From the depths of sorrow, to finding peace and hope, our members have so much they want to share about this unexpected journey we are on...
Losing my son and my identity
In July 2018, our son James was born. After being in the NICU with him for 16 hours a day for a week, we found out he was born with a severe brain injury.
With that he was moved to a children’s hospital a few days later for a g-tube surgery and more testing. We eventually found out that James may never walk, talk or be able to fully eat on his own. The doctors didn’t know for sure what his outlook would be. While they tried to give us an idea of what his and our future would look like, they never talked about his longevity.
Having a special needs child changes who you are. Your life revolves around their specialized doctor appointments, their therapy, their equipment. Your other children sacrifice too. They get taken on appointments, they don’t get as much attention and they’re expected to help out more. They grow up faster than they should. Your special needs child becomes who you and your family are. It’s your identity.
In October 2018 James died of SIDS at 12 weeks old and it completely devastated me, my husband and our daughter. My imperfectly perfect family; my dream of what our family would look like was crushed to pieces. I was lost, felt alone even though we have amazing family and friends and just didn’t feel like myself anymore. I didn’t recognize myself.
One of the hardest decisions we had to make after James died was, do we adopt again or not? I wanted to. I was willing to go through more heartbreak, but my husband wasn’t. It took months and a lot of conversation, but we decided that this is our family now. Our daughter here, our son in heaven. This decision wrecked me almost as much as losing my son. I continued to feel like I was losing my identity.
I never thought I would suffer from depression, let alone, anxiety, and PTSD. I was in denial about my mental health. I finally had to accept it, allow myself to feel my emotions, and humble myself enough to ask for help. There was no way I could get out of the darkness alone. It took time, patience through the setbacks and a lot of grace. It was worth it.
I feel more aligned with my purpose now than I ever thought possible. I did find myself again; my new self. You might think you will never feel like yourself again. You're right, you won’t feel like your old self again, but you can learn to embrace your new self. You can love yourself again, feel healthy again, and find out who you really are. You are here for a reason. You are worth it.
Michelle, James’ mom
It’s the holiday season and we’re supposed to be thankful. Society tells us that we’re supposed to gather together with friends and family and tell each other how thankful we are and, in general, be celebratory. After all, we’ve made it to another holiday season, right? Unfortunately, that’s not the case for all of us. Sure, we’ve made it to another holiday season, but is that worth celebrating? As bereaved parents, the holidays can be anything but celebratory.
Our family’s version of celebration is how we incorporate our daughter Lucy into the holidays. Lucy’s funeral was the day before Thanksgiving three years ago. That makes the holiday season that much more difficult, and for us, we do what we can to make sure Lucy is part of our holiday traditions. One tradition we have is on the day after Thanksgiving, we pick out a wreath and place it at her grave. We also have a stocking that is hung next to ours. And in the years before she was born, we always said we’d get a real tree when we have kids. So, every year, even that first year, we’ve picked out a tree and decorated it. Because our version of celebrating involves her.
To us, it’s important to celebrate and incorporate Lucy into our lives, not just during the holidays, but always. Creating new traditions is important. For me, it helps me reconnect with her in my own ways. And when others ask what we did over the holiday, I tell them with pride just as they would talk about their kids. She wasn’t just part of our lives; she IS part of our lives. Forever.
Your children are part of your lives as well, and I hope you’re able to find traditions that celebrate them, not just during the holidays, but every day.
The two best guardian angels
I still can't believe we just passed 4 years since we lost Tatum and we are quickly approaching 2 years since we lost Saylor. July 29th 2016 started as such a happy day as we were going in for our 10 week check up with our doctor. My husband had gone to work as it was just to measure and listen to the heartbeat that day but it quickly turned into one of the worst days of my life. I remember feeling like this is a dream when my OB said she couldn't find the heartbeat and I needed to go to the hospital for an ultrasound. There was no way I could drive myself so I called my husband and he picked me up. We had the most quiet ride we've ever had, Neither of us said anything, he just drove with his hand on my belly. We got inside and had our scan that confirmed Tatum did not have a heartbeat and we needed to decide what we wanted to do. A week later we went in for our D&C and I never felt so empty in my entire life. How is this my life? God, why did you choose this path for me?
Life went on and we decided it was time to start trying again. We became pregnant with Saylor and it was such a joyful time. We were traveling home to visit family and shared with some of them that we were pregnant. We had just hit 14 weeks of pregnancy when we got back home and I woke up in so much pain and bleeding. I didn't want to believe what was happening but deep down I knew that there was nothing I could do and that Saylor would never be placed in my arms and I would never get to bring her home with us. Life seemed to go by in a haze, I felt so empty and lost.
No one can prepare you for the way you will feel when you lose a child and how much it will hurt. We celebrate their lives every year with a birthday cake and honor them during the holidays. I sure wish they were running around my living room instead of running around in heaven but I also know they are 2 of the best guardian angels I could have ever asked for.
Nicolle, mother of Tatum Clark Glen Ward and Saylor Hollis Bliss Ward
If you build it
After losing my twin sons, Tyler & Ethan, in April 2011, I felt incredibly alone. I still remember the day we left the hospital. The gray, bitter afternoon. Getting into our empty minivan. My nurse, Sara, wheeling me out the doors. I remember the final advice she gave me before we left. She told me that people will say stupid things and that I should forgive them. She reminded my husband and I that we will grieve differently but we need to keep communicating. And she also mentioned that if I was feeling up to it, in a few weeks there was a local March of Dimes walk that I may find some comfort in. I thanked her, hugged her, and drove away just hoping to forget everything that had happened. The last thing I wanted to do was to attend a community event.
But Sara’s words stuck with me. In the days that followed, I read about the March of Dimes and their mission to help end prematurity, the very thing that had taken our boys from us. I was inspired to do something. A little spark had started to form in my broken soul. Two weeks before the walk, I decided we were going. I told some friends and family, and surprisingly they wanted to walk with us. We had shirts made. We did a balloon release and watched two of the balloons separate from the rest and float playfully away. We smiled. We hugged. I didn’t feel alone in my grief. This little team coming together to honor our boys was incredibly healing. We decided this was going to be a tradition.
The following year, as we approached Tyler & Ethan’s first birthday, a good friend who owned a bar and grill offered to help us put on a fundraiser for our March of Dimes team. It had felt so good to get people together the prior year for the walk that I couldn’t imagine a better way to celebrate the boys’ birthday. My little spark turned into a flame, and “Walkin’ for the Walker Boys" Family Fun Night began!
That first year, we had a modest but awesome turnout for our pizza dinner and auction. Every year since then, it's grown. We have moved to a larger venue, added kids' activities and a DJ, and members of the Badger Band even make an appearance sometimes! This year we will host our 9th annual fundraiser. To date, we have raised over $25,000 for the March of Dimes in Tyler & Ethan's memory. It is so rewarding to do something positive while we keep their memory alive.
Perhaps the most healing part is the comfort I've found in the community that we've built. Our friends and family volunteer their time to set up, work in the kitchen and donate food. We have local businesses who donate to our silent auction and know us and our boys by name now. We have people show up at the event that we've never met before, but who leave as our friends. I get the honor every year to stand up and thank these people for coming, to share Tyler & Ethan's story and to know that I'm bringing people together to do something good.
Thinking back over the last 9 years, it's been a long journey of healing; one that will never be entirely complete. I'm forever grateful to Sara for helping ignite the spark that built this little community. The community that has carried me, given me an outlet for my grief and helped me find my hope again. I encourage all of you to find your community too... and I hope I've inspired some of you to go out and build one.
The dreaded back-to-school season
As another school year approaches, every parent has the safety of sending their children back to school during a pandemic on their mind and may be feeling a little more stress than usual. Many people do not realize that each and every new school year has stressors for the bereaved parent. All the back to school pictures are complicated by the pictures that aren’t there…the babies that never got to go back- to-school shopping or hold the little sign with their dream occupation and anticipated graduation date. This is further complicated for me in that the first day/week of school is usually my dead son’s birthday…September 3rd.
As I anticipate (and dread) this new school year, I hear the reported statistics about COVID-19 in children and going back to school and I want to let loose a scream of frustration. When you are the statistic, the statistics mean nothing. I have had two miscarriages and buried my two-and-a-half month old who spent his entire short life in the hospital. He was supposed to have less than a 25 percent chance of even spending time in the NICU. He was born with a 1 in 40,000 chromosomal abnormality....and would have lived except he had a mutation on his genetic mutation, which in the end, was not survivable. I, myself, have lupus, and possibly psoriatic arthritis. I have had to have my heart cardio-verted at age 41 due to A-Fib and I've recovered from Takotsubo syndrome and Rocky Mountain Spotted Fever. When you are the statistic over and over and over again...well.... don't quote statistics to me. I'm not willing to risk it.
As I decide how my six-year old rainbow should learn this year, I cannot help but have my decision swayed by the traumas I have endured. Many may judge me for this, but, as a bereaved parent, I have learned that I am living the best possible life I can after having it shattered and putting it back together again. This is my new existence and I am doing the best that I can each and every day. My decisions as a bereaved parent are not the same as the decisions made by the stranger I was prior to loss. That woman is gone and, sometimes, I miss her, too. In the meantime, my Sam would have been 9 years old this year and I should have a fourth grader. He would be the graduating class of 2029. He will never reach that milestone or have a first day of school, but I will always imagine him standing next to his sister for the photo.
Amy Falkner, Sam’s mom
A journey of hope and fear...
Life did feel perfect for a time being. Being pregnant without any fertility treatment and after a few months of trying, our baby’s due date 3 days before our wedding anniversary (a perfect anniversary gift), siblings close in age. That was the calm before the storm. Everything about me changed after losing my 2nd son, Samip, who was born sleeping on Jan 16, 2018. We lost him at 37 weeks of healthy pregnancy. After Samip died is when I truly understood life. My life was shattered. But my mind was in a fight; I do not know with whom. Probably with someone who was making my life choices for me. I didn’t like it. I wanted to make my own choices and I wanted to win. It sounds odd, but this one sided mental fight got me trying for another baby. I didn’t think whether I was ready, whether I had grieved enough for Samip. I would always remember and miss him. I knew a future pregnancy would be terrifying no matter how long I waited.
After trying for a few months, I found out I was pregnant in November 2018. I joined Rainbow Pregnancies of Madison Facebook group after a few weeks. Just knowing there are other women who had a baby after loss was reassuring.Those nine months were daunting. I had so many questions: what do I do differently this time, how do I make sure this baby will be born crying, was that a kick or a cramp, sleepless nights, fear and anxiety every moment, who do I talk to, will someone judge me for being paranoid? It was tough. A constant war between fear and hope. Having this support group was a safe place to share all my feelings. A lot of us hadn’t met in person or may never meet. But their words of comfort, encouragement, virtual hugs and presence was what kept me sane during my pregnancy after loss journey. Doctor appointments were the most terrifying. Fear of silence and hope for a heartbeat. I would share about everything that was stressing me. In this group, I would always feel heard. My fears were not ignored, they were validated, understood and comforted.
Pregnancy after loss is a journey of hope and fear. It will be lonely to navigate through this without people who you can truly relate to and who will understand. I am truly thankful for this group and these amazing women who marched alongside me on my journey. My rainbow boy, Sanup, is a year old now. If you find yourself going through pregnancy after the loss of your baby, please know that there is a network of people here to support you.
Srijana P. - Mom of Samip
Are you pregnant after loss?
Join our Rainbow Pregnancies of Madison private Facebook page or the monthly support group for mamas. Email Rebecca at email@example.com to learn more or see the August calendar for support group details.
August 2020 E-newsletter
Share your story!
We are taking submissions for articles to share in our monthly e-newsletter. We believe it is healing for parents to share their experiences and valuable for the both community to relate and professionals to gather a better understanding.
Each of these stories was featured in an e-newsletter and distributed to parents and professionals in our community. We hope that parents reading these stories will feel less alone and that the caregivers and professionals that we trust can learn from our experiences.
For Information & Support:
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In person support suspended March 14, 2020. Zoom Support Group
3rd Thursday of every month, 7:30pm
SSM Health St Mary's Hospital
Cafeteria Dining Room A/B
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Madison, WI 53715
Bereaved Parents of Madison, Inc
PO BOX 46511
Madison, WI 53744
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Bereaved Parents of Madison Inc is a 501(c)(3)