JOYFUL + RISING NEWSLETTER #60
WHAT A JOY IT IS TO SEE YOU AGAIN | SEPTEMBER 29, 2024
Hello, my friends!
I want to begin this letter by thanking you for your unwavering patience during my absence from writing, content creation, and newsletters. After our daughter, Marsaili, passed in March of this year, what had long been a work that was both a hobby and a form of therapy for me became something that just exacerbated my grief. As I have taken time to process that grief in the last six months, I have reached a space where I believe my heart is ready to write again.
Since taking a pause in writing, I have had several people sign on to this newsletter who may be unfamiliar with our story, so I’d love to take a moment to reintroduce myself and our family before I update all of you on what have been navigating the last several months.
MEET THE AUTHOR
My name is Hillary Ramos. I’m a 33 year-old, Georgia born and raised, Christian mama and wife. Coffee and spontaneous DIY projects are my love languages, and my husband and I are blessed to raise our family in Georgia, where we'll soon celebrate a decade of marriage.
Prior to becoming a stay-at-home mom, I was a practicing pediatric physical therapist. Just six months after I stepped away from the physical therapy world, I found out we were expecting our second child, Marsaili. We were absolutely thrilled!
However, at my 20 week anatomy scan with Marsaili, our world was rocked when we discovered she would have many medical complications. The remainder of my pregnancy was riddled with anxiety and specialists’ visits. Thankfully, Marsaili was born safely via c-section in May of 2022.
While she was in the NICU, Marsaili was diagnosed with a rare neurological condition called Lissencephaly, epilepsy, and a variety of other coexisting medical conditions. At that time, we had no answers as to why she was facing so many challenges.
It took multiple rounds of genetic testing for our specialist’s to finally discover the underlying cause of Marsaili’s complications. In February 2024 her genetic results came back positive for a newly discovered, recessively linked genetic disorder called “bi-allelic loss-of-function variance in the PPFIBP1 gene.” To our knowledge, there is only one study available addressing this disorder, and less than 20 patients were included in the study.
Wrecked with grief over this news, we were faced with the reality that having more biological children meant that there would always be a 25% chance that our future children would inherit this disorder. In the midst of navigating that grief, we were shocked to discover just a couple of weeks later that I was pregnant with our third child.
Overwhelmed with feelings of gratitude and anxiety, we chose to trust God’s plan for our family. Our faith was put to the test when Marsaili was hospitalized for a final time in March of 2024 for yet another respiratory illness. We made the unimaginably difficult decision after days of watching her fight and become more and more fatigued that it was time to remove medical interventions and allow her to pass peacefully.
Marsaili passed away in my arms on March 19, 2024. Since her passing, we have grieved her loss and have done our best to navigate this new pregnancy with as much hope as possible. We still don’t fully understand God’s will and His purpose - we find ourselves wishing every single day that she could have stayed with us just a little longer.
However, we have also witnessed God’s tremendous provision and redemption in this journey. We are certain that Marsaili was jumping for joy with us in her Heavenly home when we discovered that her baby sister’s (yes, we are having another precious girl) genetic tests and scans all came back completely normal.
This journey has been a whirlwind to say the least. I often find myself sitting quietly just marveling at the way God has chosen us to be parents to three wonderful children. They have taught us more about life, love, strength, faith, and perseverance than we could have ever imagined.
As we continue to grieve Marsaili’s loss, we rejoice in the truth that she is no longer experiencing any suffering, and that she is praising Jesus with many other people we have so deeply loved. We rejoice knowing that we will see her again and that she will forever be a part of our family.
Our precious third child and second daughter, Brielle, is due to make her appearance in late October. We are in the midst of a very busy season of life, but it is my hope that I can continue to share this journey (and all that we continue to learn along the way) with all of you.
MOVING FORWARD: WHAT’S NEXT FOR THE NEWSLETTER?
If I am being totally honest, I don’t know what the future holds just yet for this space. Stepping back in with this newsletter was the first of many steps that I am sure will be required as I begin re-entering the writing and content creation space more regularly. In addition to preparing for Brielle’s arrival, we also began homeschooling Liam, our oldest, this year, and we are still working hard to find good rhythms and routines with this major lifestyle shift. I covet your patience, prayers, and encouragement as I work out these details.
For now, I can tell you that payments for paid subscribers are postponed until I can regularly provide content that is worthy of that level of dedication and support. When the time comes that I believe paid subscriptions can continue and I can offer content specifically for this group, I will let you know in advance. My first goal is to find a rhythm again with free content, including newsletters. So…stay tuned!
CHILDREN’S HEALTHCARE OF ATLANTA SCOTTISH RITE HOLIDAY SHOP DONATIONS: IN MEMORY OF MARSAILI
We have chosen to honor Marsaili’s memory this holiday season by setting up a gift donation to the hospital where Marsaili frequently stayed. In December 2023, we spent most of the month in the hospital, and we weren’t sure if we would make it home for Christmas. Just before we were discharged home, the nurses led Josh down to the hospital’s holiday shop to grab some gifts for Liam and Marsaili. When he pulled out his card to pay for the gifts, the volunteers informed him that all of the gifts had been donated.
Each year, Children’s Healthcare of Atlanta Scottish Rite Hospital opens a Holiday Shop on campus for families to select gifts for their children. The gifts available each year are entirely dependent on donations from supporting organizations and families. As we look ahead to this holiday season, we feel called to honor Marsaili’s memory by bringing joy to families who find themselves where we once were.
The generosity of the community doesn’t just impact patients during the holiday season. Gifts donated during this time continue to impact patients and families throughout the year, serving as a much needed comfort and distraction during challenging times.
A FEW THINGS TO NOTE:
An Amazon gift list has been created and can be accessed below. This list has been carefully curated based on specific requests from the hospital.
THE VERY LAST DAY FOR GIFT PURCHASES WILL BE MONDAY, DECEMBER 2ND AT 11:59PM. After this time, the gift list will close.
When you are purchasing, make absolutely certain that the shipping address option “Hillary Ramos’ Gift Registry Address” is selected so that it ships to the correct place and not to your personal address. All gifts donated will be collected, organized, packaged, and then delivered directly to Children’s Healthcare of Atlanta Scottish Rite Hospital on December 11, 2024.
This is an independent initiative. While we’ve worked closely with the hospital, this collection is not part of an official hospital program.
You can share the link to the list below with family and friends. We have a lofty goal of donating 1,000 gifts, so we need your help! Help us get the word out and spread some joy in memory of our girl.
MUSIC & MEMORY VERSES
I’ve had people ask me before if there are specific songs that I listen to for worship and encouragement, especially during this period of grief. For a while, I did not. However, I’ve recently begun to slowly build a list of songs that we love to listen to together as a family. Liam asks for them every time we are in the car. I’ll share this one with all of you this week in hopes that it brings you encouragement. It’s actually one that was played at Marsaili’s Celebration of Life service.
Battle Belongs by Phil Wickham
Favorite Verse:
“When all I see are the ashes, You see the beauty!
Thank You, God!
When all I see is the cross, God, You see the empty tomb.”
Psalm 121:1-2
“I lift up my eyes to the mountains—where does my help come from? My help comes from the Lord, the Maker of heaven and earth.”
As I step back into this space, I carry (as has been true on many occasions) both the weight of loss and the light of joy and hope in a new season. Your continued support and patience mean the world to me, and I can’t wait to share more of our journey with you - both the struggles and the celebrations.
In the coming months, we will be navigating many new chapters as a family. I’ll be here, writing when I can about all of it, and I hope you’ll join me on this path.
Thank you, as always, for your prayers, encouragement, and love.
Love,
Hillary