Mental Health Resources for Parents of Children with CHD
Shining A Light on the Mental Health Repercussions of CHD
Many of you may not know this, but I have a Master’s Degree in Clinical Counseling and Psychology, so mental health is something that I hold in high regard. I have also struggled with anxiety & depression throughout motherhood.
So often, we focus on the physical side of congenital heart defects: what they mean medically, what signs to look out for, and how each one can present differently. But we don’t often talk about how CHD can have huge effects on the patient and the family.
According to conqueringCHD.org, “Research studies indicate that parents of children with heart problems often experience difficulties with anxiety, depression, and traumatic stress related to upsetting aspects of the child’s medical course.”
My Own Story
After becoming a mother, I was diagnosed with Postpartum anxiety. Of course, once we received the news about Jones’s heart, that anxiety heightened, and I closely walked the line of depression as well. The information, the worry, the confusion, the pressure of this new role… it was a heavy burden.
When you are thrust into the role of heart parent, medical mom, caregiver... call it what you want, you automatically get stamped with the word strong on your forehead. People constantly tell you they don’t know how you do it, that you are the strongest person they know, and that they would have crumbled.
For a while, I took these compliments in stride. I never thought of myself as strong, and hearing others express that made me feel odd and undeserving.
Because the truth is, I didn’t choose strength. I didn’t choose to one day wake up and be ‘super mom.’ I woke up on January 11th, 2018, and by the end of that day, my world was forever changed. I wasn’t afforded the choice to be weak. When your child needs you, you step up to the bat, whether ready or not. And I can assure you I was not prepared.
My mental state is still deeply scarred from our son’s diagnosis. I have been to therapy, I am still prescribed medication, and I have had moments when I hear a song or see a picture, and I am immediately back in that place of fearing losing my child.
Medical parents are genuinely some of the most amazing people I know. But I am here to tell you that it is a blessing and a struggle. The challenges faced are difficult on a level that most humans never even scratch the surface of. The strength you see shines through because you are watching your child fight; if they are fighting, you better bet you will too.
I wish I could wake up every day and choose strength. But many days, I don’t, and when we were in the trenches, there were days when weakness was all I could muster up. Tears, unimaginable thoughts, and sleepless nights sometimes take over, and this is when God is there to wrap me in his arms. He gives me a place to rest, to ugly cry, and even to wield my most negative words towards him.
There is no strength without Him. Because in each moment of weakness, he fortifies your heart.
How to Help:
When you or your child has experienced any medical trauma, don’t ignore or push aside the pain you have felt. You may not realize the depth of your trauma because when you are in the moment, you are running on adrenaline and are in survival mode. But once you take a step back, it can become obvious how wounded your heart is.
Your pain is real, friend. You have walked through difficult and excruciating moments. Don’t sweep it under the rug. Give yourself the time, the space, and the resources to heal.
I have found some fantastic resources that I would love to share here for parents of children with Congenital Heart Defects.
Resources for Parents:
TALK TO A COUNSELOR - Literally, EVERYONE on this planet can benefit from therapy. Still, parents of children with medical issues need a safe place to process what has happened, express their emotions, and develop coping skills. To find a counselor near you, try these websites: betterhelp.com & goodtherapy.com.
MOVE YOUR BODY- There is a direct link between mental health and exercise. If you are stuck in a hospital take a break every few hours and go outside for a walk. If you are home, throw your little one in the stroller and do the same. My mom use to call me every day when Jones was really sick and encourage me to move my body and when I did, it always helped.
EDUCATE YOURSELF - I have found that it eases my anxiety if I educate myself on my child’s disease. I like knowing what is going on research-wise, what living with a CHD looks like, and what tests and procedures we might encounter. Here are a few resources I have found helpful:
CONNECT WITH OTHER FAMILIES - It is difficult to go through a diagnosis like this alone, so finding other likeminded parents to discuss concerns and questions with will help to lighten your load:
EMOTIONAL & MENTAL HEALTH RESOURCES - The following are books, podcasts, and other things that I have found helpful in helping me process and heal.
Podcasts:
Heart to Heart with Anna Podcast - devoted to the CHD community, Anna speaks with survivors, family members, and medical professionals about navigating the world with CHD.
Books:
When Your Child Has a Chronic Medical Illness - a book written for parents to help guide you through medical parenthood.
Healing Hearts and Minds - a book focused on coping skills and self-care for those with CHD. Although it mainly targets adults with CHD, it can be an essential read since our babies will one day be adults.
Heart- A History - I felt like having some background in the medical field surrounding cardiology would help me grasp how far we have come and the strides we are making. This engaging book was written by a cardiologist who walks us through the medical history of the heart.
Rhythms of Renewal by Rebekah Lyons - As the mom of 4 children (two of which have Downs Syndrome and one who is adopted), Rebekah gets that life stressors can impact our mental health, and her book helps highlight how to practice life-giving rhythms.
It’s Not Supposed to Be This Way by Lysa Terkeurst - When we walk through suffering seasons, it can be hard to understand why it is happening, and Lysa does an incredible job of connecting us back to God in those moments.
Breathe Mama Breathe - A book full of mindfulness exercises for busy moms.
Breath As Prayer by Jennifer Tucker - Use this beautiful book to calm yourself in stressful moments. Breath prayers are a quick, grounding way to bring yourself back to the goodness of God.
Journals & Planners:
Medical Treatment Planners - One way I have found that helps manage my stress in caring for a medically complex child is keeping things straight and in one place. This medical planner by Erin Condren would be the perfect place to do that.
Medical Mama Compass - another excellent option for keeping up with all the things that come with being a medical parent. This one has places to help you keep up with everything! Appointments, insurance, medication refills…
Promptly Gratitude Journal - Journaling has always been a coping technique for me, but I find that guided journaling is a much easier place to begin sometimes. Promptly has several guided journals and would be lovely for any heart parent. This particular one focuses on gratitude, and practicing gratitude has been linked to greater happiness and positivity.
Peace Be Still Coloring Book - I know it might sound silly, but doing something mindless, like coloring, is a great way to calm yourself. I used to always have a coloring book like this one in my bag while we were in the hospital with Jones. This one is beautiful because it has scriptures, quotes, hymns, and more.
Rest Wordsearch Book - If you have been around here long enough, you know these wordsearch books are a favorite that I keep in my calm down toolbox. Instead of searching for random words, you are searching for words from a sentence of scripture.
Have anything else we need to add to our parenting toolbox?! Leave me a comment below! I am always looking for new resources.
