Special Manners 101 - Its Not As Easy As It Seems But...

~ he saw me lost and he saw me found
and I said "I don't know what I've
been lookin for, maybe me" ~

Twin Rocks, Oregon by Shawn Mullins

Special Manner #105: Even the most together of caregivers, the ones who are on completely stable ground, have moments that make them want to call it off, throw in the chips, and walk away from it all. Typical parents of typical children get tired, lonely, and over whelmed. Why would it be any easier for those people who have to deal with life, and then the extraordinary extras of being a caregiver? Awww BUT there are rewards that make it worth fighting through.

I read a great article about how frustrating it is to try and get people to understand why we fight so hard for our kids, to listen to the needs and reasons of those we care for, and why some of us give up. A few parents have taken both their own life and that of their child and some of us understand the feeling behind it. We don't condone it, could never do it, but boy, do we understand the hopeless lonely feelings that are part of that road. 

Some nights you get no rest. Night terrors aren't just for the child since you must be there to see them through. They might not remember them but the image of your little angel screaming like death is standing over her kind of sticks with you. So do the bruises from the kicks and the bite marks on your shoulder that makes your in-laws think you get a chance to be wild with your husband. Yeah, sure!

Awww But.... there are also quiet nights that have no pain, no fear, no unexpected crisis to keep you up. Now you can't sleep because you are used to not sleeping so you sit on the porch, head leaned back, listening to something you rarely get to - quiet. Pure Heaven.

Doctors, therapists, schools, family, friends, house chores, bills, work, fun, dinner and breathing all have to be juggled and dealt with. Not just your own but you have to maintain it all for every person in your home. Your full time job is 24 hours long with few breaks and a paycheck that isn't always as big as you deserve. You try to keep it all straight. You write it on the calender, keep files, and hope you don't forget this or that. You figure out what HAS to be done and what can be put off and hope you guess right.

Awww But.... There is the fights to get everything your family needs and they leave you worn and sore - inside and out. Then it gets dark and sad and a smiling little girl walks up to you and signs "I love you" and the light starts to come through. Your little guy says a word that you have never heard before and suddenly the hours on the phone trying to find a speech therapist, getting funding, scraping up the money to pay for it when there is no funding, it all is worth it.

It would be so much easier to never go to the store, never fight the crowds, never go to the playground, or anywhere outside our safe little home filled with its toys bought with therapy in mind, scribbled on walls, and the known dangers. It would be so much easier to pretend the knowing looks aren't judgments but support. It would be great if he could use a potty instead of diapers so people wouldn't talk about how lazy he and his parents are. Its a battle to leave, it is a necessary evil, it will help them in the long run. Still we are tempted to lock the door, lay down, and forget the world turns out there.

Awww But... Then you are in the therapy waiting room and parents start comparing the journey to find shoes that will work with the braces. It takes days, miles, and money. When you hear that you aren't alone, it makes the journey a little easier. When you go to that store and get the looks because your crying kid doesn't understand that you can't afford his favorite juice this trip, but as you are leaving an older couple has checked out and slips the juice into your basket, you can't help but know that you may be all right when the day is done. 

The Manner: Understand that you can't know what is going on inside the caregiver or the person fighting to make it in our world. I don't care what you've read, what celebrity has cured their kid, or what the latest scientist says caused what, nothing compares to living it day in and day out. 

So don't judge. As simple as that and you can make a difference.  

If the house is a mess, ignore it. Be supportive where you can. Offer to take the other children for a while when its therapy time. It isn't hard to find away to ease the burden of your friend or family member. A casserole, a video time out for the kids while you let mom take a shower, or just an ear to hear about the latest B.S. from the insurance company.

Awww But... don't ever think that our child isn't wonderful just as they are. For all the heavy we carry there is the rewards of being this special person's parent. They give love in ways that are different but in some ways much deeper then what we can get anywhere else. They find ways to make us smile when we don't really feel like it and they don't even have to work at it.

Having a special needs child isn't a curse even if it isn't a cruise. We may be forever changed, it may be horribly hard some times, and there are times when we want to see it change for the simpler - awww but really we grow for the better, we learn how to be stronger, and we learn that the little things are to be treasured. Life is good even if it is rough. I wouldn't trade my kids... typically functioning or not... for anything, any reason. 

The only wish I would want is that they know happiness, health and love for who they are, as they are.  

☮ & ♥ Know you are not alone, we are all in this together.