Moments after you discover your child is born with a congenital heart defect, come the waves of emotions, instinctual responses, medical information and terminology, and subsequent confusion. Though your child is alive, fear, grief, and sadness crash into a family like tremors after an enormous earthquake. Be gentle with yourself – it is completely normal to have your own imperfect response to the shock of having a child with heart disease. A new language is shoved into your life — it’s as if you’ve been dropped into a country where you don’t understand a word: Ventricular Septal Defect, Pulmonary Atresia, Ventricular Hypoplasia, Long QT, Transposition of the Great Arteries, and the list goes on. The medical costs accumulate, and the litany of disruptions and burdens often mount unpredictably. Family life changes and may feel like an emotional roller coaster filled with down days and good days.
It becomes critical for parents to take care of themselves, so they can still be the great cheerleader, coach and mentor they want to be. For those that are creative, like Kaitlyn Tucek, they cope and express this journey through their art https://www.kaitlyntucek.com/ Some seek to more thoroughly understand the conditions and choose to volunteer or speak with parents in similar situations. For others, prayer, meditation, breathing techniques, and exercise are good strategies to help to reduce the stress. There are resources available through the hospital social workers, therapists, or non-profits like Jessie’s Heart, who can help with the financial shortcomings. For a period of time you may choose to lay on the couch binge-watching Netflix shows. But once you start taking care of your own health, it will create positive pathways and perspective for the entire family.