The Reactions

For whatever reason this is a hard entry to write. Maybe it is because I still harbor a lot of ill feelings because of how hurtful reactions can be, even when they are meant to be helpful. It could be because no matter how many years go by I will always have to deal with those same reactions.

My reaction was easy, I was going to carry on with my pregnancy as normal as possible. I was not going to do anything drastic, I was not going to run out right away and make funeral arrangements. I firmly believed that God was going to allow me to carry my son to term, despite the doom and gloom the Dr.'s seemed to have. I would start working on creating memories, as many as I could. I received Bennett's diagnosis about 2 weeks before Christmas, so I knew I wanted to pick out a special ornament for him. I also knew I wanted a 3D ultrasound, I wanted to read him stories and sing him songs. I got a journal and started writing to him and about him. I wanted to document and remember everything about my pregnancy. I just didn't know what I would have once he was born, so I wanted all I could while he was still growing in the safe cocoon that was my belly. My reactions were easy to me, just do everything I could to remain positive and enjoy whatever time I was given to the fullest. It is truly when I get the reactions of others, I start to struggle.

I am still grateful to this day for the LPN that was at the Pasco Health Clinic in Port Richey, she was so incredibly supportive. Her reaction was simple and wonderful, do the best she could to give me excellent care and support. She would let me listen extra long to Bennett's heartbeat (even when he was being impossible and running away from the monitor). She even went the extra mile when we brought in Build-A-Bear recorders to record Bennett's heartbeat. She kept finding the perfect spot for excellent clarity until we had beautiful recordings of Bennett's heartbeat. The reaction of the counselor at the Health Clinic was nothing short of amazing. She wanted to do everything she could to ensure I was well cared for and treated with the up most respect. She even went through great lengths to get a meeting set up for me with a neonatologist at Tampa General Hospital. It felt nice to have such a receptive group of women taking care of me. They cared so much and let me know so frequently how proud they were to be a part of Bennett's life. There were a lot of these reactions. There were so many who came around my family and I and showered us with love and support. There were those that prayed with us for peace and comfort, who stood with me in the belief that God could heal Bennett, but held my hand with the realization that if he didn't I would have to say good bye to my son. There were those that held us when we cried and rejoiced with us when we were overwhelmed with the joy of life. I am so grateful to each and everyone one of these people, who reached out when someone needed them, not with their words but with their actions. I know that no one can truly understand this without going through it but there were those that recognized that. Those that did not try to understand or fix but were simply present. Present to give whatever support was needed at that time.

Then there was another set of reactions, the ones that still bring fire to my belly. I cannot tell you the amount of asinine comments I had to endure. I am hoping by sharing some of this that if you are ever faced with a situation and you truly don't know what to say, that you are dumbfounded by the sheer thought of the situation a person is going through you will do one simple thing: SAY NOTHING! Saying nothing and putting your arm around someone can take the place of a million comments. The truth is, while those comments are usually meant out of care and compassion they tend to create just the opposite, pain. As my amazing friend  and mommy to an angel Heather says "If it starts with 'At least' don't say it!". Examples would include; "At least you are still young" "At least you can still have other children" "At least you know ahead of time"- Get the drift? None of these comments are helpful, they are hurtful. Nothing will take away the fact that I am losing a child! Any comment that remotely resembles judgement could be kept to oneself also. Examples; "Are you sure you want to carry a baby that is going to die?" "Don't speak that it is going to happen over the baby, claim that God has healed him" "You should just act and believe as if God has already healed him" "Praying for time and accepting the diagnosis is like telling God you don't believe he can heal your son"... Those are to just name a few. I could go on for days with that one. If you want to support someone, support them. Unless they are making a decision that is putting themselves or others in danger don't judge that decision, accept it. After all it their personal decision. I'm pretty sure if anytime someone complained about money I just told them "Don't claim that over yourself, God will make you rich, believe it has already happened!" they would look at me like I am crazy. Accepting and preparing myself for my son leaving me is reality and I can promise it is NOT denying that God can heal. I guess that is what frustrates me the most, I prayed so hard for God to heal Bennett, but I also prayed that if he didn't to grant me certain things, which he did. How am I wrong to pray that? I feel that I would have been no better than an ostrich with his head in the sand if I would have continued on acting as if nothing was potentially wrong with Bennett. What good would that have done me?

The final reactions I am going to address is probably the ones that hurt the most. The first reaction is that my situation was about how it affected "them". Being told that I cannot talk about the life growing inside me at the family Christmas breakfast because it would "bother" my extended family killed me. It was the most awkward situation I have ever been in, and believe me I have been in some doozies. Talk about an elephant in the room, I had just gotten Bennett's diagnosis. Apparently it being too hard on the extended family to talk about meant I better pretend like nothing is going on. I mean seriously, it was all I wanted to talk about! Truthfully I wanted them to talk about it too. I wanted my extended family to recognize that I was pregnant with my son, recognize that no matter what the circumstance that he was going to be born! My sister-in-law at the time running out of my baby shower in tears because she just couldn't handle it and it made her too sad killed me. Every time someone made what I was going through about them, it hurt me so much. I was the one going through the situation, I was the one who was going to lost my baby. Not them, they had children, they had living, beautiful children. The second reaction is the ridiculous questions with feigned pity. First off, if you don't understand what is happening with my son, fine, but think before you ask. If you have to start a question with "I hope this doesn't offend you BUT" FOR THE LOVE OF GOD DO NOT ASK IT!!!!! Have some sensitivity!!!!!!!! Take a moment to think, "If I were going through this situation would I want someone to ask me this question?". Then after the questions is asked, and my offense is obvious, the look of pity, "Poor thing going through this...." Look buddy you just made it worse! Don't have pity on me after you hurt me!

Enough of all that. I hate to focus on the negative and again I reiterate that hopefully by me spelling out some of these reactions someone somewhere will think before they act and another mommy going through a hard time can be spared some additional pain. I will end with these words of wisdom... "If you can't say something nice, don't say nothin' at all", Thumper from Bambi.

The Diagnosis

The next day went rather quickly. It was hard to wait for the ultrasound that I really didn't want to have. I mean, what did it matter, I was going to keep my child no matter what the outcome, of that I was certain. I guess you have to give in and understand that you still have to have prenatal care, and part of that was going through this process. I had a very hard time listening to all the other expectant mothers, chatting about this and that, asking me if I was going to find out what I was having. It's hard to answer those questions when you know that in the ultrasound room you are going to find out if your little one will live or not. Other Mommies came in and out, sharing their pictures, "It's a Girl!" "It's a Boy!" "Look there's the face, the head, the toes...." It was a truly a relief when I was called back. The tech did the ultrasound, completely detached. I asked if her if she could please let me know the sex of the baby. I told her that we didn't get to that at the other ultrasound. I think she thought I was crazy, but she obliged. I walked out of the ultrasound with only two of the many pictures taken, I was going to have a boy!!!

They called me back into what seemed like a board room, asked me if I knew why I was there. Of course I did! This was the single most important day of my pregnancy to date! Long story short they confirmed the diagnosis and started to tell me my "options". I will never ever forget the look on this female doctor's face when I politely interrupted her and let her know I did not want to hear the options. I don't know if she really believed me, as she continued to try to hand me brochures about pregnancy termination through inducing pre-term labor (a nice way to say abortion). I pushed the brochures back across the table and reiterated that I did not want the "options", I wanted to know where we go from here. I told her I was a born-again Christian and that it is not my right or hers or any one's for that matter to decide when my son's life ended, it was God's and God's alone. I would carry my son until God saw fit. There was a young man in the room, he was an intern, I remember him because he gave me a reassuring nod and smile after I said that. I knew that there may be three or four doctor's in that room, but at least one person was listening to me. After some insulting remarks about why I would make that decision when my baby was going to just a be a vegetable, I was finally given a game plan for mine and my son's prenatal care.

If there is one passion I have it is that through education, doctors can become more aware of anencephaly, that they will take the opportunity to step outside of what their medical textbooks might say and look at every child as a human life. They said to me that I had "options", but only gave me one, termination. They never suggested I keep my son, didn't try to hand me a brochure about carrying a baby with anencephaly. I guess to them, "options" meant I had different options of how to terminate. To me the child I was carrying was MY SON, to them, it was a fetus that had no chance of survival outside the womb. I cannot imagine what decision I would have made if I did not have the convictions that I do as a Christian, or if I had not taken the time to find the information I did the night before. It angers me even now that doctor's would attempt to create such a sense of hopelessness rather than presenting all the possibilities. A life should never be considered invalid simply because it may not last as long as expected. (The soapbox I could get on about this, but moving on...)

I left that day with a diagnosis, but I also left with the assurance that my pregnancy would go on as normally as possible. I left that day knowing that I was having a son, and sure I didn't get to leave with the normal ultrasound pictures other Mommies get, but I had my two. Two pictures of his "boy parts", reminding me again that he was my little baby, he was perfect! Maybe not "perfect" in the eyes of some doctors, or what the world might call "perfect", but he was my perfect gift. God had made him perfectly for me! I left that day with the peace that my son would be loved here on Earth as long as God allowed, and then he would be brought to heaven to be surround with the love of our savior! He was a special little boy, a little boy that would only ever know a perfect, loving existence.

The Research

The drive to my doctor's office from the ultrasound facility was an emotional roller coaster. I had never felt so out of control, so lost and desperate. I remember hysterically crying, to the point that I almost couldn't breath. Even now when someone tells me how strong I am or how courageous I was, I go back to that moment. I didn't feel very strong then, and I still don't now. My Mom called a very close friend of the family, Gayle, and handed me the phone. Gayle sternly reminded me that I was still carrying my child, that they were still dependant on me, that my little one could feel my hurt and sense my anguish. When I heard those words something inside of me snapped. Gone was the fretting, out of control, sobbing Tabitha, in her place was resolution. I realized that it didn't matter what the outcome was going to be or if what I had just heard was true, what mattered was that I had the opportunity to be the best Mommy I could be, and that meant drying my tears, calming my nerves and letting the adrenaline leave my body. I would face this, I would go home and find out what anencephaly really meant. I calmly walked into the doctor's office and made my Level II ultrasound appointment.


Once I got home I fervently scoured the internet for information. What was anencephaly? What did it mean? What was the real prognosis? If I could only give one piece of advice to another Mother facing an anencephaly diagnosis it would be this: DO NOT UNDER ANY CIRCUMSTANCE WASTE YOUR TIME ON THE WIKIPEDIA ENTRY ABOUT ANENCEPHALY. I was horrified, I felt so guilty, but I was. My baby would look like an alien, deformed and strange. My baby would be a vegetable, if my baby survived it would be a tragic existence. No smiles, no coos, no movement. My heart was breaking, this just couldn't be. It just is not possible the little person growing inside me, kicking me, hiding from the heartbeat monitor, could be born as described.


I refused to believe what I read, so I kept searching. I started to find blogs, groups and stories of other babies with anencephaly. Stories of life, of hope, not of death and tragedy. Stories of babies who lived for minutes, hours, days, weeks, months and even years surrounded by love. Stories of babies who cooed, smiled, cried and snored. I was amazed! I knew that no matter what I would never choose to end my baby's life, even if I only got seconds I would treasure them, even if I lost my little one early I would make the most of every moment my baby was alive inside my womb, tethered to life through me. As long as my little one was in my womb, there was life until God decided it was time. I found a small granule of peace, I could make it through the next day, I could make it through the Level II ultrasound.


I remember going to church that night, my heart heavy with worry. I plead with God during praise and worship, please let them find a mistake tomorrow, if this baby is ill, heal them completely right now. It would be wonderful if we could all just get what we want, right when we want it, but sometimes God answers our prayers in other ways. Through my tears and broken heart I heard him whisper in my ear that this was his plan, that he held my little baby in his hand, that he formed this child perfectly and the scripture James 1:17 was pressed upon my heart. "Every good and perfect gift is from above and comes down from the Father of lights, with whom there is no variation or shadow of turning." At that moment in my heart of hearts I knew God saw fit to answer my prayers with preparation. I knew, and I have had some disagree with me on this, that I would not receive the news I really wanted that next day. I knew that my little baby was going to be diagnosed with anencephaly BUT I also knew that my child was my perfect gift, that the Lord had given this baby to me, and that he would be there, carrying me every step of the way. I think we all can think of a defining point in our lives when we really laid ourselves down, this was mine. I knew that if I placed this at his feet, that he would be there, he would carry my burdens, he would give me rest and allow me to be filled with joy! He would guide me, he would be consistent, he would never change and never will change. I felt peace, I knew that no matter what I was told at that Level II ultrasound, God was there!

A Picture Says A Thousand Words

Tonight I uploaded tons of pictures I have of Bennett to my Facebook. I was surprised when a sudden sense of anxiety caught me. I realized that it had been a very long time since I had shared those photos with anyone. It hurt me for a moment that I had been keeping so many of Bennett's pictures to myself because, in reality, I was afraid to share them. I was and still am so protective of him, of his memory. It is hard to be vulnerable and for me sharing so many of Bennett's photos is just that. Not because I don't think they are beautiful, but because of what they say to me. I see them and know that in some he was yawning because it was getting close to the end and he was having trouble getting enough oxygen. I see him and his special circumstance is a little more obvious in some than others. I can see the undertone of sorrow in some of them. In some ways I want to protect him, protect his image. On the other hand he is so beautiful to me, every picture an instant memory of that moment in time, I want to share every bit of it. I feel so grateful I am finallly at a place that I can openly and proudly share my son. Some people may look and feel that he looks "different", and guess what, he does. He is different, he is unique. He is an incredible miracle, a wonderful creation of God, beautifully handcrafted by the savior for his own purpose. Thank you Bennett for reminding me that life is beautiful, that God knew us before he even formed us, and he formed us according to his plan! I am so blessed and thank God every day he formed me to carry you and that being your Mommy was his plan for me!

Happy Third Birthday Benny!

Today I get the honor of celebrating my son's third birthday. Sometimes it's hard that I don't get to go buy him presents or invite his little friends to a party. Instead I get the immense privilege of celebrating the gift he gave to me, his life and love. I am still so floored when I celebrate Bennett's life, amazed at how much one small baby can touch so many. It's hard to believe that it has been three whole years! I often wonder what he would be like if he were still here. How much those chubby hands and cheeks would have changed. I get a laugh when I think about how bow legged and pigeoned-toed the poor kid was, I am fairly certain braces would have been in order. Would he still softly sigh in his sleep and make those small little snores as his breath goes in and out? I know that heaven is so much more beautiful than anything I could have ever given him here on Earth, but the truth stands that it doesn't really make it too much easier to not have him here. I don't get to to walk into his room on his birthday and wake him up with a birthday song, instead I walk into a room full of his memories, where his scrapbooks and pictures fill the walls and bookshelves. I get to watch what small amount of video we have of his time here on Earth, the joy of seeing his little face again wrapped in the sorrow that it will forever be back in that moment of time. I still get to plan a party! Tonight we will have cupcakes, go to a baseball game and release balloons. I get to plan two parties!! Tomorrow we will eat more cupcakes and release more balloons, celebrating Bennett's three year heavenly birthday! I have a feeling that there are plenty of tears to come, but this morning I smile, and fill myself with the promise that I will get to be with my son again, and that the time I spend here on Earth is but a small blip in what eternity will be in heaven. There is a song by Steven Curtis Chapman called Heaven is the Face, hopefully I can share the link, but it so perfectly encompasses how I feel. I know that Heaven is going to be more than I can ever imagine, but for me, in my human mind, heaven is the face of my baby son. Heaven is Bennett's strong hands around my fingers and his smile when I touch his cheeks. Heaven is his warmth in my arms and his soft sighs in my ear. I am so thankful for the time I was given with my son. I miss him everyday, but I know he enjoying heaven so much! Bennett, thank you for your life, thank you for your love. Thank you for making me the person I am today. I love you my Baby B, you are always so close to me in my heart! Sing to Jesus for me! I can't wait to see you again and hold your hand as you introduce me to my savior! Happy third birthday Benny! Mommy loves you so so much!!!!

http://youtu.be/-3Mj6iOG1xM

The Ultrasound

It never crossed my mind that the anatomy ultrasound could also be the defining point of my pregnancy, that nothing would ever be the same again. After all, my baby's heartbeat was normal, my pregnancy was normal, I was healthy, my baby was certainly healthy. I will never forget the day of that ultrasound. I woke up so excited that morning, I couldn't wait to see my little one on screen for the very first time! I was going to get to see my baby's hands, feet, legs, arms and everything in between! My Mom and sisters were going with me, they shared my excitement. Waiting to be called back was so trying, with a full bladder and anticipation overwhelming me, I could have sworn I was in that waiting room for hours. Finally it was my time to go back. All of us girls filed into the room, giggling, smiling, I felt like I was ready to burst (not just from excitement either, those who have had that ultrasound know the persistent pressure on your bladder courtesy of the recommended 32 ounces of water and hour wait time)! I laid down and the ultrasound started. How breathtaking to see that little life inside you on the screen, to see that they are a little baby. There were the legs I had felt moving around! The feet with 10 perfect little toes! We couldn't get a good shot on the sex, but the tech assured me we would go back to it after we took some measurements. She started clicking away, showing me his kidneys, his heart, his liver. What an incredible miracle to see life in the process of development! My baby was so real to me! The arms reaching out, the hands moving, those little fingers! Then there it was, my baby's face, the tech pointed out the nose, the mouth, the eyes. Then she paused....

I will never forget the change in the ultrasound techs eyes, the corners of her mouth moving from the upward position of a smile to the flat line of concern. I know she tried to hide it, she kept smiling at me when I would catch her eyes. "Maybe your bladder is a little full, why don't you got empty a little bit?". The walk to that bathroom was so long. I remember sitting on the toilet, the ominous feeling of the situation engulfing me something wasn't right, something just wasn't right. Followed by the faint glimmer of hope, maybe it is because my bladder is full, I know I drank a lot of water? I really had to pee. I slowly made my way back to the room and laid back down on the table. She kept moving the wand around, back and forth, back and forth, digging, pushing. I could tell she was trying to find something, something that didn't seem to be there. It was only when I looked into my Mom's eyes that I knew, I knew something wasn't right, something was definitely not right. My Mom smiled sweetly at me, but I could see the fear in her eyes. I remember looking away from the screen, scared of what I might see, staring at the wall, tapping my fingers on it, praying that she would all the sudden say "Look! There it is!". Instead she excused herself to go and get the supervising technician.

Everything moved in fast forward at that point. The man came into the room, moved the wand around in the same searching manner, his mouth drawn in the same flat line of concern as the techs. My Mom's eyes gave her away. She was trying to be reassuring, holding my hand, but I could feel her shaking. She had had six children, she of all people knew what they couldn't find. She knew something was wrong. The man looked at me, asked me to get cleaned up and told me I would be escorted to his office. The tech looked like she wanted to apologize, she gave me the most haunting look of pity and left the room. Mom helped me get ready, the size of the ball in my throat even now is nothing in comparison to what it was then. Mom let me know what they didn't see, it looked like the couldn't find the top of the baby's head. What? How could that be, I saw the face, the ears, how can that just not be there it doesn't make sense.

I waited for what seemed like hours for the man to come back and tell me what was happening. He finally came to speak with me, handed me some brochures, of what I cannot even tell you now. Explained to me that they could not find the top of my baby's head, that he was fairly positive it just wasn't there. I remember asking him what that meant, was my baby going to be mentally handicapped? Would my baby be deformed? He said he couldn't give me a diagnosis, I had to have a Level II ultrasound, to confirm what they believed they saw. After I asked him again and again, with tears streaming down my face, I guess he took pity on me and told me he believed my baby had anencephaly. I asked what that meant, his answer, your baby is going to die, anencephaly is fatal. In an instant my world faded, I had no breath, this just couldn't be. The tears started falling, I had no words. I left the office to head over to my OB, to schedule my Level II ultrasound. I left my baby's first ultrasound empty handed, no pictures to share, with only the words of that man ringing in my head.. "Your baby is going to die. Anencephaly is fatal."

The Beginning

The best place to start a story is in the very beginning. I will never forget the day I realized I was late, really late. Four different branded positive pregnancy tests later, I was setting up an appointment at the local clinic. Getting pregnant was not part my plan, but the very first moment that test read positive I knew my plan didn't matter anymore, I was going to be a Mommy, I was already a Mommy. I remember that once I got over the shock, I was excited. Being a Mom was something I always wanted. Granted being a single mom was not my ideal situation, but I had an incredible support system. I never disliked being pregnant, even when the morning queasiness hit me. I enjoyed finding ways to keep it at bay, while watching my tummy steadily grow. I will never forget the first time I heard my baby's heartbeat, the amusement I felt when my little one pushed away from the monitor (he seemed to enjoy making it a difficult task to get a good read on his heartbeat). I will never forget the instant connection I felt to the little life I had growing inside me.

As my pregnancy progressed normally I settled into the role of motherhood. I started watching all sorts of birthing documentaries, doing research on the best baby furniture, reading pregnancy books and of course tapping into the best resource I had, my Mom. My excitement just could not be contained! Every prenatal appointment went well, I started to feel all sorts of little flutters. I refused the AFP test, because I knew, despite the results I would keep my baby. I mean after all, if they did have something wrong, I would trust God to care for them. I wasn't scheduled to have my second trimester anatomy ultrasound until 18-20 weeks, but at my 16 week appointment I was measuring a little large. It was assumed that I was just a little farther along than we originally thought, so I was scheduled for the anatomy scan. As a first time Mommy anatomy scan meant only one thing to me, I was going to find out if my little one was a boy or a girl!

Bennett Elijah

June 16th will be three years since I welcomed Bennett into the world, and it will be three years June 17th since I held him while he took his final breath. It has taken me time to find the courage to share Bennett's story, for many reasons, most of which stem from my own fears of the reactions that I might recieve. Friday I had the opportunity to meet an amazing woman, Heather Walker, who through her journey with her Anencephaly Angel Grayson James Walker, has inspired so many people, even me. I was reminded that God has a plan for every life, no matter how short the time spent here on Earth, and that Bennett's light needs to shine! God gave him to me, as my perfect gift. Now it's my turn to let him be a gift to others; a gift to remind us of God's unfailing love, his enduring grace and never ending forgiveness.