Member Stories
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...
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Dear Mama,
There will never be the right words to convey the depth of my sorrow for the loss of your sweet baby. No one should have to experience the loss of a child, regardless of age or gestation. Please know that while you may feel alone, you are not. You may not know it, but there is a supportive community of other mothers of loss who will be there to guide you. They will reassure you of two things: it’s not your fault and some day you will be able to carry this loss more easily. It's not your fault. There is still so much we do not know about the human body, which is maddening. Please know that you did everything right with the information you had available at the time. You were a fighter and if your love and strength were the sole factors in a different outcome, then it would have happened. Your sweet baby knows how much you love them and wanted them. You did everything you could, even if it may have meant putting yourself at risk. Please find peace in the time you carried your sweet baby and the way you got to say good-bye. Embrace the memories of the first ultrasound and the first kicks. Know that they felt your love when you’d talk, or sing, or read to them. Take heart and be strong. I know how easy it is to fall into darkness and despair, but it’s important to look towards the light, even when it feels like you’re drowning. Reach out to your family and friends. Understand that they may not know the right thing to say or do. Forgive them for this. Tell them what you need. Let them comfort you. You deserve their comfort. Please don’t punish yourself for this. Your child would not want you to live your life in despair. Your child matters and will always matter. Say their name. Look at their picture. Hold their blanket and think of them. Keep their memory alive however you feel necessary: plant a garden, make donations in their name, give them a stocking at Christmas, or include them in your family however feels right to you. This will always hurt, and you’ll always miss them and wonder “what if?” but please don’t let this define you. You are more than the sum of your losses and struggles in life. Honor your child by living how you think they would want you to live. Care for yourself as you would want to care for them. With love, Danielle Luciano’s Mom
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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 |
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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. AuthorEach 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. Archives
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