Navigate Life Texas: Resources for kids with disabilities and special needs

Navigate Life Texas: Resources for kids with disabilities and special needs

An Open Letter to My Friends

11/04/2017 | Published by: Kelly Mastin

You're a good friend. You're kind and nice and fun to be with. I'm glad we are friends. 

But I must say there's a huge chasm between us that I'm guessing you've noticed. That chasm is made by the fact that our lives are so vastly different because of my child's disability. It feels as though we are in different galaxies. 

I want us to relate. I want us to understand. But our lives are so very different. The realities of our day to day couldn't be more different. 

You ask me how I'm doing. I say, "Good!" and try to sound as upbeat and positive as I can muster. 

The truth is you can't possibly understand my "good" or my "fine" or my "normal." I reply with those happy, unassuming answers so I don't have to dredge up the details that would bore you or, worse yet, horrify you. My "good" doesn't mean I'm whistling happy or skipping through the daisies. My "fine" is relative. 

When I say that I'm fine, here's what I really mean:

  • I spent the day fighting with the health insurance company to get my child the supplies she needs. 
  • I spent the morning sleeping on my couch since I didn't sleep at all last night for watching my son's oxygen saturation. 
  • We had to call 911 again today because my teenager wouldn't calm down from his rage. 
  • I'm exhausted from the around-the-clock care of my child. 
  • I had another phone call from the school about some issues my son is having. 
  • I got another call from my child's surgeon about some new concerns. 
  • I bawled my eyes out in the shower after my husband went to work. 
  • I chose this shirt today because it covers the bruises my daughter gave me in her rage. 
  • I keep replaying the image of my son's terrible seizure from this morning. 

All of these things are happening every day. All of them are wearing on me. But I'm hanging on. I'm doing okay. I'm surviving. I'm breathing. 

So even when I answer, "fine," please see past it. Please know that I'm struggling and tired and stressed. But also know that I can't begin to explain my life, my thoughts, and my struggles to you. 

Being my friend means being okay with that. Being my friend means not making me explain everything and understanding that "fine" means I need your kindness and your support. Being my friend means to understand that “fine” means I’m glad you’re my friend, and I’m glad we can pretend that everything is okay for a little while.

Connecting with other parents is so important to well-being. 


Read More Posts from Family Support

Strategies to Improve the IEP Planning Process & Educational Outcomes for Your Child

Learn strategies to create a vision for your child’s future and help them achieve that vision using the Individual Education Program IEP process.

My Safe Place

This article discusses the emotions and coping mechanisms that go along with having a child with a life-threatening disease that is very complex and confusing.

The Value of Knowing What You Don’t Know

There is no truer statement than "You don't know what you don't know." But what is the impact of not knowing? If your child has a disability, the value of knowing what you don't know could be life changing!