Recovery
We were told this is not a sprint, this is a marathon. We know we’re in this for the long haul. What we don’t know is what we're actually running. Is it a half? Full? Ultra? There are no kilometre markers on our route either. We feel like we’ve been running for so long, but perhaps were only at the second kilometer mark. So even with a successful surgery, we have to keep pushing through. We don’t know what’s ahead and what challenges we will face. The next few days was a rollercoaster of emotions.
Penn was recovering well, however, the Keppra and Dexamethasone were taking a toll on her body. She would have significant mood swings after her medications. She became irritable. Unhappy. A completely different kid. She would say things that were so innocent and it broke my heart.
When Penn would ask what happened to her. When Penn would ask where she is. When Penn would ask for her sister. Or when Penn would say, “Mommy it’s not my fault.” Or when she would have bouts of night terrors due to PTSD. There is nothing else you can do but to hold your kid and cry.
There were also moments that were beautiful. We listened to Penn’s favourite tunes on repeat. She would often sing them out loud in between bites of lemon loaf, croissant, cheese or chips. We would carry her and dance in our room. Sheldon would paint Cookie Monster or her stuffed fox upon request. In the middle of the night, if she couldn’t sleep, you could hear her whispering,
“Make me happy
Make me feel fine
Tiny bubbles
Make me warm all over
With a feeling that I’m gonna
Love you till the end of time.”
Penn singing Tiny Bubbles and eating a croissant
Despite our marathon race, what gives us strength and hope are the people along our entire route, continuously cheering us on. The aid stations are there when you need them the most. A warm blanket from the nurse. A friendly check in from the social worker. A gift card to Skip the Dishes to make sure we’re fed. Family helping out with Paige while we live at the hospital.
Penn was determined to go home and five days after surgery we were discharged. We were advised before her surgery it would be a minimum 10 day stay. Penn proved the doctors wrong again! It was the perfect mother’s day gift. Our family at home together. No more leads. No more doctors. No more medication.
We overcame another major leg in our marathon. Before we were discharged we got the preliminary pathology results. We thought we made such tremendous progress and now felt like we were back at square one.