Daniel’s story Day 1:
We were high school sweethearts who became husband and wife in 2008. Once we were married we wanted some time to set ourselves on a good path before starting a family. In 2012 we decided we were ready and as naive twenty-some year olds didn’t think that our decision might not be God’s plan. We tried for about two and a half years to have a baby becoming frustrated and feeling defeated. People kept asking “when are you having kids” and every time it took all I had to keep from breaking into tears and telling them you have no idea how hard we’re trying. We decided to seek fertility help and finally got some answers. In January 2015 we did our first month under the care of the physicians at Reproductive Health Specialists, no baby again. We kept wondering if we would ever have a baby. In February we did the same process expecting the same outcome but instead there was a double line. I broke down in tears when after dozens of pregnancy tests this one was finally positive. I knew it had to be a bad test so I took another one and two lines came up again! We were actually pregnant. I was so grateful and I remember thanking God for finally giving us a baby. As soon as Bill got home I walked in the kitchen and told him we were pregnant. (I know no fancy announcement but I never thought it would happen so I never planned anything). His first response was “no way you better take another test”. I told him I did and showed him the second one. We were both so overcome with emotion that we are finally going to be parents. We were filled with joy and love for this little one in a matter of moments. We were having a baby!!!!
Daniel's Story Day 2:
We were so excited and could barely contain it when we returned to the specialist's office that week. But there it was on the screen, a tiny little spot that was our baby. The whole ride home we talked about all the things we needed to do. It was such a happy moment driving back from that appointment. Our next step was to determine what doctor we wanted to see for our prenatal care and delivery. I began asking everyone with children about their doctor. It was a full-on interview of people about how their doctor acted, what they liked best, and which practices have the best appointment times. When speaking with a former OB nurse about the local physicians she told me a little about each one. There was one doctor that caught my attention and I knew immediately he was perfect! By this point Bill was fairly tired of hearing about the local physicians so he was thrilled to know I choose one. I called the office to make our first appointment and eagerly waited for the date to arrive.
Daniel’s Story Day 3:
We were full of anticipation in the waiting room my hands full of files for our new doctor. By this point we were about 9 weeks along and I was already so excited to meet our little blessing. I remember sitting in the waiting room with the same quote running through my head “With patience and love we waited - with excitement and joy we welcome you”. It was a quote I read so many times while waiting for my exams at our specialists office. Every time I was there I read it and thought please let this be the day it comes true. We went back to the exam room and began answering pages of questions for our initial visit at our new doctor. I gave the lady all my files from the specialist and reviewed in detail our exams there. Once we finished all the information Dr. Hojat came in introducing himself and asking some further questions. He asked what brought us to him and I began reviewing how much I studied the local docs and he was so highly recommended that I knew he was the right doctor for us. He was so humbled and thanked me for choosing him. His humility and kind demeanor assured me that he was perfect and our baby would have an awesome doctor in him.
Daniel’s Story Day 4:
It was an adjustment to go from weekly appointments at the specialist (with frequent ultrasounds) to a regular appointment schedule. We had already had 3 ultrasounds seeing the baby form from a follicle to our sweet little 8 week old, so waiting until our 20 week anatomy scan seemed like forever. In the meantime, we started sharing our joy of becoming parents by even posting a picture of Maddy and Felix with a case of pampers diapers on Facebook. Everyone around us was excited and eager to meet our little one. We made so many plans and started getting the nursery together. We got the crib and dresser home with the plan to prep as much as possible during summer while we were off work. I searched and ordered the perfect baby jungle animal border to complete our nursery. We didn’t want to find out the sex of the baby ahead of our delivery (because we wanted to joy of being surprised) so we were keeping everything gender neutral. Our 20 week ultrasound was coming up as we got the crib together and left the dresser in the box for another day. All I could think about as we walked into our appointment for our anatomy scan was how excited I was to see our sweet baby again. We waited eagerly to go back for our scan not knowing the turn our life would take that day.
Daniel’s Story Day 5:
We were 19 weeks along and ready to see how big our baby had grown. She called my name to go back for our anatomy scan and we both approached the doorway. The ultrasound technician, Jane, asked for Bill to stay in the waiting room and said she would come get him once she was setup. She began the scan showing me the heartbeat then went to get Bill. We told her we didn’t want to know the sex of the baby and she was adamant she would keep it a secret but informed us that she always says “he” so not to be alarmed. She pointed out the baby’s arms, legs, organs and spine, took lots of measurements, and printed photos for us. As she was taking the measurements she explained that the limbs were measuring a little short and there was some fluid showing on the brain but that could be something that goes away on its own. She explained that Dr. Hojat would look at it and talk to us about it after the ultrasound. My mind automatically reassured itself that the baby is fine. We will talk with our doctor and I’m not going to worry because the baby is fine. The scan was completed and we waited for what seemed like forever for Dr. Hojat to meet with us. During our wait time in the exam room we began discussing what this meant. Is the baby just petite? Maybe he or she got my genes and is just short. What could the fluid mean? I’ve taken all my vitamins and have watched every single item on my plate so I’m doing everything right. I don’t smoke. I don’t drink. We don’t have any complications in either of our families. The baby has to be okay because there’s no reason for something to be wrong. As we were talking through it there was a knock at the door and in walked Dr. Hojat.
Daniel's Story Day 6:
When Dr. Hojat entered the room we were all silent for a moment. I remember asking him to be honest about what's going on with the baby. Anyone who knows me knows to shoot straight because I appreciate honesty. I needed honest answers from him so I could process what we needed to prepare for. I told him that I think the baby's limbs are short because I'm short and asked for his opinion on the baby's size. (How naive I was but doing my best to rationalize it) He began speaking in his kind, soft tone giving us honest information based on his medical knowledge. He explained that the baby's limbs are measuring about 4 weeks behind which they could grow but we needed to monitor them. His main concern was the fluid on the brain. There was more fluid than usual and he was concerned about the pressure of the fluid affecting brain development. I asked about the fluid going away on its own or doing something to take it off. Dr. Hojat explained that the fluid on the brain will potentially cause some disabilities for the baby. I remember thinking how "non-shocked" I was to hear that. For the years we were trying to get pregnant I began telling God that I will take any baby he gave me even a sick baby. So I thought this was my prayer of having a child no matter what. My mind instantly went into "Nicole will fix it" mode. I started asking what do we need to do to help the baby and how can we make it better. I explained how I am a special education teacher and can handle whatever the baby would need. He explained that he wanted us to get a second opinion and that his office staff was on the phone with West Penn Hospital trying to get us their next appointment. One of the staff ladies came in with a date of July 23rd for our appointment with the specialist at West Penn. 13 DAYS!!!!! We had to wait 13 days to get more answers. We didn't tell anyone about the reason for the West Penn appointment and I don't even remember us telling anyone we had an appointment there. We agreed that we weren't sharing any bad news with anyone until we had direct answers and weren't going to worry everyone if there's nothing to worry about. The next 13 days felt like an eternity but we had a lot of discussion preparing ourselves to find out that either A- the baby is fine or B- we were going to bless this baby with the most love and care he or she needed with whatever disability they had. Neither one of us slept the night before so I remember us getting up and leaving for Pittsburgh extremely early so we could ensure we didn't hit traffic making us late for the appointment. July 23, 2015 finally arrived and we loaded the car ridiculously early to go find out if our baby was fine or had a disability.
Daniel's Story Day 7:
(July 23, 2015 Diagnosis Day)
I remember waking up and leaving extremely early for our appointment at West Penn. We were so worried to get stuck in Pittsburgh traffic and had never been to their facility before. Our appointment was at 8am and I remember walking into the entrance with all the offices still locked because we got there at 6:30am. We sat in the seating area near the front door waiting for the offices to open watching people coming in and out of the hospital joking about how we could have left home a little later. We sat there talking to each other just like always with no idea that our life would turn upside down in just a few hours.
It was finally time for our appointment and I began completing all the paperwork for a first office visit. I remember sitting in the room looking at the other patients as they walked in thinking 'I wonder if their baby is healthy'. When we were first called back we were walked to a conference room to meet with the genetic counselor. She asked if a student observer could sit in and I remember saying something along the lines of "sure, they have to learn somehow". She began asking questions about our family history and genetic problems. I began getting really irritated telling her "we don't have any, we are only here to see what type of disability our baby will have... the genetic questions aren't necessary". She continued to have us walk through each family member noting how everyone was healthy. She then explained that we would wait back in the waiting room until the doctor could see us. When we got back to the waiting room we both turned to each other saying what the heck was that about? Both clearly uneasy with the conversation and tone it set.
As we began our scan with the ultrasound technician she explained that as she scanned our baby the doctor is in another room reviewing and would meet with us following the exam. I told her we didn't know the sex and we don't want to know, making sure she didn't slip up telling us. Before she began measuring the limbs I was praying so hard asking for them to be longer. We were 21 weeks so as soon as I saw that the limbs were still measuring 14-15 weeks my heart dropped. Why isn't our little one growing, we need you to grow. She began scanning the head and there was more fluid than our last scan. I was preparing myself for multiple disabilities at this point but I knew I could handle it. The doctor came in along with the ultrasound tech and medical student to begin explaining the results. Dr. Jackson began explaining the fluid on the brain and short limbs and the complications they lead to. She explained her concern for the baby but we were never prepared for the prognosis. "Your baby has what I believe is thanatophoric dysplasia which is full body dwarfism" I remember processing that thinking "okay there are people that live full lives with dwarfism, not a problem" She began showing us the baby's body explaining how the lungs are not forming and that with this form of dwarfism the baby will not survive after birth (if they make it birth). I remember looking at Bill both of us eyes full of tears trying to process this. We were coming to get a disability diagnosis, how is this happening? We both lost it full out crying trying to think about her words. Dr. Jackson began hugging me and holding me as I cried then asked if we would like some time together before she continued. She walked out and we both clung to each other sobbing uncontrollably. How can she say our baby will die? She has no idea who my God is! No way God was letting this baby die. Our heads were spinning trying to comprehend all that she told us. Dr. Jackson came back in and began explaining our options. She said that we were still within the time-frame to end the pregnancy if we choose to. With all the emotions I was feeling, that was one thing I didn't have to think through. I cut her off and directly stated "I will not kill my baby". Bill jumped in and asked me just to listen to her and I looked right at him saying "we aren't killing our baby" He realized what she was saying and agreed that that option was off the table. Dr. Jackson warned us that this was the worst case she had ever seen and that we needed to be prepared that the baby will very likely not make it birth. We needed to know that it was almost certain that we would go into one of our doctor's appointments and not have a heartbeat. I vividly remember saying "When God wants to take the baby He will, but we will carry this baby until He decides to take them". The end of the appointment is a blurr for me. I remember coming out from the appointment crying all the way to the car trying to cover my eyes as I walked through the waiting room then riding home for over an hour holding Bill's hand both sobbing and asking each other how this could happen. Our whole world had just turned upside down and all we could do was cry.
Daniel's Story Day 8:
I remember riding home gripping Bill's hand and not able to say anything other than "how is this happening". Both of us sobbing and barely saying a word for over an hour as we drove home from West Penn Hospital. The doctor told us our baby's diagnosis was fatal, how could we be told our baby had something "fatal" when we didn't even know if it was a boy or girl? We were in complete shock and I truly believe our grieving journey began at that moment. All our dreams of the life our baby would lead paused.
Later that afternoon I called my sister to come over and we began to break the news to our parents and siblings. We couldn't bare to tell many others so we asked them to let other family members know as the weeks went on. In my family at the time, my younger sister was also expecting a baby. We were so excited for the kids to be only months apart and grow up together. I remember how happy my mom was to be expecting two grandchildren and now I had to prepare her to lose one. I couldn't even comprehend it and my systematic processing must have clicked in to get through the rest of that day.
Late in the day I remember calling Dr. Hojat's office telling them I needed an appointment with him as soon as possible. They must have heard the fear in my voice because without question they had an appointment scheduled within the next day or so for me. Bill and I laid in bed the next two nights crying ourselves to sleep. We couldn't even control our emotions to do anything more than cry until we were able to meet with our doctor again. I needed a plan and answers of what to do. Meeting with Dr. Hojat was our next step in trying to make sense of what was happening.
Daniel’s Story Day 9:
This appointment with Dr. Hojat was very different. In the waiting room I kept thinking ‘Is anyone else in here carrying a baby who’s sick?’ I was so anxious to go back for the appointment to hear the heart beat. We were fearful if there would be one but there was. The baby had a really strong heartbeat and I was so grateful to still have our little one alive. Dr. Hojat came in and I began explaining our outcome from West Penn. We probably made him late for all his other patients because we walked through every detail of our exam with the specialist. He immediately hugged me telling me how sorry he was and how sad he felt about the baby. He apologized that he had not prepared us for what the doctor told us but had no idea it would be a fatal diagnosis. I asked him if we could still keep him as our doctor and if he would still deliver our baby because West Penn wanted us to switch there. He was instantly willing to keep us as his patients and deliver our baby. He knew we were scared and asked what we needed to help us feel better about moving forward. We told him how we wanted to come in more often to make sure the baby was still alive and asked if we could have extra ultrasounds to check him or her. I wanted to see my baby alive as much as possible because I had no idea what would happen. I didn’t know if the ultrasounds would be the only time to see our baby alive. We all agreed on our medical plan. For now we would alternate every other week going to West Penn or Dr. Hojat’s. He was so caring listening to our fears and working with us to help develop a plan for our baby. It was at this point that we began searching our faith to carry us through. We had no idea what would happen from here.
Daniel’s Story Day 10:
We began our appointments between West Penn with Dr. Jackson and Southwest Women’s with Dr. Hojat. At our next appointments we were still so hopeful that maybe she was wrong and the baby would get better, but the weeks went by and nothing was changing. Every week we had a strong heartbeat but the lungs still didn’t have any space to grow. I prayed so hard for God to continue to let our baby’s heart have enough space in those tiny ribs so our baby would survive.
Our next ultrasound at Dr. Hojat’s office was the time we finally decided to find out if we were having a boy or girl. We knew that each day with our baby was a gift so we felt it important to call our baby by name and bond as much as possible with the time we had. Jane was beginning our scan and excited to tell us it was a boy!!! We all burst into tears knowing it was a little boy that Billy so badly wanted. We already had names picked out so we immediately were able to name him Daniel John Dice. Daniel after Bill’s father and John after my grandfather and uncle. We began sharing with others his name so they could pray for him.
It was throughout these weeks that we started developing Daniel’s pray warriors and we ourselves began building a deeper faith. People who had never prayed or had a shaky faith were praying for us and praying for Daniel. Here was this sweet baby boy not yet born bringing those around us to God. Bill’s aunt gave us a book “Jesus Calling” which we began praying together as a family every night. We began reading books together and filling every day with time together in prayer since we didn’t know what tomorrow would hold. We appreciated each day and as the weeks went by I felt a strong sense that God was going to let us meet our sweet boy here on earth before he went back to Him.
At about 32 weeks we began discussing with Dr. Hojat what we should do for delivery. I had done as much research as possible (with the little available on thanatophoric dysplasia) that I was concerned about the delivery. We wanted every chance to meet Daniel alive and Dr. Hojat wanted to give us that. We decided that we would deliver early at about 36 weeks to give Daniel a better chance at being born alive. With excitement, fear, and love we began the plan to meet Daniel.
Daniel’s Story Day 11:
Our final appointment at West Penn had no change in Daniel’s diagnosis or prognosis so we knew we needed to make a plan with Dr. Hojat about our delivery. In our final appointment with Dr. Jackson she told us how much Daniel had already lived longer than she ever imagine and I made sure to let her know that we had an awesome God. She was a great doctor but on our final drive home from West Penn Bill and I both agreed we never wanted to ever go back. There were just too many sad moments there for us to bare going back again.
We determined with Dr. Hojat that we would deliver at 36 weeks. Due to Daniel’s small body I was retaining amniotic fluid and measuring as though I was having twins. But my pregnancy was beautiful. I never felt sick and was grateful every single day to carry our sweet boy. We began looking over the calendar with Dr. Hojat and he gave us the date of November 6th for our c-section. It was too dangerous to deliver him any other way due to the fluid on his brain and we wanted to ensure he has the safest delivery. We agreed with the date and knew that would be the day we met our sweet Daniel John. It was mixed emotions to have a date. We were so excited to meet him but so sad knowing it would very likely be the last day he was here on earth. His lungs were not formed and once he no longer had my body to breathe for him he would likely pass quickly. I was so grateful for my body being able to sustain him all these weeks.
We only had a few weeks to finish preparing for Daniel. We walked past the nursery and looked at everything we bought before D-day. The dresser was still in the box but there was his crib ready for a baby we didn’t know would ever come home. A piece of me still held onto hope that we would bring him home if even for a short time. We decided to put the dresser together just in case we were able to bring him home. We got the nursery set and ready just in case.
At the same time I began calling to make some arrangements. I called a local cemetery to meet about burial plots. Bill did not want to pick out plots so I went alone. I don’t know how the lady even understood me speaking through my crying but she was so sweet and took such time to listen to my requests. She took me out and we walked the grounds looking for a spot I liked. I remember thinking how I am 30 years old and choosing burial plots for me and my unborn baby? We looked at two areas and neither felt right to me. I asked to look over at another area where there was a tree. I wanted him to be buried by a tree because little boys love to climb trees and I wanted him to have one near his grave. It’s things like that which go through your mind in difficult times. My mind always has a way of rationalizing. I picked the plots at the end of a row along the road under two big trees. That’s where all three of us would be buried.
November 6th was approaching quickly and our emotions were on edge. Our dogs were even feeling it. They would gently lay their heads on my big belly almost as if they knew that would be the only chance they had to cuddle with their brother. I called our priest to ask him to come to the hospital the day of Daniel’s birth and began typing my delivery plan. I needed to have some control over a completely uncontrollable time. Dr. Hojat agreed with our birth plan and I asked to meet with the nurses that would deliver Daniel. I needed them to know our wishes.
We met with the deliver team on November 5th. The two nurses who would be in the delivery room showed us the hospital facilities and walked us to the room they would take us to as our hospital room. It dawned on me during our visit that I never got to tour the hospital or take birthing classes. I had to cancel my baby shower. I missed out on all of that. I went through our birth plan in detail and gave them a printed copy. Our request was that as soon as Daniel was born he be given directly to us so we could hold him for whatever time we had. The nurses agreed and even worked to get me my own recovery nurse so they could bring me directly back to our hospital room for my recovery so I could be with Daniel. Everything was in place for our delivery and we went home ready for our last night together in our home.
So many people were praying for us that night. Bill’s church had a prayer service for us praying over us all. I remember Bill’s cousin coming over to see me that afternoon at our house bringing me a gift and talking with me. We had been asking people to pray for God to give us a least a few minutes with Daniel. We wanted to hold him alive even just for a few minutes. That afternoon she said something so profound to me. She said when she was sobbing about it the other day her husband said God multiples our needs. We are asking for 5 minutes but God is a great God and he will multiply that. I kept think God please bless us with any time you can.
That night we finished reading the book of Children’s Bible Stories that we had been reading with Daniel. We wanted to teach as much as we could about God before he left us. We prayed all of our prayers and both cried ourselves to sleep. Tomorrow was coming and I desperately wanted more time.
Daniel’s Story Day 12:
I don’t think we slept at all the night before our delivery with so many emotions overcoming us. We had clung to Psalm 139 “I am fearfully and wonderfully made” throughout our pregnancy knowing that God made Daniel with a special purpose. I began journaling all the special thoughts back at the beginning of our pregnancy and for today’s story I find the best way to share it is through my eyes speaking to Daniel from my journal entry the day he was born.
November 6, 2015
Our Sweet Boy,
Today we welcomed you to the world. We are so joyous to see your beautiful face but so sad to see your soul leave us. We came to the hospital at 5 am to get ready to meet you. Daddy carried all our bags of my things, your belongings and our hospital bag Aunt Dee and Uncle Harry got us. We were both so excited and so nervous. The nurse checked us in and brought us back to our room (3227) to get my medical care started. The nurses got my IV in my left hand and they couldn’t get my second IV in after four attempts. It was painful and all I could think was to get it all done to meet you. The whole time we waited for your delivery we got to listen to your heartbeat. It was such a blessing to listen to your strong heartbeat of about 150 bpm for about 90 minutes before we went into the delivery room.
At about 7:30 am they took us back to deliver you. Daddy had to go wait in the doctors’ lounge while Dr. Moss did my epidural. The staff had me slide from my bed to the operating table which was quite a sight with my big belly. Our CRNA, Sara and nurse Karen explained what was happening each step of the way so I knew what to expect. They got my epidural in place and tested to make sure it set in. I told them it felt sharp so they had to give me a second one. At that point I became so worried that something was going to go wrong with you. They had to send your daddy back out of the room and brought him back in when my second epidural set in. Daddy held my hand and the doctors began working. The wait to see you felt so long and the sickness I had from the epidural didn’t help it. Sara kept giving me updates of what was happening on the other side of the sheet. She told me your feet were out and my heart jumped for joy. Then she said she saw your little butt and then a little hand. The nurse got gloves on daddy so he could get ready to cut the umbilical cord. Then we heard the most beautiful sound, you let out a little cry and we broke down even more crying for joy that you made a noise to let us know you were here. Sara told me they were getting your head out then daddy cut your cord. (you were born at 8:38 am) They immediately laid you on my chest and I looked at your beautiful sweet face. You couldn’t move but one of your eyes was slightly open and I could see your sweet blue eyes looking back at me. The doctor checked your heartbeat which was 61 bpm. You were fighting for us and alive. I held your hand and wished you happy birthday telling you how much I loved you. The whole time the doctors were delivering you I prayed for your life and my prayer was answered. The doctors kept checking your heart rate and it went from the 40s to 30s then back up to 40s. We baptized you after birth as soon as we got you with holy water and oil. We wiped your head with a cloth from Medjugorje and prayed an Our Father with you. The doctors finished my surgery closure and got me ready to leave the delivery room. I will always remember the moment they laid you on my chest and I saw your beautiful sweet face, it’s all I could look at the whole time they completed my surgery. At one point your daddy placed you right by my face so I could give you lots of kisses and hold your sweet little feet. All I wanted to do was hold you and kiss you. Daddy helped you in the delivery room while I was sick and was so proud to meet his son. He just rocked you in his arms and cried because he and I were so proud of your strength.
When we left the delivery room the nurses gave you a Winnie the Pooh hat to wear and laid you in my arms to go meet our families. (Oh I forgot to mention that when you were born the hospital played the birthday chimes for you and held the phone up for us to hear it). We went down the hall, all our family surrounded us, and I said “Meet Daniel John Dice” I was so proud to show everyone our beautiful son. We then wheeled straight back to our room. Daddy and I read your daily prayer with you and two of your books “Me and My Daddy” and “Little Owls Night”. Then the doctor came to check on you and could not find a heartbeat. He gave your time of death at 10:07am. Daddy and I cried as we held you for the next several hours. Oh how much we love you sweet boy.
The doctor came back in to examine you and the nurse got your measurements. You were 8 pounds .06 ounces, 18 and ¾ inches long and your head was 18 and ¼ inches. The pediatrician who cared for you was Dr. Kankipati and Dr. Hojat delivered you. Once they finished and cleaned you up, we started having our family come back to see and hold you. Your grandparents all came back first, then your Aunt Heather, Aunt Dee, and Aunt Jess. After them was your Uncle John, Uncle Harry, Uncle Jim, Lyric, Aunt Susan, and great Aunt Stella. Everyone was so happy to meet you and hold you in their arms. All of us kept commenting on how much hair you had. You had a full head of hair at 36 weeks 1 day we all couldn’t believe our eyes.
The photographer from Now I Lay Me Down To Sleep came at about 3pm to take all the photos of you. She was wonderful and since I was not permitted to get out of bed your Mimi and Jill our nurse helped dress you for the photos. Daddy and I were so sad you’re gone but glad to make some memories with you.
Later in the day some other people meet you. Paige and Penny came to visit you and loved meeting you. That night you laid in your mommy’s arms as I slept. It was such a blessing to sleep holding you in my arms. The amount of love we have is indescribable and our hearts already long to see you again.
Happy Birthday Daniel. We love you.
Daniel’s Story Day 13:
Daniel was alive for 89 minutes full of joy, love, and peace. All Daniel ever knew on earth was love which every parent wants for their child. So many people were waiting to hear the news of his birth and hundreds of prayers were prayed that day. He was surrounded by prayer from us for the time we had him.
Over our next four days in the hospital we took every moment to love him and share him with family and close friends. Although we were broken hearted, we were still very proud parents. Our nurse Karen helped us make dozens of hand and footprints, we took hundreds of pictures, and we held him every moment. Every night I slept cradling him in my arms so I wouldn’t miss any chance to hold him. We knew the time in the hospital was the only time we had with him so we were completely present in making memories with him. Bill watched college football with Daniel, we prayed with him everyday, and had our priest Father Morley visit to bless him. One of my favorite memories was celebrating mass with Daniel on Sunday morning. We found mass on the television and celebrated it together. I had prayed for and with Daniel at mass every Sunday while I was pregnant. He would kick constantly every single Sunday so being able to celebrate mass with him this one time together meant so much to me. I knew this was the one and only time we would celebrate mass with Daniel in our arms. That hospital room was all we thought of for those three days after his birth. The whole outside world had stopped in our minds. I’m so grateful that we had that time to spend with Daniel at the hospital.
While we were at the hospital we had some amazing God winks and a huge blessing. We know He was guiding our journey and carrying us through. On the second day in the hospital, I was laying in bed holding Daniel while Bill was using the shower. I was talking to him and looking at him trying to memorize every part of his face. I started thinking about how blessed I was to have him but how hard it was thinking of the difficult path ahead. As I was looking at Daniel I felt a pair of hands on my head full of strength and calming me. I thought Bill was touching me because it was such a real feeling. When I realized Bill was still in the bathroom I knew it was so much more. I soaked in the moment knowing I was receiving a holy blessing. I could have sat there forever in that peace but after a few minutes I heard the bathroom door open and the Holy Spirit left fluttering Daniel’s footprints on the shelf on the other wall. I began thanking God in my mind for assuring me I will be alright and thinking the moment was just for me. Bill stopped in his tracks and immediately asked “what was that”. I told him the Holy Spirit was blessing me and he mentioned the feeling peace in the room. I never thought he would feel or believe it but his faith was changing so much so he was able to experience this amazing blessing. He too saw the papers flutter across the room knowing our visitor was very special.
A second work of God we experienced at the hospital was Daniel’s health. We and our family held him constantly for four full days. In those days of feeling all the body heat from everyone holding him Daniel’s body never broke down. It was unexplainable to many but the power of God is a mighty one. God gave us all that time with Daniel which is why we felt called to help other families have that gift of time. We know that we were called to the ministry of helping other grief families by the gift of time we were given against all medical reasoning.
Every moment spent with Daniel was a blessing but our time at the hospital was coming to an end. Dr. Hojat met with us and explained the discharge procedures. On the fourth day we were scheduled to be discharged and it was the most difficult day of our lives.
Daniel’s Story Day 14:
On our fourth day in the hospital we had to prepare to go home. We cried all night the evening before knowing it was the last night we would spend with him and last time I would sleep with him in my arms. Nothing could prepare us for this day but we did our best to make it a beautiful day pouring love over our sweet boy.
In the morning we met with Dr. Hojat to discuss our follow up visits regarding my surgery. He was such an amazing doctor and person. We were so blessed to have him care for us. We spent most of the early morning looking at our beautiful baby taking in every moment of seeing him. I decided that I wanted to read my journal to him. I had begun keeping a journal in April, shortly after we found out we were expecting, with the hopes that one day I could share all the joy of my pregnancy with him or her. I still wanted to share that with Daniel so I began reading my journal to him while I held him on our last day. It was healing and sad to walk through the whole pregnancy again and share my thoughts with Bill as well. We cried as I read every page out loud while Bill held the book for me. Us being there as a family was a precious memory for me.
Early in the afternoon we had to begin our discharge papers. We had to be discharged and leave the hospital first before the funeral director could come for Daniel. The nurse told us she would give us some time alone together and to press the nurse station button when we were ready. She left and I looked into Bill’s eyes and said “I don’t want to leave him”. Bill looked at me telling me we needed to make a plan or else we were never going to leave. He suggested we sing our two favorite hymns to him then press the button to call the nurse. We had prayed with Daniel all day and prayed with him one last time. We read a few books to him then began singing our hymns. Bill played the songs on his phone and we both sang them to Daniel through our tears. We sang Amazing Grace and Christ Be Our Light. When we finished the last word we cried and hugged Daniel tightly as we pressed the button calling for our nurse Karen. She had been with us in the delivery room and was so protective of our sweet Daniel. When she came in I told her that I can’t leave him in a room alone and asked her if she would stay in the room holding him until the funeral director arrived. She was so sweet feeling honored to hold him as they waited. We kissed him and hugged him one last time then handed him over to her knowing that was our last goodbye for now. I sobbed the whole time as the nurse wheeled me to the car. In my arms I held some flowers someone sent to us but my baby was gone. How could this be the path chosen for us? How can I leave him and go home without him? This day was absolutely the most difficult day of our lives. We got to the car and pulled away with tears streaming down our cheeks and holding hands during the short ride home. He was gone and now we had to live without him. We went home with empty arms to begin planning Daniel’s funeral. We were heartbroken.
Daniel’s Story Day 15:
On the drive home we felt so empty, so lost, so sad. We entered the house, Maddy and Felix greeting us at the door but not their usually selves. They too seemed to feel the loss of their brother. Our dining room table was full of flowers, gifts and cards from the past four days. So many people praying for us and thinking of us. We both broke down sobbing as we sat on the couch in our quiet living room. No diapers to change, no feedings to give, no baby to hold. All we could bare to do was hold each other as we grieved for our sweet Daniel.
Along with the emotional healing was my physical healing. I had just underwent a major surgery so my body was also trying to heal. I was trying to ensure my incision was well cared for even though I cared about very little at this point. I knew I needed to get my body ready for a funeral in a few days. Over the next several days we began planning Daniel’s funeral. The plan was to have it the following week so I had some time to physically heal. Looking back the only way I can explain how I managed to plan his funeral without going into complete depression was a mother’s love. I could give Daniel very little here on this earth but I could love him and provide a proper funeral for him. We chose the things we wanted for his service including flowers around his casket, wheat from his daddy and me, and photos. I wanted the funeral home to be surrounded with photos of Daniel so everyone there could see how beautiful he was. I am still so grateful that my family did so much running around and work to make the process as easy on me as possible.
We met with the funeral director to make our final arrangements giving him clothes for Daniel and discussing what we wanted at the service. Bill and I talked previously about what to bury him in. I looked at baptismal gowns and other items but in the end we decided that he would be buried in a onesie with a little giraffe with green and white socks. He was our sweet baby and we wanted him buried as he would be dressed if he were alive. My sister offered to write his obituary but I was adamant that I was going to write it. He was my baby and I had gone over and over in my mind how to get through writing it. I had considered writing it before he was born but decided it should only written after he was gone. I prayed about it asking God to give me the words He needed people to hear. As I began to write the words filled the pages with emotion and pure love for my baby boy.
Daniel's Story Day 16:
When Daniel died we felt completely helpless. We were his parents who were supposed to protect him and care for him so we carried some guilt in him not surviving. We grabbed any opportunity to do something for him so I decided to be the one to write his obituary. Here I was a week after meeting our sweet boy, now writing his obituary. It was so surreal and I look back now amazed at how I made it through some of those first days. When writing about him I wanted people to feel the importance of Daniel's life and the blessing he was to all of us. They needed to hear about his life from his mommy who yearned to have her baby in her arms. Writing his obituary was one thing I could to for my son to honor his life and share his story to spread the love God has for each of us.
On Friday, November 6th at 8:38am, God gave us the most beautiful baby boy, Daniel John Dice. Daniel shared his life with his parents for a precious 89 minutes before becoming our most special guardian angel. Although his parents knew his life would be short, due to a chromosomal mutation, they chose to give their son a chance; therefore, giving him life. The 36 weeks that Daniel spent with his parents during his mother’s pregnancy were spent making beautiful memories as a family; and the 89 minutes he spent with them alive were the most cherished minutes of our lives. His parents hold on to all the memories they have during their pregnancy – reading to him in his nursery, singing to him, praying every night with him, and reading him his nightly Bible stories. Daniel touched the lives of so many before birth, and after, by those sharing in his story; and, therefore, sharing the message of Daniel and his parents carrying out God’s plan. Daniel had a special purpose and his life was the most precious gift God gave all of us. Daniel was knit together in his mother’s womb and praise God for he was wonderfully made. His frame wasn’t hidden from God and how precious Daniel is to God and his loving parents and family.
Daniel John is survived by his loving parents, William and Nicole Dice of Uniontown. He is forever remembered by his loving family, paternal grandparents, Daniel and Karen Dice of Brownfield, and maternal grandparents, Roseann Kurutz and the late Thomas Mullen, both of Uniontown; paternal great-grandparents, Joanne and William Prettyman III of Maryland and the late Bud and Hannah Dice of Uniontown; maternal great-grandparents, the late John and Josephine Koposko of Uniontown, and the late Brent and Iona Mullen of Smithfield. Also surviving are his aunts and uncles, Danielle and Harry Kaufman of Uniontown, Heather and James River of Youngwood, Melissa Houston of Brownfield, and Jessica Dice of Brownfield; two cousins, Lyric River and Callie Houston; maternal great aunts and uncles, John Koposko, Susan Koposko, Regina and Roy Cox, Betty and the late Steve Marva, Pauline and the late Ray Fendlay, and John and Ginny Danko; paternal great-aunts and uncles, Stella and George Mikluscak, George and Catherine Dice, Carl and the late Marie Dice, Diane and Donald Callahan, Dale Ewing, David T. Prettyman and Jazz Souisay, and William Prettyman IV; also many other loving family members.
The family would like to extend a special thanks to Dr. Rod Hojat and Southwest Women’s Health for their care and safe delivery of their sweet son; the Uniontown Hospital delivery staff, especially the Family Beginnings Birthing Center, for all their compassionate care of Daniel and his parents, Kezmarsky Funeral Home for their generosity and assistance during this difficult time; Sylvan Heights Cemetery for their generosity and kindness; and all the people who prayed for the family and Daniel throughout the pregnancy and birth. Donations can be made in memory of Daniel under his parent’s names at the Fayette County School Employees Credit Union, 193 Edison Street, Uniontown, PA
Arrangements are under the direction of the Kezmarsky Funeral Home, 71 Pennsylvania Avenue, Uniontown, PA and will remain private for the family. A memorial mass service will be planned at a later date for friends and family to celebrate our miracle, Daniel John.
Daniel’s Story Day 17:
In the first few days home we were so broken but found some comfort in signs from Daniel. He sent us several signs of his presence around us and letting us know that he was okay. The first night we were home I was laying in bed crying and talking to him asking him to let me know he was okay. As I laid there I felt him laying on my arm and knew it was his way of letting me know he hears me.
For several weeks I could not sleep. I prayed to the Blessed Mother asking her to comfort me in my distress. I was so overly exhausted from needing sleep that it made the night overwhelming. I cried for Daniel each night as I tried to sleep and the combination of emotional drain and physical exhaustion was pulling me further down into depression. So the signs from Daniel helped me keep my head above water and pulled me through those dark days.
Bill was missing Daniel and feeling the sadness of the approaching funeral. I prayed for him to get a sign to comfort him. The day before he funeral Bill came home from the gym to find a rainbow mini kickball sitting beside my car at our home. That night Daniel gave Bill another sign by laying in his arm while he slept and visiting him in a dream. He woke up feeling some comfort that Daniel was visiting him.
The next day we needed God to carry us as we held the viewing and funeral service for our sweet baby boy. The service was scheduled for Friday, November 13th for which we said Friday the 13th was appropriate for this being the worst pain and luck we had ever experienced. It was also Daniel’s 1 week Birthday. I woke up and took a moment to myself when 8:38am came remembering his time of birth just one week earlier. The day moved on as family went to prepare things for us at the funeral home. When the time came that evening Bill and I drove to our son’s viewing holding hands as tears streamed down our faces during the short drive. We listened to hymns during the drive thinking of our sweet boy and feeling the emptiness in our hearts. When we parked the funeral director was waiting at the door but we sat in the car unable to move. We looked at each other and Bill said that we will get through this together just like we always do. We opened the car doors and stepped out walking slowly to the funeral home door hand in hand.
Daniel’s Story Day 18:
One week after his birth we held the viewing for Daniel. We invited very immediate family only because we couldn’t bare much more than that at the time. When we arrived, the funeral director walked us in to the closed casket. All I could think was ‘here is my sweet baby in a white box’. Bill and I both broke down sobbing uncontrollably in such deep grief.
The casket was surrounded with about a dozen photos of Daniel. We wanted our families to see how beautiful he was and we needed to see his photos to comfort us. We played Christian music in the background beginning and ending the viewing in prayer with our sweet baby. Bill sat for a while in front of Daniel’s casket telling him how difficult it was for us to bury him but how blessed we feel that he was ours.
The following morning we buried our baby. It was mid-November but the weather wasn’t bitter that day. The forecast called for rain but I knew we would bury Daniel in the beaming sun and if the rain came it would be holy water pouring down.
Bill and I went to the funeral home early to read our daily prayer one last time with Daniel and spend a few minutes alone with him before our family arrived. Father Morley led a blessing service and beautiful prayer with all of us. We then played our two hymns we sang to him before we left the hospital, Christ Be Our Light and Amazing Grace. Bill and I sang them through our tears and all the family joined in. It was so beautiful to hear all our voices praising God through the hymns as we sang them to Daniel.
Everyone took their turn saying one last goodbye and exiting the room. When all were gone we went up one last time to pray with Daniel and thank him for showing us such true and deep love. We were so sad to travel this path but were honored to be his parents. We traveled to the cemetery listening to and singing the disc of hymns in our car. The sky was full of clouds but when we got to the plot a bright beam of sunshine came through the clouds and stayed on us throughout the final blessing. Here we were almost numb from all the pain and grief in burying our baby. Every day I felt like I would not make it to the next. It was an emotional struggle to get through it.
At the church after Daniel’s burial I had a birthday cake for him. Although it was a sad time I wanted to celebrate his life since he will only have one birthday. We sang to him up in heaven and spent time with our closest family members.
That afternoon we came home to a huge stack of cards in our mail some from people we didn’t even know. It was touching to see that so many people were moved by our sweet boy. Just before sunset Bill and I went back to Daniel’s grave. We watched the sunset just behind his gravesite with beams of oranges and pinks filling the sky. We cried from being so heartbroken over the loss of our newborn son and wondered where we go from here.
Daniel’s Story Day 19:
The final parting with Daniel was complete. We buried him and now came home knowing it was all final. I was so overpowered by grief that I honestly didn’t know how I could make it from one day to the next. I wanted to be with him and asked God why he didn’t take me too. Losing a child interrupts the sequence of life and makes everything seem wrong in the world. I was angry that the world was moving on as though everything was fine but it wasn’t to me. My baby was gone.
Bill returned to work the following week but I remained off work as I continued my physical and emotional healing. I remember the first day Bill left for work I was awake and counted down the hours until he came home. I felt so lost, so sad, so empty, and so alone. The quiet of the house drug me down further into depression and I wondered how I would function to get out of it. Bill felt bad and worried about leaving me home alone all day. I was open with him about my feelings and being so sad all alone. He and I confided in each other about everything and we leaned on each other even more now. Although we had a huge support system we felt like we were on an island because only we knew each other’s pain. Bill encouraged me to find something to fill my days while he was gone. I promised him I would figure something out and so began my new daily schedule.
The next day I woke up the same time as him again and decided since I was awake I would go to morning mass. After mass I spent some time at Daniel’s grave then headed home. I began reading a book my sister got for me “I Will Carry You”. Then I spent the afternoon responding to messages and writing cards of thanks. This was my routine every day for a few weeks. It was a good start in a positive direction. Going to mass was healing for my soul and helped me start my day focused on my faith. Like I said previously, we got lots of God winks when it came to Daniel and morning mass was no different. The readings for daily mass were from no other but the book of..... Daniel. Every day we read readings from the prophet Daniel and I kept asking God what He was trying to tell me. At first I thought God was reassuring me that Daniel was fine and I could begin healing. I began studying the book of Daniel and his unfailing love for God even in the most difficult situations. It really resonated with our sweet boy and I thought maybe Daniel was meant to share God with others because so many prayed for him up to his birth. I was content with that and found some peace with it. It wasn’t until a few weeks later that another element of Daniel’s purpose was shown to me and I gave all doubts away to trust God’s path for our family.
Daniel’s Story Day 20:
Bill and I had a memorial mass for Daniel on November 22nd at St. Therese Church. Father Morley presided over a beautiful service full of friends and family. It was amazing to see hundreds of people there just for us. Friends came from hours away to pray with us and pay their respects to our family. People who hadn’t stepped into a church in years were there praying. At the end of the mass Bill and I spoke thanking all of them for coming and being so blessed to be Daniel’s parents. In that moment I remember thinking how amazing it was to see so many people Daniel had touched and wondering if we could continue to touch others.
We were beginning to get ready for the holiday season which was very difficult. We had Thanksgiving and were preparing for Christmas. All we could think was how our baby wasn’t here for any first holidays. It took us two days to set up a mini Christmas tree and we ended up not even getting a real tree. Our hearts just weren’t in it for the holidays. We felt completely broken.
As I spent my days at home alone during the holiday season I began searching for support groups and began meeting with a grief counselor. Bill and I also got information about a Christian based grief program at a local church that would begin after the new year. We were trying to work through our grief so it wouldn’t consume us.
One afternoon I was scrolling through Facebook looking at a grief group and one of the advertisements scrolled up. I always just scroll past them but for some reason I starting looking at this one and clicked on it to investigate further. It was an infant loss group in Lakeland, FL who were on a mission to place Cuddle Cots in every hospital in the USA. I started reading about their group and the Cuddle Cots. I began reflecting back on signs God had shown me saying Daniel had a larger purpose. Instantly I knew we were going to become part of this. Bill came home that night and I remember telling him about wanting to fundraise to purchase one for Uniontown. I told him how I truly believed God gave us all the time we had against medical odds for us to provide that to others. Bill said no way. We aren’t fundraising it was just my grief talking because I always want to fix things and this won’t fix it. Anyone who knows me knows that if I am driven to do something it will get done whether people help me or I do it alone. The next few weeks I wasn’t giving in and he finally came around. We started thinking about a way to raise the money and were excited to feel that we could do this for other families at Uniontown Hospital. I now had something positive to put my energy into each day with no idea all the other blessings that were being planned for me.
Daniel’s Story Day 21:
Bill and I were finally in agreement of raising money to purchase a Cuddle Cot in memory of Daniel. Our goal was to raise $3,000 by his first birthday then donate the device to Uniontown Hospital. We decided to sell a ticket after the new year to raise some of the money. It would take time but it gave us a positive outlet for our grief.
As Christmas approached we felt the weight of our grief even more. I had begun going to Eucharistic Adoration a few times each week trying to ground myself in my faith to pull me out of my depression. Things around me would pull me back down then church would lift me up. I felt like my emotions were so unpredictable. I remember when I went to one of my follow up appointments for my delivery they had to give me a questionnaire with postpartum questions. The registration clerk told me it was required but I could tell she felt bad even making me complete it. Many of the questions I had trouble answering and broke down into tears in the waiting room. I wanted to write “yes I am depressed my baby died”. Times such as this along with the holidays made me feel like I was never going to do anything but cry.
We kept Christmas very low-key visiting with family and spending a lot of time at home together with our dogs. We decided to get Daniel a stocking and buy a gift for him each year as a family gift. For his first Christmas we bought a family ornament with us, Daniel, Felix, and Maddy. It was some way we could include him in the holiday with us.
As sad as I was not to have Daniel here for his first Christmas I tried to focus on the beauty of his first Christmas in heaven. How awesome it must have been for Daniel to celebrate his first Christmas with Christ. We taught Daniel as much as we could about Jesus while we were pregnant. I imagined him singing hymns with Jesus as they celebrated him becoming man and entering the world as a baby at Christmas. Every year we sing Happy Birthday to Jesus with a cake on Christmas Eve and as we sang that year I imagined Daniel singing happy birthday to Jesus in heaven. It was thoughts such as this that brought me occasional comfort.
Soon the new year began and I struggled going into 2016. The change of the year made me feel further away from Daniel’s time here on earth. I decided to put my pain into a way to help other mothers grieving so I began to design a website. I wanted to share Daniel’s story so others would not feel alone in their grief. We also shared our story with the local newspaper and found many people who related to losing a child. I worked diligently every day on the website after morning mass and was so proud when I was finally able to publish it.
We also began our ticket sales to raise money for the Cuddle Cot we wanted to purchase. Tickets were being sold faster than we could get them out feeling so blessed that others wanted to help us. All the tickets were sold within a month so it was now a waiting game to see who won. We had no idea how the ticket sale would completely bless us in our efforts and direct us with such purpose.
Daniel’s Story Day 22:
About a month after we buried Daniel I met with the funeral director to order a headstone. I was sick at the thought of having Daniel’s first birthday come and still now have a proper headstone. It was one last step to finalize his resting place. We began discussing what I wanted on it and how I wanted our names written. It was so surreal to choose a headstone for Bill and me but hurt deeply that it was for my baby boy too. Bill and I had talked previously about how we would be buried with Daniel. We wanted Bill on one side and me on the other with Daniel in the middle. He was the center of our world so we wanted to each rest beside one day when we’re buried there. After about an hour we worked through all the details and I made the full payment so we could begin completing it to be on the grave as soon as the weather broke. I was so relieved that this part was complete but had no idea the road we would travel with it later in the spring.
Each milestone brought grief. Each month I would cry on the 6th thinking about all the parents taking monthly photos of their baby through the first year yet I had an empty nursery. Deepening my faith and going to mass were a big reason that I didn’t go into a complete deep depression. I decided to take the rest of the school year off and was so blessed to have so many coworkers donate sick days for me to remain off so I could physically and emotionally heal. It was a relief to have the time to focus on my healing and I will forever be grateful to those who made it possible.
In January we began selling tickets to raise money for the Cuddle Cot. I think Bill still thought I was crazy but he could see the need I had to bring something positive out of our pain. The tickets were all sold and we waited eagerly to see who won in March. When the number was pulled we started looking frantically through our spreadsheet and came to the winner. We were so happy to see it was a long time friend of Bill that we could bless with the winning money. We had now raised $2,000 towards our $3,000 goal by selling the tickets and were already trying to think of other ways to raise the remaining funds. Our goal was to place the Cuddle Cot by Daniel’s 1st Birthday in November.
We called the winner of the ticket and had to sit down when we began speaking with him. I remember the entire conversation and we were floored. We congratulated him for winning the ticket and told him we would be willing to drop off the money the next day. He stopped me and said he didn’t want the money. He wanted us to keep it so we could buy the Cuddle Cot now. We were shocked and insisted he deserved the money. He told us that he bought the tickets because he wanted to do something to help us and never planned to take the money if he hit. He was adamant that he wanted us to purchase the Cuddle Cot with it and we were so grateful. So here we were with all the money plus some to purchase the Cuddle Cot. I remember asking him if he wanted the extra $2,000 but he said to use it to buy another one. I remember thinking wow I never imagined buying more than one but maybe we can. We thanked him numerous times throughout the next few weeks and were still shocked.
I contacted the group we were working with and ordered the Cuddle Cot. It would be delivered in two weeks so we would have it by the end of March to donate. I began communicating with Uniontown Hospital about making the donation and they seemed just as excited as we were. It was the beginning of a much bigger purpose for us that we are still figuring out. We waited for the Cuddle Cot to arrive and when it did it was a whole mix of emotions.
Daniel’s Story Day 23:
On January 3, 2016 I published our website. I worked for a month nonstop on the information. When we were pregnant it was hard to find people to relate to so I wanted to share our story so others wouldn’t feel alone. It was fulfilling to publish it and see so many people visit and leave comments.
In March 2016 we donated the first Cuddle Cot of southwestern PA to Uniontown Hospital. We prayed with the nursing staff and explained the parts of the Cuddle Cot. It was beautiful and heartbreaking to be back in the place that we delivered Daniel. We felt honored to help other families and had many of the staff who delivered Daniel there to accept the donation. It felt fulfilling to donate it in memory of him and honor his life.
I was deeply struggling to find ways to pull me out of my depression. I’ve never been a fan of medications and have always tried natural holistic healing first. For several years I had thought about going to Medjugorje. I asked Bill about going when we were struggling with infertility and he was completely against it. He was concerned it was too dangerous. I had thoughts that if I would ever go God would give me a sign. One evening I was at Michaels shopping the Christmas clearance items. When I turned the corner I ran into a lady who I’ve known since childhood. She worked with my mother years ago in the lab and was our neighbor growing up. Instantly I knew this was God’s sign that I needed to take a pilgrimage. This lady had gone to Medjugorje many times and I had actually thought to call her about it several times but never had. I asked her if they were going soon and she explained they were going again in June. I remember saying right then to her “ok I’m going too”. She got me the information and I was ready to book. Bill and I had a long talk about it and he knew I needed some way to find some healing through all this pain. I booked my pilgrimage and began my spiritual journey to prepare for my departure in June. I was looking forward to spending some spiritual reflection time and hoped to have some healing while I was there. The healing that was in store for me was way beyond anything I imagined.
After donating the Cuddle Cot at Uniontown Hospital and publishing our website we put everything else on pause. We had no idea where all these efforts were taking us so I wanted to pray about it. We decided to wait until I returned from my pilgrimage to Medjugorje before we did anything else. I needed to go heal my heart and work through some of my grief.
I left for Medjugorje in June to find myself again. I spent months preparing for my heart to be open to the pilgrimage and path put in front of me. When I left Bill was nervous about me going on my own but I felt confident with the group and knew I was being called to go. I kept a journal of the days and feelings on my pilgrimage which greatly guided me when I returned home.
When I first got there I wanted to walk apparition hill instantly but had to wait until the third day to go. My heart was open and I was praying for peace in my heart and healing for my soul. I was so broken. I was praying for a sign that I’m going to be okay and get through this time of grief.
On the third day of my pilgrimage I got those signs. I prayed the rosary as I hiked apparition hill. Part way up I saw the sun dancing and spinning in the sky. It was amazing to witness an act of God. A little further up a rainbow appeared in the blue sky and I felt it was Daniel telling me he’s okay. As we descended Apparition hill to attend adoration I took a photo of the lights that form the rosary and in the photo they look like flames. All these signs helped me deepen my faith and open my heart to God.
At adoration that evening I witnessed Satan within a person which was extremely scary. It was the first time I had truly witnessed evil reaching to Christ. My heart was so broken and it scared me that Satan could fill it with evil and take away my future children. I was praying hard for God to fill my heart and show me that I was going to make it through. I asked Him to give me a sign that I’m going to get to be a mommy again and a raise a baby of my own in His light. As I turned to leave adoration I saw people looking up at the moon. The moon was directly behind me and as I looked up I saw a beautiful rainbow over the moon in the moon beams. I knew it was my sign that we were going to get through this storm and have our rainbow baby. I received many other sign during my time in Medjugorje but most of all I received healing.
Through the rest of my pilgrimage I found so much healing and direction. My prayer time helped guide me and organize my thoughts on how to carry on without Daniel. When I returned home we hit the ground running with developing our initiatives and finding the path God was guiding us on. I came home knowing that if I continued working through my grief I would come through it. I would be a different person but God was going to get me through and the Blessed Mother would intercede for me when I prayed to her. I knew exactly what God wanted us to do so we worked hard to get everything moving toward our new calling.
Daniel’s Story Day 25:
My pilgrimage gave me so much healing and guidance on where we needed to begin a new path. Bill and I spent a lot of time determining how we wanted to begin this new path. God laid on my heart that we were going to make Daniel’s life exponential by helping other families so we had a lot to prepare.
People started sending us donations and we now had enough money to donate a second Cuddle Cot. We donated it to St. Clair Hospital since we knew one of the grief counselors there. When we donated it we met a lady who just began a non-profit of her own in memory of her son and were able to begin a beautiful friendship and further our support system.
We began planning our next fundraiser to purchase future Cuddle Cots. Bill wanted to do a dinner dance but I felt that was difficult because you had to find couples. I thought about having a calendar party because I had been involved in many over the years. We decided to go with the calendar party idea and see how that went. Our thought was if we could raise a few thousand dollars each year we would be satisfied.
We also wanted to apply for non-profit status to build our donors so we could help more families. We met with our new friends from St. Clair and completed the 501(c)(3) application. Now we just had to wait to see if we were approved.
While we waited for our non-profit application decision we began developing more networks with other groups and infant loss non-profits. We were trying to see what outreach efforts fit what we believed in for Daniel. We decided to do three efforts as our main focus: purchase Cuddle Cots for local hospitals, provide supports for infant loss families, and have an annual scholarship in memory of Daniel. We were on our way and all the efforts were helping us turn our grief into blessings for others.
Daniel’s Story Day 26:
When you bury your child sometimes the grief makes change difficult. In October 2016 I had an opportunity to change jobs furthering my career. It terrified me to leave my current job where everyone knew Daniel. I had such anxiety that if I changed jobs no one there would ever know Daniel. I’m pretty sure Bill thought I was going crazy because he really wanted me to take this opportunity for myself yet here I was saying I might not. It was scary to think about changing jobs after I had just gone through such trauma a year earlier.
My first day in my new position was November 1st. I remember feeling so many emotions that day. Excitement to try something new, anxiety to leave what was familiar, and grief for leaving all the people who knew Daniel. On top of that was the grief of Daniel’s first birthday approaching on November 6th. Although time allows you to adjust to your new normal, the longing you have for what should have been still brings on all the grief. Each year Daniel’s birthday is a day to celebrate our sweet boy who made us better people and touched so many but it also makes us feel the void of him being gone. In the same moment it seems as though the last time we held him was so long ago yet it feels as though it was just yesterday. Grief can surely lead to some extreme emotions.
In December 2016 Loving Daniel became an official 501(c)(3)!!! It had only been a year since we welcomed Daniel and here we were with so many great blessings in memory of him. We were walking down a path we never imagined and were making it our own. We had just held our first calendar party in 2016 and were on our way to buying Cuddle Cots for more local hospitals. It was proving to be a great year but we weren’t done being blessed until a life changing event happened.
Daniel's Story Day 27:
We were working very hard to expand the non-profit and reach families to let them know they weren't alone. All our grief was put into trying to help others. We were working through our grief and trying to heal our hearts.
October 2016 brought about so many changes that made us begin a new chapter of grief. Within the same week I accepted a school principal position and we found out we were pregnant with our rainbow baby. We were so excited to have another baby but held so much anxiety as to whether we would get to keep this one or give this baby back to God too. I decided to tell Bill through a photo session with the photographer who photographed Daniel in the hospital. I had to keep the news from Bill for 2 weeks to get to the photo session organized which was so difficult because we tell each other everything. We are the couple who comes home every day and talks about our day together so keeping this to surprise him was tough.
At the photo session I had the photographer ask us to write three things we love about each other on mini chalkboards. However, on mine I wrote "After every storm is a rainbow of hope, Baby Dice due 2017". When we turned around to each other with our writings Bill took a minute to realize what my message meant. It was so beautiful to capture that moment of hope and love after so much grief. We were very excited but had so much hesitation. Dr. Hojat was almost as excited as us but this time we decided to keep it to ourselves and with only immediate family for the first month.
We were considered high risk from all that Daniel went through so we had to make the trek back to West Penn Hospital. We met with Dr. Jackson again for this pregnancy and she was happy to inform us that our baby was perfect. We were so happy not to make any further visits to West Penn because it brought back too many sad memories. This baby was handpicked by God and blessed with Daniel's love so we felt so blessed.
We felt a lot of anxiety and tension throughout the pregnancy because we had never experienced a positive outcome. We prayed along with so many for us to be blessed with a healthy baby. Then on May 23, 2017 we were blessed with a perfect, healthy baby boy we named William Emmanuel Dice. William after his father and Emmanuel so he knows God is always with him. He looks so much like his brother and we know Daniel watches over him every day. Our sweet Manny has the best guardian angel! We work every day to teach him about God and Daniel so his path is full of hope and love. Our hope is that Manny will want to be the hands and feet of Jesus through our example.
Daniel's Story Day 28:
We were excited to welcome our rainbow baby and prayed that God would lay His hands over our sweet boy blessing him with a heart always longing to be closer to Christ. We prayed that Manny would see God through us and learn to help others through our example. It's our hope that Manny will grow up loving his brother by helping others.
In January 2018 our family was asked to be the ambassador family for the Fayette County March for Babies and I was invited to be a family representative on the March of Dimes Executive Leadership Team. We accepted the honors humbled to give a voice to loss families who can often be overlooked. No one knows how to speak with families about their infant loss and quit honestly loss families don't even know what they want people to say. But families such as ours appreciate others remembering that our baby was here and his life mattered. Becoming part of the March of Dimes has turned into a great collaboration with local professionals while giving a voice to families throughout the planning process. When I meet with the team each month I am reminded of how much purpose our lives were given by our sweet Daniel.
We continue to build Loving Daniel and reach out to take on every opportunity to help more families. In the summer of 2018 we were informed that SOBBS, the non-profit from Florida we had partnered with to order the Cuddle Cots, would no longer be ordering them. It took me about a week to pick myself back up from the change. When roadblocks come up with our outreach it rocks my emotions and triggers different aspects of the grief all over again. Losing that partnership made me wonder if we could even continue our efforts. I took a month to research different options and our board determined that Loving Daniel would continue moving forward by dealing directly with the Flexmort company who sells Cuddle Cots. We kept some of our partnership with SOBBS by ordering our donation plates through them and so far it is working well.
At this time we have placed 5 Cuddle Cots in area hospitals and given 3 high school scholarships. The next 2 Cuddle Cots are currently being shipped from the United Kingdom and should arrive here by the end of November. We look at all the people who help with fundraisers, attend memorial events for Daniel, and approach our family with such kindness thinking how great our God is. Yes, we have been through the most difficult path a parent could experience but that grief does not define us. What defines us is what we've done with that grief to help others.
Daniel’s Story Day 29:
Way before we began our non-profit I was thinking of names for it. I had journaled since the day we found out we were pregnant and had filled two journals by Daniel’s first birthday. I tried journaling before without success but this time was different.
When I was on maternity leave, Bill was worried about me sitting at home drowning in my grief. I assured him I would try to make it positive and journaling gave me that outlet. When I journaled I wrote my thoughts and feelings to Daniel. I had done so initially in the hopes that our baby would read them. But I continued doing so after his passing as a way to feel like I was talking to him. It brought me comfort to write to him and was a way for me to work through my grief.
The more I wrote the more I wanted to turn my writings into a book. I’ve shared some of my story throughout this past month but my journals hold much more of the raw feelings and thoughts I had during those years. With the celebration of Daniel’s 3rd birthday coming up on November 6th I have felt even more pulled to write and share his story, our story.
When I was journaling back in those early days after our loss, I thought about writing a book and began planning a title. I put all sorts of combinations together of his name, biblical sayings, and infant loss phrases but nothing seemed right. I worked on book titles for a week then finally became frustrated that I couldn’t come up with the right one. I wanted a title to bring light to Daniel’s story so I began asking myself, what do I want others to get from reading the book? Instantly I knew the only thing I want is for them to love Daniel. That was it, that was my title of the book: Loving Daniel. It was simple yet said so much. Weeks went by and I never started writing more than my journals. I knew God would show me when it was time to write so I waited for His timing.
As we began developing our non-profit we started discussing names and I knew the name God laid on my heart was not for a book but instead for our outreach. We named the non-profit Loving Daniel because everything that goes into it is love and loving Daniel is what brought everyone around us together to welcome him into the world and now keep his memory alive. It amazes me how God knows how to prepare our hearts for things ahead. He had me plan that name at a time when I needed something positive to cling to and now here we are sharing Loving Daniel with so many. Who knows, maybe one day I’ll still write my book too.
Daniel’s Story Day 30:
The face of infant loss is typically the mother and we so often forget the grief of the father. One in four women suffer infant loss, but one in four fathers do as well. Fathers grieve too and Bill was no different.
I held his hand as he sobbed when we initially got Daniel’s diagnosis. We clung to each other as we carried Daniel through our pregnancy. Bill was at every appointment and we equally made every decision together.
He felt the pain of broken dreams especially when we found out it was a boy. Bill had always wanted to have a little boy to coach in sports and share his interests with. He wanted to be a daddy and his dreams for our baby were crushed just as mine were.
I think the role of the infant loss father can be even more difficult than the mother. Bill grieved but also had the burden of carrying me through my grief. He was always trying to do things to make the pregnancy and loss easier on me. We both checked in each other regularly with our emotions to make sure we didn’t fall too far into a pit of grief. He had so much more to take care of along with his grief.
Many men grieve differently and every person has the right to grieve the way they need to. Bill didn’t want to talk with a counselor. He agreed to work through a grief program with me but initially was only going for me. It was very beneficial for both of us because it opened up a lot of feelings we didn’t even realize were underlying in the grief. Bill returned to work after two weeks off having to face the world so quickly after our loss. He worked so hard to protect me as I grieved and for that I will forever be grateful to him.
We were blessed to have a solid relationship which helped us become an even stronger couple through our pain. Many couples pull apart because it is a very rocky and difficult path. We had rocky moments but loved each other through all of them. We still continue to pick up each other when we’re down and help each other grieve when triggers come up. Watching Bill bury his first born son while I was helpless in fixing it was the most difficult time of our marriage. We both felt guilt in not being able to save Daniel, but through it all we kept pushing forward respecting the ways in which we were each working through our grief. It’s so important to remember that dad’s grieve too and need our support through the loss of their child.
Daniel’s Story Day 31:
Although my daily posts about Daniel are ending, his story is far from over. We continue to share his story with anyone who will listen. We know that Daniel was meant to bring us closer to God and encourage one another. My biggest worry was that people would forget Daniel since he isn’t living so it has been our mission to share him.
When people ask how many kids I have I always say two. Then they ask how old they are and I say Manny is one and his brother would be three. I say how he passed shortly after birth but our family has been so blessed by his life.
When people ask if Manny is our only one I say no he has a brother in heaven. Often times I get uncertain responses because people rarely know how to react to it. They typically say they’re sorry and I smile thanking them and saying how Manny was blessed with the best guardian angel. It’s never an easy discussion to talk about death but we can also turn the sadness of death into faith and light. That’s what our family has done and will continue to do.
We have great days and we have horrible days, but even on the horrible days you will find me with a smile on my face because I choose to be lifted up by my faith and know God needs me to walk this path gracefully. Even though we may feel surrounded by fear or sadness we are also surrounded by Christ. He will never forsake us and I know many days when He has carried me.
For all of you who have taken time out of your busy lives to read and reflect on Daniel’s story thank you. My hope is that by sharing some of our journey you will be able to find grace when the mountain is in front of you. When you feel like you are being consumed by fear or pain take a deep breath, feel the sunlight on your face and know you are loved by a God who will never turn away from you. If your faith is shaky that’s okay. Keep moving forward knowing that when you are ready He will be there waiting to welcome you into His arms.
For any families who have lost a child please know that we pray for you every day. That void will remain in your life and triggers will bring different feelings but think of how beautiful your child’s life is with Jesus in heaven. On the most difficult days I focus on how blessed Daniel is not to feel the pain of the world and imagine him dancing in fields with other children singing with Jesus. However you need to grieve do it but don’t let the grief tear you down or bring out hate.
May you all be blessed and do good for others as you walk through daily life. When you have difficult days walk with grace and know that our sweet boy is watching over you too. He and all the saints will intercede for you.
Love and Blessings,
I became a mommy in 2015 to a beautiful baby boy, Daniel John, who taught me the depth of a mother's love and the sorrow of neonatal infant loss.