Motherhood in Sickness and in Health
Shonick McFarlane was bursting at the seams with joy and excitement when she found out that she was going to be a mother. But when her beautiful daughter, Capreé Dawson, was born, her life changed completely. Capreé was diagnosed with complete AVSD (atrioventricular septal defect), dextrocardia, heterotaxy syndrome, and complete heart block, a few days after birth.
The initial stages saw her constantly hospitalised due to a weakened immune system and she required antibiotics to fight infections. She received a heart repair at Boston Children’s Hospital, which McFarlane describes as a major intervention. Her first open-heart surgery lasted nine long hours. And while living got a little easier for young Capreé, it is still necessary that she checks in with the doctor every six months to ensure that her pacemaker is in good working order, and gets her echocardiograms (echo) and electrocardiogram (EKG) done to ensure that all is well with her heart.
When Capreé gets ill, McFarlane activates her ‘Supermom mode’, administering medication in the wee hours of the morning and comforting her. Sadly, her sickness has taken a toll on McFarlane’s mental health. Two years ago, she faced serious depression that culminated into thoughts of suicide, but she had Capreé to live for. “I even had moments where I wanted to pull off a ‘John Q’ at our local hospital, just so that my daughter could get a repair. I was a real mess back then,” she admitted. Now at a better place mentally, she has accepted her daughter’s diagnosis and made the vow ‘she before me’. “I still have my days when I crawl into my cocoon and don’t want to socialise with anyone because I’m weary,” she added.
Her pride and joy doesn’t understand the scars or why there is a pacemaker in her tummy. She will tell you that she is not allowed to put electronics near it but otherwise, McFarlane shared, she doesn’t quite get it yet. Also, there are restrictions, as it relates to contact or competitive sports. She doesn’t cope well with this because, for example, sports day, is a big deal for her, except that there are limits. She doesn’t want to be restricted by the number of activities she is allowed.
But there are good days. At four years old, Capreé is excelling academically, with her teacher calling her ‘Loving Dear’. She is kind, loving, and according to her mother, will give too much of herself. “She is a heart warriors and will fight through the pain. She gives love, affection, and compassion to everyone she comes across. She is a hugger and kisser. Capreé will randomly go up to people and give them hugs and kisses. I have to keep explaining why she shouldn’t do it to strangers and trust me, but she finds a reason why it is OK to hug that stranger.”
She continues by noting that nothing misses her smart toddler, who picks up on her low spirit, despite its camouflage, and comforts her with a back rub, a hug, a kiss, a juice, or some assurance that she will take care of her. “That warms my heart. She is simply an amazing child. Capreé is definitely a drama princess and let’s not talk about that saucy behaviour she inherited.”
When she is feeling sick, McFarlane buys her gifts to cheer her up, allows her to watch her favourite cartoons (Dora, Frozen, and Paw Patrol) or takes her to the beach which is really her favourite place to be. For fun, the mother-daughter duo camp out in the living room and watch movies. They are currently hooked on this series called GO! Vive a tu manera. Admitting that the show isn’t in English, they don’t let that language barrier stop them from understanding how talented the main character Mia is and enjoying every minute of it. “We will grab Capreé’s toy mic and sing these spanish songs. It’s always fun.” They also colour, paint, and cook, “My daughter makes her own dumplings!”
Unfortunately, there is no cure and this breaks McFarlane’s heart. She still prays for a repair that allows her child to lead a normal life.
Her advice for parents suffering from a similar fate is to speak to someone and ask for help. “Find that person you can be open with and spill your beans to. Sometimes, all we need to do is let it all out. Also, there are lots of support groups out there, especially on social media. I am part of groups with parents of children with similar or the same diagnosis as my child and they have been extremely helpful and supportive. They gave me hope. I don’t always talk about how I feel or what I’m going through but I’m learning more and more that it’s important to do so. As individuals, when we are going through those motions of life, we tend to be a little aggressive and can end up treating our children in a manner they don’t deserve.”
She is currently working on the launch of The Jamisland Foundation which she says will be a support community for parents of children who have ailments that require medical intervention. “It will be that place that you can get financial assistance and even help on how to cope. Just having people around you that knows the struggle and can tell you how they get through it really helps. I’m a firm believer of the old adage that says, ‘those who feel it, know it’.”