I Broke A Rule

 At the beginning of this journey  we put down some ground rules for ourselves. Some rules were suggestions from professionals that we'd seen, others were our own. They were along the lines of  "Feel what you're feeling then be done with it and move on, Never pity yourself or Big for the life that we have, Find joy in the little things everyday, Celebrate, Celebrate, Celebrate".

 We make most of them up as we go and usually don't really acknowledge them out loud. It's just something that's understood amongst us. But the one rule/guideline whatever you want to call it that we did discuss out loud on several occasions, I broke. Not only did I break it but Daddy Trouble did too in the same week, which is really rare.

 "Don't look too far into the future. Plan for the next week, month tops, but do not look years ahead. You will lose focus and drive."

These are the words that were spoken to us on the day of Big's diagnosis. We've held to that almost religiously for the most part until recently.

If you've ever seen the series "DarkNet" you'll know where the sudden desire to look forward came from. Daddy Trouble and I sat and watched parents tell about their adult children with Autism, some of which were still living at home or deciding to move out on their own at the age of 30, others were finding jobs through employers reaching out to the special needs community. These high functioning teens and adults with Apserger's and Autism were flourishing in a job culture where technology and the internet enabled them to be social and successful.

 My husband said "I never thought about whether he would live with us when he's older or whether or not he would go to college." I of course could distance myself enough for the moment to tell him that we shouldn't be worried about something that far ahead. "So many things could change between now and then." I told him.

The next few days while looking at house plans, I thought about what he'd said and the segment we'd watched. I saw a plan with an apartment over a garage and thought "We could do something like that for Big." and it kind of snowballed from there. I thought about the possibility that Big's progress could slow to a crawl. He could suddenly just stop building his vocabulary. His emotional coping skills might never improve. He may never be able to keep his balance on a regular playground swing. His little brother may have to take on a much bigger role in his life than we planned. As an advocate or caregiver.

All of these things are small possibilities and likely Big will continue to improve and may one day become a self-reliant, independent young adult who can drive a car, live on his own, build friendships and relationships but the tiny ball of doubt kept me worried.  I am a Mama after all.

I voiced the same worries that his Daddy had voiced to me and he gave me the same encouragement that I had given him almost  word for word.

I feel selfish. I know others in our community who know exactly what their children won't be able to do. They know that they won't be planning a wedding or teaching them to drive. They know that they will have to make plans for their child when they aren't able to care for them anymore.

None of these things are guarantees for us and that makes me feel kind of crappy for feeling down about what our life, what Big's life may hold.

I continued to break our rule for a few extra days. I dwelt on the things we needed to plan for whether they would come to fruition or not. I thought about that garage apartment. I thought about having more children so that Little wouldn't have to care for his brother all on his own. I thought and thought and thought and I realized not once had I prayed for peace. Not once did I stop myself and let go and let God. One of the hardest things for me to do in my walk is let go of things.

 I have a bit of an ego, I will admit that over and over again to whoever needs to hear it, and sometimes I just can't get my head around the fact that someone else might be better at handling things than me. Even God. Sometimes , especially God because I don't want to know that my plans don't line up with His. I don't want to know that His path might be harder even though the end result might be better.

 After a few days I felt the stress and the panic of all of the things I hadn't thought about yet set in. That's when the light clicked on in my thick skull. I was looking ahead. Way way ahead into an unknown abyss that worries parents of neurotypical kids and special needs alike. My child is 3, nearly 4 and I was trying to imagine what apartment layout would work best for a young adult man on the spectrum? Really Mama?! That's a stretch even for me.

I laughed out loud at myself. I had to. There's nothing else to do sometimes but laugh at yourself and take a good hard look at the fear you've created and then let it all go.  That's exactly what I had to do. I breathed in the good energy and exhaled the bad. I let the Spirit fill me with the peace that it had been waiting at the door of my heart with for days.

I looked at my wild haired little boy and let myself see the little boy. For the first time in days I sat and looked in his big blue eyes and saw super heroes and lightsabers and pretend Zombies. I saw my right now and not my future. I looked and saw my youngest being a little brother and not a caregiver, not an advocate. I looked and saw that they weren't bigger or taller than me just yet and that I could still pick them up and hold them like the babies they are.  I saw what was there before I broke the rules.

I'll do it again. I know I will because I'm an imperfect human,I'm a Mama and I'm a control freak. Next time I hope it doesn't last so long. Next time I want to laugh sooner. Next time I want it to be minutes, hours tops that I miss because of worry instead of days. Because this life, the life we're living right now is the best life. Better than I can plan, better than I could hope for.

Live right now and let the rest go.