Since Gage was 18 months old he’s been in therapy. He’s been through speech, occupational, vision, aquatics, and physical therapy in addition to extra tutoring (on top of an individualized education plan with goals) for acedemics. Over the course of 7+ years there has never been a time when he wasn’t trying to reach a written, parental-therapist/tutor/teacher goal because he was deficient. Quinnlin is not without deficiencies and goals either. She’s been in or is doing all of the above, with the exception of aquatics and tutoring (so far). Of course, this means as a family, we all have goals to help them meet their goals.

In all of the cases where goals needs to be met (I’m not talking about the next milestone in the kidlet books, I’m talking about knowing the alphabet at age 6) we are an integral part of that goal being obtained. On top of the appointments there is homework. For therapy it was continuing it at home. Body brushing, bean sitting, ball rolling, and muscle building among many.

It gets old…the always being behind and trying to catch up. Some seven years later you’d think I’d be used to it enough not to be tired of it, but you would be wrong.

Quinn is hanging in there. But she had a different start. She goes to an amazing school (since age 3) that has helped her catch up as much as possible for her. Gage didn’t get that opportunity. He was in private therapy until age 4ish and went to a regular church preschool that was unequipped for someone like Gage. His pre-k teacher couldn’t have been less interested in any of Gage’s special needs. He had a wonderful, playful, happy year, but it wasn’t right for him educationally. At age three Gage could have gone to Quinn’s school (he would have qualified within 5 minutes of an evaluation) and he would have had a much better start. I didn’t know about it. It is my single, biggest regret regarding Gage’s education.

Gage is tried of having to catch up. He is under a lot of pressure from us, and his teachers and tutors to catch up. Last year, his first grade year, was The Year in Which We Kept Gage Alive. And Gage is paying for it.

His school has done a remarkable job helping him reach his potential. A lot of this year was letting him hang onto 2nd grade, but really covering the fundamentals of 1st grade. And for Gage, he’s excelled and we’ve celebrated. The outside observer might think, “what is all the fuss about?” His reading and math are hard earned. By him, his teachers and tutor and us. And it is tiring. Day after day we monitor his progress on every little thing. Gage never has the luxury of coasting. Not through a grade, spring break or a summer break.

If it gets old for me, I wonder how Gage feels?

This week Gage started standardized testing and he has been acting out a lot. Lots of “I hate school” or “I hate (fill in the blank)” and there is defiance at school with doing some math work and it is all very painful to watch because he is just making it all so difficult for himself. No matter how many times I try to explain this, he doesn’t get it. I try to explain that I understand he is scared and nervous, but we just want him to do his best. Take his time. Use what he has learned and there won’t be a problem. He’s not buying it. He says he is not scared. I wonder if the coffin dream with morphing colored skin and one thing being another, or him wanting to sleep in Quinn’s room for the past two nights any indication of the stress he is under.

To raise Gage you have to like a challenge of a puzzle. Because it is hard to figure out how best to support him, encourage him, and push him — and figure out when is the perfect timing for the desired results. The line is fuzzy between nurturing mom and drill sergeant.

He’s definitely struggling this week. I wish I could make it better for him in some way. I can only tell him I know he will do his best (I don’t really know if he will) and that he can do it (I think he can) and I understand what he is going through (I don’t, how could I really?) and that I’m here if he wants to talk about it (although I know he won’t).

Gage’s world, educationally speaking, is pretty hard for him right now. But he’s hanging. I’m proud he’s hanging, but I’m about to cry because it is and will always be a struggle for him.