Helping Our Child Cope with My Heart Failure

For all of Mazy’s life, mom has had heart issues. She doesn’t know what it’s like not to have a mommy with heart failure. This is her world. And this is the world of so many other parents! Insert the word that describes your family because we all have them in some way, that “my child doesn’t know what it’s like to have a mommy or daddy without…”

It doesn’t take a genius to see that we live in a broken world. Broken bodies. Broken relationships. Broken circumstances. Sometimes it feels like everything around us is broken! I don’t know about you, but I have to moan and groan as my bones crack, when I try and get out of bed in the morning because this ole body sure isn’t getting any younger!

Despite the fact that I’m getting older, this body has been through the ringer with heart failure. But a chronic disease also means the family experiences the ups and downs of the disease too. And sometimes, that is the most painful realization I wake up with. I recently told someone that I would rather go through another open heart surgery, than see my daughter wrestle with the realities of my heart failure. It pains me to see her tears, her frustration, and her ache. Her desire for everything to be normal, for mommy to feel good, and for life to be “as it should”. 

But that’s where I catch myself. As it should? This is how God has ordained our life to go. It doesn’t always make sense and it’s messy. Though God, in His divine and sovereign character, is creating a beautiful story not only for me, but for our daughter. My heart failure is creating within her, a trust so deep in God, that I couldn’t ever teach. A faith so strong, that I couldn’t ever model. An emotional understanding, that I couldn’t recreate through life experiences. I can’t change our circumstances and nor do I really want to, even though I have moments when I wish I could. So instead of wishing for life to be “as it should”, how can we help Mazy thrive, instead of just survive this time of her life?

This past year hasn’t been an easy one for Mazy. It started in Kindergarten as fears of separating from mom increased on the daily. The kicking and screaming to go to school became a lot. The sheer fear on her face when she had to leave me, no mom ever wants to see. A separation for her, she thought would stay permanent. She feared I would never come back because to her, that was life’s experience. Mom would go to the doctor and mom would come home in pain or with a new device. Even more so, leave for a week and be hospitalized. Her brain was taught that if “A” occurred, “B” would happen. 

Summer was fantastic because she always knew where I was. Then 1st grade started and so did a new onset of appointments and tests. The anxiety heightened to a whole new level. Nightmares, debilitating panic, hours of tears both morning and evening, and feelings in her little body that she has no idea how to process. We assumed with me working at her school 3 days a week, that this would help, but it actually was only making the situation worse. I was there, but “unreachable”, as we both did our jobs as we called it. Our hearts broke. She was worn out from all the tears and so were we. A scenario we never expected to find ourselves in and the guilt I carried was heavy. Maybe I was a terrible parent and didn’t love her enough. Maybe I wasn’t doing enough. Maybe I didn’t do enough research. All the maybe’s crept in. I allowed the devil to make me believe that if I didn’t have heart failure and if I wasn’t sick, that she wouldn’t struggle. What a lie, though I was trying to seek any answer I could, even if it meant blaming myself. I’m telling you, it was an ugly spiral. 

As the weeks went on, with her feelings only getting bigger, our school partnered with us to get her tested for a whole slew of mental health disorders. We had tried everything in the books – all the coping tools, mechanisms, and gadgets. After hours of testing and paperwork being filled out, Mazy was diagnosed with “Adjustment Disorder with Anxiety”.

As much as I didn’t want to label Mazy because she’s so much more than a label, we knew that if we had words to describe what was happening, they would be words to describe how God created her. As the school psychologist began to explain this disorder, I could have cried tears of joy. It wasn’t me. It wasn’t our parenting. It was what God was allowing in her life.

So what is Adjustment Disorder with Anxiety? Basically it is an excessive reaction to a traumatic event and is often short-term, but can be persistent and lead to general anxiety.

Symptoms include feeling worried, anxious and overwhelmed, and also have trouble concentrating. Separation anxiety is a dominant symptom in children. According to the Cleveland Clinic, symptoms include: acting rebellious, destructive, reckless or impulsive, being anxious or agitated, feeling trapped, hopeless, crying easily, trouble concentrating, being withdrawn or isolated; feeling sad; lacking energy or enthusiasm; loss of self-esteem, loss of interest in everyday activities, changes in eating habits, and feeling overwhelmed and stressed.

Mayo Clinic says, “Symptoms mainly include nervousness, worry, difficulty concentrating or remembering things, and feeling overwhelmed. Children who have an adjustment disorder with anxiety may strongly fear being separated from their parents and loved ones.”

This is our daughter in a nutshell. I’m sure you are thinking okay, what kid doesn’t have this? And that is probably true to some extent! This fall though, we had hours and hours of crying every day, she couldn’t stay in the classroom because she was so overwhelmed with her emotions, she didn’t want to participate in really anything in or outside of school, had a low self-esteem, and had numerous nightmares a night.

For instance, Sundays are always a hard day. Going to church alone, brought her anxiety to a whole other level. Our sweet girl couldn’t even sit through the service without tears because she knew she had to go to Sunday school and leave me. AND go to a different room. It was a battle and they graciously took her with many tears, but my heart just broke. Same with school. She would go kicking and screaming, but not make it very long before she would end up back in the student support services room because she just couldn’t concentrate and not cry. I often had to go in the bathroom and lose it myself because it was so hard to watch. I felt so helpless because we just didn’t know how to help her. We were buying all the “things” to help her cope like weighted blankets, fidgets, books, and we even slept with her every night because going to bed was such a battle. She couldn’t fall asleep knowing we wouldn’t be there and if she woke up and didn’t see us, the tears would just fall. But it just wasn’t enough. And it all started after I had an appointment in Ann Arbor. That’s when the school recognized something else might be going on.

Basically Mazy’s brain does not have the mental energy to do multiple situations in a day, due to the trauma. So for instance, getting to school is hard enough. It takes all of her mental energy to go, and so when she finally arrives, she has nothing left and it comes out in anxiety. Transitions for her are probably the hardest – any transition. It takes so much brain energy for her to mentally transition from one thing to another, that when she gets there, she is done. There have been too many times when “things were not normal” due to mom’s heart, and her little mind put up these barriers, causing a whole new level of anxiety. Her brain was taught to go into panic mode. Even though my 2 open heart surgeries happened when she was 2 1/2 years old, we were hoping she was young enough, but that’s when consistency wasn’t there. Even after she was born, I was sick and babies recognize that; even though I was loving her the best I could.

I had to go through my own grieving process the past few months, reminding myself that it’s not my fault. It’s what God has allowed. It’s sometimes still hard to process and talk about because I allow my mind to say I’m responsible for her struggles, but I KNOW that isn’t true. I can’t control it and so I can’t be responsible for it. In all of this, it has made me love our sweet Mazy girl all the more. She’s been through so much in her little life with mom’s health and it makes me realize how resilient she really is, despite being diagnosed.

She can grow out of this disorder and so we pray she does. They said it will be an emotional roller coaster because her brain isn’t able to process all of the big emotions and circumstances she has to deal with, so it will come and go. And they are SPOT ON. Mazy is actually doing REALLY well right now, but it’s one of those things that we always need to be prepared for an “episode” to flare up. It will come out of nowhere and that’s normal. It sometimes happens in the least expected places! But I am learning to remind myself that when those flare-ups happen, that this is how God uniquely knitted her together and it gives me all the more empathy for her, realizing all that she’s been through.

We continue to work on ways to help her cope. Though the best medicine is always prayer and reliance on our Savior. He knows her more than any doctor or mom or dad. She is seeing a counselor which has been so wonderful, to help her talk through a lot of scenarios. We also have a village of people around us! They are aware of what is happening and give her so much love and grace. We know in all things, God works for the good of those who love him, and we know that this too, is creating a testimony and faith story for our sweet girl, that she will one day use for HIS GLORY.