Theme: Family Planning
After stepping inside, I lean against the cold, metal wall in the back of the elevator hoping I am the only passenger on this three floor ride up. When the doors close, I take a deep breath and prepare to transcend to the third floor where my psychologist’s office is located.
I have always been thankful for this one hour opportunity to speak freely to someone who seems to know the right way to respond and challenge me. I am especially thankful that she specializes in families similar to mine who have children with life threatening illnesses.
When I find her waiting for me at the front desk with her hands wrapped around her warm mug of coffee and her equally warm smile, I feel as if I am meeting up with an old friend. We make our way to her office, where I find myself a seat on her gray couch. There’s a loose button where I always sit making me assume this is the popular spot in her very chic office. She takes her normal seat which is a rolling leather chair beside her desk.
Typically, we start with
“How are things?”
“How are the kids?”
“How’s Chloe?”
Today, I felt nervous because it would be the first time I ever put this particular thought that had been on my mind out into the universe for someone to hear.
With all on my plate, caring for four children, one with an extremely rare, complex medical condition, I was scared to even say what I was thinking.
“I think I want to add to my family. I want to have another baby.”
I pause for a moment as I can tell she is processing what I just said.
I don’t think you are supposed to say this in a psychology office but I blurt out what I am feeling, “Am I Crazy?”
Of course she responds how I anticipated, and assures me I am not crazy. We walk through the reasons and my reservations about this desire that has been taking up much of my mental space for weeks now. We begin to work through the list of my whys and why nots. It was important to me to feel I am making the best decision not only for myself, but for my family, and especially Chloe.
I struggled most with the fact our family has had so much support over the last four years of Chloe’s diagnosis like fundraisers, donations, prayers, and meal trains. I worried what people would think if they had helped in some capacity, that now here I am choosing to add to our family. Will I be judged for wanting to add a baby when I have been very open about how difficult this medical journey has been? I was already mentally preparing myself for comments like, “Your plate is already so full” or “You are burning the candle at both ends.”
It’s easy to say, “Don’t worry about what people think” but when you have been the recipient of people’s donations and a local news story, it’s nearly impossible not to worry what people will think.
My concerns continued when I thought about the unknown future of her disease. What if I have to go back and stay in the hospital for a while? We chatted about how I could bring this baby with me as I’ve seen dozens of pack and play set ups in hospital rooms and moms wearing infants while pushing IV poles connected to their other child.
One topic that always comes up in therapy for me would be my desire to return to the classroom. On one hand, I would get to stay home with a new baby and really soak it all in while on the other hand, this could prolong my return if Chloe’s health remained stable.
We spent time talking about the benefits a new child could bring to our lives. One being I felt a new life would bring our family joy and togetherness after all the hardship we’ve walked the last four years.
While I have a son, younger than Chloe who has no medical diagnoses, I remember nothing of his childhood. His birth to toddlerhood is completely wiped out of my memory by the trauma I endured fighting for his sister’s life. It breaks my heart that I can’t remember his first word, what the first food he ever ate was, or picking him up from his first year at preschool. As selfish as this sounds typing it out, I wanted fresh memories that didn’t involve central lines, MRI’s, syringes, and dozens of medications even though I know this isn’t promised with a new baby. I wanted a way to make new memories with new milestones that I could keep forever.
But most of all, I wanted to give Chloe a new sense of purpose. We spent more nights than I could count lapping the hallways of the hospital. Her favorite thing to do was always to walk extra slowly past the rooms where she knew babies or toddlers were. She would interact by playing peekaboo, waving, or complimenting them on their plushy they’d embrace while passing us on their wagon rides. Children have always lifted Chloe’s spirits and her light shines the brightest around little ones.
My therapist’s response at the end of our session was “Emily, I think it checks a lot of boxes for you and I can understand why you have this desire, and no you aren’t crazy.” I didn’t need her stamp of approval but it felt good for someone to validate that it’s okay for me to feel the way I did about expanding our family. I could exhale this time fully knowing that someone out there knew what I was thinking.
Stepping back in the elevator, I felt a weight lifted. Although my worries about what this addition could mean for my family and what others may think about it were still there, I felt confident that it was our decision to make.
This awful disease has stolen so much from us, our daughter’s joy, her education, her health, my memories, my career, and holidays. I couldn’t bear for it to steal one more thing from our family – a chance at adding a new child.
As I type this blog, a new baby girl, who we will meet in October, wiggles around in my belly and our family couldn’t be more excited. While it’s been a unique experience this time – having to hold our breath at each ultrasound expecting the worst because of our trauma – she’s already brought so much positive to our lives. Chloe excitedly tracks the pregnancy and has meticulously folded each little outfit into the drawers as we get them.
I anticipate there will be moments where I think to myself “I was crazy!” like when I am pushing medications through a G-tube while holding a crying newborn. But the moments of witnessing her first smile, watching Chloe holding her sister for the first time, and seeing her first steps, will outweigh it all.
Over the past year, Emily has brought her wisdom as a parent to her role as a Parent Champion for Courageous Parents Network. We could not be more thrilled for her and her family as they welcome a new baby girl! Learn more about Emily here.
Theme: Family Planning
Theme: Family Planning
A genetic counselor explains newborn screening for genetic conditions and how she works with families when the test is positive.
Theme: Family Planning
A genetic counselor discusses how she works with the supportive care team or palliative care team at her hospital to make sure families feel supported not only down the road but along the journey as well.
Theme: Family Planning
For families with children with inherited (genetic), life-threatening conditions, the words “try again” do not really do justice to the enormity of the decision before them. Deciding to have another child can feel like a tenuous negotiation between desires and options, one that may include complex feelings, religious beliefs and medical considerations.
So how do you find your way and come to the decision that is best for your family?
Join CPN and Mary-Frances Garber, a certified genetic counselor to learn about some of the reproductive options available and explore the emotional considerations when deciding if having another child is right for your family.
Theme: Family Planning
The parents of a son who was diagnosed with an extremely rare genetic disease discuss having a second child using IVF. They talk about the process of being approved through insurance and the testing they had done on the embryos to ensure that their next child wouldn’t have the same mutation.
Theme: Family Planning
The parents of two sons, the first of whom was diagnosed with an extremely rare genetic condition, discuss what it was like when their second son was born. They talk about the tension between their grief and their joy and the ways that their youngest son has helped them through their bereavement.
Theme: Family Planning
The parents of two sons, the first of whom was diagnosed with a very rare genetic disease, discuss naming both their boys and how they honored their first son Quinlan by naming their second son, August after the month Quinlan was born.
Theme: Family Planning
The parents of four children, one of whom passed away just shy of his third birthday from Microcephaly Capillary Malformation Syndrome, talk about having kids after their eldest son passed. They talk about the pressures and blessings of adopting a child and finding out shortly after that they were pregnant with twins.
Theme: Family Planning
Theme: Family Planning
The mother of two sons talks about how even though her eldest son, Andy’s condition was a spontaneous mutation, she couldn’t find comfort in the odds that it wouldn’t happen again because they had already been there once.
Theme: Family Planning
Losing a child isn’t just losing a child. It is also losing your dreams, your current existence, and your future. It is adding a million additional worries to your life – more than you ever thought imaginable. It changes you forever.
After Quinlan died, my husband and I knew we wanted to bring a little brother or sister into the world. And we knew that we were going to do everything we could to ensure this new child would not suffer the same way Quinlan did for his short two years, five months, and one day. This meant a journey into the world of IVF with genetic testing.
We knew we wanted to do everything in our control to ensure the BRAT1 mutation was not passed on to a second child, but the journey turned out to be harder than we expected. We had no problem getting pregnant with Quinlan. Married in September, pregnant in December, baby in August. Without the BRAT1 mutation we would not have ever known the world of IVF. We knew a little about IVF and genetic testing but we quickly learned the whole long process. For us it involved an egg retrieval, fertilizing the retrieved eggs, waiting five days the fertilized embryos to reach the blastocyst stage so there would be enough cells to be able to extract for genetic testing, then testing the embryos for the BRAT1 mutation as well as any chromosome abnormalities, praying for healthy embryos, transferring a healthy embryo, then praying for a healthy pregnancy. No big deal, right?
I’m not sure if I was being naïve or just keen to the fact that Quinlan was watching over us throughout our IVF journey, but I can’t remember ever feeling like the process wouldn’t work. And yet at the same time, I was living in fear every day. It is such an uncontrollable process, one that felt so similar to the uncontrollable life we had as parents of a medically complex child. I knew I had to let my guard down, be present and aware, just as we had to do when Quinlan was alive. I had to trust that we were doing all we could and allow the doctors and nurses to take the lead. The strategy had worked in our life with Quinlan, and so it seemed natural it would work in our journey with IVF. I became really good at listening to medical professionals and doing what I had to do. With Quinlan we trusted, hoped and prayed. This faith allowed us more time than we expected with our son. Now, with hopes of a new child joining our family, I did the same. I was also comforted by the belief that Quinlan was guiding us from above.
In January 2018, one year after Quinlan died, we started the IVF process. For two weeks, I had to give myself shots daily. Ironically, my final shot was the day after the one-year anniversary of Quinlan’s death. It was a surreal feeling – working to bring a child into the world exactly a year after your first child died. The IVF process was a needed distraction from my grief; as emotional and heart wrenching it might seem, I found it oddly comforting at the same time.
Two days later, eight eggs were retrieved. Five of the eight eggs fertilized and of those five, four embryos made it to the blastocyst stage. From the four that were genetically tested, we had one healthy embryo to transfer. That one healthy embryo grew to become Quinlan’s brother, August.
Pregnancy after loss brings a whole bunch of emotions. I was beyond excited to have another child to physically touch and mother. I know I was still a mother after Quinlan died, but it tore my heart into pieces knowing that I didn’t have a diaper to change or a little hand to squeeze. I felt empty in so many ways. Being pregnant with August brought back that excitement of the prospect of motherhood but this time it also brought out a million new worries that I didn’t have while pregnant with Quinlan. The innocence was gone the second time around.
I chose to have a different doctor and deliver at a different hospital for my second pregnancy. Not that the experience I had with my first pregnancy was bad, I just knew I needed it to be different. My new doctor knew my history and was amazing throughout the entire process. When I needed reassurance she did not hesitate to offer an ultrasound or talk me through what my worries were.
Mother’s Day fell during my first trimester and I was exhausted. Not just the typical first trimester exhausted, but mentally and emotionally drained by another Mother’s Day without my son. Yet there I was growing this new human inside of me that would hopefully be here for many Mother’s Days to come. Pregnancy after loss is a mix of confusing emotions. You want to be present for your growing baby, but the loss of your first born is just as evident. I was living with grief, and yet the joy of what was to come was being felt as well. Sometimes the joy edged out the grief, and other times the grief was overbearing. This mix of emotions brought feelings of guilt. If I was grieving for my oldest child, I worried I was not allowing the excitement, hope, and joy for my unborn child to be felt enough. And if I was too excited and eager for this new baby, I worried that Quinlan wasn’t present enough in this next stage in our life. This confusing mix of emotions really came out whenever I was asked that inevitable question – “Is this your first?” I always found myself experiencing a moment of breathlessness, before answering “no” as I knew this would lead to the next question, “how old are your other children?” Revealing the death of my child was usually followed by apologies, head tilting, and sadness on their face. I would always follow it by saying something to the effect of “Thank you, and this [the pregnancy] is definitely helping to put a smile back on our face.” Again, not wanting to overshadow the excitement of our pregnancy with the grief of losing Quinlan, but trying to balance the emotions and honor the beautiful life his big brother had.
These feelings still exist even now that August is here and we do all that we can to continue to keep Quinlan as present as possible. I always want Quinlan to be included in our family of four, and at the same time, I want August to know that he is not only Quinlan’s little brother, but also the piece we were missing from our family. We have kept the same pictures hanging in our house, including one we added above August’s bed to remind him that his older brother is always watching over him. He knows Quinlan. He looks like Quinlan. He sees himself in his brother and his brother in himself, mixing up their baby pictures, calling Quinlan “August” and vice versa. It’s a constant struggle having a child after a loss, missing my first born while watching his brother grow. August is an everyday reminder of the good and pureness that both of my children have brought to our lives. Nothing about this life is normal, but if there’s anything I’ve learned it’s that normal is overrated.