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

Wednesday, July 26, 2017

Two Kinds of "Strong"

+JMJ+

For those of you with children, do your kids have a "lovey"? You know, that comfort object that must go everywhere your child goes for years on end making it impossible to keep clean?? If you have ever had a child that had a comfort object or if YOU were that child (totally raising my hand over here) then you KNOW how precious that item is...especially at bedtime.

This past Sunday we were getting the kids ready for bed when the unthinkable happened: our oldest son, Gabriel, could not find his beloved Babydoll (yes, a baby doll aptly named "Babydoll") anywhere. Gabriel is almost 4 years old and I kid you not, this had literally NEVER happened since we gave him that precious doll at 18 months old.

Gabriel, 18 mos old with his new doll that basically became a family member

Immediately my husband and I went into "keep the toddler calm" mode while simultaneously starting to dread the potential fallout of such a scenario. We calmly looked through the house, retracing every step since we had returned home from an evening Mass while racking our brains for what we were missing. Long story short, Gabriel definitely had Babydoll at church, he definitely had him as we left the church, and I distinctly remembered handing him the doll after buckling him into his car seat. Yet, the doll was nowhere to be found in the car OR the house and we did not remember seeing him carry it inside.

It was a puzzle for sure, but most importantly we had to figure out how to talk Gabriel through what was probably a terrifying prospect: going to bed without his comfort object.

Like all "wise" parents, we purchased a duplicate babydoll long ago, but we did this far too late in the game for it to make much of a difference. Gabriel refers to the dolls as his "old babydoll" and "new babydoll" and does not at all hold the other doll in any more regard than he does his other various stuffed toys. This means that whenever his beloved Babydoll "needs a bath" we have our work cut out for us as we attempt to temporarily substitute the back-up doll for the real deal.

Many toddlers in this scenario would be extremely upset - angry even. Our sweet Gabriel was undoubtedly upset, but he completely bypassed anger or frustration and went straight to on-the-verge-of-tears and shaky-voice sadness, completely breaking my heart in the process. I remember asking him if he felt sad, him nodding yes, and collapsing into my arms for a big hug.

Thankfully, the bedtime story that Gabriel picked out was Tomie dePaola's Strega Nona and the Twins, which gave me the bright idea to explain that the new babydoll is actually Babydoll's twin. I distracted Gabriel with some light-hearted imaginary play about them being twins, we read the story, dressed the "new" doll in a special outfit, and Gabriel went to sleep peacefully.

All in all, I think my husband and I handled the entire scenario pretty well - but you can imagine how much it did NOT feel like a coincidence that the first thing I read the next morning was this article, which discusses basically the same scenario from our previous night! Go ahead, click over. I'll give you a minute to get caught up....

After reading the article I still felt like Michael and I had done a pretty good job, but I realized that I hadn't said too much of anything to Gabriel about the emotions he surely felt beyond briefly acknowledging his sadness.

The article helped me realize that I really wanted Gabriel to understand how proud I was of him for how he handled the situation -- and that while we have talked a lot about physical strength, this was a prime opportunity to teach him about other kinds of strength.

So, the first thing I did when I entered Gabriel's room was to greet him, plop him down in my lap, and begin telling him how strong he is becoming. At this point he had his old Babydoll back in his arms (another story for another time), but I rehashed that he must have felt sad and missed Babydoll when he went to bed, etc. etc. Then, I asked him if he knew that there were 2 kinds of strength - and of course, he said no because I had never blatantly explained this to him before.

I went on to inform him that other than how strong our bodies are on the outside, there is another kind of strength - which is how strong we are on the inside. I threw out various scenarios about how someone that is strong on the inside is able to calm down when they are angry, is able to say sorry when they make mistakes, can forgive people when they apologize for their mistakes, or can learn to be calm even if they feel really sad. I told him that when he felt sad about not having Babydoll but was able to fall asleep at bedtime anyway he was being very strong and I was proud of him. Of course I reminded him that everyone gets angry or sad sometimes, but told him that learning how to be strong on the inside and knowing what to do when we feel angry or sad is really important - and that I was so proud of him for growing stronger on the inside (I know, I repeat myself with toddlers a LOT - but they don't get quite as sick of hearing things said over and over again in different ways as us adults do). ;)

All of this probably sounds super cheesy, but I'm sure to my 3.5 year old who listened attentively as I spoke those words while hugging him in my lap it was anything but.

Both of my sweet, strong boys (and -surprise!- Babydoll)

Honestly, this felt like one of my better moments as a parent but I'm not sharing this to feel good about myself. Rather, I think it's important for us parents to remember that we have immense power in either dismissing or rightfully addressing our children's emotions - and that they may not learn some things unless we explicitly spell it out for them. My son literally had no idea that there is a type of strength beyond lifting/moving/carrying heavy things until I told him.

I'm sure there are lots of parents that have already explained this concept of both outer and inner strength to their 3 year-olds, but even though we talk a good deal with our kids about emotions this was one topic that had not yet been blatantly discussed. I'm thankful that the article I read helped me recognize this and address it at a time that made sense to Gabriel, which I think is something we're all striving to do for our children. So, if you haven't heard about the train analogy that can change how you see your crying child, consider this a (hopefully) helpful reminder from me to you. It helped me have a beautiful conversation with my son, so here's hoping it speaks to someone else out there as well!

"God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear, though the earth should change,
though the mountains shake in the heart of the sea;
though its waters roar and foam,
though the mountains tremble with its tumult."
Psalm 46:1-3

Wednesday, July 19, 2017

10 More Weeks?!

+JMJ+

Ever since I shared about our daughter's hydrocephalus diagnosis I have received an immense amount of love and support, so I wanted to give ya'll the latest updates as you continue holding us in your thoughts and prayers:

You may recall that at our 18-week anatomy scan our baby's lateral ventricles in her brain were measuring about 15 and 16 mm (normal measurements in-utero never exceed 10mm). Then, at 22 weeks her vents had increased noticeably to about 21 and 23mm. Well, last week I had another high-risk ultrasound and learned that at 26 weeks the swelling in her lateral ventricles had progressed to 31.5 and 31.1mm.... 

It's plain to see that in just two months our baby girl's vents have doubled in size and are already more than three (3!) times the normal size...and baby girl isn't due until mid-October.

I am absolutely doing my best to stay positive and focus on all the good things we can celebrate about our growing baby's health, but if I am being honest I felt very subdued after discovering the latest measurements. After all, I have read a LOT of other parents' stories about measurements at various gestational ages through some online support forums for ventriculomegaly...and once I knew that our baby's vents were already 31mm at 26 weeks I began to feel more deeply just how massive our child's swelling is - because even amidst the other severe cases our baby girl's measurements this early on are some of the worst of the worst I have heard of.

But, we had our big appointment scheduled with the pediatric neurosurgeon yesterday afternoon, which gave me something good to look forward to!

I was incredibly anxious because my husband & I had been waiting for this appointment ever since our 18-week anatomy scan. This was THE appointment that could help give us better insight about what to expect when our baby is born (because there is nothing to do regarding the pregnancy beyond monitoring the swelling and waiting, but so many unknowns about once she is born) and I am happy to say the meeting was incredibly fruitful.

We walked away from yesterday's appointment with all our questions answered (truly - because I was prepared with a typed-up document and made sure we didn't forget to ask a single thing), a clear understanding of what needs to happen surrounding labor/delivery & our baby's first few days, and continued confidence that all the care we have been and will be receiving is absolutely top-notch.

After speaking at length with the pediatric neurosurgeon these are a few things we now know:

  • A C-section is necessary (our baby's head is already measuring 5-6 weeks ahead because of the swelling, so not only will her head be too big to deliver vaginally, but we cannot risk putting extra pressure on her head which would likely cause bleeding in her brain).
  • As soon as she is born, our baby girl will be taken to the Intensive Care Nursery (ICN: what Duke calls their NICU) to ensure she is stable, will have an MRI, and will be prepped for surgery (she will be given nutrition through an IV because her stomach needs to be empty for surgery).
  • Our baby girl will have the shunt surgery (to drain the excess fluid build-up and relieve the added pressure on her brain) within 24 hours after birth.
  • She needs the shunt surgery to remove the pressure on her brain ASAP, which means the C-section will be scheduled at 37 weeks (as soon as she is full-term).
  • Assuming that she is stable and surgery is successful, we are looking at a recovery stay in the ICN for about 2-7 days (which is much less than I had anticipated based on reading other people's stories!).

Our doctors have never been able to see evidence of a corpus callosum in our baby girl's brain, but the neurosurgeon explained that we won't really know about this until after the shunt has time to work - because the build-up of cerebral spinal fluid prevents them from seeing the full picture. Once the swelling goes down we will know more about the corpus callosum (whether it is thin, partially formed, or fully absent) from future MRIs. So right now we only need to be concerned with treating the hydrocephalus and we can tackle any potential other brain anomalies later when we cross that bridge.

Despite learning some hard truths about what our baby's care will necessarily look like in her first 24+ hours, my husband and I walked away from yesterday's appointment feeling much-relieved and at peace. We have a lot to prepare for in the next couple of months, but at least we have the knowledge we need to mentally, physically, and spiritually prepare ourselves. First and foremost I need to ready myself (and all my pregnancy nesting) to meet this baby girl in only TEN MORE WEEKS!

27 weeks

Thank you again to all of my wonderful readers that are keeping us in your prayers! 

+Our Lady of Guadalupe, pray for us.+
+St. Gianna, pray for us.+
+St. Gerard, pray for us.+

"Pray, hope, and don't worry. Worry is useless. God is merciful and will hear your prayer."
-Saint Padre Pio

Wednesday, July 12, 2017

Let Freedom Ring!

+JMJ+

Did y'all have a happy 4th of July?! Ours was very low-key and perfect because of it. :)

We spent the month of May traveling a lot (my husband had a guys' trip, I had my sister's commencement, & we took a 5 day trip to see my in-laws over Memorial Day) which was followed by Peter's 2nd birthday then a weekend trip to the mountains. Whew! We still have a LOT to accomplish locally as we continue settling into our new house and preparing for our baby girl's arrival, so the prospect of staying put for Independence Day was music to this pregnant mama's ears.

25 weeks

So, awhile back my husband and I decided that we would simply enjoy some local festivities, grill some good food, dress the kids in red, white, and blue and call it good. We even picked up some sparklers, which in my opinion was going above and beyond the call of duty with our kids' ages and everything we've got going on right now...so I consider the day a huge success!

The kids certainly had fun because we spent the morning at a local "old-fashioned" celebration where they got to sit on a fire truck, explore an old train caboose, and Gabriel was able to do a bit of putt putt, play a carnival game (which he amazingly won!), and participate in a karate "class" so he could break a board!

I wish the instructor's writing wasn't so sloppy, but it says:
"Gabriel's awesome board break!"

Plus, we parked down the hill from the festival and parade area, which meant we had to cross some train tracks and got there just as a real train arrived, backed up, and switched its track. A real, up-close, and personal train encounter PLUS ending the day with their first-ever sparklers?! Suffice it to say, our boys think celebrating America's birthday is pretty fantastic ("America's birthday" is perhaps not the best explanation of the day, but was the most age-appropriate thing I could think of to get them in the patriotic spirit). ;)


Good thing these boys have a dad to let them have fun,
because I would never have let the 2 year old do this!

Seriously, though, how BLESSED we are to live in a nation where "...all men are created equal...they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness." (Declaration of Independence)


God bless America!!!

"God Bless America, 
land that I love,
Stand beside her and guide her 
Through the night with a light from above; 
From the mountains, to the prairies, 
To the oceans white with foam, 
God bless America, My home sweet home."
-excerpt from "God Bless America" by Irving Berlin

Thursday, July 6, 2017

Our Little Oratory: Creating a Family Prayer Space

+JMJ+

A few years ago I was given David Clayton and Leila Marie Lawler's book, The Little Oratory: A Beginner's Guide to Praying in the Home. At the time my oldest child was still a baby and my husband and I had not yet figured out how to best incorporate prayer into our daily family life, but I was longing to improve in that department. I failed to read the entire book all the way through (because hi, I had a young baby), but simply having it on our bookshelf after reading bits and pieces (and packing and unpacking it for a bunch of moves) helped me hold on tight to - and better solidify - my vision for our family's future prayer space within our home.

Truth be told, we didn't begin any consistent "family prayer" time beyond saying grace before meals until my oldest child was about 18 months old. Since then, we have managed to incorporate family prayer into our children's nightly bedtime routine but it wasn't until we settled into our house that I was finally able to create the little oratory I had been dreaming of since before Michael and I even tied the knot!

Without further ado, here is what our family's little oratory looks like:


My basic goal was to have some religious icons or paintings displayed above a little table on which we can place votive candles, prayer cards, religious images or statues, and liturgically-themed items that we can swap out according to the appropriate liturgical season.


Additionally, I wanted some storage space (either baskets or drawers) so that we can keep extra prayer materials gathered in one easy-to-find space. I use each drawer for a different purpose, but they contain things like rosaries and chaplets, small prayer books or pamphlets, baptism and Advent candles, and religious things geared specifically toward the kids.

Finding the right spot proved to be a simple task once we knew the layout of our new house; my husband and I quickly agreed that the prayer space needed to be in our living room. There are some other spots it would look nice, but we wanted it to be somewhere functional so that we constantly see it and can be reminded to pray. Our aim was to find a prominent spot in the house that we regularly see but isn't completely "in your face" for visitors or guests. With that criteria in mind we quickly found the perfect spot in the far corner of our living room.

The view from our couch

I also wanted our prayer space to be accessible to the kids, so I made sure to choose a table that wasn't too tall, but just tall enough to make it hard for kids ages 2 and under to grab anything fragile.... ;)

I think prayer cards are a great (inexpensive and virtually indestructible!) way to include little ones in prayer and/or introduce them to religious images or Saints, so I bought a little wooden box to hold all our random prayer cards while keeping them visible and reachable. 

Box of holy cards for curious little fingers to grab

Many of the religious items on display change with liturgical seasons, feast days, or whatever special intentions we are focusing on praying for, but the 2 current staples that always remain are things the kids can be really hands on with: the box of prayer cards and the little "priest" that we dress in the appropriate liturgical vestments for the day or season. Peter is still too young to fully comprehend this concept, but Gabriel named our priest Father Gordon (yes, like the express engine from Thomas & Friends) and eagerly dresses him every Sunday morning and/or on special feast days (my older sister is entirely to thank for making us the priest and vestment set; she wrote a tutorial on her blog about vestment symbolism for kids in case any of you feel like crafting something similar!).

What our prayer space looked like on Good Friday (and again on Divine Mercy Sunday)

Not only has this prayer space been something fun to regularly redecorate, but more importantly it has actually reminded me to pay better attention to some of the many feast days within the Church and/or pray more often (and to lead my children in doing so). 

Eventually I added a burlap table runner to prevent table scratches and/or help cushion anything fragile that might get picked up or knocked over by my toddler boys. It could benefit from some ironing (as evidenced below), but it makes a great addition in terms of making me less nervous about kids grabbing everything (which of course does happen from time to time since that's one of the main purposes of creating the space to begin with).


^This is what it currently looks like as I focus on praying for our daughter through the intercession of Our Lady of Guadalupe, St. Gerard, and St. Gianna. Just looking at it makes me feel incredibly blessed, because many of the current focal points have been given to me by friends once they learned about our baby girl's diagnosis.

Previously I didn't have anything related to St. Gianna or St. Gerard, and now our little oratory contains relics of them both(!) - in the prayer card front and center and wrapped up in the golden cross of the pink ribbon tied around the OLG candle. These precious holy items are tangible reminders that we do not have to carry all our crosses alone, for not only do we have Saints in heaven praying for us, but we are blessed with people here on earth that are ready to shower us with love if we will only accept it.

It took time for me to share about this pregnancy experience on the blog and my husband and I seriously questioned whether or not we ever should - but I'm so grateful that we did. Neither my husband nor I like to ask for help or feel like a burden to others, but through this experience the Lord is teaching us that sometimes the real burden is to NOT ask for support or help when you need it the most.

So, if you can offer up some prayers for our baby girl I would greatly appreciate it - and please let me know how I can be praying for you, too!

"Prayer is not asking. Prayer is putting oneself in the hands of God, at His disposition, and listening to His voice in the depths of our hearts."
-Saint Teresa of Calcutta

Friday, June 30, 2017

Pregnancy & Life Updates

+JMJ+

When I recently returned to blogging after several months (almost years?) of sporadic posting I had every intention of writing at least one thing a week...and then our 18-week ultrasound happened. The past 6 weeks have managed to drag on and on while somehow also passing by in the blink of an eye (those of you that have experienced pregnancy or life with young children will know exactly what I mean).

Once I shared about our baby's medical condition I found myself flooded with messages of support and promised prayers for at least 3 days straight and for that I am so grateful. Thank you to all of you that have reached out and/or offered prayers for our family during this time!

Right now we mostly have a lot of waiting to do, so my husband and I have been focusing our efforts on all kinds of "nesting" and new-homeowner projects to productively pass the time - things like gathering estimates and booking people to fence our yard, help us remove the awful landscaping the previous home owners left behind, manage pests, and more. My husband has also been doing an awesome job leading the way with all kinds of negotiations and price-comparisons as we get closer and closer to purchasing a van any day now (I seriously cannot wait!) while I continuously work on personalizing and decorating the interior of our home (Curtains! Artwork! Frames! You get the picture).

This week we do have one major update with the baby, though:

On Monday, which marked week 24 of this pregnancy, we had our fetal echo-cardiogram and I'm happy to say that everything about our baby girl's heart looks perfectly healthy and normal!!!

None of our ultrasounds had shown any red flags about the heart's development so we weren't too concerned they would find anything. However, heart or additional brain anomalies are commonly seen with severe ventriculomegaly so it felt really good to rule out cardiovascular concerns and know that our baby's ventriculomegaly still appears to be an isolated issue.

It was refreshing to have one appointment that reported entirely GOOD NEWS and as Michael and I walked out of that office I felt a huge wave of relief and sense of peace rush over me.

Capturing the moment after some joyful news!

That afternoon gave me further excitement and internal peace when I spoke on the phone for an hour (God bless naptime) with the co-founder of a Catholic non-profit that ministers to parents given a prenatal diagnosis. This ministry can help us navigate all kinds of things within the medical community so that we can focus on enjoying our baby rather than stressing about the logistics of surgery, the NICU, a hospital baptism, and more. The ways in which they accompany parents on the journey is truly a gift and I look forward to getting to know them better in the months to come.

Then, we were blessed on Monday a third time because I managed to secure the next-available consultation appointment with a neurosurgeon at Duke which is THE big appointment that can answer so many of our logistical questions. Meeting with a pediatric neurosurgeon will help us make better sense of all the data we have been given in terms of what to really expect when our baby girl is born, so I eagerly look forward to the enhanced clarity it should provide Michael and me in just a couple more weeks.

So, the Lord is with us and we are moving forward in all the ways we know how. Thank you, thank you, thank you for all the loving messages of support and prayers. Words cannot properly convey our appreciation. Right now I just ask you to please, please continue praying for us in the several weeks to come!

"Be at Peace. The same everlasting father who cares for you today will take care of you tomorrow and everyday. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace then, and put aside all anxious thoughts and imaginations."
-St. Francis de Sales