Tuesday, April 8, 2014

One Day at a Time

I'm a planner. I always have been. I used to write out packing lists for family vacations before I exited elementary school. I sometimes schedule particularly busy days down to 15 minute increments. I refused to share "team copy" duties when I was teaching because the other person wouldn't "do it right" and may not have them a day or two in advance like I preferred. I like knowing where I'm going. 

As a parent you have to let some of that go. As mentioned in my previous post, I'm trying to find that balance. 

But I still see myself looking to the future, planning out family trips, theoretical finances, kid's futures, and job promotions and growth. It's been nice to let some of that go with Johnny. He brings us to the present. I should know that I don't have the plan right for all of us. Johnny showed us that the "plan" sometimes is completely wrong. I don't know what his future holds, but I can take comfort in the fact that all I have to worry about are short term goals and days and weeks for now. Sometimes, I really only need to focus on those 15 minute increments and decide what is best for Johnny (or Mac or Keegan or Matt or me) in that short time span. I think that having a kid with special needs multiples the normal mommy input that takes place sub consciously. All of those constant questions that Moms are asking of themselves all the time, gets a little more frantic and increases in number. With extra doctor appointments, therapies, and work to be done, let's be frank, sometimes special needs simply means more needs. A lot more needs. 

It sometimes feels a lot like my first year of teaching. What you would like to think of as treading water, but looking back was a lot more like drowning. I like to think that I keep my head above water, but sometimes it's just my mouth and nose that stays there. And there are other days that it's probably more like a straw being pressed firmly between my lips, giving me a chance to suck air in and stay alive. 

It most often feels like this on the days I try to plan all of his needs out. All of that weight gets thrown onto my shoulders at once and I begin the research of all the crazy therapies and methods I'm not doing, I begin trying to work in speech, developmental, and occupational therapy all in the same activity (although some of that can be done together), I push too hard in meeting physical milestones meaning naps hours longer than usual (and missing out on more work), and, in general, feeling the obligation more than the love, pride, and honor I want to feel towards my son. 

Now I tell myself, take a moment, focus on now, what is best suited for the next fifteen minutes. Today, it went well. 

This morning- a bottle and snuggles in bed. He held his own bottle and we bonded. I wouldn't change that for the world and so, in itself, that time was well spent. We are planning on working on a sippy cup, but we will get to that another time. 

He sat in his high chair and fed himself breakfast. That is 15 minutes well spent. I am so glad for his ability to feed himself. Some of my friends from the buddy group would argue that as a huge victory at this age. 

I changed his diaper and got him dressed. While doing so, we laughed and giggled, but also looked for his feet and hands as we pushed them through his clothes. I think he is beginning to learn the word feet. Those moments have worth. 

I worked at church today so he spent time in the church nursery with other babies. He chases balls, climbs in and out of different toys, and interacts with other kids his age. That's good. AND, they told me that he recently told/signed another kid "thank you" when the kid brought him his ball to play with. Hello?!? Johnny for the win!

After we went to lunch with a friend and while no deliberate therapy took place, I got some needed checking in on and Johnny fed himself fries, chicken strips, and crackers. He also signed more and all done. What else could I ask for?

This evening, post nap, he and I sat and watched the girls in their gymnastics class. He wore his glasses, practiced standing, and worked out his oblique and core muscles while we waited to their class to be over. I took advantage of the time with him, giving him breaks as needed. Would I have preferred more standing? Yes. But we did what we could. 

None of this may be mind blowing or life altering to some, but it is much needed perspective for me and other parents (kids with special needs or not) to have. Breaking down a day into manageable bites when we have platters worth of "stuff" to do in front of us makes all the difference. And while many people talk about enjoying the small things in life, my focus right now is taking advantage of the small things and the small moments and making sure that, whether it be snuggles or work or time away, each moment is filled with what makes us better. 

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