To my “special needs” child,
I’ve always hated that term, by the way. It always throws you into a generic box. “Special needs” like that sums up your needs in one statement… (Newsflash, World. It doesn’t.)
I need you to know that I celebrate every small milestone that you hit. Every test you pass. Every new therapy challenge you conquer. To the world, they may seem so insignificant; most of the world won’t even notice. But I promise the tears I cry behind closed doors are all celebratory.
I know you overhear the conversations between me and your therapists and doctors. I know that you know you aren’t “expected” to do a whole lot. But I need you to know that your perfect smile is everything you need in this world. I promise I will always make sure the world knows that you are more than just your inabilities. I will continuously brag about how smart you are and encourage them to get to know you on their own.
I’m sorry for all of the times you hear people’s rude remarks as we pass by. I’m sorry for the times you hear me speak my mind to them to defend you as well. I know I can use some colorful language when necessary. (Oops.) But the way you shoot them your famous smile will forever put them in their place.
I know that your tiny body has endured more than anyone could imagine. 6 major surgeries in your lifetime. 28 scars to show exactly what you’ve gone through. Every day it kills me to think about how much pain you are really in and how much you are fighting through just to enjoy the day with your family.
I also wonder if you could speak, would even communicate that pain to me then? You’ve always been so strong. I think you’d fight through it regardless. Honestly, you have taught me how to be strong. I don’t think I would know true strength if I didn’t have you.
On that note, I have to apologize for the times my patience is running thin. It’s never your fault directly. EVER. Sometimes I’ve just had a bad day and I take it out on you. I really hate when I do that. I know it’s hard for you to tell me exactly what you need and I’m sorry for not always immediately knowing how to help you.
I’m your Mom, I’m always supposed to know. I can’t imagine how frustrating it is to have the words in your head and not be able to get them out. While I am apologizing, I also need you to know that I am sorry for celebrating your new baby sister’s milestones right in front of you. I never want you to feel like you’ve let me down. I absolutely do wish I could hear your perfect voice say “Mama” and reach out your arms to me as well. But none of that matters because you and I have connected on a much bigger level than your siblings and I ever will.
13 years. The numerous nights we’ve spent in a hospital together, both squeezed into your hospital bed. The hundreds of times I’ve held you in my arms and rocked you just because that is what you needed from me, even when you are only a foot shorter than me and we look absolutely ridiculous. The car rides that we sing along to our favorite songs and you tell everyone in the car to be quiet so we can sing. Even the times that I have cried with you through the surgery and post-seizure pain, wishing I could take it all away.
They are all moments I will cherish forever, no matter how hard they may have been. You have made me into the person I am today. You have taught me everything I need to know about life and unconditional love. Every day I am still learning more from you. I am not sure where this world will take us. All I know is that I wouldn’t have our time together any other way. I can’t imagine you being a “normal” (hate that word too) kid. THIS is our normal. How could I ever live another life?
Thank you for loving me. Through all of the tears and bad days. You never give up on your Mama and I promise you, I will never give up on you.
Your “normal needs” Mama