Austin E. Wilmot, M.S.W., L.C.S.W.
For many parents, it is easier to celebrate the wins and achievements than to acknowledge and face losses felt by their child (and themselves). A child with CHD has already been dealt a profound blow just upon their entering the world--a life sentence with CHD that they have no way to understand, control or even consent to treatment for as an infant. Growing up, more is experienced with and learned about CHD and the ways in which their particular condition impacts their life, including any restrictions, limitations, requirements and cautionary notes. It is difficult to grapple with having a chronic medical condition, as it never goes away nor offers any certainties about the future. Grieving such a loss is therefore not a "one and done" event, but a process that evolves along many dimensions. For a child with CHD, acknowledging losses is an important part of that process. Try to put yourself in your child's position and think about "what sucks" about having CHD and add to the list below:
Restrictions or limitations on physical activity
Required medical appointments
Painful or intrusive medical procedures or surgeries
Feelings of powerlessness
Feelings of helplessness
Fears of worsening condition, death
Worry about heart not working, stopping or getting shocked by pacemaker
While a bullet point list cannot do justice to this topic, it offers a starting point to further dialogue. Helping to make talking about "what sucks" just as benign as conversations about other feelings is a step towards healthier expressions of emotions and building emotional muscle.
What you can do
In addition to exploring "what sucks" about CHD, inviting your child to do a drawing activity with you may help to foster further dialogue. You may ask your child to draw on three sheets of paper:
On the first paper, list and draw about "what sucks" about having CHD
On the second paper, list and draw the feelings you have about all those things from the first paper
On the third paper, rank the things that suck about having CHD and the feelings from biggest to smallest.
Depending on the child's age, you may need to help complete the activity. Once completed, attention is towards your exploring and empathizing along with your child's experience, not attempting to "undo" it or minimize it with another perspective. It is a brave thing for both parent and child to recognize the emotional truths of having CHD (and helping to find the words for it). This video by Brene Brown (Brene Brown on Empathy) also helps to illustrate the importance of this empathy and connection.
A note on "what sucks" for parents
Parents have a head start on facing their own trauma, grief and sense of loss associated with having a child with CHD. In some dysfunctional families, parents make the child(ren) responsible for taking care of their emotional needs. In a CHD family, this might look like a child having to wall off their own emotions in favor of a "Heart Warrior" façade that is done for the benefit of the parent. It may also look like a mother who, because her infant is not eating well after being brought home from the hospital after heart surgery (a traumatic, overstimulating situation for the infant), force feeds the infant in order to satisfy the mother's need to feel like a "good mother" instead of being able to reflect on what this infant may be feeling and why he may be having such a difficult time eating. A parent who is unable to face their own pain is less able to see and help an infant or child experiencing their own.