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...
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
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
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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.
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In person support suspended March 14, 2020. Zoom Support Group
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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)