Wednesday, August 2, 2017

The Power of Sharing (and Social Media)

+JMJ+

It's no secret that the internet is a powerful force to be reckoned with - one that has the potential to do immense good or seemingly irreparable damage. It can build us up or break us down, depending on how we use the tools at our fingertips, who or what we expose ourselves to (intentionally or inadvertently), and of course, where we are at with our emotional and/or spiritual health. All of this is just a fancy way of saying that the internet can be a horrific nightmare or an abundant blessing - which is something my husband and I discussed at length during our engagement as we navigated and set boundaries for the role social media would play in our relationship as a married couple.

When, at 18 weeks pregnant, we were told that our daughter has severe ventriculomegaly AKA congenital hydrocephalus we had a choice: we could suffer in silence and loneliness or we could expose and share our vulnerability with others in hopes of being supported.

Thank Goodness we had the strength and confidence to do the latter, because thus far it has been nothing but a blessing.

Honestly, it's difficult to chronicle the intricate ways in which the Lord has lifted us up throughout the past 3 months - especially because I have enough material to write a small book. But, one way I can tangibly explain it is through the people that sharing our story has put us in touch with.

Let me first backup and clarify that sharing our journey with others was not something that happened overnight. My husband, Michael, and I needed time to process and grieve the diagnosis in our own ways and then as a couple. We needed much of that first month to deal with our own emotions and our relationships with God individually and together. We needed time to process and run through all the worst case scenarios so that we could begin finding peace with where we were at and we told very few people outside our circle of closest family and friends.

During that first month I eventually reached out to a college friend that is a powerful prayer warrior and intercessor to have on our side. She then informed me that one of her good friends (who I remember meeting once at a Matt Maher concert!) had recently given birth to a baby with hydrocephalus and asked if I wanted to be put in touch. Of course I did! While I had quickly joined a ventriculomegaly support group online, this was the first real person I had ever met that could more fully relate to our experience; it helped, too, that she is also Catholic and I could discuss things like prayers and hospital baptisms with her. Despite the fact that her daughter's situation was very different from ours, it was healing and gave us hope to find someone who had lived through even a glimpse of what we were dealing with.

Then, after having our time to process and gradually tell family my husband agreed that it was an acceptable time to share about everything on the blog. He was more of the "it can't hurt at this point" mentality, but I had a strong sense that it could be a blessing. I especially thought this because I help run a very large, local Catholic moms group - and nearly all of the women that regularly attend the play dates knew when our big anatomy scan was and had been eagerly awaiting a gender reveal; having the blog was a great way to share the news with everyone in the moms group and begin receiving a lot of prayer support while ensuring that I had the personal space I needed when I saw everyone face-to-face. Seriously a huge blessing!!!

Through sharing what I wrote on the blog I had a couple of local moms recommend the Be Not Afraid ministry to me. This Catholic non-profit works with any parents given a prenatal diagnosis for free - providing prayer support as well as practical help navigating the complicated and somewhat scary world of NICUs, high risk birth plans, and more. They also provide peer support and pair you with other parents who have gone through similar diagnoses or surgeries in case you'd like to talk to people who have been in your shoes. As their parent care coordinator once told me, "you can text me when you have a hard day - and the hard days do come - and I will drop everything and talk to you if you want...because I understand and have been there. We all have friends and family that want to be there for us, but at the end of the day we are part of a club that no one else wants to be in or can fully understand."

I don't think I need to break down how wonderful it is to have an organization like Be Not Afraid to lean on. Had I not shared everything with the moms group I probably never would have found them.

In short, ever since I published about the diagnosis on the blog the support and new connections have been overflowing. A mom from the online ventriculomegaly group I joined reached out when I posted something in the forum; from her I learned some valuable information about cord blood banking and some experimental procedures taking place at Duke University Hospital - the exact place I will be delivering and seeing our pediatric neurosurgeon. There are parents that fly their kids from all across the country to participate in these cord blood infusions and here we are already planning to be there and with easy access should we want to go that route; God seriously knew what He was doing when He led us here not too long ago!

Next, we found out I would definitely need a C-section and sharing that information led to a friend adding me to a Catholic C-section moms group. I have received a lot of peace being able to read about others' experiences and when I posted a question that mentioned our daughter's diagnosis a mom that has two children with hydrocephalus reached out. She then connected me to a large hydrocephalus group online and gave me additional information about the procedures at Duke mentioned above. And so on and so forth.

The connections with prayerful people that have walked a similar path, the valuable information they have provided, and the peer support and solidarity that has sprung from all of this only continues to grow. When things like this happen the world seems much smaller and I cannot help but marvel at how amazing the internet is. In three months' time my husband and I went from knowing literally no one that has experienced our daughter's diagnosis to having a handful of real people other than our doctors to ask questions and feel better prepared.

Not to mention, sharing our story has allowed hundreds (seriously hundreds - perhaps even thousands?) of people beyond the scope of our immediate family and friends to lift us up in prayer - which I know is helping in ways I can see and feel and in ways we will never fully be aware of.

Prayer, human connections, and community support are wonderful blessings at all times, but especially in times of suffering or trials. The fact that the internet has aided in bringing us all of these things shows me how very good social media can sometimes be.

At the root of this reflection, though, I can see that this force for Good doesn't necessarily come from utilizing the internet or social media tools - but stems entirely from speaking out, not only about the joy we have because of the gift of our daughter's life but also about her prenatal diagnosis and what that means practically for our family right now.



My husband and I could have chosen to go through this pregnancy without telling a soul about our hopes, prayers, or struggles...and how depressing and isolating that would have been! Undoubtedly some things are rightly or prudently kept private, but in our case speaking up instead of suffering in silence has made all the difference. By opening ourselves up and allowing others to support us - through prayers, watching the kids during several medical appointments, or meals when the time comes - we have already been blessed beyond measure.

It doesn't always come naturally to share our deepest worries, fears, or stressors with others - but if there is one thing I have been learning throughout the past 3 months it's that sometimes the healthiest thing to do is to be vulnerable and allow ourselves to be helped by others. Today's society often makes us think it's inappropriate to share anything about our lives that doesn't appear to be perfect which I think is an unfortunate mistake. Everyone has their struggles and we could all do well to stop being afraid of admitting it. Sharing our story has provided us support, healing, important resources, prayers, and ever-increasing trust that no matter what the Lord will take care of us and our little girl.

So, if there is something you're struggling with I hope you will consider sharing your heart with someone you can trust - whether it's a family member, friend, co-worker, priest, etc. There is no need to shout from the social media rooftops unless you seriously think and pray about it being beneficial to your situation, but telling just one supportive person can make all the difference between isolation or receiving abundant help.

"We don't heal in isolation, but in community."
-S. Kelley Harrell

No comments:

Post a Comment