Life Goes On... Or Does It?

I have come to realize that Bennett's life was the one event that my entire life is going to be birthed from. In one way I find myself feeling overwhelmingly lucky to be able to say that I know, without question, the event in my life that defines me. On the flip side, I feel rather unlucky that my particular event is the loss of my son. I have lived in and out of turmoil for almost 6 years while I struggled with my grief. It has also become apparent to me that taking on this challenge, carrying and mothering a baby with a fatal birth defect, would have lasting effects I could have never seen when I made the decision to carry Bennett. In no way am I saying that I wish I had made a different decision, instead I am saying that I wish I somehow would have been better prepared. I wish that, despite other Mom's telling me that it would be tough, someone would have been brutally honest with me. I wish that I would have had a "grief mentor" if you will. I realize as soon as I say that I scoff at myself and think, "As if I would have cared what they said, read their blog or listened to their experience." I am stubborn. It's an integral part of who I am. I don't know if I would have been willing to receive someone trying to 'mentor' me through the grieving process. When I start down this trail of thought my mind immediately jumps at me and screams "BUT YOU DIDN'T WANT ANYONE TO MENTOR YOU! YOU DIDN'T WANT ANYONE TO TELL YOU THAT EVENTUALLY YOU WOULD FIND A NEW WAY TO LIVE! YOU DIDN'T WANT TO LIVE, YOU DIDN'T WANT TO THINK ABOUT LIFE WITHOUT BENNETT" And my mind is right! What I wanted was someone to yell at God with me, I wanted someone who would be willing to say "I had those hard thoughts too" or "You aren't totally crazy" or "Hey, it's okay that you just a complete meltdown almost 6 years later about a children's book."  If you take anything away from this paragraph take this: after loss, every thought turns into you finding yourself seesawing between ideas that just happen to be polar opposites of one another. But enough rambling...

When I started this blog I wanted to tell Bennett's story. I started in the beginning and relived some of the toughest points of my pregnancy. However, I have come to realize that Bennett's story isn't just the story of the life he lived here. His story is the story of how one small life impacted so many people. How his life impacted me. I am his story and he is mine. I am tired of hiding the real story. The real story of the struggle to find peace with God, the real story of living with a broken heart, the real story of walking around every day with a piece of my life missing. That's the real story. The real story is that this weekend I was on a committee for a Character Breakfast. I thought, "Sure, why not? This will be fun! I can plan a Character Breakfast!" Do you think I stopped to think for one moment what being a room with 100 children overwhelmed with excitement at the sight of their favorite character would be like? Do you think I said, "Hey Tabitha, are you sure this is a great idea? Have you thought about how this might effect you? Are you positive you can handle it?" If you think I did, well you are wrong. See that's the trouble with grief the further you get from THE EVENT. You start to forget how intricately woven it is into the fabric of your SELF. You start to make decisions without factoring the grief in. I find plenty of blogs and articles about right after the loss, or even a few months to a couple years after, but how many of us really talk about how the grief continues to rock our worlds?

I wonder if we have this idea of time in our heads, like, it's been enough time. Nobody wants to hear me rant about the fact that while at that Character Breakfast I wanted to make a fast break for the door; that I wanted to scream at the mother ignoring her child. What about that in the moment Batman spread his cape out and all the little boys oo'ed and aw'ed I had the intense urge to turn to a little almost 6 year old boy and say "Look buddy! Isn't that cool!"? Let's talk about how I turned only to be smacked in the face with the cold, hard reality that no matter how many times I turn my head that little boy is never going to be there. It reminds me of when I was a teenager and saw Titanic. I watched it again and again, each time hoping, someway, somehow that the ending would be different. That the ship wouldn't sink. That thousands of people wouldn't lose their lives. I feel like I live everyday not knowing anymore when my next Titanic is going to hit. In the beginning I avoided any and all situations that I even thought might be difficult but then you realize that you aren't really living, you are just existing. The shitty (excuse the French if you're reading this Mom) reality is that unless you plan on tunneling in you eventually have to start living. It's necessary. 

I had always looked forward to the day that I started living. I had waited with bated breath for the day I woke up out of the fog. The day that I realized life will go on and I am going to be okay. When that happened I greeted it with welcome abandon. Today I would be lying if I didn't say there's a part of me that wishes I could go back to the fog. At least in the fog I didn't really care. All that mattered was taking care of me. Since I have decided to really start to live that means I have to do things I don't want to do. I have to stretch myself. I still have to take care of myself of course. However, no longer can I allot myself the liberty of licking my wounds in isolation. Frankly, that sucks. In the beginning I could have ran out of that Character Breakfast and explained that my loss overwhelmed me. Oh the compassion and understanding I would have gotten. Try explaining to someone that you had to run out because 6 years ago you had a son who had a fatal birth defect, you just tried to talk to the air that exists where he should be standing and that being around all those kids is sending you into an out of control grief spiral. Pretty sure you're getting a one way ticket to the crazy house. I could be totally wrong, but that's how it feels.

My point is, I am tired of hiding. I am tired of pretending. I am tired of saying I am okay when I'm not. While I am grateful that I am living and I am finding a way to see the JOY in my pain, my life isn't the same. It's never going to be. My life is going to go on but not like everyone else's. My life is going to steadily progress forward while my son's does not. I will never get to experience the joys of motherhood that would uniquely belong to him. So while the story of my pregnancy is important and the story of his life is invaluable (we will get back to that, because frankly he rocked it while he was here), I'm also going to tell the story of my now, of a lifetime with grief. Because that's the sticking point, no matter how much I heal, despite the amount of grieving I do, my grief is going to be around, for my lifetime. My grief and finding life in it is my story. 

Baby Steps

For Bennett's 4th Birthday my amazing Mother had this song written for me. I decided to try my hand at a little movie making. The song is meant to come from me to Bennett. It was so healing to go through all his photos and find the right ones I wanted for each part. Thank you Mom for such an amazing gift!

The song is meant to say that the journey through grief is a series of just that, Baby Steps. Healing doesn't happen overnight, that there are days some of those steps just happen to move backward instead of forward. One of those Baby Steps for me is to finish writing Bennett's story. It is hard to put words to some of my most painful, tender and beautiful memories. I am looking forward to the healing I know is in store for me.

The amazing young woman of God, Rebecca Chase, who wrote this song said something in her blog about the song that touched me. She said "I find that there are small traces of joy that had sprouted after a life 'storm' had passed". This reminded me that there is so much joy that sprouted in my life from Bennett. Yes, losing my son, carrying him knowing that my time with him would be limited, that was a storm but there is just so much joy that came from that storm. There are so many rainbows that continue to bring beauty to my life. I am continually grateful that the Lord called me to surrender the very desire of my heart to him, to lay my son on the altar, so that through him, through this storm in my life, God's unconditional love and his promise of restoration would be evident to so many. I look forward to whatever time I have left in this life, so that I can continue to watch the joy from this storm in my life grow.

It makes me think of the Gungor song, 'Beautiful Things', which has become my mantra during this season of healing in my life. I am reminded that God continues to make beautiful things out of my pain, out of what I feel is lost, out of ground I feel is dry. I cannot wait to begin this part of my journey through the grief of losing my son, to embrace the freedom that comes with the acceptance of Bennett's life and of who I am because he lived.

Gungor- Beautiful Things (lyric video)

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