I cannot tell you how many times I have snuck into my daughter’s room when she was sleeping to pray by her bedside. Pray for answers, pray for a good night sleep, pray for another word spoken, pray for my daughter to snap out of it and tell me she hates my guts! Just something…give me something to show me that all of the hard work is paying off.
I cannot tell you how many times I have cried myself to sleep wondering if I am doing everything possible. Is she getting enough therapy or am I pushing too hard? Just one more match…just one more sentence…just one more hour of therapy. What else can I do to help her realize that once she opens her mouth to speak, I will never stop listening? I will never tell her to be quiet. I will never ignore her.
I cannot tell you how many times I have wondered if she will ever speak. Will she ever tell me “Mama, I love you” without being prompted? I just want to know why, WHY DAMMIT does life have to be so hard for my daughter. She didn’t do anything to deserve this. Nothing! She is an innocent victim trapped inside her own brain by this horrible disorder!
I cannot tell you how many times I have wanted to throw in the towel. Not just throw it but run over it with my car, shred it into a million pieces and burn it to hell. But I keep fighting through the tantrums, the late nights, the silence and the heartache. She will never know my frustration or disappointment. She will only see how enthusiastic and proud I am when she says “roll ball” without being prompted. She will only see the love and patience of her team of therapists and family that will continue to fight for her.
I cannot tell you how many times I have heard “It will get better, have faith.” I have faith but fighting ASD takes more than faith. It takes a village, literally a village. Without her village of ABA therapists, speech therapists, occupational therapists, physical therapists, pediatricians, genetic counselors, psychologists, community service advocates, disability advocates, early childhood interventionist, family and friends her fight would not be possible. I am eternally grateful for their hard work, sacrifice and dedication to my daughter and family.
I cannot tell you how many times I have forgotten to say “thank you.” We often take for granted those who deserve recognition and we give so little. I am thankful from the bottom of my heart for every person who has worked tirelessly for my daughter, THANK YOU! Thank you for your patience when she kicked you in your face during a meltdown. Thank you for your understanding when she bit your arm when she didn’t want to say please. Thank you for your passion. When faced with overwhelming resistance, you have proven my daughter CAN do it! She is making great progress!
I cannot tell you how many times I have forgotten to celebrate the positives! My daughter now has over a 100 word vocabulary, fewer sensory issues, almost NO tantrums…the list goes on and on. In the words of Johnny Mercer and the Pied Pipers you have to Accentuate the Positive!
You’ve got to accentuate the positive,
Eliminate the negative,
Latch on to the affirmative,
But don’t mess with mister in between.
You’ve got to spread joy up to the maximum,
Bring gloom down to the minimum,
have faith, a pandemonium,
Libel to walk up on the scene.