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How the Facebook Page for My Daughter Has Helped Me as a Mom and Advocate

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Do you ever wonder why parents have a Facebook page or an Instagram account for their medically fragile warriors? Here are a few reasons I have a page for my daughter who battled and then passed away from a congenital heart defect.

It is important to feel like I’m not alone in the fight. It is helpful to know that others are with me, whether through prayer, donating resources, etc. When I log on to my social media and see that hundreds, maybe even thousands of people are standing by and thinking of our family, it makes a huge difference. It is encouraging to know others care. It can give me strength to know we are not isolated in the journey.

It is a great way to spread information quickly and easily. It may seem like a parent who is in the hospital with their child may have tons of time to make phone calls to update family and friends. But the reality is, it can be very busy and chaotic while being inpatient and even more hectic when home with a very sick little one. It’s helpful to be able to update everyone on important information or changes in the child’s health, all at once.

To spread awareness. I think this goes without saying, but for those of us with medically fragile children, it is imperative to advocate for more funding and awareness. It can hurt when it doesn’t feel like other people place a high importance on us. It may be easy to ignore a post with numbers and statistics, but when others see a picture and update on our beautiful children, it’s not as easy to just ignore what our child is going through. We hope others may feel a pull to help us spread the awareness and educate others on whatever is causing our child to be so sick.

It is helpful to organize fundraising, meals and other tangible support. Hospital bills, medication, equipment, etc. can significantly affect a family financially. Close friends and family can organize a fundraiser or set up a meal train and easily use social media to help rally the family’s support system.

As someone who has lost a child, I have a few additional reasons why I continue to post on my child’s page.

I can’t stand the thought that the world may forget about my precious child. After the first few weeks following a loss, the strong show of support can dwindle. It hurts to feel like others might be moving on. I want others to remember what a beautiful, special gift my child is. I want to be able to share a particular special memory and know that others get to share it with us as well.

I want to have a place others can celebrate my child’s life, too. Social media makes it very convenient for others to post memories, pictures, etc. about my child. It feels good to see others remembering and also celebrating my child.

I use it as a way to process my grief. I know for me personally, I have gone through more feelings than I even knew was possible since losing my daughter. It’s important to process these feelings. I have sought therapy, talked to friends, joined grief groups; but I also have found posting on my daughter’s page can be therapeutic. I don’t always have the emotional strength to keep up on a official blog, but writing short little thoughts on social media has helped me cope and come to grips with some feelings I was not aware I had.

Parents, what are some reasons you have a page for your warrior or in memory of your angel? Please share in the comments section.

For anyone who wants to know more about our journey, you can view my daughter’s Facebook page, Jaylee’s Journey of Hope.

Thinkstock image by opolja

Originally published: February 23, 2017
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