What started out to be a fun-filled day turned out to be a day of reminders of how fragile life can be as well as how different we now need to live. It also reaffirms one of my passions to how as a caregiver you must advocate for your loved one.
This past week, one of my best friends and her kiddos were here visiting us from out of town. It was fantastic! John seemed to be handling the change of his routine fairly well. Although it was drizzling rain, we went with our daughter, my girlfriend and her children, and my sister and her kids to have a picnic at the zoo pavilion. After we sang “Happy Birthday” to my now 20-year-old niece, the rain let up and everyone went to play on the playground. John was beginning to get a little frazzled because there was no way to predict what was going to happen next on the itinerary since it was all weather permitting. Once the kids were done playing and we realized the zoo was closed for the weather my sister’s family headed home and my girlfriend, John and I and the kids all went to The Tom Ridge Environmental Center.
At this point John was still acting normal. We began the self guided tour and it was really awesome. They have displays of the wildlife that can be found at the local peninsula as well as the vegetation and so forth. We decided to make our way to the second floor. Again it was filled with all kinds of displays from types of birds and their sounds to local artwork. One thing John does since his injury is wander off. I was able to keep him in sight but not in close proximity. I felt this was okay since I could see him and he seemed to not be acting out.
As our group started to go to the tower that overlooks Presque Isle I noticed John was still a little behind us in the hallway that leads to the tower. I walked through the double doors, I felt uneasy and although he was only about 25 feet behind me I was not comfortable that he was behind. I decided to go back and wait for John. He normally likes to have independence and will get upset if I “hover” over him. As I was approaching him he looked like he was being silly. Making an odd expression and acting almost robotic. I believe I said, “John, what are you doing?” He didn’t respond. He just kept stiff. That’s when I realized something was not right. At that point he dropped to the ground and that’s when I realized what was happening.
John was having what we would later find out to be a clonic-tonic seizure (formerly known as grand mal). It was also classified under breakthrough seizures since he has been on anticonvulsants (anti-seizure) medications since this past October when he had an un-witnessed seizure. I have worked in the medical field for many years and I was still shocked at how horrid this looked. John was literally purple everywhere that was visible. I screamed for help. A gentleman and a staff person came over. After the convulsions stopped he still did not breathe for what seemed to be an eternity.
I just remember crying out to The Lord begging Him to not take John. Then trying to talk to John telling him help was on the way and he would be okay. He finally began to try to get air. Slowly, oh so slowly he began to get more and more air. I do not know how to describe it other than horrid as his body started to regain consciousness. Thank you Jesus! He is breathing.
We went to a local emergency room via ambulance. One of the men had survived a TBI in the war. It was very encouraging to hear his story. Once at the hospital John was evaluated by the ER and Neuro doctors. Then we were released to go home with instructions to increase his meds in the evening. I was very uneasy with leaving. He just did not seem right. He was excessively giddy and restless. A dear friend picked us up ad we were only a couple blocks away when it happened again! We were too close to call an ambulance so we just laid on the horn as I leaned over into the back seat to protect his fragile brain from banging over and over on the car door.
We arrived at the ER doors and eventually a nurse and stretcher appeared. I say eventually because first the security came out with a wheel chair and so forth. Although his breathing didn’t take as long to come back, his recovery time took much longer and his blood pressure dropped and heart rate was elevated. Eventually, we were admitted for the night and next day. His scans (CT & MRI) came back clear and we were sent home.
We were going home, another new normal, all with the information that it would not be unusual for another seizure to occur in the future. At first, I could not sleep. I would find myself just staring at his face and arms. I was looking for any sign of an impending event. The even more difficult thing was that he didn’t recall any of the events. He felt like his normal. I found myself so upset with him. I just wanted to yell, “Wake up – this is reality – you are not okay.”
As I sit here tonight, I have calmed down. I have given it back to God. It is a battle I face. I like to be in control and in this new life of there is one thing I have learned I cannot control what happens, how it happens, or when or where it happens. I know I will need constant reminding of this, but for the moment I have some peace. I do know God had His hands on us that day. It could have been worse. We could have been in the spiral tower or he could have not begun breathing on his own. Love your family. Hug them and kiss them. Shower them with affection even if they are at the age of it not being cool, because yet again life can change in that blink of an eye.