Around April 2012, after secretly dating one another, husband and I abandoned our off-week homes and moved in again to the family home together. It felt so good to experience the early excitement of a relationship with him again. Time apart had made us appreciate each other and we were behaving our best. So glad for the extra help that another adult in the home provided, and the affection we could share, we were hopeful for a more positive life together. We felt determined to seek counseling and develop new skills to finally deal with all of the issues that had been swept under the carpet.
Then, a few weeks after reuniting, our 10 year old son had an MRI of his head because of a weird vein above his eyebrow. Minor stuff. Let’s just have a look to see that everything is okay. Well, when the MRI results came back, the doctor told us they needed a follow up cat scan to rule out a brain aneurysm. What the?? The idea of that could not even fit into my brain. I brought him to Duke for the cat scan and the events that followed were so surreal.
The cat scan led to a confirmation that, yes, there was a giant aneurysm in his left internal carotid artery that had, amazingly, not ruptured. He had been an avid soccer player, had been on a tae kwon do sparring team just a year before (that we thankfully had quit), and was an overall active kid, biking and running to and from school. The thought that there had been a ticking time bomb sitting in his brain led to all sorts of worries of what if? There was no time for that.
What followed from the moment of knowing to now is nothing short of a miracle.
Once you know, you can’t not know. Your world becomes about the aneurysm, a word that only the day before you could barely even spell. Or you had only heard stories from friends about people who knew people who had died from them in an instant.
My research and networking skills went into full force. Decisions had to be made, procedures had to be booked, and we had to work as a team. That is where husband and I excel. In the “business” of family, we rock. We are both action-oriented and rational in time of crises. We put our heads together with the doctors and decided stents were the best option.
There were so many events, new and scary physical and emotional experiences in and out of hospitals–too many to list or run through chronologically at this point. The gist is that my son underwent 4 surgeries from June 2012 to February 2013. Multiple hospitalizations, google calendars filled with medicine schedules that continue to this day (thankfully no more high steroids, just blood thinners) and appointments. MRIs, CTAs, blood tests, angiograms, neurosurgeons, eye doctors, and more.
Summer of 2012, shortly after his first surgery, he became legally blind because the aneurysm was still growing despite the pipeline stents that had been placed in there. It was compressing his optic nerve because of its location and size. They administered high steroid doses that messed with his body (hunger, hair growth, joint pain, stretch marks, etc.) to try and save his eyesight. We spent many nights by his bedside in that ridiculous chair/bed for parents where you couldn’t sleep even if you could. Three stent operations (consisting of 7 stents total, with 3 layers), and the ultimate–when all else was failing to stop the growth of this giant aneurysm–a double brain bypass that we flew to Phoenix, AZ, for on a moment’s notice in February. The top brain surgeon was there and we knew we only had one chance for this surgery.
Looking back, it was a mountain of medical moments, ever changing each week depending on his eyesight (which fluctuated an enormous amount and precipitated emergency surgeries that turned simple office visits into terrifying events). “Don’t let him eat or drink and head directly to the admissions desk. They are waiting for you there,” I heard the frantic voice of his surgeon’s nurse practitioner say as I answered my phone on our way out of the neuro-opthalmologist’s office. He had had an MRI that morning and they decided an emergency angiogram was necessary and more possible stents. The pain of telling your hungry 11 year old that no, you are not going out for sushi as promised, after all of these appointments. You are headed to the hospital instead and you are not even allowed to drink any water. That happened twice, making it pretty scary to trust that you really are just going for a scan or a doctors appointment. Too often he got the shock of a lifetime that there was more to it, and no time to prepare mentally. He was absolutely darling when he would ask, “Do they really need to do this?” And when we would answer, “Yes, honey, I am sorry but they do,” he would deal with it, because he had no other choice. He developed the skill of dealing pretty early on in this experience, because fighting with reality just made it harder to accept, and you still had to deal with it anyway. There was no way around it.
I could write volumes about what it feels like to have your child become blind over the course of a few weeks, to have to help them find the water that is right in front of them on the restaurant table; what it feels like to kiss them goodbye in the operating room–not sure if you will see them alive again; and what it feels like to put all of your faith in the universe, your child’s body and the medical professionals entrusted with them.
I think before this unfolding in our lives I had been more controlling. This experience completely dismantled that in me, and forced me to let go and surrender. It has given me a perspective on life that is trust based–“it is what it is” took on a whole new meaning. My son has taught me to deal with reality in all of its ups and downs, and to go with the flow. The sooner you accept it, and make peace with it, the happier you will be.
His favorite sayings are, “You can’t have stars without darkness,” and, “When life gives you lemons, make orange juice.” He serves as a bright star for me. The friends we have met along the way on this medical adventure, the life lessons we have gained, and the perspective it gave us are truly gifts that came in a very unusual package. When people hear our story, they assume we must be angry about what we have been through. I feel quite the opposite is true.