Raising A Child with Hemophilia
“When something goes wrong with children’s bodies, the reverberations penetrate deep into the consciousness of families and health professionals alike.”
How many of you have sat next to the bedside of a child who is suffering from a raspy cough, congested sinuses, warming temperature, or upset stomach? Stressful, isn’t it? Getting sick is a strikingly predictable feature of childhood. Managing an acute health problem is bad enough but a growing number of parents are facing the stress of raising children with chronic health conditions. In fact, an estimated 10 million children suffer from a type of chronic health condition.
Caregiver burnout is a common reality among parents. Despite the advances in hemophilia treatment to the point that many children are living fairly normal lives, parents may still commonly experience the following:
Parental guilt
Treatment anxiety
Grief over the child’s loss of “normal” childhood
Vulnerability to health professionals and the medical milieu
Parents must understand feelings of stress, anxiety, and caregiver fatigue are real. Misunderstood, feelings of burnout can spin parents into a vortex of poor self– esteem, self–doubt, and unyielding shame. Sometimes it’s okay to take a step back and say, “This is hard,” or “This has been a hard day” or “I’m not sure what the future holds.” Acknowledging one’s feelings is an amazingly healthy behavior to exhibit. So how do we best handle the day–to–day demands of a child’s chronic difficulties?
1. Accept your child’s diagnosis.
Denial stops the natural progression of grieving patterns that are vital for the body to experience. Denial also erects a barricade to treatment that may be necessary and hinders assistance that can greatly ease the burdens of caregivers. Accepting hemophilia opens doors to healing and accessing services that can be a boon to the family system.
2. Put the child’s diagnosis in its place.
Hemophilia can unbalance family life in a major way. The “well” children can be yanked into our peripheral vision and ignored while efforts continue to focus on the diagnosed child. Family activities are delayed or are entirely forgotten as demands of caregiving take center stage. Putting hemophilia in its place can come in different forms such as preparing for activities that are not planned around treatment. Other suggestions include spending one–on–one time with unaffected siblings, actually involving the other kids during “infusion time”, arranging for “me time” by asking a friend or family member to watch the kids so you can take a drive by yourself, read a book, or anything else that you enjoy. Taking care of yourself is essential so you can feel up to the task of taking care of others.
3. The family system is so much more than hemophilia.
Although hemophilia does have its place ,it can almost always be handled as any of the other issues that families face.
4. Promote open communication.
Share your thoughts and feelings. Keeping an open dialogue with children can go a long way. When your children need to share their feelings, don’t criticize or stop them...just LISTEN to them. Hear what’s on their minds. Empathize with them and communicate that it’s difficult for you too. Come up with a solution even if it’s just a walk around the block.
5. Collaborating with health professionals and schools.
The ability to act goes a long way when it comes to managing a bleeding disorder. We want to have some control over at least some aspects of our lives. Healthy advocating gives a great deal of relief and a measured sense of control to parents. A warning, however. Don’t be too over–zealous where feelings get hurt and bridges are burned. If you’re unsure how to properly navigate and discuss these issues with professionals, seek out the guidance of a medical social worker, a Coalition member, community members, or another trained professional that can help you better understand and support appropriate processes.
Keep up the great work, my fellow parents in the hemophilia community! You’re doing better than you think!
