No I dont have a child with special needs, but this really touched me. If theres any of my friends on here who does, or might, some who dont, I think this will still touch you to. I had a guy with disabilities that was my best friend in high school. My mom worked with kids with special needs for years, maybe one day I can too. Some days, its enough to trick you into thinking you could give up at any minute. Having a child with special needs is tough on the entire family. Some days you watch your child suffer through the unimaginable. You might have expirienced teams of doctors and nurses poking and prodding at your child like they are a sewing project. Days and nights can be consumed by mixing together pharmaceutical cocktails, dangerously high doses with plenty of harsh side effects. Date night doesnt exist anymore, youre lucky if you get to leave the house once a week. You spend many days sitting above your child, with tired arms, waiting for the Bolus feed to finish, counting each notch on the syringe while the level slowly drops. You sometimes find yourself angry or sad at things you shouldnt be angry or sad about. To everyone else, the sound of children playing and laughing on the playground outside is something to smile about, but you sit in your house and listen and your heart hurts, because although your child cant even see, you know she can hear, and you know from the expression on her face that she is listening too. She can hear them laughing, and it makes her smile, but she doesnt know what it means. She doesnt know she is laying inside, and that shes never been down the slide, or on the swings. She doesnt know that the swings exist. Some days, seizures come. For some children, seizures come often. You can see your childs personality shining through, you can see that they are putting up one hell of a fight. But the smiles are endlessly wiped away from her face when the electrical impulses in the cleft in her brain are just too strong, and they take her over. You spend a lot of time wondering, and thinking to yourself that its not fair, and asking yourself and others, what would she say if she could talk? What is it like to be her? What is she thinking, I see that beautiful face every day, yet I dont know what its like to be her, at all. A beautiful face, whats going on in that beautiful head? Will I ever know what its like? It hurts because you care for this person, yet they see life completely differently than you, and you can try all you want but you will never know what its like. That can make a mothers heart crumble. Each time you walk in the room and see your child, what is your first thought? For the mom of a child with special needs, every morning you go to yor babys bed, or every time you walk in the room, the first thought might be is she breathing? So then you lift up her shirt and count the times her tummy rises and falls. If it is consistent, you can take a sigh of relief. The wheelchair weighs more than you do. You struggle in the parking lot to pull it out of the trunk, and you break a sweat in an attempt to wrestle the damn thing together. You notice cars passing by slowly, and you dont need to look up because you already know theyre staring at you. You wonder why they find you so interesting to look at, but if you ever have a second in your day to stop and just look at yourself youll quickly realize why they stare. Because you havent worn makeup in months. Your hair is a frizz ball, and the bags under your eyes could hold golf balls. You dont look like yourself anymore. You have battle scars, and you cant cover them with makeup. Relationships arent the same. You wonder if even your closest family, even your mother, has any idea what youre going through every day. The truth is, you know too much. And you can never un-learn what this expirience has taught you. It truly has taught you to never give up. Because you dont get a break. You dont get a sick day. You cant miss giving a feeding and giving pills every couple hours, because that child fully, fully depends on you and nobody else is going to do it for you. Round the clock care means all day long. The second hand never stops ticking. It doesnt stop because you want to go to sleep, or have a girls day out. It doesnt stop on holidays or on your birthday. But thats ok. Your child makes it easy on you. You will hear a million times, I dont know how you do it People are going to tell you how much you are respected, admired. But In your opinion, you arent any more admirable than anybody else. You are doing what anyone would do in your situation. The minute you had this special child, you were flung into another universe. You settle down there and adapt to your new life, and you weigh twice as much on this planet and feel that weight in your shoulders every day, but you look at your child and realize how theyve known nothing other than this world that is so new to you. This is the only place they have ever lived, and they know nothing of your old universe. Your child is the center of the new place you live in. They are so small, and they have been through more than you will ever know. So you quickly realize, calling yourself strong is a very selfish thing. How can so many people tell you how brave you are, when your two year old has been braver in her short life than you will ever , ever be? Making pills and giving feeding a doesnt seem so hard anymore, because you realize every time youre making that zonogran-onfi toddie, you are using your eyes to see, your hands to grab, your brain to interpret, and youre standing upright on your own two feet, unassisted. You are not the brave one. You give another feeding and complain to yourself because your arm is tired because youve been holding this damn thing for thirty minutes and yor hungry because you havent eaten all day. The feeding is done, and you sit down in front of netflix with your grilled cheese sandwich and your soda and you indulge even if for only a couple minutes. Halfway through, you lose your appetite because you realize what youre doing. You are eating. You can chew, taste, and swallow. You could even have yourself a peice of candy, or ice cream after this. And your daughter might never taste chocolate. She doesnt get to have a milkshake, and she doesnt have a favorite kind of juice. She has never eaten a nugget . You are not the strong one. The car breaks down, and you complain, because you have to walk to walgreens instead. Youre already exhausted, and you dont want to trek this mile, so you put in your headphones, turn the music up loud, and head off on your walk a bit agitated. Youre kicking rocks all the way there, until you kick one and it falls under a crack in the railing of the bridge and it falls into the creek below. You see it land in the water. The water looks clear today. The sun is out, and birds just flew above you. Cars pass by all around. Clouds are in the sky. And you realize how beautiful everything is and how selfish it is to hate to have to walk to the store... Your daughter will never walk, and she will never see the clouds. She will never see a sunset. You have been so selfish. You are not the strong one. Your child is the strong one. And they become your rock. Your motivation to get up every day and make those pills! Your reason to smile, your reason to realize how lucky you are for everything youve got. You can use your hands and your arms and your legs and you take them, and pick your toddler up. She is heavy, your arms hurt and your back hurts and its hurt this way for years. But when she smiles, the hurt goes away and you have the strength to carry on. You walk her around the house this way, upright. You walk her to the window. Let the sun shine on her face. And you let her feel. You introduce her slowly to your world, and she finds it amazing because without you, shed be in her own universe forever. You read to her even if she doesnt understand who Cinderella is. You build her forts made of blankets, and you hang out together inside of them. Even if youre both just laying there, you feel gratification. You carry her with you, and on days where the weather is fine, you carry her outside. You cant go far because out there, youre a fish out of water. But whats off in the distance is only important to you. And it loses its importance when you hold your child in your hands. Because being in your arms is HER world and all that matters in her day. She is your rock, she is strong. She will be there with her arms around your neck through any battle. She is the strongest person in the world, and she depends on you. The next time you receive a compliment you dont feel like you deserve, the next time someone tells you they dont know how you do it, how much they admire you and how they dont know how you handle being so strong, remember that your child is the strong one. You have only done what anyone else would do in your situation, and you do it well. And if your child could talk she would tell you nobody could do it better than you do. You are not strong. You are important. Like Share
Posted on: Thu, 15 Jan 2015 01:20:48 +0000
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