Back at home, my house was under construction, pouring walkways, making ramps, widening doorways and putting in a roll in shower. Our days were a combination of around the clock doctors and nurses, physical and occupational therapy, Hoyer lifts, bowel program training, group therapy, and terrible hospital food. There were many visitors and well-wishers. Friends that went silent and friends that stepped it up. Most days was like walking in a dream. I gathered as much info as I could handle or couldn't handle. This went on for nine weeks. Zack was released from the hospital the week of his 16th birthday. I kept hearing the phrase “New Normal” I didn't want a new normal! I wanted things back to the way they were. I wanted to hear Zack storm through the front door after walking home from school, coming in hungry and picking on his younger siblings. I wanted to tell him to keep his hands to himself. Now, he couldn’t move them. I was trying to remember everything taught to me, and definitely missing the nurse help button.
We would lift Zack into the truck, I’d drop off my two youngest, as they were now Kindergarten and second grade, then drop off my 8th grader at his Jr. high. We would hit the freeway, drive one hour and 20 minutes to a recommended physical therapy place. Zack worked out three hours while I talked and processed with other family members of paralyzed loved ones. I then drove back the hour and 20 minutes just in time to pick up the three kids from school, go home lift Zack out of the truck, in the house, onto bed, onto commode chair for bowel program, shower, re-dressed, dinner homework, and bedtime routine for Zack.
For years, Zack would need something during the night mostly to reposition him after a spasm made his legs curl up to his chest. We finally figured out we could tie his legs down, we use motorcycle tie downs. He needed water to drink, we figured out a camelback (hiking water pack) works well at night time. After three years I was able to sleep through the night. Our first large goal was achieved. We found having small and large goals really help to keep moving forward in a positive direction.