There are so many valuable life lessons I have learned in my 8.5 years as a mother. Not only have I learned more than I ever imagined, I believe the discoveries are unique to each mother. For instance, I have realized and been touched by various events that may not impact some mothers as they do for others. This is what I believe to be a special component of motherhood.
On a side note, if I had known what I may have experienced when becoming a parent prior to motherhood, I may not have ever become a mother! My life as a mother has been very eventful; both full of joys and many hardships – some of which many mothers never experience. However, some of these difficult times, such as the diagnosis and journey with our son’s complex heart condition have made me a better and stronger mother and person. I have since realized more so now than ever, what is important in life – what is needed and what can be lived without. Less is truly more.
Motherhood, has blessed me in more ways than I could ever describe. While the times have not always been good; they have led to where I am today and I am proud to have two loving, caring, courageous, and energetic boys who remind me what life is all about.
By Jen DeBouver
Growing up I was not one of those girls that dreamed of being a mother. I actually thought I would never have a child. When I met my husband neither of us wanted kids. 7 years later we were pregnant with our first daughter Olivia. I was super excited yet nervous about what kind of mom I would be. Kids were something that scared me. I didn’t even know how to talk to kids. But that dream ended before it ever began. Olivia was stillborn 7 months into the pregnancy. I was done! I blamed myself for her loss. What did I do as her mother to cause this?
Two months after losing her, I was pregnant again. Ok, a new shot at this motherhood thing while still grieving the loss of my first child. Everything was going great and then we learned our son who we named Asher, had congenital heart defects and that without a fetal intervention, wouldn’t make it to birth.
When Asher was born, I couldn’t hold him. The only thing I could do was sit at his bedside and hold his tiny hand. For 6 weeks I had to be a mom to a baby that I could never hold. I had no idea how to be a mom when I felt I couldn’t really connect with him. I was afraid of singing or reading to him because I didn’t want anyone to hear me and we were never alone. After losing Asher I felt like I failed him in a lot of ways. The guilt stuck with me for many years for both him and Olivia.
After losing them I became the best mom I could be for them even though they were no longer here. I created things in memory of them and basically everything I did was for them. But that wasn’t enough! I still longed to be a Mom to a baby here with us.
Four years after losing Asher, we welcomed our baby girl Nina. Due to developing severe pre-eclampsia, she was 6 ½ weeks early but amazing in every way. I got to hold her the minute she was born and it was the most amazing thing ever. She spent 4 weeks in the NICU which brought a lot of PTSD from Asher being in the hospital that I didn’t know I had.
When she got to come home, my husband told me “Motherhood suits you well.” It was the most amazing compliment I have ever gotten. I was once scared to death of being a mother and now it actually suited me. This little girl became my everything and brought joy I never even knew existed. Sometimes I sit and watch her in amazement that this road to motherhood brought me here, to her, that she gets to be mine.
There are still days where I wonder if I am being enough as her mother but I think as mothers we all question this. There are days where us mothers are so exhausted that we just can’t wait till bedtime but you will usually find us sneaking into their rooms just to get one last look at them before we go to sleep.
Every morning I can’t wait to walk into her room and say Good Morning to her and at the end of a long workday, I can’t wait to have her come run to me with a giant hug, even if it means dealing with toddler fits because in the mix of those is the sweetness and cuteness that makes my heart fill with joy.
I feel extremely grateful to have been given the opportunity to be a mother to all 3 of my babies. All of my kids have taught me to be a better person and have made me a better person. I still have so much left to learn and so much left to teach Nina. Even though my daughter is only 22 months old, I am so proud of her. I hope that she looks back one day and thinks I am the best mom she could ever have.
By Susan Swanson DeBouver
I’ve known no greater joy nor greater heartache than being a mother and a grandmother. Then there’s all the stuff in between, like regular life stuff that is neither joyful nor heartbreaking. Being a mother covers it ALL. There’s someplace inside of us, inside our hearts, that drives us to do all we do for our children. It’s the same place that also defies logic. Prior to having children or grandchildren, I know I said something along the lines of “….my kid will never do that.” Now, well into the motherhood thing, all I can say in response to that naive statement is: Bahahahahahaha, right! The shock value from motherhood could be considered on the same level as shock therapy. It’s a wild ride, but one I’m glad I took. My kids will always be my babies….they may not look at it that way; however, moms do. We will always be mom and proud of it. When my kids have joy, I feel joy, when they hurt, I hurt.
It’s quite a learning experience. That deep of a connection is magical and powerful and something to be very grateful for. The more you age, the more you hopefully learn. You learn not to sweat the small stuff so much and you learn to take moments just to stare at your child (and not in total disbelief, although that does happen!) just to take in their beauty and magnificence. You take the time to be in awe, even if it’s for a fleeting moment. Everyone always says they grow up so fast, and it’s true. When they do grow up, there’s a good chance you’ll become a grandparent, and THIS is where the REAL fun begins!!! Pure Love! Pure Joy! Pure Magic! Pure Fun!
There’s so much more I could write; however, I’ve been sleep deprived since 1981, the year I had my first child. I need some sleep.
Susan Swanson DeBouver,
Proud parent to:
Proud “Gamma” to:
Nina Delilah DeBouver
Olivia Madilynn DeBouver
Asher James DeBouver
By Carol Raimondi
For many, the decision to become a mother is huge step in life. When you are born with complex congenital heart defects, that decision becomes much more complicated and involves significant planning to ensure you and your baby will survive. Even with the best care, the risks are present and never far from your mind.
When my husband and I decided we wanted a family, we knew it would not be easy. In 1998, I had already undergone 3 open heart surgeries, numerous pacemaker operations and had several small strokes. With my cardiologists approval, I was able to go forward with our dream. After initially struggling with fertility issues, I became pregnant just before New Years Eve. Immediately, things changed. Medications I once took had to be stopped, or changed. Part of this was giving myself a shot 3 times a day. With each injection, I focused on the goal, becoming a mother.
My sister in law was also pregnant at the time with her first child, due just 6 weeks before me. Our pregnancies were as opposite as can be. Sure, I had all the “normal” symptoms, like morning sickness,cravings and feeling that amazing flutter for the first time, but that was where the similarities ended. I also dealt with small strokes at 6 and 24 weeks along. I dealt with my pacemaker lead malfunctioning due to my growing belly, which required using much higher energy to keep my heart beating fast enough. I had a hematoma in my uterus that threatened both of our lives and put me on bedrest for a total of 14 weeks. I saw doctors on a weekly basis. At 30 weeks, the hematoma, (which would later be described as the size of a football) caused my water to break. Despite the medical team wanting to try and postpone delivery as long as possible, 4 days later, my heart and my childs both proved that it was time for us to meet. Interestingly, the preference was for me to go through labor, which prepares the heart for the large shift of fluid that takes place after delivery. Historically, my body rarely does things as expected, and this was no exception. Nearly 13 hours after inducing labor, I had made very little progress, so the decision was made to go ahead with a cesarean section.
Shortly after 10am, on July 2nd, Isabella Christine made her first appearance into the world. At 10 weeks premature, weighing exactly 3lbs, she was perfectly healthy in every way. My cardiologist checked to be sure her heart had taken after her father, which we were blessed it had. Due to her size, she remained in the hospital for nearly a month, as she required tube feedings. I did not have any issues from the delivery, but was still monitored for several days before going home. Those days were filled with so many emotions. Again, not having the “normal”, where you were able bring your baby home with you. Nothing in my life had been typical up to then, so I just accepted that as I do with everything else I face, it as MY normal.
Isabella is truly my greatest miracle. There were so many times when my husband and I wondered if we would be able to have our own child. There were people who told me I was dumb to risk carrying a child. Less than a year and a half after having Bella, I became pregnant very unexpectedly. Sadly, at 12 weeks, I had a miscarriage. Reflecting on that, my health was already struggling early in the pregnancy. We had not gone through the meticulous planning as we had the first time. I can only wonder if my health would have continued to deteriorate had my pregnancy continued.
The bond that Isabella and I share is deep. Even though she is healthy, I feel she shares a unique perspective with me. Unlike my parents and husband, who had a “normal” life, free of the congenital heart defect world and all that comes with it, until I came into their lives, her and I have only known that world since day 1. From as early as she can remember, she was visiting me in the hospital. She was 7 when I had my 4th open heart surgery. She is used to me needing to rest and take medicine. She can sense when I don’t feel well before I even say anything. Do I wish she didn’t need to live with a chronically ill parent and the worry and fears that go along with it? Absolutely not. This is her normal though. It has shaped the young woman she has become. She is compassionate and kind, and has learned a lot about perseverance and adversity. Is it possible she would have been that person regardless of my health? Of course. Either way, I am as proud as ever of the person she is, and can not look at her without realizing what a blessing and true miracle she is.
By Tori Smith
There was a time when I had all these ideas of what being a mom would look like. The
perfect husband and I would plan each pregnancy, each child. I would give birth without
complications to healthy, perfect babies who would nurse without issues and who wouldn't have
colic and who would be happy, chubby little people. I would feel complete and whole and love
every second of being a mother.
Fast forward to when I was 16 and realized I would likely be the one adopting my niece’s
daughter. Every choice I made from that moment on had her best interest at heart. I would go to
a community college and then get a job at a bank so I could buy a house and adopt her when I
was 25 and she was 12. I still held out hope that I would meet a man who would treat us both
well and we would have those perfectly healthy, planned children. But in the meantime I could
foster, after all, we had this house with extra room.
Then my first son’s came along and before I knew it I was 32 and a mom to 6; one daughter
and five young sons. At this point I began to realize that being a mom meant so much more then
giving birth and nursing a baby who shared my DNA. I had spent many nights rocking babies
and toddlers who had come from less then ideal circumstances. Children who were brought to
life by people who could no longer care for them, some made this choice and some had this
choice made for them. But all of my children started out life with trauma and loss.
Then came diagnosis's of Autism and congenital heart defects. ADHD. Anxiety so severe
that it made school and learning beyond hard. Suddenly I became fluent in IEP’s and therapy
and specialists and medications. All a balancing act that require much attention and constant
learning for me to be sure each child’s rights were being respected and laws were being
followed. And as though that wasn't enough, my youngest son died suddenly at 13 months old
from undiagnosed congenital heart defects. If I didn't feel like a fraud before, I surely did after he
died. The constant questioning and wondering if I was good enough to be their mom.
Its been 6 years since he died. 6 years of the lowest lows and some pretty amazing highs as
well. And at the end of the day I have to say, being a mom means I love these little people so
much that I have chosen to be as healthy as I can be so I can be around for a long time to
support and love them through. Being a mom means I often question if I am enough for them.
Being a mom means that my life will never again belong solely to me. Everything I do is with
them in mind. I fall often but I get up and keep moving forward, because that is what mom’s do.
Below are the bios of each amazing mom that participated in this project.
Jen is a mom to two angels and one rainbow baby. She loves spending time with her daughter, husband and two dogs. Volunteering has become a great passion for her since losing her first two children. To her it is a way to keep them with her.
Tori Smith is a mom and an advocate. She believes everyone has a story and when we share those stories, we begin to heal and become stronger.
Carol Raimondi is an adult CHD patient, a mom and a former nurse, living with Congenitally Corrected Transposition of the Great Arteries. She currently is the President of Pediatric Congenital Heart Association of IL(PCHA-IL).
Susan Swanson DeBouver
Susan is a mom, grandmother, and busy owner of Pilates Plus of Schaumburg. She is a self-professed, spirit junkie and combines her fitness/anatomy education with her spiritual education.
Michelle Williams is the mother of three children: Sadie, Sawyer and Landon. After Sawyer's death in 2010 she formed Sawyer's Heart Project - a non-profit organization that supports bereaved families in the Chicagoland area.
Sarah has a passion for the non-profit sector, working with volunteers, writing, and educating. She holds a Doctor of Education in Educational Leadership and works in non-profit management.
In 2016, she partnered with two colleagues to form a non-profit, where she serves as the President and CEO of the organization, which helps families experiencing medical conditions.
She and her husband have two sons and enjoy spending time together outside doing many activities like riding horses, running, fishing, and gardening.