Wednesday, May 14, 2014

SPINA BIFIDA ASSOCIATION OF KENTUCKY NEW DESIGN SB SHIRTS



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WOMANS RACER BACK TANK   WORD CHOICES STRENGTH OR COURAGE




WOMANS RACER BACK TANK BUTTON


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YOUTH KIWI SHIRTS





YOUTH KIWI SHIRTS



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Tuesday, May 6, 2014

How to help YOUR family when your child is in the hospital

So I recently wrote the blog post "How to help a family with a child in the hospital" and got pretty good feedback. But in writing that I knew that this one was going to have to come next.


Obviously this blog is written mostly from the perspective of a planned hospital stay but some of it can go both ways. Some of it will seem like it contradicts the other post, but really....in the world of special needs it kind of has to....its just our life.


1. Tell your friends what you need. 
Its hard I know. Its awkward. But there are people out there that mean it. You have to take people at their word and just let them and tell them. When they ask answer them. Let them know a meal, a babysitter, something to cheer up your child is what you need. People feel loved and a part of things when you allow them to love you and your family.  You cant spend your life second guessing motives or intentions...just go with it. tell them


2. Meals
Don't expect the world to do it all and take over it all. Get on pinterest. Make a plan and get it done. Freezer meals. They are out there. They are easy. IF you plan. Do it. You will thank yourself. Just don't do it right before surgery. You will be exhausted. (learned that the hard way)  Oh and. Don't try to keep with your perfect whole food meals, making bread from scratch junk. By some easy mac and cheese, prepackaged snacks and swallow your pride and breathe. It will be okay. It will help you get through and well that's what this is about.


3. The Other kids
spend time with them beforehand. Take them out on a quick date. Yes you have 500 other things staring you in the face, phone calls to  make, things to plan. Don't miss this. They need it. They need the security of your time no matter how much you don't have it to give.


4. The home
Don't worry about it. Clean it before and then let it go. really, just stop. let the clothes pile. get paper plates, let the dust bunnies snuggle in. They will still be there. it will be okay.  no one is going to judge you and well if they did....theyd judge you anyways.


5. Our tummy
get yourself some snacks, instant coffee, fruit, pack a cooler, call the hospital beforehand and ask about a family fridge or microwave. it will save you those moments of missing the dr because you ran down to the cafeteria. or more than likely just sat there being hungry. don't take a second mortgage out on your house because you had to eat every time in the cafeteria.


6. Visit
let the kids visit. have the daddy take turns. let the grandparents take turns. its good for everyone. really.


7. The mommy
Think before you speak. NO really. You have so much on you. Things are going to get to you. That fruit snack wrapper  left on the floor will make you feel like your kids are the worst slobs and will end up in juvenile detention at the age of 10. let it go. don't yell at them. Think about it first. Would this be a big deal on a different day in a different situation. Same goes for the daddy. Don't fight over petty stuff that wouldn't really matter. Breathe. Check yourself. Make sure its worth discussing and saying something at this time. Chances are its not. chances are you just need sleep and your child home. Oh and....a girls night out. go out. laugh till you cry. do it. you need it. everything else can wait. (completely laughed till i cried)


8. The daddy
Go out on a date before. Chances are it will be a while until you get to do that again. a long long long while. So do it now. Make it a long one. Make it two. but go. Do one with a movie and no talking, no discussing medical stuff and just chill. And do a coffee night where all you do is talk and get it all out there.  oh and during the hospital stay. Be there. Be ready. Laugh with us , cry with us. Distract us, listen to us. I know you have to do it all, but really you do. We know we ask too much, but we don't know how to do it without you. We need you to follow our hurricane of emotions and meet us there.


9.Learn
Take note. Every hospital stay. Every ER visit. Learn from what you need and what you don't. Simplify. Don't weigh yourself down with too much. EVERY VISIT I forget Tylenol and I always get at least one headache. take note. learn. next time I will not leave without TYLENOL!!!




I hope this helps.  It helped me putting it down.



Saturday, May 3, 2014

How to help a Family with a child in the hospital

My son was recently in the hospital for a crazy 8 days. It was hard. Made even harder by the fact I had 4 other kids who still really needed taking care of.

But always, always without a doubt my friends and family step up to the plate. And thats how Im blogging. I'm not blogging in a "oh you people dropped the ball and should have.." its a "you people did this and well....it helped. we survived. what you did mattered" type of way.



So
How to help a family with a child in the hospital.

1. Dont ask what they need.
We have no idea. We cant put two words together and still make sense,  there is no way we can come up with a list of what will be helpful. (except for now after the fact) We know we need help but we have no idea what will be helpful. And we have no idea what you really mean when you offer help. Did you mean watch kids? Did you just say it to be nice? Did you mean a meal? No idea....terribly awkward. We hate it.


2. Be Specific
Tell us what you want to do to help. Be specific and mean it. If you dont want to do something then dont ask or volunteer. We know when you mean it. Just like you know when we mean it when we offer. We truly dont want you over extending yourself and your family and your finances to help us. It makes us feel guilty and rotten and well....we already have 500 other feelings going through us right now....we cant handle more. only help in a way you can.

To me those are the 2 most important across the board things.  The rest well...they work for us and chances are if a friend of yours shared this then it might just work for them too.



3. Meals
Plan meals for the family left at home and then maybe a couple meals for the first couple days home. You dont know what they are facing. What type of medical stuff they are coming home with. Just because they are home doesn't mean its over....sometimes it means its just beginning. There are awesome sites out there like. www.bringthemameal.com that makes it easy to sign up for meals. But someone has to take the initiative to do this. Heavens knows we dont want to do this for ourselves.  And for all you facebook friends or family out of town. You can sign up too. Did you know that lots and lots of places deliver. All it takes is an address and a little research. Jasons Deli, Pizza, Chinese Food. There are lots of options.



4. The Other Kids
Offer to watch the other kids. And maybe not just offer to baby sit but offer to help the other kids feel special and loved. There is NOTHING in the world like the guilt of leaving kids behind to care for one child. There is NOTHING like the worry that your children wont understand and will  feel unloved. When someone loves you and your kids enough to spend time with them, watch them, take them somewhere special to eat there is NOTHING in the world that takes a little bit of that burden off your shoulders.  BTW just babysitting is great also, but taking it that extra level makes all the difference when it comes to our hearts.



5.The Home
Get someone to clean their home. No not you! Dont even think about it. We will rush around and stress and clean before you even come to clean and pretend like its still a total mess. We need a company or someone that cleans homes that we dont know to come in and clean. Our house falls apart when we are caring
for our child and then when we come home we have 500 other things to catch up on and cleaning isnt one of them.



6. The Car
Its expensive. period. Gas is insane. a gift card for gas wouldnt make us cry at all.



7. Our Tummy
pack a bunch of snacks for us. healthy snacks. unhealthy snacks when we need to emotionally eat. bottles of water, instant coffee, anything you can think of. sometimes we sit there not able to eat waiting for a doctor to do his rounds. because chances are we will leave to go grab a bite in the cafeteria and that dr will show up...its inevitable. so we stay...and well we get hungry.



8. A Visit
A visit goes a long way...but please please dont make it a long visit. We need to know we are thought of and we are cared about. Our child needs a distraction and we need to breathe a little. Come visit us. Dont be scared. Bring a small present from the dollar store or have your kids draw some cards, but come. Dont stay away out of fear of being a bother. Come see us. We need it more than we know.



9. A phone call, text or facebook message
Maybe you cant visit. Maybe your schedule is crazy or you cant handle life right now. (we get it)Or maybe you are out of town. Give us a call. dont forget about us. and dont let us feel forgotten. Dont let fear of interrupting stop you. If we cant answer we wont. If we cant respond, thats okay. Knowing you care and took the time it makes the difference. Feeling forgotten is way worse than feeling interrupted. And we might not ever respond. We might forget but please dont think that in that moment we didnt care. because we did.



10. The Mom
We have the weight of the world on us and we can be a mess. we might get our feelings hurt. we might snap. We might cry. We might laugh. We are a hot mess. Love us anyway. Sneak in some real food to the hospital. A salad or fruit. They charge $1 for one banana in the cafeteria!!!! I just cant do that!! We will tell you not to. We will tell you we dont need anything. Do it anyways. We will love you for it.




you thought i was gonna stop at 10 right??



11. The Dad
The all forgotten individual in this. The one driving back and forth 500xs to and from the hospital. Relieving mom from hospital duty, coming home and being fun dad, trying to keep the house in order so mom doesnt fall apart when she comes home. (never happens I swear) Hes forgotten. Everyone brings the mom stuff, prays for the mom, hugs the mom. Dont forget the daddy. He's trying to do it all. Grab  him a book, show up and tell him to go get a soda, bring him a soda, get a comedy dvd for him. Just dont forget the daddy.




So thank you. Thank you to those who care. who love. who try. for those who do this journey with us. who carry our burdens and who make them lighter. We need you. We couldnt do it without you.