“Say goodbye to where you have been and tell your heart to beat again…” “Tell your heart to beat again” –Danny Gokey
Danny Gokey “Tell Your Heart to Beat Again”
Every year since Abby was born I have written a blog post for the Smallest Gift website. Every year the post came easily, except for last year. It was as if I had the words but I did not have the heart to commit them to paper. As I was scrolling through Facebook and thinking about Abby’s upcoming fourth birthday last year, I stumbled across a post by TobyMac. He was telling the story behind the song “Tell your heart to beat again” by Danny Gokey. I had never heard of the song but I soon learned that Gokey’s first wife died of complications of heart surgery. She was born with congenital heart disease. This really caught my interest because of Abigail’s congenital heart defect. The story behind the song was amazing—it was inspired by a cardiothoracic surgeon who had just performed a routine surgery, which involves stopping the heart and placing the patient on heart-lung bypass machine. After the surgery was completed successfully, they attempted to take the person off of the bypass. This is a very crucial moment because the patient’s heart has to begin beating again on its own. This particular patient was still relying on the bypass. The team tried everything and still her heart did not beat independently, so the surgeon leaned down and whispered in the patient’s ear, “If you can hear me, tell your heart to beat again.” In a moment, her heart started to beat again. I read this and I got goosebumps on my arms. I wanted to hear this song for myself so I purchased this song and attempted to download it to my phone. As is not uncommon, it was taking forever so I set it aside and pretty much forgot about it. A few days later I got in the car and a song came on the radio that has always reminded me of Abby and it made me remember that I still had not listened to this Danny Gokey song. I begrudgingly muttered, “Alright, alright, I will listen to it!” I found it on my phone and sat back in my seat to listen. As I listened to the words ”You are shattered, like you have never been before. The life you knew, in a thousand pieces on the floor. Words fall short in times like these when this world drives you to your knees. You think you are never going to get back to the you you used to be…..tell your heart to beat again, close your eyes and breathe it in. Let the shadows fall away, step into the light of grace. Yesterday is a closing door. You don’t live there anymore. Say goodbye to where you have been and tell your heart to beat again.
” Honestly, I listened to this and I felt sick. This song, all tied up in various ways with my baby girl, felt like a message right to my heart, and it was one I was not ready to hear. I felt like it was telling me that it was time to begin a new chapter of healing. You know what I did? Nothing. I did not want to let go of that. I resisted— I tenaciously was holding onto my grief and my pain. Letting go felt like my heart was breaking all over again. The message to me was: tell your heart to beat again and I told the message: not now….I’m not ready. Abby’s birthday came and went and there was no blog post last year. Anyone who has lost child knows that healing and grieving is a simultaneously wonderful and difficult thing. Each day that you feel little bit better is one more day from the last time you held your child in your arms. Somehow, it feels as though healing and moving on is somehow a betrayal to our child. Yet, each of us knows that our children would never want us to suffer for the rest of our lives. Learning to live with both joy and sadness in your heart simultaneously is
not easy. Most of us hold on tenaciously to our grief because that pain is a reminder that no matter how short our child’s earthly life, they did exist and they changed us forever. THere’s also a sense of pride. We lived through most people’s worst nightmare and we survived. We are still here and we still breathing. Some days, just breathing is an accomplishment. Over the past year, I have been thinking about that song. I felt that little nudge again and several times I just stubbornly sat still. Recently, I was preparing to go to a Breaking Beauty shoot. It was focusing on the beauty that can come with loss. All week long I had been thinking about this photo shoot and trying to decide what I wanted to take along to represent our loss and struggle. No matter what I came up with, it just did not feel right. On Saturday before the shoot, I searched my house high and low for my 5 lbs. 1 oz. Abby pillow. I wanted to take that along with some other things representative of the Smallest Gift. As much as I tried to find the perfect things, nothing felt quite right.I was feeling increasingly frustrated until finally I had a revelation. This photo shoot was not to be about the children or the Smallest Gift. It was supposed to be about me
—my beauty and my brokenness. So I stop looking for those items. Instead I looked for things that were instrumental to my healing. I pulled out my red wooden rosary beads. They are well worn and they even missing a part but the felt right. WIth my few items in hand, I set out for the photo shoot. It was a very emotional experience. I cried. I struggled with allowing my pain and vulnerability out there for everyone to see. I reminded myself that sadness and pain and grief are not weaknesses. I’m so glad for the timing of and the opportunity to do this photo shoot with Nicole Benner. There’s something very revealing about looking at yourself in photographs. It’s almost like you are examining your life from an observer’s perspective. It gives you a unique vantage point. As I looked at the pictures, I was surprised to see someone whose heart has already started to beat again. Unknowingly, and apparently despite my resistance, a new stage of grieving and healing had already begun. So here I am, one year late writing the blog post I was supposed to write last year about grieving and healing and turning the page to a new chapter in our lives. I can tell you honestly that doesn’t hurt any less. It still hurts terribly but it feels like there’s something new and fresh now. It’s like my heart did stop beating but it’s now beating again. Somehow after it was broken into 1 million pieces, it’s patched back together it is something that is bigger and more beautiful than before. I’m still broken. I still cry. I still sometimes cry out to God “WHY???” but on most days, I’m grateful to be broken. From this spot of brokenness, there is much beauty, much love, much empathy. It allows me to sit quietly with a person who has just lost a loved one or walk alongside a patient who is dying, or help another grieving family through our work with the Smallest Gift. That is truly beautiful. I am truly grateful. My life is deeply, deeply enriched because I am their mother. The big surprise was, as it turns out, I didn’t need to tell my heart to beat again. Apparently, there was another quieter, persistent whisper of encouragement all along. It was my daughter. It was the Blessed mother. It was Jesus. It was the voice of the angels who came to carry my daughter home. It was the laughter and kisses of my son. It was the steady support of my husband. It was the patient ministering of my very devoted friends and family. It was love.
There’s a quote from Rumi that I love. When asked about the pain and sorrow that is carried in the human heart, God says, “Stay with it. The wound is the place where the Light enters you.” So true.
Happy Birthday, baby girl.
A few months ago, The Smallest Gift received a note from a woman whose niece had died of SIDS several years ago. In her beautiful letter, she described how she had taken care of her sister and mother through the loss of their precious Adyson. It was an eye opening moment for me. Her letter made me realize what my sister must have endured during that time as well and I wept with remembering. Immersed my own grief these three years, I had not really thought about how deeply my sister must have been affected. Despite this, she found the strength to carry me when I was too weak to walk on my own. This has inspired me to write my 3rd birthday post for Abigail in honor of my sister, Abby’s “Titi” and Godmother.
My sister is an OB nurse at a major hospital; in fact, the same one where we delivered Abigail. She often sees other grieving families in their worst moments and somehow she finds the grace to face her own memories and pain to help make their experience as easy as possible. She called me the other night to tell me of several ideas she has for their current bereavement program. Before losing Abby, she was a thoughtful and kind nurse and an advocate for her patients. After losing Abby, her empathy has taken this to an all new level. She has lived this situation. I am in awe of the strength it takes for her to do her job and to do it so well, in spite of her own memories and pain. I know she doesn’t see a single bereaved mother without seeing me. In heartbroken family members, I imagine she recognizes herself. I have learned that no matter how much time has passed, the intensity and feelings of raw loss do not fade. You can be transported back to those painful moments in an instant. I recognize that it takes a lot of strength to meet that sadness and grief head on in an effort to help other people. So, approaching Abby’s third birthday, I would like to dedicate my blog post this year to my sister.
Thankfully, my sister and I have always shared a very close and strong bond. When my husband and I became pregnant with twins after many years of infertility, I had no idea how much I would need my sister. I don’t know how I would have survived our losses without her. I have some total lapses of memory from that time but there are some things that I vividly recall. When my water broke in the middle of the night at 32 weeks, she immediately left work and came to me. When I eventually arrived at Hershey, where she works in OB, we knew only that they had detected a problem with Abby’s heart. Meg was not working that day but she was there already and quietly took charge. She wasn’t happy with the way the nurse washed me (I was on mag and could barely move, let alone walk) so she washed me herself. As the days stretched into weeks, she brought food and cards and pictures and flowers and she drove over an hour each way to visit almost every day that I was on bedrest. When I knew she was working on the floor I felt so peaceful. I slept so much better when I knew she was near. I was filled with panic and fear and my mind felt so muddled. I needed her to help us make decisions. Her knowledge was invaluable and her support in decision making gave us some much needed confidence at the time.
When I eventually went into labor, I remember her calling our parents and saying, “Guess who’s having a baby today?” She was so excited! She had just worked all night yet she didn’t leave my side for a second. Those moments together (especially when it was just the two of us) are so precious to me. I can remember being in a panic right after Abigail was born and saying, “Meg, is she ok?” and she said, “Yes, she’s ok.” and she was crying too. It didn’t matter that a whole NICU team was there, the only person I trusted to tell me the truth in that moment was my sister. That morning we learned the devastating truth that our little five pound daughter had not one, but two terrible heart defects. We thought our anxiety couldn’t get higher- it did. Our hope was stretched thin. After three anxious weeks on bedrest, this seemed so daunting and overwhelming. The next night, I was awakened by my whole body shaking. I had lived with anxiety and fear every second for the past three weeks so immediately I assumed something was terribly wrong with me. It was dark in my room and I was scared. My shaking woke my husband who called for the doctor. He checked me out and said I was fine but had the good sense to call my sister, who happened to be working that night. She came over and she said calmly, “You are fine. You are having an anxiety attack. I am going to get a wheelchair and we are going to see Abby in the NICU.” We did and she was right; I felt better. When our priest came to baptize Abigail, Meg was there as her Godmother. She brought a blanket and Easter hats and things that you bring for “normal” babies. That comforted us immensely. Those are some of the very few things we have to remember our daughter now.
The day of Abigail’s heart surgery, Meg came early to see Abigail before she was taken to surgery. We didn’t know if we would see her alive again and the hours and hours she was in surgery stretched on forever. Meg brought “Prayer warrior” T-shirts for all of us, food, and a bag of things to try and keep our minds occupied. I remember my feet were swelling out of my shoes and she brought lotion and rubbed and massaged my feet to help the swelling. I laid with my head in her lap for a long time. It was a tenderness that I will never forget.
I don’t know now if Meg ever got to hold her niece but I know that she loved her as fiercely as I loved her. I know this because that is how I love her children. I don’t remember calling her to tell her Abby passed but I do think back now and realize that she had to drive all that way to the hospital by herself. She was the one who helped us bathe and dress her. She was the one who thought to cut a lock of Abby’s hair. She was the one who convinced me to let them make molds of Abby’s hand and foot, keepsakes that I now treasure deeply. I am so grateful that she had the insight to realize how valuable these items would be and made sure we got them.
Meg was there at our home when we met with the funeral director the following day. I know she had to go to the funeral home to take photos or something. If there was something difficult to do and she could take that task on for us, she did it. The days of the viewing and funeral, I remember her physically helping me to dress as I sat in the bathroom saying, “I can’t do this.” I remember walking in to see the tiny casket at the funeral home and holding Rob’s hand on one side and hers on the other. I still feel her hand in mine. I could barely stand and they held me up. I once heard that in times of tragedy the greatest gift we can give someone is to just be there with them, to bear witness to their pain and loss. That’s what she did for us, in spite of the pain and loss she herself was experiencing.
Why do I share these memories? To show others what an amazing sister I have? Well, yes, there is that. But on a deeper level, I am in awe of the fact that in the midst of raw and unspeakable and ugly grief and loss, such beauty and tenderness emerge from the way in which we care for each other. I am thankful God allows me to see this now, three years later. It leads to me to ask– where do we find this strength to care for each other when we are broken and battered too? This strength and Grace, it comes from God. We become His hands and feet. The desire to care for each other despite our own pain is a reflection of God’s love and Grace. This love, this servitude, this selflessness that Meg demonstrated are pure and true. I can’t help but think they please our Father immensely.
I would be remiss if I did not share another beautiful event that occurred not even a year after Abigail’s birth and death. My sister, once again at work on that same floor, brought us the bassinette carrying the baby boy who would join our family through the miracle of adoption, only minutes after his birth. I have often marveled that there are few situations in life that are so beautiful and right and perfect.
This year, I honor my sister, Abigail’s aunt. I can’t help but think this pleases Abby immensely too. Meg, I am so thankful that you are my sister! I love you!
Kodey’s 10th birthday 1/28/2015
by Jenny and Sherman
The end of May 2004, our family’s life changed drastically when we purchased a herd of dairy cows. At that time for a few weeks, I was not feeling well. I thought I was stressed with this new way of life and I would get better soon. I soon discovered that we were expecting a baby. What a shock! Why right now? God works in miraculous ways! Why not another blessing to add to our family? We were happy and sad all at the same time. The thought of another baby took some getting used to, especially since Katey was only a year old and I just gave away all of our baby clothes.
Oh, the thought of being pregnant again – I hate being pregnant! Even worse, the thought of going through labor again. I cried because I was so scared to have to do it all again. Another issue that I had to deal with was the fact that I had miscarried several times before having Katey and I needed progesterone in order to not miscarry again. I needed to see the doctor asap. We struggled back and forth with the thought of having another baby but we knew we needed to accept it because it was going to happen.
Once I heard the heartbeat for the first time, I was so excited and overwhelmed with joy to be helping God with another miracle.
My pregnancy went well and then our family experienced the most heart-wrenching loss that we hope to ever endure. A couple weeks before my due date, I realized that I hadn’t felt the baby move for some time. After calling my midwife, I made a very fearful trip to the hospital. The nurse in labor and delivery tried to find a heartbeat. She searched for a few minutes and then said “I will be right back.” My midwife then appeared and ran an ultrasound on me. While looking at the screen, I could tell that there was no movement. She looked at me with hurt in her eyes and shared her heartache with me when she explained that she was unable to find any movement. She took me to the hospital’s ultrasound tech to confirm that there was no life. I honestly can’t remember what really took place after my midwife told me there was no heartbeat. The hardest thing I had to do was call Sherm and tell him over the phone. We both cried and he came as soon as he could.
In the process of figuring out what would happen next, my midwife said we could wait until my body was ready to birth the baby or I could be induced today. Today! I am not ready to have this baby today! Sherm had called in help for the day to do our barn work but I couldn’t do this today. I needed time to take this all in. We decided to wait until the next day, Friday, the 28th of January.
We had so many emotions and questions. How is this baby going to be born? What will happen when he is born? What will he look like? What about a funeral? Will we get to see him, hold him, or can the kids be a part of this? What did I do to hurt my baby? Sherm assured me- it was not my fault. God’s plans are not ours.
We were truly blessed to have waited the extra day because we were able to talk with a neighbor who had lost a baby in a similar way. Some of our questions got answered. We were encouraged by others who visited us that night and help us deal with the pain.
After a long restless and sleepless night of worry and being nervous, we prepared for our day of not knowing what was going to happen. Sherm prayed that we could be strong, that all would go well and that we would have strength to get thru labor and whatever would follow.
I was induced around 8am and at 1:43pm, our baby boy was born silently. Kodey was the splitting image of Korey and Katey. How could a baby so perfectly made by God, with nothing visibly wrong, be born dead? Sherm did very well until he saw no life in our baby. Why us? There were many tears.
We had an awesome bereavement nurse who was with us from the beginning of labor until the birth. She supported us, answered our questions, and took photos for us. She shared with us in our loss. I mention this because there was no other support group.
We were able to cherish Kodey as long as we wanted. Our other two children were able to see him and hold him. Korey was very sad. Korey was hoping the baby would be born on his sixth birthday. He was looking forward to having a brother to play football with. Poor Katey, at the age of one and half, was distraught because she couldn’t be with her mom. She wasn’t able to understand what was happening (at least, that is what we thought).
A few hours went by and we decided we could let go of his body. Sherm went to tell the nurse. I put him in the basket that the nurses used to carry stillborn babies in and she took him away. It was so hard to let go but when we did we were filled with peace. It was a peace only from Jesus. We knew he was safe in heaven and well taken care of. We knew one day we would be reunited again. Life on earth is hard and he was able to miss all that and go straight into Jesus’ arms forever. Thank you God for the time we had with him. Some days, I long to feel that peace again.
In the hospital, the morning after, I was awaken by a lab tech who needed to draw blood. She was very chipper for 5 am and wanted to know if I had a boy or a girl. I believe she had no idea that there was a bereavement sign hanging on the outside of my door. I told her a boy and she congratulated me. Now that I was awake I went to see the babies in the nursery and decided I needed to search God’s Word to help me thru my first day without my baby. Of course, I never thought to pack my Bible so I was so thankful for the Gideon’s for placing a Bible in my room.
It was so hard, and still is, to understand why God would bless us with a child at this time in our life only to lose him before we knew him. There are no words to describe the feeling of what we went thru. Only others who have a loss like ours know the feeling. I was expecting a baby. I just had a baby so why am I leaving the hospital with empty arms?
We received a lot of support after we got home. We had so many people bless us with help on the farm, at home and with our children. We received encouraging words, hugs, food, money and time. The thing that most stands out to me is the two young families, both expecting their first baby, were there with us and supported us more than I thought they could possibly do. It must have been so hard to be with us and not think about it happening to them. God blessed us with many people who shared their love and compassion and most importantly their prayers.
I stated earlier that we didn’t think Katey knew what was happening so I was surprised when she would continually bring me her baby doll to hold and take care of. She would lay her doll on my lap and leave it with me while she went to play with something else. She understood more than we know.
Ten years ago on February 1, 2005, in a little white box, we laid Kodey’s body in a grave. Our minds were put at ease picturing Jesus holding our little one in His arms. In times of trial and suffering, we must put our trust in God to help us grow stronger and make our relationship with Jesus closer. We asked our Pastor to share from Romans 8:28 at the service. “And we know that in all things, God works together for the good of those who love Him, who have been called according to His purpose.” He shared from another source that for the Christian there is no such thing as a tragedy because ultimately any painful time will become a blessing from God.
I also want to share an acceptance of Christ because of our witness during Kodey’s funeral. We had decided to only have immediate family at the service, which would include us, our parents, siblings and their children. My parents had already told my grandparents about the service so we let it go and thought this would be a great opportunity to share our life in Christ. My grandfather was very sick with cancer. He was not able to leave home more than necessary but he was determine to come to the service. On his way home, he mentioned to my dad that he was glad to hear what I shared during the service. He was glad he could make it. Five months later, he passed away after receiving Christ as his savior. Praise God! I was excited to know that my testimony of Christ’s working in my life and our attitude during our loss was shared with my family and may have contributed to planting a seed.
God provides us with comfort and healing thru our sorrow and loss when we need it. There are still rough days and struggles of what would this little guy be like, what would he look like, how much fun to have another one of us to love. I am reminded of these things every once in a while when I look at other boys who are his age or looking thru photos of Korey at that age. One of the biggest reminders we have is that of a family who attended the same church as us at the time. They had a baby boy that same day in the same hospital. I am taken back to the birth and loss when I see this little guy and think that he was given life the same day our son was taken to Heaven. God gives my heart joy when he reminds me that Kodey is my family in Heaven.
Out of all this, we have been able to witness of God’s love. We have been able to minister to other families with the same loss. We have talked with others, sent cards when we see an infant’s obituary, and provided helpful books to support others during their time of sorrow. More recently, we were able to help with The Smallest Gift’s fundraiser at our church. It was an awesome privilege to share in this event that has and will reach many families with support and encouragement. It opened my heart up to help with my grief that has been pent up for 10 years. We were given a heart and blanket as a gift from The Smallest Gift organization, which is one of the ways they help hurting families. We were blessed to get to know people who have lost a precious child just like we did.
Because we believe Jesus died for us and we trust Him as our Lord and Savior, we have a wonderful hope, which only God can offer, knowing that we can one day hold our Kodey in heaven forever.
2 Corinthians 4:8-9 16-17
We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t know why things happen as they do, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going…. Though our bodies are dying, our inner strength in the Lord is growing every day. These troubles and sufferings of ours are, after all, quite small and won’t last very long. Yet this short time of distress will result in God’s richest blessing upon us forever and ever!
Five years later, God blessed us with Koltlyn! It was a very mentally stressful pregnancy but God is good! He gives us our heart’s desires.
We are quite busy in our home. It doesn’t seem like there’s much down time, but it’s the way I need it to be. When I was about five months pregnant with McKinley we got a letter that our children’s school would be closing. Up until this point I felt that my husband and I had done a good job protecting our children. How can you help your child though when a Bishop decides that he no longer wants to keep a school open?? I could see the sadness on everyone’s face. In just a few short months we would no longer be part of our school family. Along with others we tried to fight the closure, but we had no control. No matter what we did or said the school would close. Just a few months later we gave birth to our daughter. Once again we would feel that same lack of control. No matter how much we loved McKinley and wanted her she would not be able to stay with us. If there was anything we could have done we would have. We had no options though. No choices. The decision was already made and we had no control.
Fast forward to 2.5 years later. One of my daily struggles is still with control. I know from life experiences that we can’t determine the outcome of everything so I control whatever I can. I’m not saying my house is always perfect (far from it), but when I see that coat laying on the floor or the mail on the counter it drives me crazy. When my children don’t want to do homework or they don’t follow directions I go into “mean mommy” mode. My patience just isn’t the same. I need to have control now because 2.5 years ago I didn’t . We lost our daughter. Our other two children, that we wanted to protect, lost their sister. And then, just a month later, they lost their school. It felt like in a moment our whole life as we knew it changed.
The choices we make in life reflect who we are. But what about when we don’t get those choices? What about when a higher power makes the decision for us and we don’t have the choice to control our destiny? I often wonder why we were so lucky and got to meet McKinley. She had Trisomy 13. Most pregnancies will end in a miscarriage or stillbirth. When it first happened I wondered if it would have been easier to lose her earlier on. To not meet her. I quickly came to the realization though that those five days will live in our hearts forever- both the happiness and the sadness. I read the messages we receive for the gift requests and the one recurring theme is how much love we all feel for our children. I believe that you all are proof of how much a parent loves their child from conception (and even before). It doesn’t matter if the pregnancy only lasts one day. In that day you become a parent to that child and you realize the love for a child is overwhelming.
I’ve learned that control is important. I’ve also learned that I am not able to control everything. When the unthinkable happens or we have a day that it is hard to get out of bed or we don’t know how to go on we need to put it in someone else’s hand. Whether that person is the God you believe in, a friend or family member or someone that you trust. Sometimes we just need to let go. I’d like to say that as I look at the pile of laundry or the reports I need to finish for work I’ll feel no stress. I know I will though. And you know what? It’s OK. I might need control in some things, but I’ve also learned that for some things it’s out of my hands.
I never thought that I would be sitting here with this heartache because I never thought this would happen to me. This is the stuff that happens to other people and you feel sorry for them, say a prayer for them, and then every now and then think about how difficult a special date or holiday must be for them without their baby in their arms. Since this became our reality, I haven’t had a day where I didn’t feel a deep despair. I haven’t had a night where I didn’t have a flashback of waking up in the operating room with the bright lights and a tearful nurse holding my hand telling me that our baby had died. I haven’t had a moment where I didn’t yearn to hold our baby boy, Xavier Banks. He should be 2 months and 17 days old today. We should be bonding over breastfeeding and learning to coo and smile together. I should be using that fancy camera that we bought when we learned, after years of infertility, that we were finally going to be blessed with a child. My tears should be about having to leave Xavier for eight hours in order return to work after my maternity leave instead of the daily tears of having to live a lifetime without him. A lifetime is a long time…. As I watch the babies that were due around the time of Xavier’s due date be born and grow, I am torn apart; yet I want to hold them, close my eyes, and pretend for a split second that they are Xavier and this has all been a terrible nightmare. Despite the heartbreak of Xavier’s death, I would never want erase his existence from our hearts. He is so very real and special to us. His short life changed both my husband and I in so many positive ways. He gave us real happiness. He brought us closer together and made us a family. For the 21 weeks of pregnancy that we were blessed with, we were truly, deeply happy. It was a happiness that you cannot get from material things and something I had never experienced prior. They were the best 21 weeks of my life. Even though Xavier is not here with us, Xavier made me a mother and my husband a father, a gift that we will always treasure. Xavier gave me God as well. His too short life brought me so close to God that sometimes I feel his presence so strongly it startles me. It is a closeness that I am certain I would have never experienced had my world not fallen apart. Do I believe God caused this to occur so that I would know Him? No, but I believe God was missing in my life and He seized the opportunity to mend my brokenness and give me a chance at eternal life. I feel that it gives my little boy’s life even more meaning, as I truly believe that Xavier saved me. Now, my hope is in being able to spend my life after this earthly life with my child. The loss of Xavier also softened my heart to the heartaches of others. My heart was hardened by all the terrible things that happen in the world, and I had developed a “life goes on; suck it up and deal with it mentality.” Now, I am more empathetic to the hardships of others. I can understand and empathize with them, and for this, I am thankful. Don’t get me wrong, being happy and thankful these days is a daily choice. I struggle every day to wash away my anger that my friends are holding their babies at night while I’m kissing one of the few pictures of our stillborn child. I have to remind myself that it isn’t their fault that our baby died. I have to remind myself that we are blessed to have such wonderful friends and family and they are only human. I have learned that good intentioned people say silly things when they are trying to comfort you. I have to remind myself that they mean well and just simply do not know what to say. I have to remind myself to not take out my hidden rage on them when they are just trying to help. Fortunately, we have the support of others who have had similar experiences. It is the seasoned folks who have ridden this emotional roller coaster through their own experiences of loss that seem to help the most. Their hearts naturally seem to understand ours. They seem to know when we need a hug, need to talk about Xavier, need space, or need a project to memorialize our baby. I have found such people who understand our hearts in The Smallest Gift. This organization has been there since day one, and I don’t know what I would have done without these wonderful people. Not only has having people who truly understand been helpful, but their gifts provided us with something to hold onto physically as well. They provided us with the things that others without such experiences would not consider. Personally, my fabric heart that weighs nine ounces, the same weight as our little Xavier, has been such a comfort to me. I lay it on my chest and close my eyes reminiscing of his perfect little nose and lips, his dainty little hands with five perfect fingers each, and his two breathtakingly perfect feet with his second right toe, like his daddy’s, just slightly longer than his big toe. It is such moments that allow me to maintain Xavier as part of my earthly life and make moving forward day to day bearable. The world continues to spin and people move on, but we will never forget his precious life. He was a baby, our baby, who we were supposed to guide through life, share milestones with and love unconditionally. Since we can no longer do these earthly duties that so many people take for granted, we have chosen to carry Xavier Banks Pyle in hearts until we can embrace him again.
I asked my friend, Mandy, to write an article about how to be a friend to a grieving family. Many things are hazy in my mind about those early days of grief but I do remember her showing up in my kitchen with an armful of lilac and saying, “I feel like I should be doing something for you, but I don’t know what to do.” She went on short walks with me, cooked me food, and she texted and called me regularly even though I wasn’t very good at getting back to her. One night I had the daunting task of cleaning up the wilted and dying flower bouquets sent to me. I called her and she immediately came over with trash bags and helped me with this very depressing task. She took the garbage homes and a box of vases and delivered them to the florist to me. That may seem simple but that task seemed nearly insurmountable to me. Having her help and take charge was a HUGE blessing. Another thing Mandy does is regularly remember my babies. She takes her daughter on walks to Abigail’s grave and most of the presents she buys me for the holidays and my birthday are some way related to my children in Heaven. There is no greater joy to any mama’s heart than to have her children recognized- this doesn’t change even if your children are in Heaven.
The Worst Thing You Can Do Is Nothing
Being a friend of someone who has lost a loved one, especially a child, is a fine line to walk. You want to do something. You don’t know what, but you feel the need to do something. But you don’t want to smother them. The worst thing to do is say “I didn’t know what to do for you” and do nothing. I never did anything earth shattering. I never gave anything expensive. I was just always available if the time arose that I was needed. There is nothing you can say or do to take the pain of losing a child away. But you can do something to make the grieving parent feel loved, cared for and heard. Examples of things you can do are send a card, a quick text, a little care package of everyday essentials (most people who lose a child don’t even want to get out of bed), send them a small arrangement of flowers or offer to go for a walk with them. They don’t want to go in public. They don’t want to answer the question of “how are you doing?”
Unfortunately, I am a friend of a few people who have lost children. It is hard being the friend of the grieving parent as well. I went through the grieving process too, but I was the one who needed to step up and be the strength for my friends. I was and am still willing to help in whatever is needed. I think this is how I was helped through my grieving process. The thing people don’t realize is the grieving process for the people who lose a child never completely goes away. Often people think that as the days and months and years go by, the grief goes away; or if they have other children, the grief goes away. The question is, which child that you have could you live without? None of them! There will always be a void for the child that was lost. Don’t say “it will get better as time goes on” or “this is all in God’s plan for this child”. Both of these may be true, but neither one should ever be said to someone who has lost a child.
The best advice I can give for being a friend of someone who has lost a child is to just be there. I have called their house knowing they would not answer their phone and prayed a short prayer for them over the phone. I have picked flowers for them out of my garden and dropped them outside their door, knowing full well they were at home. Sometimes the grieving want to talk about the child, sometimes they don’t. Sometimes they want to be mad at people for not coming or be mad at them for coming too often. Sometimes they want visitors, sometimes they don’t. Everything that goes on in the grieving process is okay; you just need to be there for all of it. As painful as it may seem, they will remember that you were always there.
Part two: PTSD and EMDR
I will forever be grateful to my friend Dr. Chuck Middlestead for coming to my rescue only a few days after we lost Abigail. He quickly realized that I needed a psychiatrist for possible PTSD and miracle of all miracles, I had an appointment within a few days (anyone in the healthcare profession knows that it usually takes weeks, usually months to get a pscyh appt). The intake counselor had lost an infant herself after years of infertility and her niece had lost an infant around the same time we lost Abigail. She took one look at the broken and battered shell of me and said, “You need to see Beth. She can help you with EMDR.” Despite being in the medical profession, I had never heard of EMDR. It stands for Eye Movement Desensitization Response. It’s a relatively new technique, described by Francine Shapiro in the early 90’s. She observed that that the intensity of memories could be eased by accessing those memories while alternately stimulating both sides of the brain. They initially used movements of the eyes to stimulate the right and left sides of the brain, but later they developed these neat little devices you hold in your hands that alternate vibration and the intensity and length of the vibration in order to stimulate the brain.
Sounds a little crazy, but it makes sense. It’s kind of like this: While making a normal memory, the memory centers of the brain activate and neatly package the memory in the right spots in the brain. It’s orderly and neat. Your brain knows just where to go to find that memory when you want to remember. However, in the middle of severely traumatic events, the brain cannot process things and store them to memory in a neat and orderly way. It’s functioning in a very basic mode. It’s trying to take everything in and just store it somewhere—anywhere– while it is set up in survival mode. Instead of memories being neat and orderly and file properly, it’s more like a bomb went off and memories are like shrapnel, scattered all over the brain. It’s messy. An extremely anxiety provoking memory can be tied to something harmless. For example, hearing the beeping of the washing machine triggered my auditory memories of the PICU medical equipment. Seeing the ugly plastic mugs at the nursing home triggered my memories of being in the hospital for so long. Innocuous things or events or sound trigger a memory and stumble into a land mine of traumatic memories. EMDR requires you to access these memories and then refile them in a more organized manner. By alternately stimulating each side of the brain, it helps ease some of the intensity of the emotion attached to the memory. It calms you enough to process the memories and reorganize them. The memories are still all there, but instead of stumbling into them, you can access them at the appropriate time and place. As with all psychotherapy techniques, it is a little more complicated than my simplified explanation above.
If you are experiencing PTSD symptoms, or you find yourself melting down over the beeping of your washing machine or at the sight of a coffee cup, I highly urge you to learn about EMDR and search for a qualified therapist in your area. It does take time and dedication and the courage to face your most difficult memories, but I can honestly say that without these months of therapy, I do not know where I would be right now.
PTSD: Part One
I haven’t written a blog post for awhile. The truth is, I have a lot to say but can’t seem to find the right words. My friends will say, “Really, you? At a loss for words? No….” Maybe it’s that I know some people say, “It’s been over two years and surely things should be better by now.” And, yes, they are. Life hurts less. Joy has returned. I laugh. I work. I still cry though. I miss my son and daughter. The nature of grief is that your loss never really leaves you. I have heard it said that time heals all wounds. The truth is that any mother who has lost her child knows that a part of you stays in that moment forever. There are memories that will not leave or lessen in their intensity no matter how much time has passed. There is a part of your heart that dies with your child. Time is tricky. Memories can seem like yesterday but simultaneously like many years ago. In times of intense loss, our sense of time is completely skewed.
I had PTSD after losing Abigail. There, I said it. I had to see two different counselors for nearly a year to get through this time of my life. My own coping mechanisms were overwhelmed: I had lost two children within three months of each other. I spent nearly a month in a tiny hospital room on bedrest, praying that I wouldn’t get an infection which would kill us both and praying that God would heal my baby. Every single second I was awake was filled with anxiety and fear. After she was born, there were no words to describe how traumatizing it was to see my baby after her heart surgery. Things were so bad that we only allowed a very few people to see her. We were protecting them.
After she died, I knew I needed help. I spent six months in trauma therapy. I drove two hours roundtrip to see an EMDR therapist for nearly six months. I’d drive back from my appointment and work for seven straight hours. It was some of the hardest work I had ever done. Sometimes I had to sit in the parking lot for an hour before I felt calm enough to drive. Looking back, I recognize that it was the grace of God that gave me the strength to do that. I worked so hard in therapy. I had to be willing to face those most excruciating memories. Things improved to the point that the beeping of the washing machine wouldn’t throw me into a panic. I could walk by those ugly plastic mugs at the nursing home and not be reminded of the many times I got my coffee in one of those while in the hospital (translated: when my baby girl was alive). I was able to function. I was proud of myself. My hard work was paying off. And then one day I got the mail and there was a newsletter from the Ronald McDonald house. On the front was a picture of a baby, after heart surgery, looking just like our Abigail. When I say it brought me to my knees, I mean that literally. I could not look at that without hyperventilating. I showed two friends and I said, ‘This is what haunts me. This is how mutilated my baby was.” I needed them to understand the memories that I was working so hard to deal with. I realized that by not allowing them to see her after surgery, I had robbed myself of their understanding of the severity of our trauma.
Given time and therapy, the flashbacks eased. Mostly the memories became normal memories. Painful, yes, but not the “drive off the road” anxiety attack- provoking kind. And then one day last winter, I walked into my Advanced Cardiac Life support class and saw the infant mannequins piled on a table in the classroom. I had a flashback so powerful that I ended up hyperventilating in the bathroom. Honestly, I had no idea that this was going to happen. I could not have predicted this. Those infant mannequins look more like aliens than real babies but seeing the instructor in her white coat standing at the front of a long line of mannequins and thinking about doing infant CPR on them….total meltdown. In the end, I survived. I passed. I don’t even remember doing the infant CPR part. I know I did, but my brain just sort of dissociated. I did what I always do: I prayed.
I had a hard time talking about my experience initially. Why? Maybe because I felt weak? Or stupid? Or mad at myself that I could still be affected so deeply? Maybe because I didn’t think others would understand? Finally, my wise friend said, “That’s not weak. That’s a momma who loves her daughter and still grieves for her.”
So what’s my point? If you are like me and you are dealing with PTSD or even if you are not-be kind to yourself. I think this is normal—no, I know this is normal. I am convinced grieving takes years. Maybe we spent our whole lives grieving our children; it’s just that each year we do it in a different way. I don’t know. I’m not an expert. I don’t have it all figured out.
Jeannette suggested the title for this blog post and I thought it was entirely appropriate. First, let me say that I am making myself vulnerable and writing this to help other people who are grieving. I think our experience was rather normal and what most people experience after the death of a child. However, in our society, we expect people to endure an unimaginable loss and still go on and function after the three days that most jobs allow for “funeral leave”. We do not allow crying and wailing and we certainly wouldn’t approve of falling on the floor and screaming in pain. We tell people to calm down, take a deep breath. Get themselves together. Focus on the positives. While this sounds like good advice, the truth is that is impossible to do. In order to heal we have to realize that grieving is tough work. It’s messy. It’s not pretty. It’s the sobbing, snot flying, screaming temper tantrums that can release some of the pain in our hearts. And it takes a long time. There really is no appropriate time frame. Still, a year and a half after losing Abigail I am still not able to do the same things I was capable of before our loss. My dear and wise mentor Dr. Martin told me it will be three years before I feel like myself again. I believe him. I think this process of grief applies to loss of any kind, not just a child, although losing a child is most people’s worst fear.
I am going to make myself vulnerable and share just a few of the really dumb things that we did after Abigail died, in the hopes of helping others who are grieving the loss of a loved one and are struggling. Again, I do not feel our experience was at all abnormal. I think this is the normal for grieving families but our society somehow makes us feel weak, at fault, abnormal. I tell grieving families often, “You will feel like you are going crazy. It’s ok. You are. But you won’t be forever.”
1. Last fall the trash truck stopped picking up our trash bags. At first we thought it was just a fluke. By week three, we had several trash bags piling up in our shed and we realized we had NEVER PAID THE BILL! How embarrassing! We were always the type of person to keep track very diligently of these things.
2. Despite multiple LARGE notes on our calendar on the fridge as well as the actual bill clipped to the calendar and waving in the breeze every time the fridge door was opened, we forgot to pay our taxes on time last year. A day after the due date we thankfully realized it and scrambled to get the check mailed in……only to open the checkbook and discover that we were out of checks altogether. That was one of those moments when I just sat down on the floor and cried. We ended up paying the penalty fee even though we were only a few days late. It just felt like more salt in a gaping wound.
3. I could not cook a real meal for months. I am not quite sure what we ate or how we survived but we did. I suspect it was meals cooked by my mother or my sister. I remember making mini brownies for a Fourth of July picnic and I was so proud of myself. I finally made a simple meal of chicken and pasta in late summer. I burnt it but it was quite the accomplishment. I was previously the woman who could cook several meals at one time in order to freeze meals ahead of time.
4. I had to be very patient with myself when I went back to work. Initially I was seeing only 4-5 patients a day (typically I would see 20-30). At first I worked half days. I will be forever grateful to Family Practice Center and my partners and colleagues for allowing me as much time as I needed to heal and picking up my work until I was again able to safely function. I looked everything up, not twice, but three times. I double checked doses of medicines I could have prescribed in my sleep previously. I knew my brain was not working properly so I triple checked myself. I wrote many, many notes to myself. That took tremendous energy and effort and was exhausting. Before our loss, I had a remarkable memory for the things my patients tell me about their lives. I remembered when and where they went on vacation, what was going on in their childrens’ lives, where they like to shop, etc. In those early months, I could not remember even seeing people for an office visit, let alone remember the minute details of their lives. That lack of memory is a VERY unsettling feeling, even now. There are several months from the spring and summer of 2012 of which I have very few memories at all. Again, this is very normal. This is our brains’ way of shutting down when it is overloaded. Thankfully, my patients were loving and supportive and patient with my healing process. And, I took great precautions to make sure that I was providing them safe care.
5. All this did not come without cost. I basically had enough energy to get through the week. Just the effort of interacting with people- and yes, answering their questions and receiving their heartfelt sympathies- was the extent of my physical and emotional energy. I was not able to do anything on weekends other than hide out. I read a lot of books (don’t ask me which ones though). I took naps. I hiked in nature. I holed up with my husband and my family. I could not entertain. I could not cook a meal. I had trouble concentrating on more than short conversations. In October I travelled to Connecticut to be in the wedding of a friend. This was a major accomplishment for me. It required me to focus and engage for an entire weekend. It was a turning point in my healing.
6. The holidays were exquisitely painful. We respectfully turned down invitations. We did mostly online shopping. We didn’t participate in any of our usual traditions. We didn’t even get a real tree. I didn’t really decorate much and we avoided painful situations (like Children’s Mass at church). We tried to make new traditions. I will always be grateful to my sister, who brought her family to us and stayed overnight with us on Christmas Eve and Day. Being with my niece and nephew were a balm to my heart.
I hope that hearing about our experience of grief may help other families who are in the process of grief. People used to say to me, “Be kind to yourself.” I didn’t know what they meant but I understand it now. If you are grieving, don’t feel bad if you can’t do everything you used to do. Don’t feel bad if you have to eat out often. Don’t feel bad if you can’t entertain your friends like you used to. Don’t feel bad if you have to turn down invitations (especially to things like children’s birthday parties, baptisms, baby showers). Don’t feel bad if you forget things or singlehandedly keep the Post-It Corporation solvent. It gets better—I promise—but it takes time. Unfortunately, there is no way to rush this process.
Please feel free to comment and share your experience of grief, if you are able. It helps all of us to know that we are not alone.
Everything happens for a reason, right?? Seriously- who made up this phrase anyway? It had to be someone that never experienced a life changing event personally. If he or she had, they would understand how ridiculous it sounds. What could possibly be the purpose of having children die? What purpose does a devastating storm wreaking destruction have? Why did that person cross the center line and why did another decide they could no longer live in this world? There are so many questions, but not enough answers. Sometimes I think it’s harder to move on when you don’t understand “WHY” it happened.
That’s probably why this question has been in my thoughts often since McKinley died. This wasn’t the first tragic event I’ve lived through and I’m sure it won’t be my last, but it is the one event that has stopped me in my tracks and really made me look at life. I’ve read different books and I’ve listened to different explanations and I’ve come to my own conclusion on why bad things happen. I guess it all goes back to the fact that Heaven is something we strive for, not that we are given. If we never experienced any difficulties or heartache in this world then why would Heaven sound so wonderful? If we never thought we’d get to see our loved ones how hard would that be?
What if we have a “life plan” and we were put on this earth for a reason? What if our actions had a direct effect on others in either a positive or negative way? What if this lifetime is supposed to teach us how to be a better person and live a more fulfilling life? Every human being is so different and we each have our own unique characteristics. We have so much to learn from each other. One phase of life I’m around often is a nursing home environment. I look at some of these patients and I wonder how God can let them be afflicted with these awful physical and mental problems. Maybe their purpose in life is to teach us to appreciate what we have while we are able and also to teach compassion to those around them. When I see a staff member go up to a patient with compassion and friendliness it moves me and makes me want to do the same thing.
I’ve also been around parents that have “wowed” me. The ones that seem to have patience that never ends (and I don’t know how that is possible). A co-worker recently shared a story with me about a woman having a difficult time with multiple children and her son stepping in to help. I think we need to all remember that sometimes we have a bad day and might need a little bit of help. I bet that parents that have had difficult children are more willing to help others because they know how hard it can sometimes be.
What about issues that we may not feel comfortable with or know little about? Someone that has been faced with a cancer diagnosis and is now in remission has a lot to be thankful for. Many of these people will be the ones behind the Relays For Life and other great events. What about the person that is given a terminal diagnosis? Do we run away from them in fear because we don’t know how to handle it or are we there for them? A couple with fertility issues will make the best parents because they know how precious life is. Someone that has a loved one die in a drunken driving accident is going to try to increase awareness. Have you saw ads on this? I have, and it brings tears to my eyes each and every time.
You see, what happens in our life forms who we are. I guess we have choices to make. We can either love and risk the chance of getting hurt or we can try and block others from our life. As I’m writing this I still have lots of problems thinking that anything good can possibly come out of McKinley’s death. Even a year later I am still heartbroken and lost. I’m not happy about it, but this experience has taught me a lot. I’m stronger than I thought I could be. I’m proud of the fact that my family and Mandy’s family has put our grief to a useful purpose. I’m glad that it has increased my faith instead of turning me away. I’ve lived through something awful, but I’m going to use the pain to try and do something positive. This is my life plan and what I feel my purpose is. I want to continue to live while incorporating our daughter’s short yet meaningful life into it. It is what I’ve learned and it is who I now am.
Thank you to all our servicemen and women, past and present, that have protected and given us the liberties we have. It takes a very brave and dedicated person to do this. Thank you also to the families of these special people.