Insurance

A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us.
John Steinbeck

I will never forget the moment I found out I was going to have a girl. I was absolutely flabbergasted. It was news that was completely unexpected - I had prepared myself for having a second boy, bathed in all of its advantages, taken out all of Isaac's old baby clothes and organized them for our new baby boy to be. I was excited about having a boy, and genuinely thought that the idea of Isaac having a brother, and us another son, was perfect. When the three lines showed up clear as day on the ultrasound monitor, and the doctor informed us that we would be having a girl, I started uncontrollably crying. It wast at this moment that I knew that I had prepared myself for having a boy because I really truly wanted the experience of having a daughter.
Over the next several months I bought adorable little dresses, talked for hours and hours about little girls names, and designed the nursery that I had always dreamed of. It was all perfect perfect perfect - in theory of course. And as much as I knew about child rearing, this being my second time around, I for whatever reason envisioned having a 'perfect' baby girl. One that came out with pigtails and a smile, running around on perfectly cut grass, eating a Popsicle, wearing a burberry skirt, and red mary janes. I fast forwarded to her at my age, and the conversations we could have together. Who would she be? Would we be alike?
And then Coco was born, and out she came - tiny and perfect... a head full of hair, the same nose I see in the mirror. I looked at her and I thought, wait, I have never imagined what you would be like as a baby! I somehow skipped forward several years, and just figured that my experience with Isaac, which was a relatively easy one, would be what I was in for the second time around.
Several months later, after her diagnosis of hypotonia, and now her diagnosis of aproxia, I am left trying to manage my expectations. Over the past week we have had such huge issues with our Insurance company, and what and who they cover for Coco's speech therapy options, that I was reminded of the idea of 'Insurance'. When you are pregnant there is NO insurance. Of course so many children are 'typically' developing, so most moms expect children to hit certain milestones at certain ages... but again there is no insurance. And when mothers do realize that their child isn't 'perfect' (and every single mother realizes this at one point or another about some aspect of their child's personality or development) I believe they look inward. How can I parent better? What more can I do for my child? What have I done wrong to 'cause' this?
In my case I have had to make a very conscious effort over the past week to look outside myself. As one of my most valued resources continues to remind me, "you have to see and enjoy Coco as who she is, not as her disability."
She is absolutely right. I so often find myself working with coco on vocabulary, instead of just enjoying all of her wonder in the moment. I often miss or don't appreciate huge developmental milestones, because I am looking for other ones. As hard as it is to watch her struggle with things that should come easily, I also have to remind myself that she doesn't know the difference at this age. She is just working as hard as she can work, and hopefully by the time she does begin to notice 'differences' she will have caught up. And... what if she doesn't? Well then I know that the persistence, will, and desire she has developed in order to achieve her personal best will only help her in the years to come.
In many ways I can relate to her, to the idea of struggle, to working hard, to feeling like I am always one step behind. I graduated from my high school ranked 6th in my class, and was able to get into any college I wanted to, but this wasn't something that EVER came easily to me. I was the kind of kid that had to read the text book six times to remember what I needed to for a test. I used to make thousands of flashcards for each exam, and then sit in my bathtub late into the night (so i wouldn't fall asleep of course) and drill myself until I didn't miss one question. I found tutors on subjects that I was having trouble grasping. I got an 860 on my SAT until I took the Princeton review and then got a 1400. I never had a natural academic gift, but I did have the gift of persistence. I have learned over time that it is that persistence that allows me to do anything I have my heart set on.
I carry that mentality with me today. I don't 'expect' to understand things. I expect to do whatever it takes to try and understand. I have VERY high expectations for myself, and for those around me. I am working on that, on my obsessive nature, my fascination with perfection, my inability to just 'be' without doing three things at once, my acceptance of those around me who aren't as persistent, my need to control all situations - even those I have absolutely no control over. I WANT to drill Coco with flashcards until she knows every word imaginable. I DONT do it, but I want to... I WANT Isaac to be diving and swimming the backstroke... but I just LET him play in the water, even though I am certain he is capable at this point. I loathe mediocrity. I want to see my kids live up their full potential, but they need to develop the tools to do this. I can only shed light on what I believe their potential may be, and push them just enough to understand the importance of following through, commitment, and struggle.
And so after our weekend of doing absolutely nothing - no therapy - no flashcards - just playing together as a family... Coco has started using several spontaneous words. Mama, Dada, Isaac, More, Up, On, In, Open, Eye, Hi, Bye bye, Awa (water), Ruff(dog), Moo(cow), E E E (Monkey). She is repeating many other words, but those have all happened spontaneously which is huge.
She is an amazing girl, in fact she IS the perfect girl that I had pictured in my head, with her pigtails and Popsicle on the grass in that plaid dress... she just has some trouble motor planning, just like I have some trouble doing Warrier 3 on my left side, or being patient, or spelling with any degree of accuracy. We all have uphill battles, but unlike Sisyphus who's rock was not cooperative, Coco continues to progress, all while loving the world she lives in, and I believe in her own world she is standing on the top of the hill, breeze in her hair, smiling about all that she is and loves.

Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man can't ride you unless your back is bent.
Martin Luther King, Jr.

The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself.
Friedrich Nietzsche