGYN office. Mark and I had agreed to refuse any extensive and or invasive tests on our babies during our pregnancies. I had gone to my last OBGYN appointment alone, which was unusual for Mark and I, but finding coverage for our in home day care was often tough and nothing exciting was going to happen at this appointment. We were about four months along, so we had heard the heartbeat, but were not yet scheduled for the ultrasound. Mark and I had discussed intently our beliefs around testing for any issues, neither of us believed in termination of pregnancy and we both would accept any child God gave us. For those reasons we did not feel the need to test for any possible disabilities. But as I said, I was at this appointment alone and the test was just a blood test on me, so I had it done. I remember going home and telling Mark that I had been unsure how he would feel about me doing this test and explaining that since it was just a blood test on me, I had done it. A day later I got the call. The woman on the other end said my AFP was abnormally high, as I recall it was in the tens of thousands. They wanted me to go for an ultrasound, but not at my office at the hospital with a specialist. I remember my gut sinking that day, this could mean many things but the most likely and scariest was that the baby had spinal bifida. It was not a false positive, the numbers were much too high, it was something, but what we did not know. Fear immediately took over my body, I felt guilty I had had the test done and worried about how to tell Mark and his reaction. He was near me when I got the call, he saw my face drop, he knew it was serious. Why had I done the test? My pregnancy just went from bliss to horror in one phone call. The ultrasound was scheduled for the next day, we needed to scramble to get our daycare covered so we could go together. I don't remember much about the time in between the call and the ride to the ultrasound, but I can still picture the waiting room very clearly. There was a prison inmate there with handcuffs on and guards with her, she obviously needed an ultrasound also. She was taken in first and then shortly after a strawberry blonde came for us. She introduced herself as Beth and we bonded easily.  Mark also being a strawberry blonde, there seems to be some unsaid connection red heads have toward each other. She listened to our story, we were married almost nine years, this is our second child, we didn't know or want to know the sex of the baby and we didn't believe in abortion for us. She started the ultrasound and discovered right away what the problem was, calling it the best of circumstances. The babies stomach wall had not closed and she would need surgery after birth to put her intestine back inside her body and to close the wall. Beth really wasn't supposed to tell us anything, we were supposed to wait until the team of doctors came in, but like I said, something about us bonded quickly. It sounded like pretty good news as we waited for the doctors to come in I remember feeling a slight sense of relief. The child wasn't going to have a spinal injury, but needing major surgery after birth which did sound tricky. The doctors came in and told us more about the condition, 1 in 30,000 babies were born this way. It was called gastroschisis and there were varying degrees, some babies needed many surgeries, some just one. The baby would be in the NICU until able to eat well on their own. There was risk of infection, of low birth weight, of being born premature, the risks were great and many. The surgery would be done as soon after birth as possible, to minimize infection. The baby would be placed into a sterile bag up to their arms immediately after birth and I would not be allowed to hold her at that time. That's about the time they offered me a late term abortion. I said no, we won't be doing that, firmly, knowing full well I had Mark's backing. The second doctor offered it again, directed more toward Mark this time, treating me like the emotional woman who couldn't make a sound decision. I piped up, saying Mark and I do not believe in abortion for us, we will accept this baby unconditionally. There were at least two more times in our conversation with these doctors that abortion was mentioned and my blood boiled more as they seemingly pushed the option on us. I had just seen my baby's fully developed face, I was in a loving marriage and she was a part of both of us, the doctors pushing abortion made me angry and upset. They acted like she wasn't a human, she was just a deformity inside me. I increasingly felt sick to my stomach, physically and needed out of that office fast. I needed to be with Mark, alone, I needed his reassurance and love. I needed to cry and talk with my husband, so I changed the subject after one more time, with a louder, more upset voice I told the doctors that we wanted a plan to move forward, we would NOT be terminating this pregnancy. Ironically, I had been good friends with a girl in HS that's father was a surgeon. I was pretty sure he was the right surgeon for this procedure. I asked about Dr Emmens and the doctors were impressed he was a friend of mine, saying he is the only surgeon in town that does this surgery. So we had a plan, I was going to go home and call Dr Emmens at his home and ask more questions. We left quickly and embraced in the elevator, all emotions letting go. I was angry at their pushing abortion and terrified for my baby, but hopeful Dr Emmens would take care of me. I had spent much time with his daughter Kim in HS, sleeping at her house often. I had a good relationship with her family, especially her Mom, so I knew they would welcome my call. On the way home I started vomiting, my body was reacting to the stress and fear in a way I had never experienced before. Mark was scared for me, I could see it in his eyes, how was I going to make it through the rest of this pregnancy? I had had a miscarriage just nine months earlier, so my fears were high. I know Mark worried how he would get me through a tough pregnancy and what if, as the doctors had told us the baby didn't thrive and we lost her?    TO BE CONTINUED

Friday, June 10, 2011


As I work through the housework I have somehow managed to avoid most of the week, I can't help thinking about the changes coming. Soon summer will be upon me and all three kids will be home, it will be a challenge. Gwenn, our independent one will do what she pleases and know she can slip under the radar if I'm busy with Teale. She'll make concoctions out of soap and flowers, calling it perfume. She'll get herself ice cream for breakfast and sneak to a TV somewhere, hoping to not get caught. She'll dump toys, then move onto something different and dump some more. Beau will be out and about with friends much. When home he will be hiding in his room, hoping I don't remember he is there so he doesn't get asked to help with anything. He'll be hanging with his girlfriend and I will be trying to make sure my presence in the house is felt by them both. He'll get his permit in August and my fears will increase as he takes another step toward independence. Teale will be controlling as usual toward me, Beau and Gwenn. She will want whatever one of us is doing. Whether that is watching the family room TV, that she thinks is hers or playing on the computer or using a basketball. Teale always thinks the family's stuff is hers. I will tiptoe around her moods, hoping to keep her even as the weeks of summer are tough on her. This year I will have a new challenge, my MIL. She is much like Beau and Gwenn in that she hopes to slip under my radar. She will try to stay in bed way too much, not shower and sit in front of the TV all day without so much as a glass of water poured for herself. I will be running ragged keeping an eye on these four and in between that, trying to do the housework and yard work that needs doing. After about two weeks of all four of them, Teale will go to summer school a good portion of the day. Then my summer usually begins, Gwenn, Beau and I will try to do things together some of the days. We will hike a water fall or maybe hit a theme park, they will have friends here, without the glitches of Teale being home, it is more peaceful. But the changes are many, Gwenn is more independent, Beau has a lot of freedom and a girlfriend who will have a car this summer, Teale will finally be at our DREAM school, School of the Holy Childhood. Then there is me, I feel a little more settled into my life again lately, I feel more content and less stressed. I'm not sure it has gotten easier, I just feel like the cloud has lifted a bit. Mark's Mom won't be easy to care for during summer months and this is my first summer with her here. I'll be running with the kids and most likely she will get away with doing less and not taking good care of herself.  She literally won't pour herself a drink if I am not home, I don't mean alcohol, I mean something hydrating. She will stay in bed forever without someone standing over her to wake her. She argues with me over much, but I was given the job of her care and well being and I don't take it lightly. So the changes may have some positives and there may be times I want to rip my hair out, but really, isn't that what life is???

Thursday, June 9, 2011

A Long Time Coming

I have been joking about writing a book for years. Our life is, well, different than what I know about others. Most people don't have an explosive child who they are occasionally scared of. Most people wouldn't understand the number of doctors and specialists who have been in our daughter's life since well before her birth. Most people wouldn't understand the number of medications we have tried on our daughter, hoping we would finally find the one that helped her. Her issues are numerous, Epilepsy, Cerebral Palsy, BiPolar, legally blind, deaf in the high frequencies, colonic neuropathy, reflux, sleep disorders including sleep apnea, intermittent explosive disorder, ADD, OCD, ODD & probably something else I am missing or that hasn't been labeled yet.  Her learning is very slow, not just academic learning but everyday learning. She is considered severely developmentally delayed. Part of me hopes educating people teaches tolerance for families like mine, part of me wants to document our life for the future. Already I " have forgotten" half the challenges we have been through. There were literally months of our life with Teale that she didn't sleep more than a few hours a day. Even to me, who lived through those days questions whether I am over exaggerating those months. She has had two hospitalizations for long term seizure monitoring. Each time was about 14 days long. Mark or I had to be with her at the hospital, 24/7, making life at home a huge challenge also. One of us slept at the hospital, the other one entertained Teale all day long. Teale was attached to about 15 feet of wire and we were stuck in the hospital room at all times on video monitoring. I liken it to being on real TV without the pay check. It was very difficult to keep our daughter happy, but the support we got was incredible. Teachers from her school came to visit, friends, our church family and of course our relatives. We would color, watch TV, play with sensory things like play doh or shaving cream. There were visits from hospital staff, Sponge Bob, a clown, dog therapists and music therapists. Mark brought his sax, nieces brought their violins, we would dance and sing and make the most of a tough time. The seizure disorder NEVER veered it's ugly head while she was attached to those wires, so we never got the information we were hoping to get. It was incredibly frustrating, but like so much in our life, we had no control. Then there were the two weeks Teale spent in the pediatric psychiatric center at the hospital. Talk about letting go of control. I felt beyond helpless after months of Teale not sleeping, I had never felt so close to suicidal myself. It was unimaginable to people on the outside, Teale would sleep the first two to three hours of a night and then be up the rest of the night. If you saw her during the day you would swear we must be delusional or lying, because she functioned fine. We tried many sleep medications, things that would knock out the average adult and yet she would wake after about two hours every night! Teale was only in first grade when this manic behavior took place. By the time her psychiatrist and pediatrician decided we needed to hospitalized her, Mark and I were almost at a total breaking point. We were exhausted beyond words and her doctors wanted her hospitalized not only to help her, but to give us some respite. The night Mark took my baby daughter to the psych ward was one of the toughest nights of my life. I had seen "One Flew Over the Cuckoo's Nest" and Teale was only six years old. Mark came home that night and we slept for the first time in months, but certainly not restlessly. Teale proved to the staff that Mark and I were not crazy, she did not sleep at all, tops three hours a night. Honestly, I remember feeling such validation that I wasn't crazy when she continued to not sleep at the hospital. They diagnosed her BiPolar and put her on Lithium, after two weeks we brought her home, still not sleeping but with the hope the Lithium was building in her system and would soon kick in. Some of my most proud moments in my life have been how Mark and I  have handled these hospital stays. We have put much thought and energy into keeping her safe and happy. We have mostly been in agreement on Teale's care. From the first ultrasound that reveled she had an open stomach and doctors offered us a late term abortion, we have agreed to fight for Teale. She has proven us right by winning fight after fight also. She was born unresponsive, 7 minutes without a pulse and her intestine and colon hanging out of her 4 pound 6 ounce body. After an intensive full resuscitation, she had less than three hours to recover before her first surgery. The risk of infection was too great and so the surgery to put her intestine back into her tiny body was completed before she was hardly even stable from her traumatic birth. Most people wouldn't understand life as we know it, but I believe we all have compassion for what others live. So, if someday that book that has been a long time coming becomes real, I hope it doesn't just tell a story, but teaches love.

Saturday, June 4, 2011

"I'm not sure if I find you two inspiring or sickening"

Mark and I have such a tough time getting sitters that can handle Teale that we started having "day dates"  a few years ago. He and I take the day off from work, while the kids are in school and spend it alone together. We avoid our endless to do lists and plan something fun, for just the two of us. Today was a "day date" but we didn't really have a plan, we were just going to wing it and since it was for my Birthday, I got to decide the day. We also had an extra bonus, our 16 year old niece was planning to get the girls off the bus, extending our date by about four hours. Teale was WRETCHED this morning, insisting "no bus today," fighting over getting bathed, over getting dressed, over brushing her hair, over taking her medicine, you name it, she fought it! Well, luckily we got her turned around and on her school bus, so our day date could begin. After catching our breath, we had to deal with just a few issues first. Then we were off to capture some PRECIOUS time alone, reconnecting with each other was our goal. We started with the Greek Festival, where we split some good Greek food and listened to some Greek music. Next we went in search of a gluten free bakery, because I am diagnosed with Celiac Sprue I am often in search of good GF breads and pastry. There is a Gluten Free/Vegan Free Bakery in Rochester called Eco Bella that I wanted to hit. I got a moon pie, (but they didn't have an RC cola ~ only you southerners or musicians would get that one, I think?) and Mark got a peanut butter bar.  We were in the same neighborhood my Father grew up in at this point and for some reason, I had been wanting to see my grandparents old house. Driving past it made me feel connected and I had been missing them lately. We went in search of it and I was embarrassed that I was no longer 100% sure which number it was, it had been so long since I had last been there. At that point we were near the graveyard my Mom and her Mom, my closest grandparent, are buried, so I suggested going there. Their plot was kinda a mess, the flowers and plants I had planted were not doing well and it needed weeding. I didn't have my gardening tools with me, so we just told stories about both my Mom and Grandmother. I love that Mark knew them both well and can remember much about them. We talked about the time that Mark thought these vines my Mom had growing were weeds and he weed whacked them, she had steam coming out of her ears when she saw what he had done! We were not yet married, so I think he was really worried, little did he know she would quickly forgive. Then there was the time he had to carry my Grandmother up the stairs to our only bathroom in our first house. My grandmother was frail physically, but she was still swift mentally and she often cracked us both up. I had to help her go to the bathroom and when I pulled up her pants I accidentally tucked in both her breasts. Oh how she and I laughed as I had to lift her breasts out of her pants and then again when we shared the story with Mark! She was a riot, I so miss her great sense of humor. I like going to their grave, it is a connection to them that brings me peace, something I never felt at a grave before the loss of my Mom. I miss both of them and often think about how much they would have enjoyed my kids. Mark and I talked and laughed and then quietly walked to our van, me wondering why I lost my Mom so young. Next, I had been wanting to take Mark to one of my favorite places, Corbett's Glen, surprisingly he had never been there. It is this great park in our area that I have taken Beau and Gwenn to several times. We walk in the creek, catch crayfish, hike through the woods and swing from a rope into a swimming hole. Somehow Mark had always missed out because he has been at work or maybe he had been with Teale, who would struggle to physically maneuver the trails and creek. Mark and I grew up only about 3 miles apart from each other but our lives didn't cross until we were about 20 and 22 years old. My family loved Corbett's Glen, Mark's family apparently never knew about it? It was fun to show him the place I often hung at as a kid and have taken Beau and Gwenn to. If you have never gone, go, it is one of those perfect childhood memories still etched deeply in my heart. Mark and I took a blanket, ate our treats from Eco Bella and laid in the sun. Relaxing is a huge luxury in our daily lives, so we were determined to fit in some down time. After a short hike we got back in the car and headed to a friend's new coffee place. Three Beagles Cafe, is along the canal in Bushnell's Basin, it is so tranquil there, like being on vacation just miles from our own home. We strolled hand in hand along the new trail, reminiscing about our 22 years together. Our friend, the owner was there, so we talked to her too. She had lost her husband to cancer about four years ago, I hesitated for a split second to bring him up, but knew it may be God telling me to. She talked openly, seemingly glad I had asked about him. I knew although it was unsaid, but both Mark and I wondered how or what we would ever do without each other. At some point she said to us "I'm not sure if I find you two inspiring or sickening." I laughed, wondering if others felt that way about us? We have an easy relationship that I know is very special. Our next stop was The Mendon Carnival, another place that would be fun with Beau and Gwenn, but Teale would find overwhelming. At this point I realize that all day we somehow had picked activities that Teale would find tough to do. It wasn't like it was purposeful, but maybe subconsciously it was? There hadn't been a glitch, there wasn't a worry, we easily went from place to place as a couple, alone. We had some food and a couple drinks at the carnival, walking around watching everyone else's kids. We listened to the Fireman's Band and we talked about what it was like to go there when we were teens. I remembered how it was always held around my Birthday and my friends would take me. We would try to win goldfish and of course check out the boys. As Mark and I walked around and ran into friends, we had conversations without interruptions and finished thoughts without worrying. We talked a lot about how Teale has changed our life, how our life is vastly different than we expected. We talked about how most people would not understand that, but that we are thankful for those of you who do. After awhile we needed to get home so our niece could leave. As we drove into the driveway, I heard laughter from inside and was glad to be home. Our life is not always easy, but days like today help me to get through the tough days.

Thursday, June 2, 2011


I turned 44 yesterday and was reminded how lucky I am to be so loved. Facebook posts, texts coming in, visits, cards, phone calls, gifts dropped by, flowers picked, meals out, hugs given; it was truly a day of love. 44 doesn't thrill me, quite frankly I don't like aging at all. 22 was my absolutely favorite year. I married Mark and had my whole life ahead of me. Our goals were similar and our dreams were big. Our life has taken many twists and turns since those years of naivety. We have, quite frankly, survived much but we are among the lucky couples that have just gotten closer through it all. Some days I can't believe how long we have been together. As I look at his handsome face and realize how much I still find him attractive, both inside and out, I feel blessed. This year marks the year I have been with my husband half my life, how strange to have been married as long as I was alone. His aging doesn't seem to bother him, I wish I was a person who embraced aging also. I wish I saw the good in it, but all I see is life moving by me much too fast and the many things I should have accomplished by now. I'm not filled with only regret, but there certainly are a fair number that spin through my head on a regular basis. The things I should have done, the things I wish I had done and the the things I still hope to do, that list is endless. I regret not spending more time with relatives that have passed, especially my Mom and Dad and Grandparents. I regret things I have done or said that have caused anyone pain. I regret not realizing my younger years were the easy years and not "saving" both figuratively and literally for these tougher, leaner years. Those are the big ones, those are the ones I put my finger on almost daily. Today I will start fresh and hopefully learn from my mistakes because I have and will make many more. And where I have no control I will pray for guidance and strength. Today I will set some goals for my 44th birth year. By 45 I will be a whole year wiser and suddenly 44 will seem young.