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8 Ways to Help Cope With Infant Loss

8 Ways to Help Cope With Infant Loss

Hi, all! So, October is Infant Loss Awareness Month. And, in honor of that I asked one of my favorite college roommates, Maddie Beeton, for an interview with The Baby Cubby. Maddie believes that it is important to share her story, and for all mothers of Angel Baby's to share their stories, so that together everyone can find healing and help. Maddie was one of my favorite roommates for a few reasons:

1. She is always happy and positive! I love that!

2. I definitely had social anxiety as a co-ed. Maddie was always welcoming and inclusive though, which made life a little easier for me!

3. Maddie is pretty much amazing. She has gone through a TON and I respect her so much for it. Seriously guys.

Anyway, let me tell you a little bit about Maddie and her experience to preface this. Maddie gave birth to her son, Jon Gabriel, in May of 2013. He came 10 weeks early and weighed 3lbs! He was quickly flown to Primary Children's Hospital where he was tested for HLHS, a heart condition that they had been warned Jon Gabriel may have. Jon Gabriel did not end up having HLHS, however he did have quite a few other complications. He had a different heart problem that would require the same surgeries as HLHS would, he had a hole in his lung, a swollen head, and was in need of stomach surgery. The surgeons told Maddie and her then-husband that there was basically nothing they could do to help Jon Gabriel. So, they spent time with Jon Gabriel. They loved him, they snuggled him, and they did everything they could to make him comfortable and help him feel their love before they let him go. Jon Gabriel stayed here on earth for 5 days, then Maddie and her husband had to let him go. Maddie has done a lot to help keep Jon Gabriel alive, though. Through her blog, With All Our Hearts, she has kept Jon Gabriel here in many ways. She has also helped many other women get through similar experiences. Jon Gabriel has done so much good in the world because of Maddie.

Maddie and her son, Jon Gabriel in those few days. He was perfect!

Maddie was kind enough to answer some questions I had for her about the grieving process and losing Jon Gabriel. We hope that this helps any mothers out there remembering their sons and daughters this month, and always:

1. What was one thing that helped you cope with the loss of Jon Gabriel the most? 

If there is anything I’ve learned from losing my son, it is that every loss of life is heart wrenching in its own way. Whether it's in the early stages of pregnancy or much further down the line, losing a baby is not just about grieving the time you had with them, but the time you did not. Infant loss is about the loss of potential, all of the nights you won't get to spend rocking them to sleep or catering to their every need. Bearing a child inside of you for any amount of time, fills you with a full and complete love only a mother can have. When that tiny baby is suddenly taken from you, it feels so abnormal, you know? Suddenly you have all this love in your heart and nowhere for it to goI started blogging as a way to channel that love. I found it hard to adequately express how I felt about him in the 5 short days he was here, but telling his story and allowing him to live on through the life I live, is a way for me to feel connected to him still. The mother and child bond doesn't go away just because the babies are no longer here. Writing out my feelings and sharing his story helps me feel like his mom still.

2. You found out early about Jon Gabriel's condition. What would you recommend to mother's who have just found out similar information do next?

The doctor will tell you not to google anything. You're going to anyway. And that's okay. Going to the internet for answer is therapeutic and can help feel like you're helping the situation in a way.  However,  just know that it might not all be accurate. Obviously, you're going to be as stressed and worried as you've ever been, it's what mothers are wired for when they find out their children's wellbeing is outside of their control. Try not to let it consume you day in and day out. Tell your experience to as many as you feel comfortable with, and don't be afraid to ask for what you need. If you need to be alone, ask to be alone. However, fight the urge to deal with all of it on your own. Let people help you. Let people listen and feel sad and angry with you. Things like this will help until more answers become available.

3. What are some of the support groups you found to be the most helpful? 

One thing I've learned since losing my baby is that grief is not something that needs to be fixed. It’s something that needs to be bourne. Together. I attended a Women's retreat recently for Mother's who have experienced pregnancy and infant loss. We spent a weekend at a cabin in the mountains exchanging stories, going on walks, doing yoga and meditation, and all sorts of activities geared toward healing. The most healing part was being with mom's who had experienced the same heartache.

Jon Gabriel, after his passing.
4. Did the pain ever stop (as in hurting you all day long every day)? 
Definitely. Eventually the days become less painful and suddenly you realized how far you've come. But the hole in your heart, the one that feels like it's the exact size and shape of the baby you lost, it never really goes away. And you don't want it to. It's the mark they've left, and it means you still have a piece of them with you.
5. Does the anniversary of his death remain hard for you, or has it gotten any easier at all? 
The anniversary's are the most painful, but in a good way. The pain makes everything more real. One of the hardest things about losing an infant is feeling like they will be forgotten. The anniversary's are days for your family and friends to remember your baby with you. And giving yourself permission to feel the loss and wonder what could have been, allowing yourself to hurt over it, reminds you how much you love them. It reminds you you're a mom.
6. What are a few things you did/did not like hearing from other people after losing Jon Gabriel? 
Things to avoid:     
There is never a context in which “at least” is helpful. "At least he didn't suffer." "At least you were blessed to have him at all." "At least he’s with God." "At least he died before you could get too attached." "At least you will have more children.” The baby she carried is no longer here, and there’s nothing anyone can do to change that. But “at least” will only leave a mother feeling like she shouldn’t be in so much pain in the first place. Avoid "at least" at all costs.
 
  - Not saying anything at all. It is always better to say something. One of my favorite quotes If you know someone who has lost a child and you’re afraid to mention them because you don’t want to make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember they lived, and that is a great, great gift.” Acknowledging that you remember the baby’s life is the greatest gift you can give a mother.
Do say:   
- “I heard/read your story about your son and I don’t even know what to say, but i’m so, so sorry. Can I help?”     
- “I think about you and him a lot. I can’t imagine how painful it is. How are you feeling?”     
- “How much did he weigh? What do you remember about him?”     
- “What makes you feel closer to him?"  
7. Is there anything you do to incorporate Jon Gabriel into your daily life to remember him? 
That’s why death can feel so empty, there’s really not a lot you can do. I have his picture on my night stand. Occasionally I’ll play songs that remind me of him. I reach out when I hear of other mom’s who have to go through the same thing. Anything to bring purpose and meaning to it, is helpful. 

The photo Maddie keeps of Jon Gabriel by her bed.
8. What are the things that help you focus on the future? 
Using my experience to help and connect with others around me. Showing up when other people experience a loss of their own. These things make me find purpose in all of it. I think that’s all we can do really, is try and find purpose through the heartache
Maddie recently wrote a blog post titled, "If I Had to Choose." She talks about how if she had to do it all over again, she would. I think that speaks volumes about the kind of woman and mother Maddie is. She loves Jon Gabriel the best she can every day, and I think that is amazing. All of you mom's out there who have had similar experiences are amazing. I hope that Maddie's answers to these questions will help you in some way. I hope that if you are in pain, you will reach out to those, like Maddie, and let them help you heal. Most of all, I hope you know how great of a parent you are.

Thank you Maddie for sharing your experience with us, we all feel for you.  Losing a child is a heart wrenching experience and if you have anything that has helped you or a loved one learn how to cope with infant loss we'd love to hear about it in a comment below or in an email. we'd love to hear about it in a comment below or in an email.

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Comments

Holly Hicks-Guski - November 26, 2020

Thank you so so much for sharing your beautiful story about Jon Gabriel and also for answering the questions that to many are so hard to answer. I truly believe that you couldn’t have been more right on every single answer to each question you were asked sweetie. After losing our beautiful daughter “Elleann Louise” at 39 weeks pregnant. Because she so sadly knotted her umbilical cord with 3 very tight knots and was born sleeping on April 15th. The pain of being ripped away from parenting your child that you just carried inside of you for 9 months and had so many dreams and visions of things you were going to do together is beyond difficult to put into words. But you did it all so well. You truly never stop grieving. Because like you said, if you did. You feel like your child will be forgotten. We have 4 boys here on earth. And we talk about Elleann and keep her spirit alive everyday. We decorate her a special Christmas tree, and we go to her gravesite often and decorate it with anything our boys pick out. And on her birthday we all get a pink balloon each year and we write our birthday wish to her on the balloon and the boys will tie a little plastic ring or bracelet or hair pretty or a sucker to the end of their balloon. And we all stand in a circle around her beautiful gravesite and we sing “Happy Birthday.” And then on the count of 3 we let her balloons all go together to reach her in heaven. We also light a candle and leave it burn for her on her birthday and every holiday. And also fill our yard with candles for all of the angel babies of parents that we have met. And one for all of the angel babies that have been taken to soon. For the wave of light on October 15th each year. I truly can’t thank you enough for being so loving and kind and for posting this beautiful interview. We will be adding another candle for Jon Gabriel. And we want you to know that he will always be in our hearts as well. From one Angel Mom to another. Thank you from the bottom of my heart for sharing your story and your feelings. It truly truly does help to know that you’re not alone and your feelings that you have are all normal and it’s OK to grieve and be mad and sad and want to scream at the top of your lungs. And most importantly “That its ok to talk about your beautiful baby! They are and will forever be yours. And it’s ok to share them with the world.” I am a mother of 5 children. Not just the 4 beautiful boys you see me with everyday. I am an Angel Mom!
Xoxo-Holly & Family

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