199 Pages of Care

Sometime over the past week, after our Molly-girl’s birthday had come and gone, I realized that for the first time, in 10 years, I forgot to post my letter to her on our BabyBenson2008 CarePage after sharing it here on my blog.

I felt sad about that, as we received so much support on our CarePage in 2008 while I carried Molly and after she died.

How could I forget what felt like such an important part of my annual tradition/tribute to our baby girl?

Especially for this milestone of ten years…

I used to double post in both places and then eventually I moved to primarily sharing on my blog. However, every year I would post there on Molly’s birthday and there was a handful of people who have followed our journey all these years, who would still comment every year.

Since we were in Mexico last week, on vacation as a family, I decided it wasn’t essential that I post right away, when I remembered about our CarePage for Molly. I’ve shared the link to my blog there enough times in recent years, that I felt people could find me here, if they really wanted to know how our family is doing.

At some point this weekend, I typed in carepages.com and was taken aback to see this message:

After 8+ years of helping people communicate with friends and family during times of illness or hospitalization, we have shut down. We’re proud of the many years of support that we provided, and we’re inspired by the strength of communities who rallied around those in need. We want to make the transition as smooth as possible for everyone who used Carepages. If you had an account with us, and you would like to preserve your posts as well as the responses from friends and family, please email support@support.carepages.com for additional assistance in retrieving your history. Farewell.

I was stunned.

Gone?

Just like that.

I will always be grateful to our college friend, who was (and still is) a social worker at the Mayo Clinic working with transplant patients, who first suggested to me that we start a page during our pregnancy in early 2008, after we found out that our baby had rare and severe congenital heart defects at about 15 weeks gestation.

We’ve encouraged so many friends and family members, since our experience with Molly, to start CarePages and Caring Bridge pages of their own, because of how helpful it was for us to have one.

I’ve also made a point, with each one I became aware of, to read and comment often, knowing how much it meant to me back then when I read messages of care and support from our loved ones, as well as strangers (including fellow “Heart Families”) who found their way there.

I did notice over time that most people were using Caring Bridge and not CarePages anymore, so I guess this news shouldn’t come as a total shock. And when I mentioned it to Bob, he didn’t seem as surprised, saying that he thought maybe we’d gotten an email about them shutting down six months ago or so.

At 43, I am amazed at the vivid memories I have of some things over the course of my life and then manage to possibly forget hearing news like that, which later seemed to floor me, believing it was the first I knew of it.

I really appreciated the option to email CarePages to “retrieve our history.”

Though I did double post about our journey with Molly there and on my blog, not everyone in our life followed both, for various reasons (including initially not everyone knew I had a blog). So though what I shared in both places was similar, the feedback we received wasn’t always the same and I got so much out of reading responses from both our CarePage and my blog.

I immediately sent an email requesting our that we be able “to preserve our posts, as well as responses from friends and family.”

This afternoon I received a reply with a 199 page PDF attached.

199 pages of care…

I downloaded it when the kids and I got home from Sean’s orthodontist appointment after school and while Abby was at her hip hop dance class I started scrolling through.

I’ve re-read what I shared about our journey with Molly many times over the past 10 years, but not as much as I did today in a while and not the specific comments we got on my posts from those who followed and supported us on our CarePage.

It was surreal, painful and affirming.

I lived in such a fog in 2008, moving through Molly’s diagnosis, prognosis, so many doctors appointments, getting our hopes up and preparing for the worst… So. Many. Times.

It was truly a roller coaster ride of emotions and going back there, reading my own words and those of so many who took time to let us know how much they cared and were pulling/praying for us, all these years later, is draining and moving.

I am a fast reader and in less than an hour was able to get through about 88 of the 199 pages of care, which took me partway through my description of Molly’s Memorial Service on May 4, 2008 at our parish church.

Bob teased me that I have a long night ahead of me, if I intend to read the other 111 this evening.

If you’ve experienced great loss and/or gone through an illness yourself or with a loved one, you likely can relate to how after time goes on, to be able to cope and not feel stuck in your grief, on some level you block out aspects of your memories, to protect yourself from the pain.

When I do allow myself to “go there,” it takes so much out of me and reminds me just how difficult that year in our life was, as well as how blessed we were with such immense love, care and support from so many.

For those who have been with us since 2008, especially any of you that may have followed our CarePage BabyBenson2008, and if you ever left us a comment/message/response on one of our posts, thank you so much.

We are grateful that you helped build these 199 Pages of Care that we’ll always have now, to remember our journey with Molly and everyone who walked with us.

Those pages, along with this blog, serve as part of Molly’s legacy, which helps us to know that her short and very special life was not in vain.

And I do encourage you, if you have loved ones going through difficult and uncertain times who start a blog, Facebook or Caring Bridge page, to share updates about an illness or after an accident/injuries, to take time to read their posts and show you are walking with them, through commenting/reminding them how much you care.

I promise you those words of support and encouragement mean more than you’ll ever know and will continue to lift them up and help them feel loved, even in the years to come, sometimes when they least expect it, and find themselves reliving aspects of their journey, as I did this week, 10 years after the birth and death of our Molly-girl.