So while taking a much needed break with a warm bath, I pondered our life and what it has become. I came up with one word that fits- Questions.
Our life has become all about questions. Everyday, we question our choices in parenting- sleeping, feeding, routines, therapies, supplements, medications... are we making the right choices? Are there better choices? Are we doing our best in parenting? We question ourselves... daily.
Then, we are bombarded with questions from our therapist/doctor-of-the-day. What are we working on with Roa? Have we tried this/that? What is he doing now? When is our next appointment for this/that? Do we want to try a new this/that? And after the questions, I wonder...am I answering them correctly? Am I doing ENOUGH? Is he really doing the new things I am saying he can do... or am I just a hopeful parent looking through rose-colored glasses?
Then we move into the questioning of concerned family and friends which really is a Catch-22. Some ask too many questions and we feel overwhelmed. How is he sleeping? When are you going to quit breastfeeding? Is he eating more solids? Is he talking yet... rolling yet... sitting yet? Have you thougth about this new therapy/idea/option? What do you need from me?
Others don't ask a single question and you question why they don't care.
As I write this, I guess it all is typical for any parent... the questioning, that is. Every parent has to report to caring family and friends about what their child is doing, saying, eating,.. now. However, with a child with special needs, each answer to the question comes with a little stab to your heart because you YEARN for you child to be MORE. Each answer makes you realize that something isn't happening quite yet and you pray it will soon. Each answer brings MORE questions about your child's future....
So, to answer the current QUESTIONS:
How is Roa doing with ECFE class? He likes to watch the other babies play, but needs help actually manipulating the toys himself. It is a good experience for Roa. Very emotionally difficult for Mama.
How is Roa doing in his new prone stander? He likes to be in it and enjoys interacting with you in front of him. He is tolerating time in it for 30 minutes 2xday and as long as you entertain him, he is a trooper. He is tolerating his AFOs and thumb splints without much fight.
Is Roa talking or communicating? He has said "ball" various times this week. Am I sure? 90 percent. He is gesturing towards things he wants. He is not signing even with a sign language prompt. He is babbling alot and making new sounds. Are we sure he understands language? 100 percent sure.
Is Roa moving on his own? Not yet. No rolling, crawling, cruising on furniture without us initiating the movement. He still likes to walk all over the place with us holding him.
Is Roa sleeping better? Varies night to night. He has been sleeping better the last week with the suggested changes from Dr. Garcia, sleep man. He is currently getting top and bottom morals so as typical, doesn't sleep well.
Is Roa eating better? Roa loves to drink juice, water, rice milk from a straw, sippy cup, and is working on the regular cup. He is eating more food, but still likes pureed foods and gags on mashed foods. He likes having our regular dinners pureed. Roa still breastfeeds around the clock and really prefers it to solids. Are we concerned? Of course, but the feeding team at Gillette told us not to worry, it will come in time. Is his cerebral palsy affecting his eating? We don't think it is his CP, but the fact that his reflux affect his eating habits.
Please don't read this and think you must stop your questioning. Please don't read this and think you have to start questioning even if you really aren't that interested. Please just read this and contemplate being in "our shoes" for a day.
It's always good to question "What if my life was different? Keeps you humble, grateful, and empathetic to others. I ask myself that question everyday. Along with a few other questions.........
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