Receiving a difficult diagnosis for your child; a parents’ response

As a parent, we often go back and forth in our minds regarding our children. Obviously, we want what is best for our children and to do what we can to help them succeed, but it is a hard pill to swallow acknowledging that maybe your child is struggling or hurting in some way…

When a parent decides to make the decision to follow up with a professional it may already have been a long journey to get there. Some parents experience: denial, fear, guilt, a strong desire to protect their “baby,” and more.

If you have ever been called into a doctor’s office or your school office to discuss your child’s health, development, learning, or behaviors, often there is an initial wave of anxiety that begins to start somewhere deep inside your chest. As a parent, we often go back and forth in our minds regarding our children. Obviously, we want what is best for our children and to do what we can to help them succeed, but it is a hard pill to swallow acknowledging that maybe your child is struggling or hurting in some way.

Imagine when you get to the doctor’s office and talk with them about your concerns, they examine your child. This could involve physical or cognitive tests. There can be many hoops to jump through to ensure the safety and wellbeing of your child. All the while your focus is on supporting your child: any fears your child may have- you soothe; any worries-you comfort.

During this time, your own stress and anxiety levels are the furthest thing from your mind. When the doctor finally comes back to report on the findings and you receive that news you were hoping you had just made up in your head, a confirmation of all the things you feared, it can be devastating. It’s devastating for you, for you partner, other caregivers, families at large.
From the moment a diagnosis is formulated, the first question most parents ask is “what is the intervention?” This is the automatic response of a parent, the ever advocate for their child. From that moment forward most go into a hyperdrive mode of scheduling appointments, finding interventions, Googling any and everything they can to try and find a cure or solution.

While the child is being taken care of and treated for their diagnosis, who is taking care of the parent? Of mom and dad? Part of being a parent is putting your own needs on the backburner, but in a situation where your child has received a lifelong or terminal diagnosis, when will the needs of the parent come back online? The parent has just taken a devastating blow, something that has confirmed all their worst fears and yet as parents we move forward, most often, as if nothing has occurred. Our needs, our sadness, our grief never explored. Grief is the feeling most often being felt and loss over a future that will never be known.

From the day parents become pregnant, ideas start formulating about who their child is going to be: what their personality will be like, who will be their first crush, what will they grow up to be? Thousands of hopes and aspirations for the child…in an instant, all these ideas can be crushed. While a different future is in place for the child now, the parent deserves a space to process these feelings and a place to find support.

A good place to start to find support is individual therapy or counseling; a safe space where you can be an unedited version of yourself. Others find support in groups, either therapeutic or community. Finding commonality between others who are also working through feelings related to their child. Finally, setting the time aside for your own self-care and making it a requirement and daily ritual if self-care is not on your essential priority list often it does not happen. Self-care can be a simple as setting a daily intention to taste and enjoy your hot cup of coffee or taking a few deep breaths before you have a hot shower.

During these turbulent times, try and think back to the wise words of flight attendant tells. Always put your mask on before putting on your child’s mask. Taking the time to nurture yourself through life’s most difficult moments is essential to be the best parent that you want to be, to care for your child the way you want to care for them, and to love them wholeheartedly.

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