The wait is long…
My dream of you does not end!
Daily transformations occurred during Alicia’s initial hospital stay at Yale, and with each came a new insight into her condition. We watched the almost negligible signs of progress and noted as well as rejoiced with each and every one of then. Time moved slowly and it was very difficult not to be discouraged by the lack of major strides that we in our heart of hearts were hoping for. When it comes to brain injuries, the earlier the improvements, the more hopeful the outcome. We were starkly aware of this, as the hours, days and weeks crept by.
These were pre-Google days, to be sure. Not to mention that we also had fairly limited access to a computer and only intermittently, so the scope of knowledge available was just not as easily accessible as it is today. The job of investigating any medical inquiries we wanted to look into had to be done a bit more simplistically.
Our lives also existed almost entirely on one floor of a hospital. We alternated throughout the day between Alicia’s room in the Pediatric Intensive Care Unit and the waiting room about 50 feet down the hall. I would occasionally venture down to the cafeteria, although to be honest, I was a bit spoiled with family and friends bringing me up food a couple of times a day. And by food, I mean pecan pie, my almost exclusive choice when asked what I might be in the mood for. To put it out there also, I surprisingly never tired of my love for pecan pie. Go figure!!
Our main source of information and access to resources was by word of mouth. Needless to say we had some of the most amazing and smart friends possible. If you take anything away from the book or this post at all, it may be the lesson to go and find yourself some intelligent, resourceful and talkative friends. You know…just in case!! I’m sort of kidding, but seriously?! We were dealt the royal flush when it came to the group of friends that surrounded us and helped us at every turn, finding out and researching every topic we needed to know about .
Almost every day we received calls from friends and friends of friends as well as friends who spoke with a friend of theirs, etc. (you get my point) in regard to what was going on with Alicia. Programs, resources, groups, research studies and ideas were practically dropped in our laps. Resources, generosity and loving kindness came out of the woodwork.
When Alicia was in very critical condition within the first month or so after the brain hemorrhage, the sadness was overwhelming, more so because it was just such a sudden occurrence. When we moved past the thoughts of fright for even a moment, there was only that lingering feeling of utter discouragement . We could almost see that we were losing the battle, and that was a persistent realization for weeks at a time.
I believe it is almost a reflex though to try and find answers in order to fix whatever new or persistent situations we found ourselves in. This was so true during our early days in the PICU at Yale.
We sat and closely watched what was unfolding physically with Alicia hour after hour. Trust me when I say that there wasn’t much happening at all, like even a little. At that point she wasn’t moving, her eyes were closed most of the time or she was staring blankly off in one direction.
We took subtle changes to the Nth degree. For example, we would play music and have Alicia’s favorite shows on at different points through out the day. We would then watch her blood pressure, pulse and respiratory rate looking for any subtle changes. We were thrilled to see any slight variation from the usual. Along with that, we got into the problem solving mind set very early on.
Incidentally, as you may have surmised, we weren’t sitting down or rolling over when someone told us that we had hit a wall. We listened at all times to what the medical staff had to say, but we didn’t allow them to tell us the bottom line on what was happening with Alicia. We watched and thought and talked and reached out to our friends to do the same .
To anyone who shares a similarly discouraging scenario, one in which you almost feel like giving up. I would encourage you not to! It’s not over till it’s over. Answers bring hope, understanding brings peace, and support and love help bring you to acceptance.
Hope is real and it is a precious gift to share with one another in all circumstances. Never give up; we didn’t!!