Recently I started a private support group for mamas who receive a prenatal diagnosis. In putting together resources for them, such as a place they can access medical research for themselves and their health care providers (who often don't have personal experience with the kinds of diagnoses the parents receive for their child), I realized there was absolutely nothing out there for those mamas in the way of a pregnancy journal. All the ones I found were happy, happy, joy, joy. Having been through a pregnancy fraught with anxiety and fear over whether we would meet my daughter alive or not, I decided it was time to create a special journal that would address the different aspects of this unique situation. While some aspects allow mamas to focus on the joy of a new life and the positive aspects, other sections help them work through difficult topics such as what in the world to do about a baby shower and how to formulate a birth plan.
The journal may be purchased here and would make a wonderful gift for anyone you know who is devastated to receive a prenatal diagnosis. I would love to get it in the hands of genetic counselors, palliative care teams, pregnancy resource centers, and other professionals who work with women who are carrying fragile babies. If this is you, or if you know of someone who ministers in this capacity, would you reach out? We would be happy to discuss options for bulk ordering to make this resource accessible to others!
- Journaling pages plus prompts to help you remember details
- Space to record your baby's diagnosis and unique needs
- Appointment trackers
- Ultrasound photo keeper
- Ideas for a baby shower
- "Letters to My Baby" section
- Birth Plan Brainstorming
- Hospital Checklist
- And much more.
It's been just over 4 years, but I well remember that difficult season of life: getting a phone call from my doctor and learning the baby girl growing inside me had what was considered a life-threatening diagnosis (Edwards Syndrome, or Trisomy 18). The following days and weeks were a living nightmare. My husband and I prepared for our baby's burial, and I was pretty much a weepy, emotional mess. Thank GOD for online connections! After about a month or so of feeling overwhelmed by negative information, we were introduced to online resources that actually showed REAL families living with children who had the same diagnosis. My eyes were opened to the positive stories of hope, and I began to turn my heart toward the idea of a different outcome than I had been led to believe initially.
Of course, this also meant I had a whole different set of questions to address! The learning curve was steep, but as I look back, I can see how incredibly far we have come. Now our Verity is almost 4 years old, and our family absolutely adores her. I just cannot imagine life without her! But I will confess I was terrified to be the mother of a special needs child, especially when I already felt overwhelmed being the mother of 8 other children.
From the moment of our diagnosis to the beautiful experience of Verity's delivery, my pregnancy was an emotional roller coaster. And beyond delivery came more learning. I won't say it's an easy road, but I wouldn't have it any other way. And because of the JOY and HOPE we have as a family (which ultimately comes from Jesus), I am now in a place where I am able to offer a bit of wisdom and experience as a resource for moms who have a prenatal diagnosis and are drowning in a sea of emotions.
Three years ago our family had the opportunity to do one of the Advent readings in church. To be honest, I have no idea what we read or even which week of Advent it was. What I DO remember is what happened before church. We arrived in time to send our children to Sunday school and youth group, but I didn't feel like being with other people. Ted and I sat in a fog next to Verity's stroller in the gymnasium where the church service would be held the next hour. It had been another rough night, like just about every night was in 2017. Just as our interim pastor and his wife came to where we were seated to greet us, Verity began retching. Her vomiting spells happened about 6-8 times a day. Trisomy 18 kiddos tend to have GI issues, but this was getting out of hand; Verity was losing weight, and at 12 pounds and almost 10 months of age, she didn't have much to lose.
The unexpected scene took the pastor's wife by surprise: copious amounts of liquid were coming out of Verity's mouth and nose as Ted frantically whipped out the suction machine while I mopped up the mess. (Yes, we traveled with a suction machine in those days. We lived in terror of Verity aspirating because of how frequently she vomited.)
When things were calm again, Gretchen asked if things like that happened often. I burst into tears. I couldn't help it. I was so tired, so weary, and somehow just so angry that people didn't know what our life was really like. I knew it wasn't Gretchen's fault that she didn't know, so I tried to describe life with Verity. She hardly ever slept, which meant we hardly ever slept. I couldn't leave her side for fear she would vomit and choke. The terror we lived with around the clock was ever present. I still remember the compassionate look on the faces of this couple, whose ministry we had sat under for several months by this point but who truly had no idea what our family was going through.
Half an hour later we stood in front of the church lighting a candle and reading words I can't remember. I felt like such a hypocrite, creating a picture of what surely looked from the outside like a perfectly lovely family. Two parents, nine children, the tiniest of whom was living a very precarious life. Little did people know what was happening on the inside: the deadness of my heart, the difficulties of my marriage, the near-destruction of my mental and emotional health. I didn't intend to put on a show; I would have gladly shared our struggles with others. And I think I tried. It's not that people didn't care or didn't ask, but somehow there just wasn't time or energy to sit down and lay it all out.
Fast forward three years...our church now has a new full-time pastor, and our family was asked to do the reading for the second Sunday of Advent 2020. We relit the first candle, Hope, reminding the congregation (and ourselves) of the hope we have in Christ. Next, we lit the second candle, Peace, testifying to the fact that Christ came to bring God's peace to us.
As I stood holding Verity on my hip while my sons and husband read their passages, I suddenly remembered that exhausting Sunday morning 3 years ago. We have come so far. Not only is Verity doing so much better health-wise, but our family is so much stronger for having gone through some really dark times and seeing the light of Hope and Peace shine in the midst of it all. When Verity squealed during the prayer, I couldn't help but feel the joy surge in my heart.
Hope. Peace. Joy. And LOVE--so much love. They were there all along, even when we couldn't feel their presence.
If you are experiencing a season of darkness, I pray you find the light of true Hope and Peace.
Father, we thank you for revealing yourself through Jesus, and we praise you for the greatness of your love. Help us to know your peace in our lives. When life does not go as planned, may we know and understand that you are with us and we can have peace and rest in your ways. May we also share your peace with others and live our lives more like Christ every day. In His name we pray, amen.
If you're looking for support for your physical, mental, emotional, spiritual, and/or financial health, check out our free community Fit for Life!
Do you know someone who has received a devastating prenatal diagnosis? Please spread the word about a new support group, From Diagnosis to Delivery.
Has it really only been a few weeks since COVID-19 awareness, social distancing, and online schooling became such an integral part of everyday life?! It feels like a lifetime.
Our homeschooling family may have had an easier time transitioning since most of us were already learning from home. But we've experienced our share of changes...
- Hubby is working from home.
- College daughter and dual-enrolled son are finishing the semester from home.
- We do church via livestream and AWANA and youth group via Zoom.
- We are stretching our groceries (rice and beans, anyone?) and counting toilet paper rolls.
I could go on.
As a rational person, I am appalled by the insanity of empty shelves in our local stores. I feel chagrin at our nation's economic systems screeching to a crawl, if not a halt. And I'm exasperated at the nonstop partisan bickering.
At the same time, as the mother of a special-needs child with a compromised immune system, I feel dismayed by what almost seems inevitable: at some point, say some experts, we will likely all catch this virus. And what will that mean for vulnerable people like my daughter? Will our nation experience anything like the overwhelmed Italian system, where people are dying by the hundreds every day for lack of resources? Or have we flattened the curve enough, giving us time to beef up desperately needed supplies?
I am alternatingly amused and angered by various articles, videos, and memes that cross my radar these days. And the nervous conversations in my Trisomy circles have me on edge as well. (It doesn't help that we've suffered some difficult losses of Trisomy kiddos in recent days, unrelated to COVID-19, but still...)
I've decided...I need some social distancing from social media. (And yes...I recognize the irony of writing this on an online blog!)
- I'm skipping past almost every article shared in my feed...
- Better yet, I'm putting away my phone for longer and longer stints.
- Ultimately, my goal is to get past the addiction (yes, addiction) of being attached to my phone.
- I've stopped listening to my favorite podcasts, because as much as I enjoy the snarky commentary, I'm just plain weary of over-analysis of a topic I don't think anyone truly understands.
In our home, we will continue our proactive measures to support all aspects of our health, which include vitamins and supplements, our healthy and yummy "red juice," probiotics, and essential oils. We also proactively use essential oils and oil blends for mental and emotional support. And of course we are using effective, non-toxic household cleaning agents to keep out the yuck.
What about you? How are you handling the "online overwhelm?"