Monday, June 18, 2018

A Tribute to Michael (Father's Day 2018)


I hope all of you had a blessed Father's Day! We spent the morning at church, decided last-minute to do lunch at IHOP, and enjoyed family time at home the rest of the day. My husband grilled us a delicious dinner (his choice!) and got to use the brand-new wooden serving platter I gave him (and I'm happy to report that he loves it!).

I saw so many people's lovely tributes to the father-figures in their lives whenever I happened to glance at social media, but I did not post anything myself because I just have too much to say about my husband and his role as a father this year.... When I read this article about remembering the fathers of sick children I could not help but think, "YES." Not that our special needs daughter is "sick," but her brain condition has undeniably given us our fair share of hospital life and much of the article rang true for our family.

The thing is, with all that has happened throughout the past year with Rosalie's prenatal diagnosis, her time in the intensive care nursery, multiple surgeries, frequent appointments with medical specialists, and early intervention therapies our roles have necessarily been quite different and I'm the one that tends to be in the limelight.

Because I am a stay-at-home mom I automatically became Rosalie's primary caretaker. When her shunt showed signs of infection at 6 weeks old, I was the one to spend 8-14 hours at the hospital with her each day for 3 weeks straight (thanks, Mom, for helping take care of our other kids during that stressful time!). I'm the one that takes her to appointments, directly communicates with all her doctors and therapists on a regular basis, deals with the hospital's financial services department, implements all the necessary strategies and therapies into Rosalie's daily routine, and spends every spare moment researching, advocating, and researching again...while taking care of 3 children ages 4 and under. I'm also the one that largely handles communication with family and friends whenever we have updates to share about Rosalie's progress or medical emergencies.

From the outside, it would be easy for people to see how hard I'm working to care for our special needs daughter and to dismiss Michael's role in all of this. But the truth is, I could not be doing anything I'm doing for Rosalie without him and the support he provides.

Not only did it make sense for me to be the one at the hospital for her 3-week shunt infection stay because I was still in the throes of teaching her to breastfeed, but Michael had another job (outside of the home) to do. He used up all his personal days to be by my side when Rosalie was in the intensive care nursery and I needed to heal from the C-section. I could not have functioned physically or mentally without him helping me navigate the NICU and its revolving door of specialists while Rosalie and I were both recuperating from surgery. But that meant he could not be there later on for any of her 3 subsequent brain surgeries. 

How easy (and naive) it would be for people to look at Michael and judge him for not being there for 3 of Rosalie's surgeries. But when a child has ongoing extenuating medical circumstances, it is ridiculous to think that both parents can be there for everything. If both of us were there, who would be earning an income to pay for all those bills??

Can you imagine what it's like for your infant to need 4 brain surgeries during their first 4 months of life and only be able to be there for 1 of them? To entrust all immediate interactions with doctors and nurses to your spouse and get that information secondhand whenever she can get a break to text you?

Honestly, the sacrifices Michael has made to be the father our kids need are nothing short of heroic. Financially, we would be drowning if my husband did not sacrifice being with the kids as much as I am in order to provide for us all. But it's not just about providing financial stability, either.

My husband is my biggest supporter; he gives me the love and tools needed so that I can devote my time to raising the precious children we've been blessed with. And then we raise them together when he isn't at work! He is the only one that truly understands what this amazing, challenging life is we have been living, especially since we were blessed with our precious hydrocephalus warrior.

He is always there to listen to me, help me brainstorm, and encourage me to be the best advocate I can possibly be for our daughter. 

He is the one that pushed me to hire a mother's helper so that I'm not drowning in medical or household tasks and can get a break once in awhile. 

He is the one that tells me it is okay to even take a mental break - understanding how crucial it is for my mental health (and the entire family's).

I will never forget the time during our engagement when we met with the priest who witnessed our wedding. As we chatted about how Michael and I met, the wedding, and more I happily answered most of the questions. Then, Father Cassian turned to Michael and commented that he could not help but think that Michael is very much like St. Joseph. He spoke about how St. Joseph was never really in the forefront of the Holy Family, but his role was significant. He spoke about Michael's strong presence - the way he listened and said few words, but the words he spoke were always profound. Even now, nearly 6 years later I can clearly see how true Fr. Cassian's perception of Michael is.

Just as the Holy Family would be incomplete without St. Joseph, our family would be incomplete without Michael (but in no way am I trying to draw any parallels here between myself and the Blessed Mother!).

When people tell me they are so impressed by all that I'm doing for Rosalie, it would be unfair for me to take all of the credit. Yes, I'm doing much of the hands-on work - but Michael is being an amazing father by supporting me emotionally and supporting all of us financially. We are only doing as well as we are because he is the one taking care of us behind the scenes.

So, Happy Father's Day, Michael! I love you - and I see you and the work you do day in and day out for the benefit of our entire family. You serve as an anchor that holds us steady throughout the storms of life. Thank you for loving and supporting us so well.

"The most important thing a father can do for his children is to love their mother."
-Theodore Hesburgh

Thursday, June 7, 2018

CVI Phase I-II Adaptations (aka what I've been doing for the past month)


Today marks one month since we received our daughter's Cortical Visual Impairment (CVI) diagnosis. One entire month since we learned of our daughter's disability - a disability of visual access. Thankfully we have a pediatric ophthalmologist that rightly informed us upon giving the diagnosis that it is a visual impairment that can be improved with proper interventions (how frustrating for so many CVI parents that they were wrongly misinformed by medical and educational professionals from the get-go and took years of fighting and researching to get to where we are now!).

Still, the basic information I was given at the eye doctor in no way revealed to me that CVI was so complex - and the intervention methods she listed were barely the tip of the iceberg of what we could be doing for our sweet Rosalie. But, because she gave me the most crucial information about CVI that so many parents are not given - the fact that we CAN do things to improve her vision (technically, how her brain understands vision since her eyes work fine) - I went home and got to work researching. In other words, I was able to immediately dive headfirst into medical research and advocacy mode for my daughter....

First, I visited the website Little Bear Sees, which helped me begin to see the magnitudinal impact CVI has (and will have) on my daughter's everyday life - but it also helped me start to digest the message that there were several things I could truly (and inexpensively) begin implementing immediately(!) to help my daughter better "use" her vision, thus making important neural connections in her brain.

So, I began devouring ALL the blogs, parent support group tips, and eagerly awaited the moment I could begin reading Dr. Christine Roman-Lantzy's book, Cortical Visual Impairment: An Approach to Assessment and Intervention, as soon as it was in my hands a week later (I also highly recommend the Little Bear Sees book; I easily consumed the entire thing in a single day and the resources listed in the back are well worth purchasing it!).

Within days of Rosalie's diagnosis I knew enough to hunt down a nearby Perkins-Roman Endorsee to get an official, accurate assessment of where Rosalie is at on the CVI Range. But, the appointment was more than a few weeks out and I understood (thanks to all the great resources being produced by Dr. Roman-Lantzy, Perkins School for the Blind, and several parents that are true CVI advocates paving the way for improvements in medical care and educational instruction for our kiddos!) that time is of the essence with CVI. I went ahead and took things into my own hands, because waiting a month to do the CVI Range assessment and eventually meet our state-assigned teacher of the visually impaired (TVI) would mean losing an entire month in which Rosalie could make progress.

What did I do? Well, for starters I hit up Michaels, The Dollar Tree, and Amazon using the 10 characteristics of CVI and firsthand knowledge of my daughter. Even though I did not know yet exactly where Rosalie was on the CVI Range, I did know that she is very young and surely in the earlier stages; plus, I figured that the single most important thing was to get her looking. Once I knew her score on the CVI Range I could better tailor things to her exact skills, but it was highly likely she would benefit from all the typical things kids in Phase I of CVI benefit from (and my best educated guess was that she might be late Phase I, mayyyybe early Phase II out of the total 3 phases of CVI).

Understanding that red and yellow are often the first colors our eyes can detect (and are nearly always a CVI child's initial preferred colors), I made sure to get simple, single-colored items but especially red and yellow. Understanding that CVI kids are drawn to lights I purchased little flashlights (for highlighting items I want her to see), light sticks that glow in bright colors, and some LED string lights to hang above one of her play areas. Understanding a CVI child's typical need for movement to visually attend to things, I stocked up on slinkys and shiny items (because the reflective properties give an impression of movement) like tinsel, shiny garlands of stars, balloons, pom poms, bead necklaces, etc. 

Top: Michaels items, Bottom: Dollar Tree haul

Thinking ahead, I also got some sparkly foam star-shaped stickers and sparkly washi tape that I intend to stick on everyday items as Rosalie gets bigger and strong enough to sit up and pick things up (like cups, spoons, etc.). These kinds of tricks can help a child begin to better see their everyday objects.

CVI kids can better see visually simple toys - like solid red Elmo and solid yellow Big Bird (she loves her new friends!)

Especially important for a child with CVI is minimizing the complexity of the environment, so I purchased a black baby blanket, black sheets, black fabric squares, and a couple of black "science fair" tri-fold boards that can be used to help her better focus in various places throughout our home.

Seeing and intentionally reaching objects can be challenging for CVI kids - but she did great when
I hung these beads! Don't worry, she was supervised the entire time. ;)

She loves this star balloon and visually tracks it beyond her preferred visual fields!

Minimizing the complexity of the environment:
Black blanket, black tri-fold board, few simple toys,
shiny objects dangling from up above

Per Rosalie's new OT's recommendation, I found a baby toy that lights up for her to see during tummy time - and I immediately saw an improvement in her tummy time attention-span and duration, which is crucial for building neck strength and head control (the main source of all her PT needs because of her hydrocephalus and being born with a large, heavy head).

All of these items can be used whenever Rosalie is awake and playing on the floor, in the play pen, in my arms or lap, etc. But, the next logical step was to think more wholly about her environment and pinpoint every place she spends any amount of time on a regular basis; I started brainstorming ways to get her to use her vision during meals, diaper changes, when she wakes up in her crib, riding in the car seat and/or stroller, in the bath, etc. I began realizing that Rosalie was probably not using her vision much at all doing things like riding in the car - because there was nothing she could easily see or focus on! It's important to understand that a child with CVI will not use their vision in an environment or situation when they are not given anything their brain can make sense of to look at; they will typically have a blank gaze and instead use their other senses (but a child with CVI does not LOOK blind because their eyes work; so it is crucial to remember that even if they appear to be looking that does not mean they are fully seeing).

The very first thing I did (even before I purchased all the dollar store items) was to grab a shiny red gift bow from the closet and stick it on the end of her spoon. I now use it every single time I feed her in the high chair, and after about a week I saw her sometimes opening her mouth in anticipation of the food when she saw the spoon coming. Prior to consistently adding the bow she never once opened her mouth for the spoon; I would have to gently touch her bottom lip to get her to open her mouth - because (in hindsight it's pretty obvious) she could not see the spoon coming! This is progress, y'all!

In the crib I added a mobile - one that has red and yellow images (her preferred colors). I understand that the images may be too complex/cluttered for her to fully process, but a mobile MOVES, which is a key to simply get her looking. It's better than nothing! And I have plans to adapt it if need be by covering it with single-colored construction paper and adding pipe cleaners or other shiny objects. I also purchased an inexpensive white sheet (it only slightly broke my heart to remove her floral one that this boy-mom had custom made from an Etsy shop for my only daughter - but her vision is so much more important than my feelings about a crib sheet!).

Rosalie's view - all red and yellow images

I got the travel version of the same mobile, which easily clips onto a car seat or stroller. Again, the images may be too complex, but it bounces and moves around as she rides so it catches her eye - and I have recently seen her looking and reaching for it!

Finally, I realized that the bathtub faucet cover in our kids' bathroom has Elmo on it - so I decided to start showing it to Rosalie before her baths and rest it on the edge of the tub in hopes that she might see it and start to make a visual association with her bathtime. In hopes of increasing the likelihood she will truly "see" it, I added a red, shiny, foam, star-shaped sticker. So when she sits in her bath chair it looks something like this:

And the list goes on and on. I know that there are many more ways I can adapt her environment, including making improvements to the areas in which I have already started making changes. But, CVI is a visual impairment that can begin improving with even a few, simple, consistent changes. I don't typically like to start implementing things that are not "perfect" or "completely ready," but in this case not only did I just start here and there, but I would also encourage other CVI parents to do the same. We're always going to be finding new ways to adapt something for our daughter, so the work will never be "done." It's much better to start small and build our way up as we go than to sit around missing out on little opportunities to allow our children to really see.

Lo and behold, when I got Rosalie assessed by a Perkins-Roman endorsee a couple days ago it was confirmed that she is in late Phase I - very close to starting Phase II (UPDATE: once I got the complete written report her final score actually landed her in early Phase II). So, the adaptations I've implemented thus far are pretty appropriate and useful for her. I'm certainly no expert, but for those of you with kiddos in earlier stages of Phase I, I would probably recommend playing with lighting even more. Rosalie is not distracted by natural lighting at this point, but does seem entranced by light-up toys - especially if we dim the lights a bit. I imagine that kids in earlier Phase I might need low lighting as a more regular part of their environmental adaptations. Wherever you're at, just keep going. Trust me, I know it can feel overwhelming knowing there is so much to DO...but I also find great peace knowing that there is so much we CAN do. It will only get better from here.

"Unless someone like you cares a whole awful lot, 
Nothing is going to get better. It's not."
-Dr. Seuss, The Lorax

Tuesday, May 29, 2018

CVI 101


I recently shared that our baby girl (who was born with congenital hydrocephalus) received an added diagnosis - one that moves us from the "special medical needs" category into the realm of parenting a child with a disability. Of course there is a great deal of overlap between these two "realms" of parenting, but I feel the need to make a distinction - not because it impacts our love for our daughter in ANY way, but because each diagnosis plays a very different role, practically speaking, in our day-to-day lives.

Let me begin by reiterating that congenital hydrocephalus is not a disability; it is a medical condition that can potentially cause any number of physical or mental disabilities due to increased pressure being placed on the brain as it develops in-utero/prior to surgery. The outcomes for a child with hydrocephalus depend greatly on the severity of the pressure on the brain before birth (when the child can then have surgery to manage the condition), what part(s) of the brain were the most "squished" while growing, what (if any) parts of the brain did not form properly, etc. So, while Rosalie's hydrocephalus did plunge us into the world of "special needs" parenting, her early intervention needs thus far have been to address developmental delays she can and will outgrow as she gains better head control (hydro kids are born with large/heavy heads that they will eventually grow into, but the size can obviously delay many developmental skills).

So what is this disability I'm talking about?

Well, a visit to a pediatric ophthalmologist revealed to us that Rosalie has Cortical Visual Impairment (CVI). CVI is the leading pediatric visual impairment in developed nations - which you have probably never heard of; literature on CVI has only really come on the scene in the last couple of decades and even teachers of the visually impaired (TVIs) are not necessarily required to have any sort of official training in CVI (something that is s-l-o-w-l-y changing and needs to improve ASAP!).

What is CVI exactly? 
It is a visual impairment that occurs due to brain injury (in Rosalie's case, being born with hydrocephalus). Rosalie's eyes are perfectly healthy and function exactly as they should; her eyes are seeing, but her brain has a difficult time interpreting what is being seen. Imagine seeing the world as if you were looking through a kaleidoscope coupled with potential "holes" where you see nothing. The world would look like utter nonsense - which is more or less how things appear to a child in the early phases of CVI, although each individual's vision impairment is completely unique to them depending on how/when/where their brain was damaged.

We had anticipated that Rosalie may have vision problems considering they are common with hydro kids and her first MRI at birth revealed that the "vision" part of her brain was under some of the greatest pressure before she got her shunt. However, CVI is not an ocular impairment; it cannot be fixed with glasses or surgery. 

What can be done about CVI? Can it improve (and how)?
Well, since the brain has this beautiful thing called neuroplasticity people with CVI can be "taught" to see by giving the brain appropriate opportunities to "use" their vision in the right context and environment. This is not something that can be achieved effectively with an hour of vision therapy once a month (or even once a week), but requires us to think about and adapt every aspect of Rosalie's environment throughout her daily life. Essentially there are 10 characteristic visual behaviors of CVI and the goal is to help "resolve" these characteristics, at which point a person with CVI could achieve "near normal" vision. Few will ever achieve fully normal vision; for example, a cane may still be necessary for safety purposes if someone with CVI has unresolved lower vision field problems.

So...what next?
The really good news about Rosalie's diagnosis is that not only is it something we can and will do something to improve, but we caught it early enough that we can optimally maximize whatever her vision permanently becomes! Experts tend to agree that while neuroplasticity allows improvements to be made at any age, birth to age three is the "magic" time to intervene and get appropriate vision therapies for CVI. The first year of life is particularly crucial in permanently impacting visual function development within the brain.

The day we got the diagnosis I kicked it into high gear researching. I joined CVI groups online, found the best relevant CVI books, read informative websites and blogs, and more. I quickly learned that there is an expert on CVI (who literally wrote the textbook and developed the CVI assessment tools) and many people fly their kids to be seen by her in Pittsburgh. I also learned that there are currently about 60 people throughout the nation endorsed by this woman (Dr. Roman-Lantzy) and the Perkins School for the Blind to provide the "gold standard" assessment called the CVI Range. I rejoiced when I discovered that one of them just opened a private clinic location practically in our backyard - and you'd better believe that within a week we were on their calendar to get Rosalie assessed! I also made sure that our referral for free (state-funded) vision services went through and had been added to her early intervention plan, so we can get the ball rolling with a teacher for the visually impaired (TVI) that will regularly come to our home. I even found a brand-new CVI podcast, listened to the first episode, and reached out to the host (who happens to live in our area)!

Importantly, I immediately learned that there were plenty of inexpensive things I could purchase right away from a dollar store and/or craft store in order to give Rosalie more opportunities to "use" her vision throughout our daily routines. It's important to get an assessment and learn where Rosalie is at so that we know what interventions to focus on (aiming for things that are too advanced or too easy will not maximize her vision potential), but until then the important thing is get her looking. The more she "sees" the more connections her brain can start to make!

So that's where we are right now. We are quickly approaching both the official CVI Range assessment at the private clinic and the free functional assessment our provided TVI will perform, but in the mean time I've stocked up on all kinds of random items and/or toys that CVI kids are typically drawn to (and I know Rosalie visually responds to). I've integrated these items into our daily lives, which means Rosalie is constantly working her vision (and boy, was she tired the first few days because of it!).

How long does it take to "resolve" all those CVI visual behaviors?
One of the first things everyone wants to know (ourselves included) is how LONG it takes for a child with CVI to be able to see "normally." Keep in mind that a child with CVI may never achieve "near normal" vision. However, one research study performed by Dr. Roman-Lantzy showed that in a select group of children with CVI that had "highly motivated parents," 97% went from Phase I to Phase III (near normal vision) in an average of 3.7 years.

I think it's pretty safe to say that Michael and I fall into the "highly motivated parent" category, considering all that I had read and accomplished regarding Rosalie's CVI within 2 weeks of receiving her diagnosis.... So, perhaps when she is 4 years old we might get to late Phase III?

Needless to say, I've hit the ground running and am proudly wearing my badge that says not only will I be advocating for my daughter within the medical community, but will also be taking on the education system. It's too early to know what ongoing therapies and interventions Rosalie may need when she reaches school age or what path we will take with her schooling, but I'm learning my options and putting things in my tool-belt for future use.

A final note: many of you recall that Rosalie is participating in a research study that examines the impact of stem cell infusions on potential neurological damage repair. This highly-regarded study at Duke is sought after by hydrocephalus parents all over the country, because it is THE one scientific thing we can do to potentially help our kids beyond standard hydrocephalus treatment. Well, now that we know about Rosalie's CVI, Michael and I 100% believe that her CVI improved after her first stem cell infusion in March.

Post-infusion we saw a huge boost in Rosalie's level of interaction and sudden desire to move around - all of which can clearly be linked back to her vision. In hindsight we know that some of the visual behaviors of CVI improved. This is HUGELY promising! Our baby girl has enough cells from her cord blood to potentially receive 3 total infusions and her second one is coming up in a few weeks. Please join us in praying that the future stem cell infusion will help repair more damage in her brain, particularly as it relates to her CVI. Any boost can potentially help her move to Phase III faster.

Thank you, thank you, thank you for your continued prayers! We seriously know they are helping our little girl and the entire family.

Want to learn more about CVI? Check out these pages, which also link to multiple additional resources:

Start Seeing CVI
Little Bear Sees
Webinars for CVI by Perkins School for the Blind

"No one ever injured their eyesight by looking on the bright side."

Wednesday, May 23, 2018

Motherhood as of late


It's been awhile since I've untangled my thoughts in this space, which basically means I have been continuing to learn our family's new normal with three kids ages 4 and under while performing constant behind-the-scenes work that is typical of any special needs mom. Writing necessarily falls on the back-burner when I'm spending almost every spare minute (when the kids are asleep) researching, advocating, and making phone calls (related to early intervention therapies, medical appointments, medical billing errors, etc.).

Ever since Rosalie's 4th brain surgery back in February (due to a shunt malfunction) we've been basking in the glory of a much-needed respite from hospital life. We even got to celebrate her 3-month "shuntiversary" a couple weeks ago, which is the longest she has ever had a shunt remain complication-free! Having things good and stable with Rosalie's shunt allowed her to finally receive her first stem cell infusion (you can read about the research study we are participating in here and here) in early March and truly, she has been thriving since. We have begun to see big strides with her physical therapy and have seen her exhibit a much stronger desire to move around (she can now get onto both her sides and rolls easily onto her stomach from her left side!) and much more.

I had grandiose plans of writing something poignant for Mother's Day about this journey that I've been on the past several months since our beautiful daughter was born, but was just too hard. That might sound strange because I have been blessed with 3 precious children that absolutely make me feel like celebrating this gift of motherhood, but the entire week leading up to Mother's Day had me feeling the weight and depth of the heavy waters I have been plunged into this past year since we first learned of Rosalie's prenatal diagnosis.

I saw a handful of lovely Mother's Day videos circulating around, but this is the one that I identified with the most this year:

And this Mother's Day article about remembering the mothers of sick children (seriously, click on over and read it - I'll wait) made me tear up while nodding along, because it did a beautiful job summarizing some of the crosses I now carry while simultaneously articulating the depth of my joy as Rosalie's mommy. It also explains that my abilities as a mom to a child with a brain condition are not superhuman; I just intensely love my child(ren).

I realize that I sound like a broken record, but I need to continue saying and acknowledging that Michael and I have just lived a LOT of Life this past year.

Not only was Mother's Day right around the one year anniversary of our ultrasound when we learned about Rosalie's hydrocephalus (making me all kinds of pensive about what God has challenged and abundantly blessed us with ever since), but the week before Mother's Day we received an added diagnosis that means we are now parents of a child with a disability, which is a lot to mentally process.

Now, before I continue I feel the need to clarify that hydrocephalus is not a disability. It is a medical condition that can potentially cause any number of physical or mental disabilities before surgery takes place OR as the result of shunt complications, but in and of itself it is not a disability. Because hydrocephalus puts so much extra pressure on the brain (particularly when it is forming in-utero) the outcomes widely vary and not everything will be detectable at birth; some things may take months or years to manifest - like the fact that hydro kids have a lifelong risk of developing seizures (it may happen, it may not).

Thankfully Rosalie's recent diagnosis (which I will elaborate on soon) is one that can greatly improve with proper intervention - especially when it is caught so early (praise!). Time is of the essence, so on May 7th I really hit the ground running. I kicked it into high gear with researching and doing what I needed to do in order to help Rosalie immediately - and all this was in the days leading up to Mother's Day and, shortly thereafter, the anniversary of our life-changing ultrasound. Basically my mental load was huge, which is the main reason I finally prioritized putting some of this down in writing.

It's only been a couple of weeks, so most of my family and friends probably have no idea that I have practically fallen off the face of the earth. Sure, I've intentionally gotten out of the house with the kids, scheduled some play dates, maintained our daily routines, and tackled any mandatory responsibilities, but when a friend asked what I've been up to and I responded with, "researching," boy, did I mean it. My husband and my mom gave me Mother's Day gifts that included 3 (somewhat pricey) medical and educational books regarding Rosalie's new diagnosis because that is the only thing I wanted.

Well, I wanted the books and I asked Michael to teach the boys what Mother's Day is - because I'm typically the one that prepares them with explanations for holidays and celebrations and I refused to do that for Mother's Day this year. ;) The way the boys greeted me in the morning with hugs, "Happy Mother's Day," and Gabriel sweetly told me he likes it when I take him to swim class demonstrated that Michael followed through on that request. :)

So, that's what is new in our neck of the woods! A whole lot of reading, thinking, praying, being thankful for my 3 amazing kids, and incorporating new things into our daily life with Rosalie. We love you so much, baby girl!

2&3 Photography

As always, thank you for your prayers (we know they are helping!). I hope all of you had a blessed Mother's Day!

"The Most Important Person on earth is a mother. She cannot claim the honor of having built Notre Dame Cathedral. She need not. She has built something more magnificent than any cathedral -a dwelling for an immortal soul, the tiny perfection of her baby's body. . . The angels have not been blessed with such a grace. They cannot share in God's creative miracle to bring new saints to Heaven. Only a human mother can. Mothers are closer to God the Creator than any other creature; God joins forces with mothers in performing this act of creation. .. What on God's good earth is more glorious than this: to be a mother?"
-Joseph Cardinal Mindszenty

Tuesday, March 13, 2018

90 Years Young!


Happy birthday to my beloved grandmother, who turns 90 years young today! 

Brian Powell Photography.

Some of you that have been following the blog for awhile will recognize her from her visit during last summer's solar eclipse, our most recent professional family photos, etc.

I'll never forget when, during our wedding rehearsal dinner, Michael's family asked my grandma how old she was. At the time she was taken aback (because you never ask a lady her age, right?), but since then she has come to learn and understand that in Korean and Chinese cultures being the oldest person in the room is a great honor that earns you respect; elders are always recognized for their wisdom and treated accordingly.

My grandma chatting with Michael's mom and grandmother at our rehearsal dinner. Brian Powell Photography.

Ever since then I have slowly seen my grandma begin proudly "owning" her age, to the point where she now joyfully proclaims that she is "____ years young" to family, friends, and strangers alike!

Often people marvel at my grandmother, because although she has all the knowledge and wisdom of a 90 year old woman, she has the energy and spirit of someone much, much younger (she even sends text messages)! Whenever she shares her age with them I can sense that people are simply in awe. Many have asked her what her "secret" is, to which she joyfully shares what is not actually a secret at all: that she loves and personally knows the Lord, that her friends and we (her family) keep her young, that she takes vitamins, and gets "a little help from [her] friend, Estee Lauder."

Every single one of my friends that has met my Dear Ma (a family nickname that began with her grandmother - my great-great-grandmother and the original owner of the diamond in my engagement ring) remembers her with glee because she never fails to delight them with her lighthearted joy, sincere enthusiasm, and spunk. And for those of you that haven't met her but have had the pleasure of meeting my younger sister, well, then you've caught a glimpse of Dear Ma's heart and personality - because it has become obvious to all in my family as my sisters and I grew into adults that my little sister and Dear Ma are kindred spirit sisters...right down to the way they both adore butterflies more than anyone else I've met.

Brian Powell Photography.

Right now my mom, older sister, nieces, aunt, and uncle are in Kentucky celebrating her birthday with her and I'm bummed that I cannot be with them - but the plan is to have a big family celebration this summer which I am very much looking forward to! I cannot wait to officially introduce my grandma to our sweet baby girl, Rosalie; Dear Ma is arguably the biggest prayer warrior I know and she has been holding Rosalie in her daily thoughts and prayers for many, many months (in addition to getting hundreds of others praying through her numerous prayer chain connections!).

These days Dear Ma is my only living grandparent and I'm truly blessed to have been able to share so many years getting to know her, especially as an adult and now wife and mother. My entire family has always been a huge support to Michael and me, but Dear Ma has been a special source of encouragement and affirmation in our lives with every one of Michael's job/client changes and our moves - and I would even venture to say that she may have shared equally in our excitement and happiness when we decided to plant roots in North Carolina. We couldn't have asked for a better prayer support or cheerleader throughout our first 5 years of marriage (and babies).

Happy birthday, Dear Ma! Your family in North Carolina loves you, misses you, and cannot wait to celebrate in person with you soon!

Walking Dot Photography.

Walking Dot Photography.

"Grandparents are a delightful blend of laughter, caring deeds, wonderful stories, and love!"

Wednesday, February 28, 2018

Rosalie: 5 Months


This week our little Rosalie Elisabeth is officially 5 months old!

So much has happened in this relatively short time frame, including in recent weeks since I last shared any updates here. Almost 3 weeks ago Rosalie underwent her 4th brain surgery - this time due to a shunt malfunction. This means we've now experienced a shunt infection, needing to urgently reprogram her shunt valve to a new setting, and a shunt malfunction. Basically every major shunt complication there is....

Long story short, she is now on her 3rd shunt, has recovered well, and is thriving. It's obvious that life is so much more comfortable for her since her last surgery - and she even began having giggle fits just a few days post-op which is one of the happiest sights and sounds in the world. :) At this point we are hoping and praying that this new shunt will remain infection-free (shunt infections commonly occur 1-3 months after surgery, but are possible up to 6 months post-op) and that it will function well for a very, very, very long time. Forever, if possible. 

Someday we WILL be able to celebrate something longer than a "2 month shuntiversary." Hopefully with this one. ;)

5 months old!

Truthfully I cannot fully convey what these past 5 months have been for us. We have learned much - about ourselves, hydrocephalus, hospitals, being fierce advocates for our child, being parents to a child born with a medical condition/special needs, and of course as much as we can about our beautiful daughter.

We have worked diligently and tirelessly in the day-to-day to ensure the best for her development (and the wellness of our entire family) and have loved deeply. Oh, how we have loved.... And been grateful. And tired. And sad. And completely joyful. And hopeful. And discouraged. And encouraged and uplifted. And strong, as we have worked through our weaknesses and trusted everything over to Him.

We have felt and experienced so much more than all this, but the one thing we have never been is lost. Because more than anything, we have trusted in and felt the Lord's presence. We have seen His miraculous hands at work! We have been enveloped by His goodness all around us. Even when we have struggled we have never felt true despair, and that is the power of His love. He has been steadfast and true; He has carried us through what can only be described as a refining fire. 

I cannot wait to see the many fruits of what He has planted by gifting our family with this precious child over the months and years to come. Because this cherished little girl is such an amazing gift. 

We love you more than words can express, Rosalie. You are a fierce, strong hydro warrior but that is only one part of your story; no doubt the Lord has BIG plans for your life because you're already inspiring people around the globe. Thank you for lighting our path and filling this journey as your parents with such indescribable joy.

"We know that all things work together for good for those who love God, who are called according to his purpose."
Romans 8:28

Friday, January 12, 2018

Trust & Mother's Intuition


This week has shown me so much goodness and joy alongside so many feelings I can't quite find the words for.

It was a week of great concern, heightened mother's intuition, and careful scrutiny, but it was also a sort of hovering cloud of anxiety coupled with great confidence that we, Rosalie's parents, knew exactly what was happening and what we needed to do (praise Jesus!). It's impossible to describe the kind of sustained, days-long adrenaline I felt while being totally at peace unless you've somehow experienced it, too. I imagine this circumstance full of confidence and peace amidst sincere worry for a child's well-being is only found through trusting in the Lord's goodness and presence in our lives.

Three & a half months ago I was very concerned that Rosalie, our daughter with hydrocephalus, could have a shunt infection or malfunction and we would have trouble detecting it. Now that we have lived through a few shunt-related scenarios I can see that despite some of the symptoms being subtle they are glaringly obvious to us as her parents.

When well-meaning, supportive friends told me to simply enjoy the long stretches of sleep Rosalie had 2 nights in a row I just knew I couldn't let my guard down. When Rosalie unexpectedly spat up in her car seat one day we could have written it off as normal baby behavior - but the Lord nudged my intuition to take note. When I studied her face during her play time and noticed some familiar bone plate ridges becoming less pronounced and her eyebrows looking more filled out my internal alarm system went off. It was so subtle no one but my husband and I could see it - and most of the signs can be misconstrued as "normal" baby behavior so our friends would be none the wiser...but we know her better than anyone.

This week we had a healthy reminder that WE are our daughter's most reliable day-to-day experts and biggest advocates. Yes, she is receiving excellent medical care and the problem we discovered with her shunt would have been detected at her follow-up with neurosurgery next week, but we caught it at home as soon as we possibly could, which ensured one week less of pain and potential complications for our child.

Long story short, my husband and I began to notice a slew of subtle symptoms that suggested her intracranial pressure was increasing (which is what happens with hydrocephalus when fluid begins building back up/not draining as efficiently as it should).

On Tuesday afternoon her increase in head circumference was slight, but enough for Michael and me to agree we could both see it. I called first thing Wednesday morning to request they look at her MRI scan from Monday; within 5 minutes I got a call back saying they reviewed her scan and bumped up our appointment with her neurosurgeon to the next day instead of having to wait another week for follow-up.

Thankfully this 2nd shunt Rosalie was given is programmable, which means there are several valve settings that can be changed without surgery via use of a specific, industrial strength magnet. Her neurosurgeon changed her shunt to a new valve setting and we'll be following up in about a week and a half, but Rosalie seemed to feel some relief a mere half hour after the adjustment - and in less than 9 hours we could visibly see some of the swelling from the fluid build-up going back down. Hopefully in a few days she'll be totally back to her normal self, but she is already well on her way!

Feeling happy, happy, happy less than 24 hours after her shunt reprogramming!

I'm so thankful that we have access to wonderful medical facilities and care for our little hydrocephalus warrior - and I'm grateful that as her parents we have apparently been given great knowledge and tools to help our daughter stay healthy and thriving. The Lord is slowly, continually revealing to me on this new journey as a special needs parent that He truly does equip the called, rather than only calling the equipped. 

If you have children it doesn't take a special needs child to teach you how to trust both the Lord and your gut, but in our case it certainly seems to be magnifying and enhancing it. As parents we cannot control what kinds of medical illnesses or conditions our children are born with or exposed to, but we can educate ourselves, prepare for what we are able, and simply trust that God will carry us through the rest. Again, He does not call the equipped - but equips the called. 

I hope and pray y'all can also find peace in trusting that the Lord will provide all the necessary tools to handle whatever it is He blesses and challenges you with. 

"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go."
Joshua 1:9