I have twenty minutes left before Alphonse needs me again, twenty minutes to say thank you to everyone who prays for and with us, who wrote me e-mail and sent me private messages of comfort and hope, and who reached out through the vastness of the Internet to wish us well.
These last few days, I have awakened each morning with sadness and despair in my heart. Each day, I pray and pour all my woes to the Lord for hope, strength, and peace. Today, He has restored my spirit. When I opened this blog, my Facebook, and e-mail accounts after a couple of days of forced inactivity, I was overwhelmed by the outpouring of love and support I received from friends, passing acquaintances, and even strangers. I wanted to reply to each one individually- and I will, I promise– but today, with the clock ticking faster than normal, it seems, I am rushing to clean up and pick up after Alphonse, removing things from his sight and reach and hiding them to safer places.
Yesterday, Alphonse removed everything in our bathroom, from his bathtime PECS cards posted on the wall, to the soap, toothbrush, and toilet paper holders screwed to the wall. There are uneven holes everywhere. (Some of my Sylvanians could probably live there.) He also suddenly took a liking to the computer in our bedroom, tearing the LCD monitor of all its attachments and tossing it (thankfully, one of the nannies managed to catch the monitor), pulling wires and cables with reckless abandon. This morning, he cleaned out my desk and proceeded to lay out the contents on the bed, arranged in some manner of abstract art only his eye can see. He has a new (again!) thing for keys and locks. He removes all keys from their rings and chains and lays them out over and over again. He gnaws on the locks or hangs them everywhere except where they should be. I’ve just finished labeling all individual keys in our possession, in case one ever gets separated from the others. As you can see, each day brings a new surprise for us as his obsession reaches new heights.
We saw his developmental pediatrician the other day and consulted on his case. Her recommendation, aside from all we’re already doing, was to add new meds to his regimen, even as we continue titrating his older medications. We have to keep working on keeping him occupied and busy from morning till night. One of his new meds is supposed to address some of his gut issues while we wait for him to calm down enough to get endoscopic procedures done; the other will help diminish his anxieties. We’re just on day 2 so we have not seen much of an effect yet but we’re hopeful. At least we’re still moving and loking for solutions.
Alex didn’t want me to make a big fuss about this but yesterday was also his 18th birthday. It should have been a day of great joy and fanfare as my oldest celebrates this milestone in his life. Instead, all he got was an hour of our time last night for a quick dinner and not much more. We didn’t even have a cake for him; Alphonse mushed the cake A brought home a few days ago. As much as we wanted to give him more, we know our big-hearted boy understands. We are extremely grateful for his unconditional love for his brother. Belated Happy Birthday, Alex. You are our most precious gift and don’t ever forget that.
I have to run off now. I hear Alphonse banging at the kitchen door, calling my name, “Mamama.” But before I go, I need to thank all those who continue to prop A and me up with their words of kindness and prayers. I am pulling off names from the top of my head so forgive me if I miss or forget some. To Faye, Pilar, Noel, Chat, Mei, Retsiel, Lyra, Mia, Sharon, Bob, Arleen and Pei; to Lori, Candy, Geri, Teacher Julie, Lissa, Aileen, and Just A Friend; to my BFF Carina and my sister Jas, and to all those whose names escape me right now, with apologies for my senior moments – my deepest gratitude for your friendship and prayers. A and I are stronger because of your faith in us. You are our angels.