Wow — what a difference a year makes! About a year ago, I wrote a series of blog posts about my son’s life-threatening congenital heart defect, going into severe heart failure, and undergoing open-heart surgery with Dr. Jeffrey Heinle at Texas Children’s Hospital when he was only 26-days old.
Talk about a life-changing, traumatic and scary time in my life.
I discussed the fears of finding such a serious heart condition and seeing my son go through surgery and recovery. I wrote about the amazing roller coaster of emotions that I felt, especially on the days when I would spend so much time remembering our hospital stay, how incredibly grateful I was, and thinking about what could have been had we not received the amazing care that we did. I would make myself almost sick on the days we went in for check-ups with our cardiologist, Dr. Shannon Rivenes, fearing that she would find that his heart was not improving or growing as it should and that we would be sent in for another surgery. That fear turned into stress and anxiety about my son’s health and prognosis, and it became overwhelming at times.
At the time, I couldn’t seem to surrender those emotions and accept that I could not change the way his heart was.
Today, almost 2 years after Texas Children’s Hospital saved my son’s life, I feel like a different person.
I really do. Every day with Zeyd is a good day. Zeyd is so happy, full of life, energetic and smart. He is developmentally on track and has had no setbacks because of his heart condition. You would never guess he was born with a heart condition unless you saw the scar on his chest. Zeyd loves to swim, ride his bike, push his lawnmower around the house, color and play with anything that has wheels and an engine! I could not be more amazed and proud of him and feel so blessed to be his mom.
Life since his surgery started out with me getting easily panicked about his breathing, his sweating, his level of activity, staying away from germs, as well as all of the normal things that worry every new parent. Luckily though, things really have gotten better and easier. For me, the first year post-surgery was much different than his second year post-surgery.
To other parents reading this, was there a time after learning of a health condition when you realized, ‘I can finally worry a little less now and it is okay?’
Our cardiologist always tells me that if Zeyd is tired, he will rest. He can listen to his own body and I can observe his actions instead of constantly obsessing over every little thing. I can let Zeyd be a regular kid. I can let him sweat and run and when he does breathe fast — it is OK. Zeyd may need another surgery because he still has problems with his aorta, aortic valve and mitral valve, but now I just try to avoid the unnecessary worry. I should save it for a time when I really do need to worry and that time may come soon, but thankfully, it is not right now.
To any other parents out there who wondering if that fear and worry inside of them is always going to be there, in my experience — it gets better! I think our bodies naturally develop ways to cope with what has been put into our lives, as difficult as it may be, we find a way to cope, to understand, and to accept the obstacles we face and that our children face.
As I have said before: To every single person involved in our care and in the care of other children, I hope that all of your families know that every minute you may spend away from them at work, you are allowing your patients (us) to spend a lifetime with our loved ones, and I am sorry for that compromise, but forever grateful for your help.
Thank you Texas Children’s, thank you for everything.