Our New “Normal”

This week is normal; in fact it is so normal that it actually feels abnormal. We don’t  have any doctor appointments, therapies, or specialists. I’m not expecting any phone calls for scheduling or testing or updates. It is just a plain old week. And as much as I should enjoy it, it feels wrong, like I must be forgetting something.

Timothy sitting on the couch smiling. He is wearing a blue sleeper with a polar bear on it.
Smiley Timothy.

Ever since we started this journey with Timothy’s Leber Congenital Amaurosis (LCA) I have gotten accustomed to the busyness of it. There seems to always be something going on whether that be an appointment, or two, a therapy, a new doctor, a follow up phone call. I don’t really remember the last week I had without at least one of the above.

Although this is an unusually quiet week, I can just look at my calendar for the next 6 weeks and realize that this is the calm before the storm of all of the above and then some.

Yet something about the quietness of this week has my anxiety going wild. After shrugging it off as just anticipation for the crazy month and a half that is creeping up on me, I realized it actually isn’t that at all. Instead it is the fact that all the busyness is what feels “normal” to me now.

Having a child with special needs comes with a lot of moving pieces and I have been organizing those pieces into our lives for about 7 months now. In a way it feels like it has become our life. So when we have a chance to sit back and just have a quiet week at home it just doesn’t feel right.

This is a part of special needs parenting that I really struggle with; the right to feel normal in abnormal circumstances.

Hailey holding Charlotte to go down a slide. They are both happy.
Playtime with our girls.

I think it confuses other people who haven’t been in this situation to think of weekly appointments and a lifelong disability as being “normal” but for us special needs families we need to regain a sense of normality in our life after the initial shock of a disability diagnosis.

 I get more comfortable with Timothy’s diagnosis every day.  The little details of his nystagmus (jumping eyes) or him not making eye contact with me have become less obvious and I can go for hours in a day without even thinking about him being blind. He is just my Timothy, he interacts with me how he always has, and he interacts with the world as he always has. And to us that is normal.  

I get used to running around to all the appointments and in a way I enjoy it. Checking in with Doctors and starting new therapies makes me feel like I am doing something to help Timothy thrive.

Yes there are still days where I am completely overwhelmed by my schedule and how I will make it all work, or completely heartbroken over the dirty look Timothy got at Wal-Mart because he was going cross-eyed (which is actually called Strabismus  by the way).

A big part of acceptance and moving forward is finding our new “normal” and being able to enjoy our family fully just the way it is and that is what we are learning to do every day.

So I hope for other special needs families out there, you can also realize that we all deserve to feel normal regardless of if your “normal” is different from others.

Timothy is sitting on the couch. He is wearing a t shirt, a blue batman baseball cap, and black sunglasses. He is smiling.
Our cool dude.

Thank you so much for reading about our journey.

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