Tuesday, August 22, 2017

Tidbits on Community: A Gift that Keeps On Giving

+JMJ+

You know you're pregnant with a third child when...


...you receive a thoughtful gift in the mail at 32 weeks(!) and realize they are the only gender-appropriate baby clothes you own! I mean, how did such an obvious thing sneak up on us?? What a different experience from having a first baby.... ;) But seriously, aren't these baby girl onesies lovely?! The friend that sent these had no way of knowing, but they actually match our baby girl's nursery decor quite nicely. :)

And on a separate note, I just wanted to say how beautiful are the many ways we are connected through sisterhood, motherhood, and the body of Christ. 

I have worked and prayed hard to build community and to meet the friends the Lord desires me to have in the 5 states we have lived in these past (almost) 5 years. We have met several friends and acquaintances - some have stayed in our lives, many have gone, and some have pleasantly surprised us with their efforts to keep in touch. On occasion, friendships have only deepened with time and distance apart.

Right now as we navigate this high-risk pregnancy (and unknown future for our child) I am SO thankful for the many caring, prayerful individuals we have been blessed to know all around the country. Your prayers, your notes, and even generous gifts are lifting us up in ways you cannot know.

And please keep praying for us, y'all! The past nearly week and a half have left me feeling anxious to get back to our next ultrasound later this week because last time the doctors discovered something new and surprising (even for our baby girl's brain condition) and puzzling; this week should help us get better clarity about whether or not it's something that warrants attention or treatment or (perhaps) may somehow resolve itself.

AMDG.

"We are all one family in the world. Building a community that empowers everyone to attain their full potential through each of us respecting each other's dignity, rights, and responsibilities makes the world a better place to live."
-Pope Saint John Paul II

Wednesday, August 9, 2017

An Odyssey of Sorts

+JMJ+

It's been a pretty epic week around these parts! Not only did our oldest child turn 4 years old (more on that later!), but we hosted my mom, my sister and brother-in-law, and their kids for 3 days. Plus, our friends had a baptism and after-party for their littlest which means we had lots of celebrating to do in just a few short days. Then, as our busy, happy, full house weekend came to a close and we said our goodbyes to my family we rolled right into the next big excitement of the week when we got our new van!!!

Honestly, I had been looking forward to this event for a long time (and not just because we purchased the van about 5 weeks ago and had to wait for it to arrive locally). I'm not one of those women that begrudgingly avoids the mom-van as long as possible; instead, I think part of me has been eagerly anticipating an eventual van purchase since my earliest days of motherhood! And I've definitely been looking forward to it ever since Peter (our second child) was born because those were the days when my compact car started feeling more than a bit crowded on road trips....

So, shortly after we settled and bought our house my husband and I agreed that - regardless of having a third child yet or not - 2017 would be: "the year of the van." Then, of course, we were blessed with our daughter which solidified that decision and even (baby)bumped up our timeline a bit.

Seriously elated to cruise my 3 kiddos around town in our glorious, new swagger wagon :D

On the surface this photo makes me look like any other suburban mom of multiple children - super excited for the convenience of automatic sliding doors, a trunk that can actually fit more than one large piece of baby gear and luggage, and not having to hunch over and practically crawl inside the vehicle to buckle my children safely into their car seats.... I assure you that I am THRILLED about all of those things (no shame!), but this photo my husband captured yesterday represents so much more.

You see, despite our plans to purchase a van in 2017 there was a brief period of time when my husband and I questioned that decision. We knew that we wanted to have a van, but back when we first began test driving and seriously making plans to purchase one our world was temporarily turned upside down when we discovered our daughter's prenatal diagnosis.

Long story short, we had to evaluate what made the most sense for our family financially and practically speaking in light of so many possible unknowns about our daughter's situation. I will never forget the moment when my husband, Michael, matter-of-factly pointed out what had become painfully obvious to us in those earliest days of researching and processing our daughter's prenatal diagnosis - that perhaps it would make more sense to lease a van instead of buying...because there was suddenly a possibility that our daughter might not be with us long.

Honestly, I cannot explain what it is like to a) be informed of how likely it is for your baby to be stillborn or die shortly after birth or b) have to make family decisions with that information in mind...so I will just let you imagine. If you think it's absolutely heartbreaking, your imagination is probably on the right track.

Tomorrow marks 12 weeks since we got rushed to Duke perinatal for an emergency high-risk ultrasound and it sounds too simple and somewhat cheesy, but we have lived a lot of life in these 12 weeks. 

Thankfully, we've been able to monitor our baby's progress and we (along with all our medical staff) have a better (and ever-increasing) grasp on our daughter's specific situation. In my mind, the worst possible outcome would be stillbirth...but at this point I'm fairly confident that won't happen to us. After all, her condition is being monitored and still appears isolated which, despite the extreme severity of swelling and pressure on her brain, gives us every reason to believe she will have a healthy (C-section) birth without additional complications. Yes, she will need surgery within 24 hours, but our incredibly knowledgeable pediatric neurosurgeon will do everything in his power to ensure she is delivered at the right gestational age to give her the best possible outcome; in our meeting he was extremely confident that she will be born in need of an immediate shunt but should be healthy otherwise. It's everything after her birth that remains uncertain, but at least we feel more and more confident about what to expect in her first 48 hours or so.

So, amidst all of this Michael and I did not hesitate to purchase - not lease - our van. It would be easy to live in fear, but we are not afraid. We have been covered in prayer these past 3 months and I trust that y'all will continue praying in the months to come. The faith that we have in the Lord to take care of us (no matter what happens) combined with the confidence we have in our medical care and facilities leaves us feeling like we are in the best possible place for our daughter (and us).

We are travelling an uncommon journey, but at least now we'll be riding in serious comfort and style. ;)

"Even his griefs are a joy long after to one that remembers all that he wrought and endured."
-Homer, The Odyssey

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