Teagan's Story: Part 3 "Do Not Be Afraid or Discouraged"

  "This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

Joshua 1:9

    There we were both sitting on a bench looking out onto the sand and waves that were crashing on the shore. The sound of the water, people walking, kids laughing, music playing and yet there was so much chaos in my head, that I didn't hear any of the noise. Sitting here looking at the beach waves and how serene this moment should feel. Just the day before we found out our time with our child is going to be very brief. Instead of counting the days until we met our daughter, all I could think of was how many days until she was no longer here.


    Jason and I praying and talked a lot that day in particular and in the days and weeks to come. It was so hard to walk along the boardwalk seeing other families with their kids and knowing that next year at this time our arms will be empty. Feeling Teagan kick knowing that I need to soak up every minute, every second, every little piece of her because she was safe in my tummy and right there with us at this moment. We decided that we were going to do everything we could do with her while she was still growing. We went to the beach, Rhode Island for vacation, spent time with our families and anything else we could think to do with her. We talked to her, sang to her, felt her dancing when music was playing, I ate sweet and spicy foods to see what she would do, tickled her little feet when they would kick me and even had beautiful maternity photos taken to capture this precious time. 
  
     She loved water ice and would always move like a wild woman! She even tapped her hand to the beat of a song that I played on my belly one day. She definitely got that from her momma :) She loved when Jason would come home and read or talk to her in my belly. She was definitely a daddy's girl for sure. Every time we had an ultrasound she put on a little show for everyone in the room. We realized as time was going by that she was one sassy and feisty little girl full of personality!
   
   We decided given the circumstance and the choice, the wisest thing to do was to have her delivered at CHOP. CHOP is one of the only hospitals that has palliative care for families with infants that are destined to have life threatening illnesses or disabilities. We had more appointments as the weeks and months rapidly started to pass by. We met with everyone from doctors, nurses,midwives, ultrasound technicians, genetic counselors, social workers and one very special woman who was our advocate and walked us through the process of developing a birth plan. She was so sweet and understanding with a background as a doula and in psychology. She not only addressed the physical part of the birthing process but discussed our emotional and spiritual health as well. She was there when Teagan was born and has spoken to us since then in such a compassionate and loving matter. Here I go getting ahead of myself, more of that later...


    Every appointment included our mothers and Jason's sister which was wonderful. To have the support we had was simply amazing and we are so blessed. Unfortunately, many people do not have those kinds of people to lean on and depend on. I pray that God whispers to their hearts and that they allow Him to fill those empty spaces. Even in the silent moments, we were able to see God working in our lives, and sometimes, we were not. We felt completely helpless and at times the thought of what the future was going to hold was incomprehensible. I was feeling Teagan kicking all the time and couldn't help but think that once she is born, she's not going to know what hit her. Many nights I stayed up until the wee hours of the morning just sobbing. I couldn't stop by mind from racing with all the anxious thoughts and my fear magnified with every passing day knowing it was one day closer to when I would deliver her. I absolutely loved being pregnant. I have no complaints. I just couldn't wrap my brain around how we were going to get through this. Even when I tried to sleep I was having many nightmares. I was so afraid that I was going to go nuts when this was over. I was fighting the inevitable. I am going to be a mother that loses her child. 

     The "never" thoughts were always playing over and over in my mind like a cheap recording. There is a greater story in the midst of all of this but I just couldn't see it. All the hopes and dreams I had for our little family and for our daughter were quickly being crushed. I will never bring her home from the hospital, be woken up in the middle of the night by her cries, feed her, cloth her, bath her, change her, hear her laugh, see her grow up, tickle her, read to her, be able to tell her I love her, Christmas mornings... She won't ever experience life really here with us, have a birthday, go to school, walk, talk, sing, make friends, walk down the aisle for her wedding, have her own children and care for them and many more things...the list is endless. NEVER will we know what she would have been.

      After having these thoughts constantly through my mind for quite some time, our lovely pastor and friend gave Jason and I a new perspective. What an amazing man of God who sympathized with our pain and affirmed a lot of our emotions. It was in these moments of anger and fear I finally understood a very important concept. If God is big enough for you to be mad at, then He is big enough to have a plan far beyond your understanding and that is greater than you could possibly fathom. I am not always going to be privy to what He has in store. Teagan was never meant to do any of those things I have listed. That is not her purpose. Her purpose is so much greater than that. This is not home. Heaven is our real home and here we are just a passersby. Teagan is going to a place where she will always be loved, happy, at peace and never know sorrow or pain. We cannot plague our thinking and lie to ourselves that she is "missing out" on anything. She's going to be in heaven for eternity living in the glorious grace of Jesus. He has just simply prepared a place for her sooner than we thought. She is going to be redeemed of any suffering from a sinful and fallen world. God has chosen us and endowed us with the responsibility of proclaiming this truth by way of giving our child back to Him. Our children are only ever lent to us anyway. 

      A very dear friend gave me some of the best advice when I was crying with her at church about how fearful I was now that the time was drawing near to be induced. She told me that God will give me the grace I need in the moment. I don't feel it now of course, because I don't need it now. When the time comes He is going to give me the courage to do what He has asked of me. Once I understood this concept ( after processing it for a long time because I had no idea what she was even talking about. Thought she was nuts!) I had a sense of empowerment. I can do this. I can do all things Christ has called me to do because He is the one that gives me the strength to do it! ( Phil 4:13)

      Before we knew it, August 20th had arrived and today was the day I was going to be induced. Silly Teagan girl did not want to be born beforehand. Long walks, bumpy, roads, big birthing and ball and even some spicy wings couldn't provoke her. I told you she was a feisty and strong-willed little girl. We knew she was always a fighter but didn't realize how much stubbornness she received from her mother and determination from her father. It was a surreal moment walking into the hospital with our bags and my big belly knowing we were going to walk out totally different. We had our game faces on and were hoping it was in God's will to work a miracle. No matter what, we were just so excited with all that this entailed, to just hold our little girl. Before goodbye we were looking forward to a very emotional and special hello. Trying to live it all out and take it all in just moment by moment. 

     My next post will be the last one in Teagan's story. No worries though, I will be posting other little stories or lessons we have learned in this journey as the Lord prompts me to write. Meeting her and our time with her is my most favorite part of course. If you are reading this, I want to thank you so much for taking the time to read my words and my heart. I know this isn't an easy topic to read but I hope it encourages you and you know how grateful I am to be able to share this with you. God Bless!

Teagan's Story Part 2 "Good and Perfect Gift"

"Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change." James 1:17 

    I couldn't help but notice the picture on her computer monitor as she asked me every question she had on her list about my family history and background. This woman who had come across somewhat pensive and curt with her responses was also a mother herself from what I could gather. The little girl on her desktop had the same face, skin tone and curly dark brown locks as she had. I was continuing to feel tense and anxious, but was not prepared for what was to come out of her mouth next. She looked down into the papers on her lap reviewing all the information she had from my answers as well as the findings from the ultrasound two days prior. Then she looked at me serious and asked the question that crushed my soul the moment it left her lips.

"Is there anything we may find today that would cause you to want to terminate your pregnancy?"

    

    I'd like to consider myself a kind and compassionate person. I'm definitely not kind and compassionate all the time of course. I have many moments when I look back and regret my thoughts, emotions and words when in particular circumstances like any other person does. This however, was not one of those moments. This mama volcano was now ready to erupt and my words were going to be the scorching hot lava that descends upon this woman. Up until this point she had me frustrated and anxious. Well, now I'm enraged, offended and quite frankly was ready to slap someone! ( Don't worry, I exhibited some self-control and kept my hands to myself). My response was less than friendly when I looked into her eyes and told her that abortion is not an option, this is MY daughter, I love her and the only One who is taking her life is the same One who gave it to her. She then proceeded to make some excuse, while not addressing my offended tone, to let me know that she "had" to ask me that and it's not personal. Say what?!?! As she wrote my "clear as crystal" answer on her sheet I added: "By the way, you can't write that in big, bold, black letters if you wish because I'm NOT going to be asked that question again."

   I'm almost certain I will blog a whole post on this moment and topic, but to keep things short in light of what is left to share, let's just say that the big, bold, black writing in which she wrote my response was almost able to be seen from space...from what I was later told. 

   How could she ask me that?! I hadn't even had the ultrasound or the consultation with the doctor and your going to assume that anyone is even ready or prepared to answer that? I grew more worried as to what was wrong considering the experience I just had. I proceeded to have the ultrasound done by a very kind and gentle technician. I saw the concerns with her femurs and kidneys on the screen which just crushed me as a mom. I wasn't giving up hope that it's something that could be fixed, but I was so scared. My husband was not able to come this appointment due to his job and even if he tried, and he did, I told him and any other person who wanted to join me not to worry. This wasn't going to be that big a deal. Yea, I know, stupid decision on my part. As I was escorted afterwards into a small meeting room, the technician looked at me with puppy eyes and tells me in a soft but concerned voice

 "Just so you know, you're in really good hands" as she closes the door behind her.

   By the time the doctor came in I was shaking and crying silently in my chair. Before I knew it he was telling me that "life's a b*%$#" and that this baby "isn't the baby I had hoped for". I was told by his findings that Teagan had bowed femurs, enlarged kidneys, facial deformities, fluid around her brain, heart pushed toward the left side of her chest, was most likely mentally retarded and from what he has seen before, may not survive past 24 weeks gestation. Now, before all of this had been brought to my attention he had tried to calm me and told me we are like family and that they would do everything they could for us. Needless to say I had a few questions to which the answers did not sound like they were in my favor. I was to have more follow-up appointments after this and paid for my visit as fast as I could and ran out of there. The people on the elevator most likely thought I was going into the labor by my heavy breathing, lack of color and look of terror on my face. All I could do at this point was get into my car and start screaming. I felt I couldn't breathe as the devastation and panic came over me like a tidal wave. My baby was sick. My baby may not live. This is my biggest fear and there's nothing I can do about it. After calling numerous people including my mother, husband, his mother and work, I calmed myself enough ( by my absurd evaluation) and drove to my in-laws who were home so I didn't have to be alone. I cried hysterically while driving and just cried out to God the whole way. Even now, this day provided one of the worst memories and experiences I think I will ever have. In my desperation, I heard a still, quiet voice say to me as I declared " Lord, I can't do this! I'm not strong enough for this!!" I heard Him say softly in a way only God can:

"You're right. You're not strong enough...but I AM. My power is made perfect in your weakness. I will carry you through this. I am right here and I will never fail you"

   I knew these words were true but believing them in that moment was a different story. All I knew to do was to keep saying it out loud with other bible verses I had memorized to keep as focused on truth as I could be. I would soon learn the difference between feeling afraid and living afraid. After another month of various ultrasounds, blood work and an amniocentesis, we laid quite a few of those initial concerns to rest. We now found ourselves at the prestigious Children's Hospital of Philadelphia May 2, 2014 for more testing since CHOP is one of the best hospitals in the world to treat what we were told Teagan's possible diagnosis would be. We knew she had some form of skeletal dysplasia due to her short and bowed limbs as well as her chest cavity. What we didn't know was that this appointment was going to tell Jason and I the most devastating news we will ever here in our time here on earth...or so we hope.

    Our mothers and one of Jason's sisters accompanied us to a day long battery of tests including ultrasounds, MRI, blood work, another consultation with a genetic counselor ( my favorite! Yes, that's sarcasm)) and ultimately meeting doctors and nurses in the end for a concrete diagnosis. I was extremely tired but excited near the end to see Teagan Joy in a 3D ultrasound. She just absolutely took my breath away. This little munchkin already had my heart but oh my, she was gorgeous. Besides my nose and chubby face, she looked just like her daddy. My heart skipped a beat at the sight of this precious miracle who according to the doctor a month back, wouldn't survive to this point. 

    It was the middle of the afternoon when we were finally escorted to a generous sized room with a long table, many chairs and the 5 of us sitting around it. We were met by a very well known maternal fetal medicine doctor and a seasoned nurse as we entered and took a seat. The doctor was very nice and soft spoken, however, she had a very serious tone that couldn't have gone unnoticed. She started speaking to us very slowing and paced as she explained what they had found. We were hopeful once she told us that Teagan was most likely not mentally retarded and what we were told was fluid in her head was just thickening (excess skin around the cervical spine area). She was very knowledgeable and started drawing her anatomy on a piece of paper and mapping out everything they found. I truly appreciated that because we all knew we weren't going to comprehend everything she was saying to us as this was alot to take in after a long day. It was then that our world came to a halting stop. She told us because of Teagan's cervical spine area, small chest cavity and deformed rib cage, she wasn't going to survive long after she was born. This baby has a small chance of living...just moments...an hour or two at best.

   I remember going into shock and not knowing how to react to what she just said. She very gently asked me if I understood what she just told us. I nodded at that point because I knew if I tried to speak nothing was going to come out. I was ready to just curl up in a ball and scream. I turned to Jason who was very quiet with tears streaming down his face. I could see on his pad of paper that he had written down some questions. He was shaking so much I don't think he could muster out any of them. I held onto his shaking hand as I proceeded to ask the questions he had written that we needed answered.

   Are you sure? Why?!! Where do we go from here? Did you really just say that? Is there a cure for what she has? Can anything be prevented? How long do you think she has? Is she in any pain? Where am I going to deliver? Is this baby going to make it another 16 weeks? So many questions...these are just a the tip of the iceberg as to what was flooding our minds.

    After the conversation progressed and the doctor and the nurse excused themselves, we all just cried and hugged one another. I wish I had said something more profound than "This totally sucks!!!!", but that's all I could say. Hopefully someone reading this has conjured up some words from the English language for this experience because I certainly have not in the 7 months since this has happened. Whatever comes to mind, just multiply it by infinity and that's how much it hurts. Agony.

   Our mothers and Jason's sister just embraced us as we tried to process what was just told to us. I remember them all saying they were sorry as tears washed over all over our faces but alot of that moment is such a blur. I do remember my mother turning to us and saying "All we have is right now... and right now, we have this baby. She's still here, We are going to love her and spend every minute fighting for her life. We are all here for you". 

    Everyone was in agreement. Jason and I may have some big worries, fears, anxieties and heartache, but we have an ever bigger God. God is the same yesterday, today, tomorrow and forever. He had and has a plan for Teagan's life. This is our child and we made the choice to fight for her and let her have the fullest life she could. At least here on earth. We believe she is perfect in every way and her life has meaning. He has not set her aide, but He has set her apart. Our precious little girl may not be with us a long time, but we are going to live to the fullest. Our love for her and our faith in Christ is stronger and outweighed all the unknowns of the future. 

   In the next part of Teagan's story ( yes, another one) I hope to talk about the 2nd half of the pregnancy and what God was showing us along the way about our faith, our lives, our family and Himself. Thank you for making it to the end of this post. There is just so much to tell which makes it a challenge to condense all the information into one post. May God bless you in abundance as I prayerfully continue to tell the story of our precious little daughter. Thank you so much!

Teagan's Story Part 1~ "We Prayed For This Child"

    ^"I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord.” And he worshiped the Lord there."

1 Samuel 1:27-28

         As a sat on the edge of the couch on a windy mid December morning, I could barely think as I bite what little I had left of my fingernails as my legs bounced from the nervous tapping of my feet. Staring into my cell phone waiting for a phone call that would forever change my life no matter what the outcome. Just an hour before hand I was sitting in a little room with a very sweet woman who I have come to know fondly as she took my blood in hopes that a positive pregnancy result would be the outcome. You see, at this point I was the most nervous I had ever been due to the 4 years of trying to have a baby, 2 years of fertility treatments, and 1 month after my first IVF cycle which resulted in 12 embryos. Yes, you read that right, 12!! Not to mention, a very hard and unexpected miscarriage just 5 years before. Is this the moment we have been waiting and praying for?! What happens if it didn't work? Where do we go from here? More importantly, what happens if it did...just when my mind starts to race the phone rings...

      It's the moment of truth as I start to sweat and feel the urge to cry from being so overwhelmed by all the emotions and looking back on all Jason and I have endured to get to this point. A friendly, familiar voice from the doctor's office gives me a very cheery greeting after I muster out a nervous "Hello" into the cell phone that I have "the grip of death" on as my hand shakes.

     "Hey Shannon! How are you?"

     " Umm... very nervous. I don't know how I'm doing...you tell me?!"

    

       Then, she said it...

     " Shan, your levels look good...YOU'RE PREGNANT!!"

     After ending the call, I basically threw my phone onto the couch, got to my knees and thank God for this little blessing. With tears swelling like a waterfall out of my eyes, I praised the Lord for the honor to be this little baby's mother. I remember saying to him out loud in my empty living room "Oh Jesus, no matter what happens, thank you for this baby."

     Jason walked in the door later that evening to a little baby stocking hanging with mine and to me on the floor just steps away from the door with a little bag of "baby's firsts" ornaments and other small treasures. His face was priceless as he tried to hold back tears and I tried to package my words a little more eloquently than " Hey! Guess who's expecting...this girl!". After tears of joy started streaming from both our eyes we just sat and prayed, thanking God for His faithfulness, this little gift, His perseverance and strength that He had given us to get to this point.

    I felt great during my pregnancy with the exception of fatigue in the first trimester and a sense of smell for miles. Haha. I never had any morning sickness, nausea or any of the many symptoms that I prepared myself for. My belly was growing and it was so precious feeling those first kicks from my little one days shy of finding out the gender and who we were going to welcome into our family. I couldn't wait to know and call my sweet little miracle by their name and feel an even deeper connection with him or her. Somehow we managed to have the ultrasound scheduled for April 1st! All I knew is this little one who at the time we affectionately called "Roo"( which was Jason's nickname as a baby so it was only fitting), better not play any crazy tricks on me today!

  As I went on to tell the technician about how this child better not be thumb sucker, I didn't even finish my sentence and my little stinker hand a thumb in the mouth! Oh no I thought....this little sassy baby...has my personality! Haha! "Very feisty one we have here!" The ultrasound tech said as we both giggled. It felt good to laugh because this ultrasound had already been over and a half long and my husband was still in the waiting room just bursting to get in to find out the gender. Finally the time came for the big reveal and Jason was brought into the room with me as we gazed at our baby on the monitor squirming around. "Are you ready to know? I figured it out within 10 minutes what the gender was but remember there's always a chance we can be wrong" We both took a deep breathe and we held each others hand waiting for the words to come out of her mouth. Tears were starting to swell in our eyes as she told us "It's a GIRL!"

   Jason and I were so overjoyed as we both had predicted beforehand that it was a girl. I just loved looking at him with pride and telling him "You're having a daughter...Daddy's little girl for sure". Even in the excitement Jason had to run to work for a very important meeting. Moments before he left the technician said she had to make a call to the radiologist so she stepped out of the room. When Jason finally opened the door to leave she happened to be sitting on the phone just feet away from the door. The look in her eye is a look I will always remember and can't quite put into words. I knew then...I don't know what it is...but I just had a bad feeling. It took over 2 hours for what should have been a routine hour long ultrasound. She handed me pictures of our daughter and said that if any problems arise my doctor would call me. The look in her eye told me that something wasn't right. I didn't know what to think and I certainly wasn't in panic mode, however I was definitely worried and uneasy when I left.

   Two days later there I was again sitting in another doctors office. They had found an abnormality in her femurs and enlarged kidneys as well. My obstetrician had recommended I see a top doc in the area for further testing and analysis. Now I was in panic mode. I was crying off and on the whole time while driving and tried to be "brave" as I prepared to go through yet another ultrasound to then be seen by a specialist. Before I had the ultrasound and spoke with the doctor, I was in a small room with genetic counselor who was cold to say the least. She did not seem interested in addressing my nervousness as I had expected or assumed and certainly wasn't helping put me at ease with the battery of questions she was asking. Some of the questions I told her I couldn't answer due to the lack of information I had on my family history as per her inquiries. I was growing more anxious, worried, irritated and frustrated as I wanted to know what was wrong with my daughter. She then proceeded to ask me one question in particular I was not prepared for and that would change forever how I view not only the world, but human life as well...

Part 2 of Teagan's story will reveal more of the journey ( When it's published of course) Everyone loves a good cliffhanger right?! Stay tuned... :)