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September 30, 2019 11:32 pm

Day 21: Dialysis again today. We are planning and preparing for Alexanders return home this Wednesday. He will continue outpatient dialysis in North Haven on Mondays, Wednesdays, and Fridays at 12:30pm but needs to arrive by 12:10pm sharp. No other times are available. Construction on the only pediatric dialysis center (which will be located at CCMC) in the state is expected to be completed in the spring. The wheels turn in my head. My stomach turns in knots.

Home and school is in New Britain. Dialysis is 35 minutes south in North Haven. Work is in New Haven which is 45 minutes south. Gas. Mileage. New Diet. Dialysis. Transplant testing. DNA testing. Donor list. Liquid restrictions. Catheter. School. Little brothers ages 6, 5 and 1. No more roughhousing. How do I explain to his little brothers that we need to be careful and we can’t wrestle with Alex anymore? I need to figure out childcare for the little ones. I have mountains of laundry. Cleaning and Decluttering to be done. New recipes and meal planning to be started. Do we move? Do we halt our goal to own a home given all the unknowns? The to do list is longer than an extreme couponers CVS recipt with no end in sight. How do I do this? When will our family return to normalcy? Why did this happen to us? We are a hardworking family that takes little and gives back in so many ways to our community. Where did I fuck up our karma? The tears. So many tears. I’m terrified. I’m angry. I’m sad. I’m anxious. I’m confused. How do I continue to inspire others in a time when I feel so broken? How do I keep a smile when I am so full of worry?

I can’t think about that. “After all, tomorrow is another day”. Scarlett O’Hara, protagonist in Gone with the Wind. I think of my mentor and teacher Ms. Madeline Janover who passed this year. Thank you Ms. J. You give me strength in our memories. You introduced me to one of my favorite movies and the thought brings me comfort.

I reach out to my support system. My sister Lilly Montañez brought Izzy, Imani and Juliana to play today. We enjoyed Clue, coloring and, of course, some video games.

I called my aunt. My guardian turned angel. Titi Lucy tells me not to worry. Alexander will get to dialysis and she will add it to her calendar to help. Tio Mark will help too. Thank you so much titi Luz Catarineau Colville. I’m sorry for being a pain in your ass when I was growing up. I admit I could be a litte shit at times. I’ll take ownership for some of those grey hairs. Hormones, ya know? You were only trying to look out for me and you have stayed in my corner all these years. Thank you both for your patience during my adolescence.

Tio Mark Colville. Thank you for teaching me about Agape love. I feel it, know it, and understand it more every day.

I return to work tomorrow looking forward to a change of scenery and a creative outlet. I can only try to do my best and lean on those who share my passions. My work team at Common Ground has evolved into an extension of my family. Thank you Joel Tolman for you and your wife. Thank you to everyone who prepared meals. Carla Lia you are the champ for those pokemon pokeball shaped waffles. Ashton Killilea my kids chowed down on those bagels and now only want Brueggers. Nyree, Deborah Greig and I know many more CG folks contributed and I’m not sure who but I love you all for it.

Sharyn Lopez my sister from another sisterhood. You embody the spirit of greek life and have been a huge support to me at the hospital.

I am grateful for my sisters of Lambda Theta Alpa Latin Sorority, Inc. Thank you for thinking of my family at Sisterhood Spirit Weekend and offering your support.

JimandMaria Flores, Elaine Maldonado Ortiz and Charles Botts thank you for introducing me to your prayer groups and welcoming us into your spiritual families.

To everyone else who has visited, called, brought groceries, played with my children, sent cards, gifts and words of encouragement. I thank you. Thank you for just thinking of us and praying for us. I may be a little down today and my post a little too long and depressing, but your efforts do not go unnoticed. Do not mistake my writing for complaint. I am humbled by your varying degrees of presence and forever grateful that you have joined me on this journey.


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