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’ve ever had. I cannot make everything perfect for 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 with a different hand. I constantly have to 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. Now he has started to say “mama okay?”. I always say yes, but I wish he could understand it’s not him it’s me. I put so much pressure on myself to try and fix everything when in reality, nothing is broken. Luke is Luke. He is smart, healthy and has the biggest heart. Luke simply has a disability but its 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.