I've been very candid on our family's journey with Hypoplastic Left Heart Syndrome. Anything that is heart related and sometimes things that are not, I post on this blog. But there's an entirely other side to being a heart parent that I haven't been open about. That is the psychological aspect.
I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.
It is important for me to talk about this side of our story- not just for the sake of being open and honest, but more importantly for the current and future heart families that read this blog. This part is too overlooked and needs to be known. I've had many heart parents open up to me about this part of their struggle and I want them all to know that they are not alone and how perfectly normal it is.
I'll explain by starting in the middle of it all. Last week, I was putting Tehilla to sleep. She has been particularly difficult at night times lately because she's at that frustrating stage where she can't decide if she needs her naps or not. So instead she refuses to sleep and has learned the skill set of procrastinating bedtime. I had sang our Shema bedtime songs and told her a made-up "Princess Tehilla" story and was lying down with her in bed.
She then asked me to sing her a song. A "Tehilla" Song. I told her that when she was a baby I used to rock her to sleep and sing her a Tehilla song. It's to the tune of Lullaby and Goodnight but the words are just "Tehilla" over and over again. It goes, "Tehilla Tehilla Tehililililila Tehilla Tehilla Tehililililila..." You get it.
She asked me to sing it to her. So there we were sitting in her pink and polka-dotted room, on her pink blankets and I start to sing her the song. It was at the "Tehililililila" that my voice cracked and tears sprang to my eyes. I tried to blink them back and sing on, but instantly my mind took me back to the times when Tehilla was just an infant. I would rock my very purplish baby to sleep and wonder if she would make it through the night. I would softly cry while singing her this song, my heart praying and begging G-d for another day with my baby girl.
I sang this song to her after surgeries, trying to soothe her pain and discomfort and again, softly crying and begging G-d for her health.
I hadn't sang that song in two years and in that one instant, last week, I felt the complete weight of the stress and anxiety that we endured daily during her first 14 months of life hit me and I just desolved into uncontrollable sobs.
The heart parents reading this are nodding their heads in agreement and I have now triggered their own PTSD.
These episodes of post traumatic stress disorder don't happen frequently anymore.
I used to love to cook and at one point had even enrolled in culinary school to become a pastry chef but changed my mind and became a graphic designer. The harder and more complicated the recipe, the more I relished in accomplishing it. But quickly after we brought Tehilla home for the first time, did I bitterly begin to despise cooking. It would be the time daily, when my hands and eyes would be busy, but my mind would begin to wander.
And wander it did. I thought about how much longer we had with Tehilla, if we would get a chance to celebrate a birthday with her, how we would cope without her, and how we would help our other two kids cope without her. Cooking quickly became anxiety attacks that I would blame on cut onions. Doesn't everyone have anxiety attacks from cutting onions? Our menus immediately changed to whatever I could cook within 10 min and that helped me avoid quiet time to think.
It's definitely a very positive sign for me personally that I no longer have anxiety attacks when cooking and I have begun to start cooking gourmet food again.
It's important for me to explain that I have PTSD and have been living with it since Tehilla's pregnancy. I am most definitely in a much better place right now, but every now and then something triggers it. You'd be hard pressed to find a heart family that doesn't suffer from PTSD.
This journey has changed every person in my family. I've put my family in the spotlight enough so I will give my kids the courtesy of not explaining in depth how this journey has harmed them. You can imagine what the instability of us running constantly to the ER or doctor without a moment's notice, sometimes in middle of the night, would do to two small children. None of us are the same as we were before.
We have learned to live in the moment and be extraordinarily appreciative for every blessed day that we have with each other. We live life to the fullest and are more outspoken. We have found parts of our personalities that we didn't know existed.
Our lives have changed for the better since we had Tehilla. She has taught us how to fully live. It just hasn't come without a hefty price for all of us.