We're home!

After a long ride on I-90 (for some reason traffic in early afternoon was crawling all the way from Boston to the CT border) we arrived home at about 5 PM today. Maya was so excited! She loves the comforts and routines of home. She walked around the yard and inspected her trees (lots of japanese beetle damage on the cherry trees), inspected the refrigerator and tried to snag blueberries (juicy fruits are a no-no), then decided she wanted dinner and tried heaving herself into her booster seat. It is great to see her home and happy.

We are getting used to the regular hydration bag/pump intervals and procedures. They are a hassle but not unbearable. Maya has gone, however, from being a good sleeper to a poor one, and we have her in a "pack n' play" in our room to closely monitor her and hopefully prevent another yank of her NG tube. If so it is a four hour minimum ordeal to get another reinserted at CCMC in Hartford. We were provided some cuffs designed to prevent her wrists from bending and to restrict her thumbs (imagine larger diameter toilet paper tubes made out of cast-like material that closes with Velcro™), which are supposed to prevent her from yanking the tube out, but I discovered tonight that she is like Houdini and handed one back to me three minutes after I put it in on her.

This morning Victoria observed a five year old boy brought into Maya's room for a few hours before his mother's beeper went off and nurses came and rushed him out as if he was on fire. Turns out he was awaiting a heart transplant and one came in. It is inspiring and heartbreaking to imagine the story of the donor and his/her family. I hope the boy does great and the other child lives on in him.

Our experiences with Maya in critical care facilities for children have been life altering. She has for the most part been the healthiest of the sick kids, and speaking with other families and hearing their stories has been humbling. Gratitude and compassion have grown strong in us as a result, and the experiences have made us better people, I feel, as a result of having our priorities reset. I personally have learned to be less judgmental of people who may be expressing anger or insensitivity or just plain aloofness. That may just be their defense mechanism for processing life and death experiences.

So while I hope very few of you ever have to experience such places where life and death are balanced on the point of a pin, if you do, remember to count your blessings and give gratitude for what you still have or what you did have, and do something according to your means and what feels right to help lower the suffering of others.

-Chris