Sep. 18, 2022

Not all Pathways are Paved the Same

There is a difference between “my child is GIVING me a hard time” and my child is HAVING a hard time.” Understanding the difference has been challenging but everyday gets a little easier. Motherhood has been the hardest, but most rewarding job I have ever had. I cannot make everything perfect for my oldest Luke. Sounds, lights or too much stimulation are triggers I try to control. His balance, muscle tone and speech are a constant work in progress. At times I am frustrated and overwhelmed. Sometimes I need to hide in the bathroom to breakdown and cry completely. I feel guilty and ashamed that I wish he was dealt a different hand. I constantly must remind myself to stop comparing him to others and embrace the journey. His journey. I need to focus more on his strides and not the delays. I need to look at his appointments, doctors’ visits, and tests to recognize them as stepping stones, victories in his journey.

Watching him overcome so much has taught me to never give up. Having a second child who developed normally showed me how hard he truly had to fight to get where he is. I feel so bad for all the times I looked defeated. I put so much pressure on myself to try and fix everything when, nothing is broken. Luke is Luke. He is smart, healthy and has the biggest heart. Luke simply has a disability but it is not what defines him. We fight for our kids with disabilities and are often left with little time or energy to care for ourselves. If any mama can relate and take something away from this post remember you are not alone. The truth is disability is just a matter of perception.