Reader Worried Daddy writes,
I read your article about "preparing your toddler for surgery like a boss" and I was beyond impressed. Thank you so much for sharing the strategies you used.
My 2 year old girl is heading into an MRI to determine if she needs to have brain surgery. They found a cavernoma during a routine MRI when she was 1. This will be our 3rd to determine if it has grown. Based on what we learned about cavernomas, people can lead normal lives with them but they can also suffer some nasty medical stuff (seizures, migraines, stroke). We were told that if it has grown then our daughter will need to have the procedure (craniotomy). On the other hand, if it hasn't grown then it will be up to us if we want to remove it or leave it and follow up in 6-8 months with an MRI. My wife and I agree that the risks of brain surgery are less than the risk of leaving it in. So we want to do it to secure her quality of life for her.
My question is this... Along with using your suggestions from your article, what can we do for our daughter (and each other) to manage the anxiety of the whole process?
We have waited a month for this last MRI and during that time our daily lives have changed. I am a constant worrier, so even when I try to distract myself I still concoct elaborate scenarios of my daughter dying on the table. My wife has lost a great deal of sleep because of her concerns. We we tell each other "it's all going to be ok" we believe it, but it doesn't make us feel any better. We sit at dinner and try to talk about other topics from our day, but the conversations and short and hollow. We address it so much that it seems like it is all we ever talk about. All of this was just leading up to the MRI... I am afraid this will get even worse when we are waiting for the surgery.
I have recently started seeing a Cognitive Therapist to try to give me some skills to stop my negative thought pattern (immediately assume worst case scenario, focus only on possible negative outcomes, ect). I am also on Bupropion and have been diagnosed with a combination of depression/anxiety. Now, my main concern is how my wife and I can best support each other so we can project the positivity you referenced in your article. We both want what is best for our daughter and we both agree that she will need the procedure. But we both feel the same level of anxiety leading up to it. I guess we just don't know if we are making the right decision either way given the risks that are present in both options.
This is such a difficult situation. I understand why you and your wife are so terrified. Not only are you scared of the outcome of the surgery, but you're also scared about making the wrong decision for your daughter. I am not a brain surgeon by any means and I cannot possibly advise you on whether to operate or not if it hasn't grown. I would recommend getting a second and even third opinion from medical specialists that you trust, and listening to them.
You and your wife are doing everything right here. You're seeing a therapist (and she may want to start too, you're taking meds, and you're reading everything you can get your hands on. Right now, no matter what you do, you have no predictable impact on what happens. You can decide not to operate, taking doctors' advice, and the tumor can grow. You can decide to operate, and she can suffer irreparable damage. There is no way for us to know what will happen, and no way for anyone to know what decision is best.
While this uncertainty can lead to tremendous anxiety, there is also the potential for you to undergo a transformational paradigm shift. This often happens to people in situations like yours. All the small stuff fades away, and they are left with a stark understanding of what matters and what doesn't. There is so much that is outside of your control, but one thing remains squarely in your control: your daughter's happiness.
As my article discusses, you can make anything into a world of joy and wonder for a two year old. You have been given the gift of knowing that you shouldn't be sweating the small stuff, because your daughter's life is at risk with surgery and with this disease. Every day with your happy little family is a blessing.
I suggest that you and your wife write out a list of 25 little fun things that you can do as a family. Put things that you would have found super fun as a kid, like going out for ice cream after dinner as a surprise, and going on a carousel, and playing with bubbles. Make sure that you do one every single day. Shower your daughter and your wife with love. Be the dad you want to be, and give yourself wholly to your family. Then you will know at the end of every day that the one thing that you can control, being a good dad, is the thing that you are hitting out of the park.
Good work getting a therapist and going on meds. I can't imagine anyone could get through this without both of those sources of support. You and your therapist should discuss the taboo, wrenching topic of what your life would be like if something did happen to your daughter. The more you talk about feared scenarios, the less anxiety you feel about them. Of course that would be a horrific and devastating scenario, but the anxiety is just sapping the energy you need for yourself, your wife, and your child. If something bad happened, you would deal with it. This anxiety, though, is the enemy and should be treated as such.
Good luck to you and your daughter. You're as good a dad as this guy, who is my other favorite dad reader. Till we meet again, I remain, The Blogapist Who Says, Is It Just Me Or Are Dads Nowadays Super Awesome?
This post was originally published here on Dr. Psych Mom. Follow Dr. Rodman on Dr. Psych Mom, Facebook, Instagram, Twitter, and Pinterest. Order her book, How to Talk to Your Kids about Your Divorce: Healthy, Effective Communication Techniques for Your Changing Family. This blog is not intended as diagnosis, assessment, or treatment, and should not replace consultation with your medical provider.