This is the story of a family life turned upside down by the serious and unexpected illness of a newborn baby. A story of self-sacrifice, courage and resilience.
Maryline was a cheerful young woman who loved to enjoy life. She was a graphic designer in the same company as Dominique, PépinScan, in Old Montreal. They were work colleagues and had a great bond. Dominique already had three children at the time. After two years of collaboration at work and knowing laughs, Dominique separates. Fate brought them closer to form a blended family. "We were living the big life," sneers Maryline! They loved city life! (Good restaurants, good wines, theatre, festivals, travel…) He had found the balance between blended family life and married life. After 6 months of union, Dominique made her marriage proposal and Maryline answered YES without hesitation. Dominique is a very good dad and an attentive lover, says Marilyne. After a year of union, Marilyne and Dominique are newlyweds.
Their love story gave way to a new chapter: the birth of Émile, after two years of union. They loved working togetherbut Maryline quit her job to open a daycare service at home to stay close to her little boy. Life couldn't be more beautiful and simpler! They loved going on family adventures and having romantic dinners when the children were in bed. Having taught dance in Marilyne's daycare, I can say that the children were surrounded by love! Maryline adapted to all situations with a laugh. They managed to have a good balance between family, work, couple. According to Maryline with hindsight "life was simple and filled with happiness".
Maryline entered the egg donation process to help a friend of hers. She wanted her girlfriend to be able to experience the immense happiness of being a mother too. Egg donation requires a lot of appointments, two to three injections a day, heartaches and so on. Unfortunately, the procedure didn't work, her friend didn't get pregnant.
A surprise pregnancy
The next cycle and to her great surprise, Marilyne learns that she is pregnant. She is very happy, because she always wanted a big family, but finds the situation delicate since her friend is still not pregnant. Believing in fate, the couple set off on the adventure of a final pregnancy when Émile was 18 months old.
Pregnancy, ultrasounds, exams, everything is going great. The baby is perfectly he althy in Maryline's belly and she's a little Choune, girl! Children imaginedancing in the living room with their little sister, consoling her when she has heartbreak… Maryline is living her pregnancy in perfect happiness and taking full advantage of it. Dylane is already alive in their head!
The birth of Dylane
On January 5, 2012, Maryline was provoked. She took the epidural and without any pain Dylane came into the world at 5.7 lbs. She wasn't drinking well so they had to stay in the hospital for a few days. After a few days, the pediatrician signed the discharge saying that Dylane was in perfect he alth. With hearts filled with joy, the little family returns home.
The CSSS nurse comes to the house a few times to make sure that the latch is going well and that Choune is gaining weight.
A routine checkup…
Dylane is three weeks old and dad is still on paternity leave when the family goes to see Dr Bibi, the pediatrician, for Émile's annual check-up and Dylane's first check-up. After measuring her head, taking her weight, looking at her height, Dr. Bibi sits down looking bewildered. He announces to the family that they must go directly to Ste-Justine to ask for a genetic investigation since Dylane has a heart murmur, jaundice and a smaller head circumference than normal. “While he was talking to us, I heard his voice as if my head was in water. My husband and I were totally out of our comfort zone since we really hadn't expected things to turn out. Dominique and I did not understand what was happeningpassed. We thought he hadn't had a good morning, that he was exaggerating. We were trying to play down the situation, we were living in total denial. We were trying to find excuses to explain the situation,” says Maryline. And it is on this day, without having been prepared in any way and without having given warning signs, that the new adventure that will change their lives forever begins!
“We were bombarded with specialists and in the waiting periods, I found it so unfortunate to see mothers on their computer. I judged these mothers without understanding that a sick child constantly asks to fill out paperwork, to organize fundraisers… What I didn't realize was that it would soon become my reality too,” explains Marilyne..
The diagnosis no one expected
After several tests and hospitalization, they learn that Dylane has an orphan disease. Mom lives in the hospital while dad works during the day, takes care of Émile in the evening and goes to the hospital to find his wife to be able to comfort and support Maryline and Dylane. "When you're a mom, you don't think you're going to see your little girl intubated, with venous inputs, operations, force-feeding… We no longer had a family life or a couple's life since we were still separated or at Dylane's bedside. We must not forget that dads cannot sleep in the hospital and that we have children who ask for comfort and love at home. They don'tdon't understand why life is so upside down. This is not the story they had in mind… Why?
“I was a torn mom, I missed my son and my boyfriend's children and I felt guilty. I had to stay by Dylane's bedside to breastfeed and ensure that she received the best care. But when I think about it, I'm extremely happy that we learned about Dylane's condition little by little, because if I had had the portrait of my new life all of a sudden… I don't think I would have was able to cope with it. Strength is found day by day. The word happiness changes its meaning and becomes much deeper. As Dylane's condition guides our day, we live minute by minute, one at a time. I always wondered if it was the pregnancy following the close egg donation that caused Dylane's orphan disease…”
The reality of a life changed forever
“Today, Dylane is two and a half years old. My husband hasn't taken a vacation for 2 years, because we need his vacation pay in addition to his salary,” says Maryline with emotion. “We always have financial stress: with the money we have, what will we be able to pay: hydro or ambulance costs? My husband and I never manage the expenses, because we barely manage Dominique's salary, who works like crazy, and the fundraisers. And yet, if it weren't for the money, I would so love to have my husband with us on the weekends, so that he could take a vacation, that wecan finally go to the park with the family…. Dominique, against my wishes, has become a provider dad who works overtime, because when he arrives at home, he becomes a nurse! Our GREAT joy is when we have all had a good night and the next day Dominique and I can have coffee, snuggled up in each other's arms. For a moment, I close my eyes and travel in a perfect sense of ecstasy! We are accomplices and instead of distancing ourselves, the trials bring us closer, because I could not live through all these worries and this fatigue alone. Dominique is my complement! »
My meeting with Maryline upset me, because I find it sad that these families, in addition to having the continual stress of their child's survival, the upheaval of their family balance, must also endure enormous stress financial. Like what, we should never take our family life for granted!
Maryline is now a stay-at-home mom who is a 24 hour caregiver and organizer of fundraising events, as she is always looking for money for treatments, ambulance costs, home equipment, etc. She is also a nurse, because she takes care of force-feeding, care and everything a very sick child needs. She is also a mother, because she has other children to take care of and so on! Despite the change of life, Maryline is a woman who keeps smiling and loves life! She misses romantic outings,adventures decided on the spur of the moment, walks without having to send all the medical equipment, to have money in your bank account to treat your children to pleasure, to be able to buy and sip a glass of wine, to sleep a deep sleep. Now and for a long time, she lives her life through that of Dylane.
If you are lucky enough to be able to hold the guides of your life, appreciate it by pushing your limits without trying hard, give yourself challenges, take the time to date your spouse without feeling guilty, organize girls' dinners, because you never know if life will take away this freedom.
I would like to invite you to adopt a new behavior towards these caregiver mothers. Take the time to look them in the eye and ask them how they are doing, wish them a nice day, give them a nice smile, tell them how strong and beautiful you find them…because it's this short discussion, rare in their lives, which will allow them to put on their WOMAN hats for a few seconds.
It is with a heart filled with admiration for Maryline and Dominique that I wrote this testimony, because too often parents are sidelined to leave room for illness. They also need to be valued!
I thank life for having five he althy children, for allowing me to be a woman, for allowing me the right to manage my time, to have a life as a couple and the freedom to be in control about my future.
X-MOMS
Following my exchange with Maryline, we launched the X-Mom project to allow these parents to be a couple. This is my small contribution!
X-Moms is a project of the Prenatal and Young Families Center of Vaudreuil which consists of offering respite to Super-Moms in the region who devote their lives to caring for their seriously ill or severely handicapped children. This project is based on mutual aid. While X-Moms go out, once a month, other X-Moms are at the Center to look after the X-Kids and their siblings.
Time to breathe and escape to better get back in shape to administer the acute care of their child. Want to help them decompress? Do you have any contact with a restaurant or other treat in the area who could offer gift cards to X-Moms?
Want to donate for this project? Your involvement is important since these families are often exhausted both financially and emotionally. On behalf of these families… Thank you!
I invite you to consult these links to learn about Maryline's daily life.
- To support Maryline, read her blog you will find a button to donate. You will also see lots of photos and learn more about the daily life of this big-hearted family.
- Watch the video of Dylane's eventful life.
- Parent all the way
- VAT - Report by JE on Dylane,Maryline and their family
