Can you think of a time when you were looking forward to something? I mean REALLY looking forward to something? It may have been a trip, graduation, special gift, starting a new job, getting married, launching your own business, having a child, buying a house, etc… Do you remember counting down the days to this special time? The feelings that you felt? Now imagine knowing that something difficult or scary was coming up…knowing the date and maybe even the time of this awful event. Imagine the stress and the anxiety that you may feel. Now multiply that, because that awful, scary thing that you have just imagined is happening to a baby.
Many cranio parents will tell you that the worst part of the whole ordeal is the wait. The wait between knowing that your child needs to have surgery and the surgery itself. What makes this period so difficult is feeling overwhelmed by whether you have made the right decision, imagining what could possibly go wrong, and of course, worrying about what the aftermath of surgery might look like.
I can’t lie to you and tell you that I was much different than many of the parents out there. I don’t want to pretend that my faith somehow made all of this a breeze.
In fact, amongst all the anxiety and stress that I was feeling, I also blamed myself for several different things.
Should I have called the hospital and “harassed” them more to get an appointment instead of waiting a bit longer before checking in? Did I do something during pregnancy that I shouldn’t have? Was it because of the long labour I had? Should I have pushed to be induced? Was it because of the c-section? Was this some sort of divine punishment for something that I had done in my past? To top it all off, I was really worried about what other people would think when the finally found out.
Craniosynostosis is a relatively unknown issue, and even medical professionals are currently unsure of what causes it. But to me, that just gave people an opportunity to hypothesize, and since I had no answers myself, I didn’t have the tools to shut down any speculation. This left me very unwilling to share the diagnosis with people for a really long time. It was bad enough that I questioned myself (and I thought people would have those same questions), but I also didn’t want, or need, anyone second-guessing our decision. It was hard enough already to make a decision – I didn’t want, and couldn’t handle, other people’s opinions.
So, we did what we do best- try to maintain normalcy. And not only did we do that, but we had lots of other things on the go as well.
As mentioned in a previous post, my husband had a business trip that he had to go on. He had multiple flights, to go to multiple cities, in various time zones, over a few days. During this time, he had to present, network, and make deals, while having the knowledge that at any point of his trip, the hospital could call because a spot for surgery had opened. While he was away, my son and I were home alone.
I kept things as normal as I could during this time, we read, went to playgroup, went shopping, etc… The only problem was that I didn’t sleep much. When my husband travels (particularly when he flies), I don’t sleep very well, and as he had a lot of flights so ended up just staying awake throughout the nights. To add to that, I would be presenting at an upcoming conference after he returned. This was a pretty big deal for me – it was my first time presenting at a conference, and it was a major national conference for my industry. However, knowing that I may have to cancel my presentation last-minute because a surgery date opened up for my son, had me really anxious. I didn’t want to have to be seen as a flake (because obviously everyone would not know the reason), and I knew that being there would be a huge networking opportunity for me. Adding to this anxiety was the fact that I had never been so far away from my son and for that long (it would be 4 days).
A day or so after my husband’s return, we both left for my conference in Niagara Falls—still having not received a call from the hospital. I attended the conference and met with colleagues that I knew, and networked with people I did not know. I showed pictures of my son, and mentioned nothing about the surgery. I would attend sessions and receptions (between pumping sessions), and temporarily be able to push the surgery to the back of my mind; laugh and smile as I made small talk and was introduced to new people. I presented on the last day of the conference, and overall enjoyed the whole thing. If you saw the pictures from the conference, you would never imagine that we knew that our child would be undergoing surgery soon.
I was trying so hard to be strong, and felt like if I had a crack of weakness, I might break, so I had to keep it together.
We returned from the conference, and things at home went back to normal. As normal as they could anyway. I mentally started to make notes of what needed to be packed for each of us as I read up on what to expect post-surgery online. Besides that, we kept our schedule and regular routines and tried to make sure that nobody got sick. Sickness—such as the common cold, could risk the surgery being rescheduled, and we didn’t want that.
A little over a week after our return—on my birthday to be specific—I got a call from the neuro surgeon himself, checking to see if we were still interested in having the surgery because a date had opened up for us. In less than 5 days our son would be able to have surgery, if we wished to proceed. . As I mentioned in my birthday post, it definitely ruined the celebratory vibe. I had mixed feelings. On one hand, I was happy to finally have a date, that would mean that the wait would soon come to a close, and that the surgery wasn’t just an abstract concept anymore. We would finally be able to fix this problem and move towards recovery sooner. On the flip side, I didn’t feel like 5 days was enough to mentally prepare myself for what was about to happen. It was all so sudden (in retrospect, I don’t think 50 days would’ve helped me, I would just worry and be anxious for a longer period). I accepted the date, told him it was some news to get on my birthday, and quickly got off the phone. I had to share that news with the family.
That weekend we decided to share what was going on with our church community. As I said above, I really wasn’t super keen on having people discuss what had possibly caused my child’s diagnosis. But my husband and I had spoken about it for weeks now, and decided that it would be best to share what was going on in our lives while the struggle was happening instead of when everything was over. I did tell my husband that although I didn’t mind this being shared, I did not want to be put in the spotlight. He tried his best, but they called me up anyway along with our son. I was doing so well, but slowly, I felt myself getting emotional, and when someone put their arm on me to comfort me—I could feel the tears start to fall. Oh! I was doing SO well keeping it under wraps. Why the pity touch? “Okay, no ugly crying, get it together!” I said to myself, trying to rush back to my seat as quickly as possible. Crisis averted.
All that to say, I learned a lesson that day. I had really underestimated people. Yes, people had questions (some of which we had no answers to); but there was no judgement (at least not to my knowledge :)).
In fact, I don’t think that I have ever received such an outpouring of love and support from so many people.
People came up to us to share stories of their own children who had been hospitalized for, or were born with, something or another, and were now strong healthy teens/young adults. There was so much power in them sharing their stories that it gave us so much hope. Others told us that they would be thinking of and praying for us all during the whole thing, and when we sent the message to our friends the day before the surgery, we received the same sentiment. It touched us so much to know that we were not in it alone.
That is one of the reasons I believe sharing our stories is so important, because we need to know that other people have/are struggling and have gotten or are getting through it, but we also need to know that there are people who love us, wish us the best, and want to support us (whether we are willing to tap into that support or not).
Driving into that hospital that morning and receiving a flood of text messages had me feeling just slightly less anxious and a bit more prepared than I had been previously.
But nothing could really prepare us for what would happen next…
"If you spend your whole life waiting for the storm, you'll never enjoy the sunshine" --Morris West