Being a mother is hard. It’s mentally and emotionally taxing in unimaginable ways. Having a child with special needs multiplies the difficulties tenfold. As the mother of multiple children with special needs, there are many, many days when insanity reigns and tears flow like the River Nile.
And I wouldn’t have life any other way.
I met with a Parent Advocate today to discuss how to approach the school, and what laws I needed to be aware of, and what jargon I needed to be familiar with, and what paperwork I should never give them outright (things I will always need my own copies of). I was so appreciative that someone understood how hard I fight for my children. How much I love them. How very much I want what is best for them. My Parent Advocate was my hero today. She saw me, a simple mother … often looked over and belittled by professionals, both academic and medical … and she understood that I know. I know my children. I know their needs. Like no one else can, I can see their full potential and where they need the most help so that someday, they can reach it.
And it was a great reminder to me. To take that time and defend my children. To advocate for the best in them. To demand that others see who they are as a whole and not just as some disorder or a list of symptoms. My children are beautiful. My children are brilliant. My children are lovely and loving. My children are thoughtful and helpful.
My children are mine . . . but not mine alone. They are on loan to me that I might guide and protect and nourish them the best I can. To love them with all I have each and every day so that they can someday learn to love themselves and others. I am their steward; I am to help them to learn how to navigate their bodies and to remember that their sweet spirits truly are not their bodies.
Their bodies are temperamental.
Their bodies are impatient and impulsive and compulsive. Their bodies avoid all the yummy food I make and vomit at the word ‘spider’. Their bodies get tummy aches at the smell of rice and garlic bread. Their bodies hate the color yellow and the sound of balloons popping. Their bodies have allergies and asthma and hearing loss. Their bodies have nervous energy and anxiety and paralyzing fears. Their bodies stutter and stammer and have a hard time communicating. Their bodies are also growing and learning and developing every day.
Their spirits take my breath away.
Their spirits ask the great questions: Mom, someday will I love my children like you and daddy love me? Mom, will I be as good a dad as daddy? I really want to be a funny dad. Mom, Heavenly Father knows me, doesn’t He? He follows me everywhere and sees me, doesn’t He? I can feel Him watching. Mom, when will I look like other kids do? When will I feel like I belong? Mom, when I die and I am separated from my body, then I won’t stutter anymore, right? Mom, when did you know you loved daddy? When did you know you wanted him to be our daddy? Mom, why does rice make me barf? Mom, why can’t you see inside your own head? Mom, do you love me the way I am? Mom, why are you crying?
Their spirits give me inspiring insight: Mom, Heaven is right here. We can’t see it, but it’s all around us and Jesus is right here. Mom, have patience with me; I’m just learning. Mom, forgiving is hard, but if I don’t let it go, then it sticks to me like tar and I can’t get it off and it suffocates me. Mom, the world is a beautiful place. Mom, I love coming home; home feels so good to my body. Mom, relax. Mom, I know what to do; give me a moment. Mom, when I am scared at night and I know you are asleep and don’t want to wake you, I pray and then I’m not scared anymore because the Holy Ghost protects me and makes me feel safe. Mom, oranges do not taste good right after you brush your teeth. Mom, this permanent marker doesn’t wash off. Mom, when I grow up I’m going to be a paleontologist and a marine biologist and an engineer to build robots, and an actor … because I can be anything I want to be and everything I choose to be.
It’s so very easy to get lost in the daily grind of appointments and medications and meetings and paperwork and schedules. It’s so easy to refer to my children by their “disabilities” because so often I am trying to advocate for and facilitate their needs and gain access to the services that will best help them. But it really isn’t about all that. I mean, in the end, all children have special needs that are special and unique to them. We all do. But those needs should not define us. We should never be defined by what we are lacking or by our weaknesses.
So I’m hoping tomorrow, as my children come downstairs, sleepy-eyed and yawning, I can greet them for the people they truly are, that I can remember to not get lost in their needs, and that I can focus on their lights that shine so vibrantly when I let them … or rather when I choose to see them. I hope that I can be energized by their curiosities and wonderment, embrace some of their impulsiveness, throw aside some of the routines, and enjoy them while they are mine . . . that I can remember the very things I love.