We were humbled to donate our 3rd Cuddle Cot on November 17, 2016. It is giving the gift of time to grieving families at Ruby Memorial Hospital in Morgantown, WV. We were informed that the hospital has been using the Cuddle Cot approximately threes times per week. It is helping so many families already. It is the first Cuddle Cot in the northern part of West Virginia and only the second one in the state (that we're aware of). Thank you to all who helped make this possible by your monetary donations and to Bill's cousin Robin for taking part in our donation. Thank you to the US Cuddle Cot Initiative and SOBBS for your help and for the beautiful memorial plate. We are so blessed to ensure Daniel's life lives on by helping others.
Ruby Memorial Hospital also has a blog with information about our donation. Please click the following link to read more. WVU Medicine Blog
On September 10, 2016 we held our first annual calendar party to raise money for our community outreach efforts. The outpouring of love and support by so many people has truly touched us. Around 150 people gathered to raise money for local grieving families at the event. We had thirteen tables with themes from Winter, to Pittsburgh Pirates, to Under the Sea. Guests were able to enjoy great fellowship and an exciting day of activities. Donations exceeded our expectations and were so generous that they will enable us to purchase TWO more Cuddle Cots and fund our Annual High School Scholarship. The funds for Cuddle Cot #3 have already been mailed and we are planning to place it in October, as part of Infant Loss Awareness Month. We are so grateful for all those who volunteered, hosted tables for the event, and donated to our efforts. It was a beautiful day to celebrate Daniel's life through service to others. We are so blessed to be surrounded by so many people who love us and love Daniel!!
So often Bill and I are asked how we can possibly get through everything we have with such grace. Our response is typically the same, we don't have a choice but to walk this path. When we found out Daniel had this chromosomal mutation, we didn't get to chose his life's journey. We couldn't say for the doctors to change it, they couldn't "fix it". So we turned to the only person who could decide his path, we fell to our knees in prayer. To us, Daniel's life as a testimony to God's love and mercy. For it's through Daniel's life and death that we are touching the lives of others. Our son didn't died when his body did, his life was just beginning. Although Daniel's life is carried on through us, I think it's a pretty beautiful life. Through his life we have been able to place TWO Cuddle Cots in local hospitals in about 8 months time. Daniel is touching more lives than we ever imagined. I miss Daniel every single day. I sit in his nursery sobbing for him, I walk through a silent house noticing the absence of a crying 8 month old, I spend time beside my child at his grave (not in our home where I want him to be). Yet, for all the things I have had taken away from me, if I was given the choice, I would never ask for him back from heaven. Eternity is our ultimate goal in life. We all live our life out on earth waiting to join our Lord in heaven. How could I dare to take that gift from Daniel. So we choose instead to focus on the beauty of his life, not the losses. Placing the Cuddle Cots is so much more than donating a cooling device. It's about healing some of the ache in a parent's soul when they hold their deceased child. It's about letting that mother and father, who feel so alone (regardless of how much support they have), know that someone else can relate to their suffering. It's about giving time and hope to them as they dread facing each day that comes next. And most of all, it's a ministry that we know God laid before us to encourage others to turn to Him in their pain. I know in my soul that what we are doing through Daniel's life stretches so much further than we can even envision, and we will use each day to heal and carry on this path with grace.
Our Second Cuddle Cot is Placed!!!!!
We placed our second Cuddle Cot on July 18, 2016 at St Clair Hospital in Mount Lebanon, PA. The women in the labor and delivery department were so gracious in accepting our donation and so touched by it. The staff is already planning an in-service training to teach the nurses about using the Cuddle Cot which is wonderful news. Seeing how much the staff values this gift for parents shows me that God truly placed this in the right hands. We also donated a Moses Basket for the parents to rest their child while using the Cuddle Cot and a pair of rosaries with a pamphlet on how to pray the Divine Mercy Chaplet. The rosaries we included were from my recent trip to Medjugorje where I purchased them and a priest blessed them. This donation also gave us a chance to meet some great people, some of which we hope to work with as we move forward with our fundraising and community out-reach efforts. We are so blessed to have so many support our efforts and devote time and money into honoring Daniel's life and memory. I thank God every day that he chose me to be Daniel's mommy and for surrounding us with so many people who love our son.
As part of our healing as a couple, my husband and I have been attending a GriefShare program. It's a faith-based Christian program, which consists of 13 sessions that explore the stages of grief and what the Bible tells us about suffering. When the meetings began, back in January, my husband was very hesitant to go. I think he started attending as a way to support me in my grief. However, I have witnessed how much the program has helped him in his grief and us a couple. The program discusses a different topic each week led by several church members. We have been able to use the group discussions as a way to open up deeper discussion between us as we figure out this path. The grief we have has changed us greatly, so we have done a lot of searching to find each other.
The topic last week discussed how grief is not an identity. I found this very interesting to consider because I don't feel like I use my grief to define myself, but I realized I do in some ways. Actually, I think anyone going through grief could relate to letting it define you in some way. The discussion was about not allowing the grief you face become your entire identity. It really got me thinking about how my grief has changed me and redefined who I am. How can I not allow my loss to define me when I am now a childless mother? I would be lying if I denied crying for myself sometimes thinking of that fact. Although my grief has changed me in many ways, I think the most profound change has been my way of thinking. I always felt that I was a good person and tried to live out my faith. But now, I see how grace only becomes real when you walk through the struggles of life.
People often ask how I am getting through everything in such a positive way. I guess my main thought is that I didn't choose to lose my son, but I did choose how I carried him and how I carry on his memory. If I carried out his life in anger and regret than negativity would have surrounded his life. By choosing to walk through this pain with grace and humbleness, I honor Daniel and am a testimony to God's mercy and love. All Daniel ever knew was love, and what more could a mother want for her baby than genuine agape love? So I think that my grief has defined me in a good way. It has shown me the strength and courage I never realized I could have when faced with deep pain. Most importantly, it has changed my faith and shown me how deeply God loves me. In attending the GriefShare program, I have realized that there is no perfect way to grieve. I know my grief does not define me, yet it has greatly changed who I am. We all walk this path, stumbling and falling over and over again. But each time I fall, God's hand is here to lift me back up. It's up to me to choose to reach out for Him.
Our journey in life has been filled with rivers to forge and mountains to climb. We have often joked that bad luck followed us, but I see how many obstacles in our life have prepared us for the journey we are now taking. We tried for several years to start our family, but of course, it was a long road. After years of trying to have a baby we finally had a positive pregnancy test on this date last year. It's hard to believe a year has past since we first learned we were going to be parents. I prayed so often asking God to bless us with a baby and asking Him why He wasn't giving us this blessing so easily. I see now how He needed us to go through that struggle to walk the road He had paved for us. I think back to one year ago today with joy and happiness. Bill would get frustrated often when I would take pregnancy tests and in his terms "keep wasting money". In his mind it was never going to happen. But on March 30, 2015 it happened! I remember showing him the positive test when he got home and him replying that it was a mistake. I had already prepared for this response so I showed him a second test I took to prove it was correct. He was excited, nervous, scared, and happy for the news we shared together. We didn't notify anyone else until a few days later because we wanted to enjoy that day together knowing our little baby was getting ready for his or her entrance into our lives. All the hopes and dreams of parenting were running through our minds with such excitement. This day still holds so much joy for me because nothing can ever take away the happiness in my heart when I found out I was going to be a mommy. I see how God needed us to prepare for this blessing of our son. I believe that the fertility struggle we faced was helping to prepare us for the difficult choices that laid ahead. I am so blessed that God chose us to be Daniel's parents and will forever hold dear the day that I found out that God answered my prayer by making me a mommy.
The Pope has declared this the 'Year of Mercy' for the catholic church to show us that our God is a merciful God who loves us beyond all our sins. I was attending a church service last night where a local priest was speaking about mercy. Father Bill Kiel gave a beautiful talk about how to seek God's mercy and how much God wants us to accept His mercy. During the talk, I kept thanking God for His mercy on Daniel's life because I know God's mercy was what gave our son those 89 beautiful minutes. At the end of the talk, Father Bill shared a story of a man who felt God's mercy upon him and asked for people in the crowd to share their stories of mercy. No one moved so he asked again if anyone had a story of mercy to share. The next thing I knew I was standing up looking around at all the people in the church telling them about Daniel. I know the holy spirit was guiding me because I shared God's mercy on Daniel in such a peaceful mindset. The words flowed out so smoothly that I didn't even feel like it was me talking. While I was speaking about how Daniel was never supposed to medically have life, I explained how thankful I am that God granted Daniel mercy. I shared how I believe that by so many people praying for Daniel and by Daniel bringing many back to prayer, God gave him life. I see His mercy in our lives and know that part of our task is to share our testimony of His mercy for our son. I think it is important that this is 'The Year of Mercy' and just before it began I was given such a beautiful gift from the mercy of God. It shows that you don't need to seek out justification for what the Bible says and what religious beings tell you to find God's mercy. It's all around us and within our own lives. One of the key points Father Bill shared last night was that we need to also be merciful of others. We can do this through prayer for others, speaking words of mercy, and by caring out merciful deeds. I pray that all of you ask God for His mercy and grant mercy to others around you each day. God's mercy is an amazing gift for all of us.
This journey of grief is one difficult road that causes so many emotions and changes. I've been struggling with some deep sadness the past few weeks and have avoided a lot of activities because of it. When I leave my house I mentally prepare myself to go wherever I'm heading and prepare to speak to whoever may be there. It's a constant inner struggle between my mind and my emotions. Some days I can walk out of the house with only a slight nagging voice telling me to 'keep it together', yet other days I feel like my body is pulling a freight train to the car. Every step makes me feel weak and overwhelmed. When I see people out at the store or around town it's rarely ever a typical exchange. Many have been very kind and ask how I am doing, offering their condolences and prayers. Others just give me a pain-staking look not knowing what to say. Quit honestly, it's as uncomfortable for me as it is for them because I don't even know what I want people to say to me. I start crying when others ask about Daniel and as they apologize I tell them I'm not crying out of sadness, I'm crying out of joy for them acknowledging his life. Even though I cry when I talk about Daniel, it makes my soul happy to share my son with others. I want to talk about his life and presence because he was here, he existed. Nothing can change his passing and moment to moment I don't even know how I will feel. But, no matter what feelings I am struggling through, I always feel joy for being Daniel's mommy. The joy and pride of being his mommy never falters or fades, regardless of all my other emotions. I go through moments of despair that my baby is gone, moments of happiness and gratitude for his life, moments of longing to hold him, and moments of reflecting on his birth (which is the most beautiful memory of my existence). I go through so many different feelings from one minute to the next each day and never know what small instance will change my current emotional state. I walk into the grocery store feeling positive and begin sobbing at the sight of hot fudge because I ate hot fudge sundaes during my pregnancy. I go to the gym and feel complete depression at the sight of a person's light blue shirt because I lost my baby boy. I avoid so many people and situations while I still work to figure out my new path. I know that I will never return to who I was before Daniel, nor would I want that to happen. Daniel has changed me so much for the better and even if it takes all I can do to take one step each day, then that's what I will do. I'll get through this journey one step at a time and ensure that I positively touch many lives along the way. It's so difficult to explain the ups and downs of these last few months. I often have to remind myself that it's only been a short while, so my crazy emotions are okay. So when I have bad weeks, I need to reflect on the fact that I can't expect unreasonable progress from myself. I need to take one step at a time, one day at a time.
Today is the first day of February and I've had some anxiety lately about Feb 6th coming so soon. It will mark 3 months since we said hello and goodbye to Daniel. The 3 month mark has been on my mind often because it feels like time should have stopped for him. Each day that passes I feel like he was just born, yet it feels like such a long time since he was here. I sit in Daniel's nursery daily reading cards we received, reading the words I wrote for his obituary, looking at his photos, and reading his books. I look through all of his clothes, gifts we were given, and hold his stuffed animals. Holding his outfits from the hospital is the only way I can touch something that he touched. The smell of him on his clothes is gone, but to feel the fabric that clothed his body is a treasure I hold dear. I've been praying and talking to Daniel about my sadness of another month coming to pass. I always feel that he hears me and watch for signs of him. Yesterday, he gave us the most beautiful signs that he's around us and it's okay. At church, the first reading was Jeremiah 1: 4-5, 17-19 which was one of the readings read at Daniel's services. It states how God knows us even before forming us in the womb. Then the second reading was the story of faith, hope, and love from 1 Corinthians 12:31 - 13:13. It speaks about the greatest spiritual gifts of faith, hope, and love, yet the greatest gift is love. It made me reflect on how we devoutly carried Daniel with faith and hope, and how the love for him outweighed everything. Bill and I were discussing these readings on the way home from church when a little cardinal flew in front of our windshield from the left to the right side of the road. The bird seemed to move so peacefully across our path and looked no more than a tiny baby bird that's only purpose as to show itself to us. We both felt such a sense of peace from the readings and the cardinal that Daniel knows the pain we are in and wants us to know he hears us. I felt that this was his way of saying, "The time is passing by so you can be closer to seeing me again mommy, not for you to be sad". It amazes me how deepening my faith and sharing Daniel has changed me. My sadness will never go away, yet I can find some peace in the signs that Daniel hears me and comforts me through signs of his presence. I wish no one would ever have to go through this pain, but I hope those who do can find hope in the Lord. My faith has often been the only arms carrying me through this grief. May God bring all of you the comfort for which you seek, and may you find peace in knowing that my sweet baby boy will intercede for you from heaven. When I was pregnant, I prayed daily for Daniel, but now I pray daily to Daniel. How blessed am I to know that my Savior is holding my precious baby in heaven waiting for me to take him in my arms when I greet the gates. Yet the pain in my heart will forever be with me as I walk this earthly life.
Today is a special birthday to celebrate. I've been waiting so many years for this birthday, but the wait was truly in God's time. Today, I celebrate my first birthday as a mommy. It's a different celebration than what I had originally planned when I was pregnant, but it's still an important day for me. It means that because I was born, so now Daniel was born. My birth back in 1985 led to Daniel's birth in November. It makes my birth so much more meaningful and gives me a tangible purpose for life.
As I reflect on the past year, I am humbled that God carried me through it. Last year, I celebrated the big 3-0 and was so excited to see what my 30s had in store for me. I was prayerful that I would be a mommy and last March my dreams were confirmed. Spending the past year planning for a baby, decorating our nursery, and growing in faith are wonderful memories. This past year held so much joy and love, yet also pain and sorrow. My daily sadness for Daniel's passing is imminent, but I don't allow myself to focus on it. Instead, I focus on all the joy from this past year of life. I reflect on my growing belly and how Bill and I laughed often at how big it continued to grow. I think about Daniel's kicks and moves that flopped my belly around and stretched my stretchmarks. I recall the excitement on Bill's face when he felt Daniel kicking for the first time, and how much Daniel began kicking and moving at the sound of Bill's voice each day when he came home. Bill and I often discuss our excitement of becoming parents and making the perfect place for our new baby by choosing the perfect wallpaper border and furniture for his nursery. I can honestly say that my first year in my 30s was the best year of my life; it gave me Daniel. As I celebrate my first birthday as a mommy, I reflect on how blessed and humbled I am that God chose me to be Daniels's mommy this year. Daniel has made this birthday a special one for me because he gave me the best gift I could ever get, him.
When people say "a baby changes everything", it is true in all circumstances. For those parents who have lost a baby, it changes your whole world, or at least it did for us. I look at my empty crib and sit in our quiet nursery each day thinking of this time without him. I read books aloud without a baby in my arms listening to my voice. I look over his clothes laying in his crib with no baby to dress and too much sadness to put them away. Most people have empathy with the suffering pain a mommy encounters, but some unfortunately do not. For some, it is difficult to understand the feeling of loss and pain that parents feel after their baby is gone. And most parents don't want people to feel their pain; they simply want compassion in acknowledging their child's life. The sequence of life events is thrown out of sync when your baby passes away before you. So the only thing to hang onto is their memory and the signs they show you of their presence around you. I look at my son and want people to remember him and his story of hope and faith. I want people to see the grace with which we carried him and respect his life. All I can ask is that others have dignity in respecting him as a beautiful baby that was born to parents who waited so long to hold a baby in their arms. All we have ever wanted is for Daniel to be treated with the same love and respect that every baby receives. We have never wanted him treated differently in regards to how things are done, although we know his life has been so much more meaningful than most babies of his time. No matter what events surround your baby's birth, no one can ever stand in the way of a mommy's love for her child. My love for Daniel is so deep and my love for him will carry me through even the toughest battles. Nothing can ever counter the power of a mommy's love for her son.
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.