Monday, 31 October 2016

The aftermath is MESSY

We are on the road to recovery! 

Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost. He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month. 

Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.  

Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are! 

But the lingering side effect of treatment is always the emotional scars. We know because we have done this before. The aftermath is messy. And it is much harder for others to understand when on the outside things are looking good. 

It started with my daughter. When the dust settled and the height of our chaos was over, she fell first. The uncontrollable tantrums. The inability to play with her peers and her low self-confidence. This all followed months of sleepless nights, fearing her brother was dying. 

Then I fell. After months of holding it together and staying strong for the family I reached my limit. My energy level diminished and I just want to sleep all day. I have no interest in socializing and it's so much work just to move my body. Then the flashbacks. No matter how much I try to push them out of my head, the traumatic events, the devastating words from the doctors keep replaying in my head. The emotions associated with them are exhausting me. 

Now Xavier is showing signs. It happened before. It starts with the nightmares, his own flashbacks of the medical trauma. He wakes up angry and unable to go back to sleep. The memories haunt him at dark. He becomes increasingly angry (this time not from the steroids) but the surmountable emotions flowing within him he cannot explain. He worries. A lot. He worries he will never get better. He worries he will have surgery again.  

I just wish I could take the pain away. 

We are still grieving our old normal as we try to accept once again our new normal. I often find myself longing for May when everything was great and Xavier just learned to ride his bike without training wheels. I look at him now. Fragile. Barely able to walk let alone ride a bike. 

But I tell myself, we will get there! We have done it before and we will do it again. He will surprise his doctors with his recovery once again and life will be even more beautiful than before because of the bonds and lessons learned from this experience. We only get better! There is no other direction. 


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  2. Big hugs and lots of love, Carla. You are all very strong and brave. Let me know if there's ever anything I can do to help. (Karen YK)