Life never seems to get any easier. I don’t mean to sound ungrateful, because I am thankful for so many things. And in some ways, I look at where I am right now compared to where I was two years ago (in the midst of my separation, my world falling apart) and I can’t believe how far I’ve come and how I’ve been able to find happiness again.
But it doesn’t mean life gets easier.
I just started a new job this past week. I was hesitant, because it’s a startup, so it’s an all-consuming environment. I have come to realize about myself that if I like what I am doing, I am very committed, passionate, and potentially even a workaholic. So I was worried about work/life balance, particularly because the weeks leading up to my starting were already very consumed with work (I was working part time for them).
The week was great, though. I am liking my new job far better than I thought I would. The people are wonderful, the energy in the office is invigorating, I believe in the vision of the company, and my ideas and talents are being appreciated and utilized. There is something to feeling fulfilled in what you do, excited about how you pass your day, that is deeply satisfying to the soul. It maybe begins to skim the surface of what Aristotle called the pursuit of eudaimonia, the Greek word for happiness or well-being, but a deeper version of what these words mean in English—virtue, fulfillment, the life well lived. And speaking of life well lived, I managed to leave the office at 7 every night to get home to Chinese takeout and Mad Men reruns. I think Aristotle would think that’s pretty damn good.
Then Monchichi and I had a doctor’s appointment this past Friday with Dr. Marilyn Agin, a well known neurodevelopmental pediatrician and speech pathologist in Manhattan.
Let me back up a little before I tell you about this appointment. Dr. Agin, from my research, appeared to be the best of the best when it comes to speech delay. She has authored books, is considered the queen of speech apraxia (motor planning), and used to be head of New York’s Early Intervention program, which is the free government program that Monchichi has benefited from—it provides therapies to children under 3 who are developmentally delayed. This is not to mention that she is a pediatrician and a speech pathologist. She must have spent most of her life in school.
We waited over 3-4 months for this appointment. I suspected it was going to help me unlock the key to Monchichi’s speech delay (at almost 3, he’s still not making any consonant sounds, much less words or approximations), and help me prioritize his therapeutic strategy.
It did. Dr. Agin is brilliant, perceptive, and caring. She is far and away the best doctor I have taken Monchichi to for an evaluation—she is thorough and her base of knowledge is deep. From her, I got a picture that was really sobering and hard to take. Monchichi has major developmental issues, and now it’s not just considered “delay,” (because it’s doubtful he’ll ‘catch up’), it’s a disorder or disability. He has serious dyspraxia, which is motor planning, a mysterious disability that involves the brain and its ability to speak to the muscles to tell them what to do. He also has some other challenges that make it hard for him to develop fine motor control and speech, like hypotonia and sensory integration.
Dr. Agin told me that speech for Monchichi is going to be a five-year road. She also left me with a host of new things to do—I have to take Monchichi to see an orthopedist, I have to get him fitted for orthotics for his feet, I have to start him on supplements which she’s found helps dyspraxia, get his blood taken and tested for allergies or deficiencies. When he starts preschool we are still going to advocate for the state to give him therapies (speech, PT, OT and an ABA therapist) outside of school.
I left and went home and sobbed.
There’s a unique relationship between special needs parenting and denial.
My theory is that you can’t get through special needs parenting without healthy and normal doses of denial at certain stages, which God then gently pares away when it’s time to move forward.
When I first found out that Monchichi had a chromosomal abnormality, I told myself that we would aggressively do the therapies through Early Intervention and he would get caught up by kindergarten. As he got older, it was apparent that he would be special ed for preschool. I learned to accept that, and got excited about his special ed preschool program. Then I thought that going to preschool was going to ‘fix’ him, he was going to thrive, and maybe as he got older he would be able to be in a typical classroom for elementary school (“typical” is special needs speak for “normal,” which is not so PC). I also thought that starting preschool was going to take a huge burden off of me, and the great team of therapists and educators there were going to ‘fix’ him.
I keep waiting for the moment when it will “all go away.”
Dr. Agin’s meeting was emotionally devastating for me because it imparted upon me that it’s not going to go away. This is my reality, and it will be as far as I can see. She said that Monchichi will walk (soon) and talk (later), but it’s hard to tell what kind of life he will lead as an adult, how independent he will be. It was so painful to hear, but it’s not something I haven’t thought about. And it makes me realize that how much I invest in him now, and in the coming years (especially given how rapidly kids develop in the early years, until 5), can make a difference in that future. I still have so much hope.
And as I sat in her office listening to her, I had that aching feeling in my heart that is familiar. It’s the feeling that convicts me to change whatever in my life I am able to, once again, so that I can be there for my son.
I don’t know what I’m going to do, as I just started this job. But I know I can’t be in a full-time job given all of Monchichi’s challenges. The doctor told me she does not know how I am doing it. That Monchichi has severe needs that even a two-parent family would have a tough time handling. Friends say that to me, too, and it kind of freaks me out. Should I be having a nervous breakdown instead of walking around smiling?
Anyway, I hope I can work something out with my new job. But if not, then I move on and figure it out. The saving grace of having Monchichi in my life is that it has gifted me with perspective, which brings me some sense of conviction and peace. Which can be hard to come by. Which I had a lot less of before all of this.
But sometimes I say, screw perspective. I just want things to get easier.