There are days that just stink. Period. Some days there are a ton of reasons why your day skids out of control; while other days there is simply no explanation. I know there are times when nothing, short of going to bed and starting over, will make it better. Others can try to jump in and help, but the only thing other people can really do is to just be there. I recently realized that I don’t do that often enough for TJ – just be there.

He needs so much from me every day. He struggles physically doing tasks that come naturally for most of us without even thinking. There are certain areas of cognitive function that are more difficult for him and some days are harder than others. Then there are his emotional needs. 

I can help him get ready in the mornings with my eyes closed. It’s as natural to me as breathing. It’s automatic. I can support him intellectually. If I don’t know the answers, I know how to find them. At the very least, I can help ease the load for him. When it comes to emotional aid, well, I find myself wanting to fix that as well. If I stay busy enough assisting him in life, maybe life will be a tad bit more gentle on him. 

I realized a few days ago that all of the “doing” isn’t all that’s important to him though. This came after watching TJ with his best friend.

ACTION ISN’T ALWAYS MOST IMPORTANT

Our chocolate lab, Willow, needed surgery last week to repair a torn ligament in her knee. The procedure was a success. She did great and got to come home the next day. Craig and I thought through all the logistics of bringing a dog home who would need our assistance to do everything for a few days. We thought through everything from baby gates to medicines. We had her set up in my office during the day and a plan of what we were going to need to do for her at night. It wasn’t until I picked up T.J. from school and brought him home that I realized Willow needed something special, yet simple. 

The day we brought Willow home, TJ couldn’t wait to get home to her. Once we were home, he went straight for Willow, and talked to her. He said “Yeah, I get it. I’m sorry you have to do this.” Then he just stopped talking and simply hugged her. He saw me watching them together and he said something that stopped me in my tracks. He said, “Mom, sometimes we just need a hug.”

There they stayed for a while. TJ just kept repeating “I’m sorry, girl. I get it.” He explained that he’s had surgery too and he knows it hurts. 

I learned a valuable lesson that day on how I can best help my son through this special journey he’s on.

IT’S OKAY TO NOT BE OKAY

For the longest time TJ just sat there, petted her and said “I get it.” That’s all he offered and Willow was in heaven. She relished that attention. She was calmer and less whiney than she had been all day.

I realized then and there that more times than not, TJ needs to be acknowledged, not fixed. Sure, I need to help him, but maybe that help only comes after I set with him awhile. Maybe what he needs first is for his feelings to be validated and normalized. Before launching into fix-it-mom, I will just be in the moment with him letting him feel what he’s going to feel.

LESS IS MORE

He didn’t bring in toys nor treats (although Willow would not have said no to them). Platitudes weren’t offered to tell her everything was going to be okay.

Willow simply got his attention and love. That’s it. Less truly is more sometimes.

I often try to explain his diagnosis to him, especially when it is obviously impacting his daily life. For example, he hates being so much shorter than his peers so I provide scientific reasoning as to why that is. Or he talks about how much his legs hurt at night so I stretch, buy new and improved orthopedic socks to try, and strap him in his boots, all the while talking to him and trying to distract him from the pain. 

No, none of that is bad and it is necessary at times; but it’s not ALL that he needs. Maybe, just maybe, it’s not what is MOST needed.

Tonight, I could possibly say “I get it and I’m sorry you have to deal with this.” 

I look him in the eyes and let him see I’m there. 

I pause the to-do list and just hold him.

Less distraction. Less words. More acknowledgment of his feelings.

JUST BE

If you’re like me, you’re so busy doing the stuff that needs done, that you don’t sit often enough and just be with them. 

You are a gift to your child. That gift is larger than your to do list. The gift is you. 

Being a special needs mom is physically, mentally, and emotionally exhausting on levels I never knew existed 10 years ago. 

It could be that our biggest gift to our child is to show them that we are there with them, showing them that being in the moment with them is important to us. In some instances, maybe we let our emotions show, letting them know it’s okay to be sad. Who knows, we might just show them how much we need them.

This road we are on can be extremely lonely sometimes. If we were in a room together, I’d love to just sit and say to each other “I get it. I hate that you’re going through this. I’m here.”