Special Needs Mother

It's not easy being a mom of a special needs child. Sometimes, I forget that this is exactly what I am. I remember when this journey was still in the early stages, I wondered if I could at that time, declare myself a mom of a special needs kid. I guess in some ways, its good to be able to use that phrase, "My daughter is special needs". I have found use in that phrase especially in restaurants. We lug Sophia into this big stroller and wheel her into restaurants. I don't know if you have noticed, but you will not see many, if any, strollers in restaurants. When you have a baby, you typically carry the baby in the infant car seat and put the car seat in a sling. And when you have a toddler, you carry the child in your arms and into a booster seat they go. And when you have a special needs child, you explain to the hostess that your child must remain in the stroller so an extra seat at the table is needed. And when you get the puzzled look, you tell them that she is "special needs". It doesn't help much when we get the stares from other patrons though. They kinda give you this incredulous look: really, lady, you had to bring the stroller in?. There's only three ways around these looks: 1) stare them down and tell them to mind their manners, 2) Announce the words "special needs" to each staring mother, or 3) concentrate on getting to your table and try not to run over anybody along the way. I have chosen #3 but boy would I like to choose #1 sometimes. :)

So, at some point in this journey, I must have recognized that my daughter is special needs and that I am a mother of a special needs daughter. I don't know when that happened. It wasn't always that way. When the seizures first started, I was just the mom of a daughter with seizures. But we all adapt and change and it is what it is.  That label doesn't bother me. What does that phrase even mean? Yes, Sophia is special needs so she has to work harder to do things that come naturally to other kids. Yes, she will never be as fast as your kid, get an A+ report card, try out for the cheerleading team (although I know if she could try out, she would totally rock it!). I'm okay with that. These things, these hopes and dreams we have for our children, do not mean much to me anymore.

 

Sophia has taught me that the important things are far simpler. Spending time with the people you love, seeing the start of a small tooth coming in, painting the most perfect toenails, getting a full night's sleep, playing in the floor with my daughter....these are important things. These things matter. Because when this journey ends, when my heart has been shattered, when my meaning for being is no more, I will look back on these precious, simple memories. I want to remember how soft her skin is and how her skin glows and has no flaws. I want to remember the way her breath smells, how her hair glides through my fingers, how her hand feels squeezing mine. I want to hear the sighs she makes, the squeals, the sounds. I want to feel her weight in my arms, her bottom resting on my forearm, her head on my shoulder with her face turned toward mine. I want to see those beautiful eyes looking at her pom pom, watching it dance and sway. I want to remember the point of her ear, that she inherited from my mother. I want to consume her, drink her in, melt her skin into mine. I want her to live. I want her to survive. I want her to beat this. I want her to be healthy. I want her to.....outlive me. I want her to know that she is my everything. I want her to know that when she is gone, she will take me with her. I may be the one left here on Earth, but the person that I am right now, sitting at this computer, will surely no longer be for I will no longer have my heart. And no one can live without a heart. Or at least, that is what I am hoping and counting on.