Surviving

This week is vacation week.  More for the rest of the family rather than me.  But I'm surviving, barely. 

I love my children dearly and wouldn't want to be with out them.  However, that doesn't mean that I don't like a little free time.  Why is it that free time never seems to be enough or goes way too fast?  It does with me when I have projects to do.  When I don't, I do miss them.  It's a catch-22.

I also know that they will grow up way too fast.  So even though I'm trying to do a bunch of things -- finish writing my book, finish my oracle cards, work on my website to try and bring in some extra money, sometimes I put it to the side so I can play cards with my eldest, color with my youngest and blow bubbles with my boy. 

This week of "vacation" has been hard on me.  Some days have been better than others.  I have a herniated and bulging disc in my lower back and it runs down my leg.  So between that and lack of sleep, I have been not been in vacation mood.  But luckily last night I got decent sleep.  Interrupted only once.  I could have still slept but I had to get up and get the kids and me moving.

I will however, be glad to get home, if for nothing else, having my bed again.  I bought it last year when back was starting with the back issues.  But there's also pizza and green olives.  That's one thing that I'm really missing here is salt.  But soon to be rectified. 

Will not miss all the other stuff that comes with coming home -- unpacking, laundry, taking care of the mold issue.  But we'll take care of it as we need to -- its' what I we do in our life.  I'm very grateful for our lovely neighbors who help out.  Don't know where we'd be without them sometimes.

Another scary moment

My husband and twins have been fighting what I assumed was a cold for a week or so.  Well here we are on vacation and the cough sounds worse on both the hubby and the son.  I could not get him to sleep the other night and I found out not an hour later.  He started coughing so much that he couldn't catch his breath.  I jumped up and ran him into the bathroom.  My husband followed.  I'm running around getting medicine for him to help with the cough but he couldn't stop to take it.  So I threw on the shower as hot as it would go to steam up the room, then put on vapor rub.  Hubby was trying to get him to talk take his mind off the coughing.  Slowly but surely we got him stopped and medicine in him. 

The next morning, I had hubby run him back home to the doctor.  Turns out it's bronchitis.  So antibiotics here we come.  That of course is giving him a fever.  Poor guy so far is not having fun this vacation.

I still have things going on at home that need to be addressed.  So my neighbor is keeping me posted and I'm sure will help with whatever we need her for.  I'm so blessed on having her as a neighbor.

Then my eldest has found a friend and wants to do everything with her and her family.  I'm trying to let her do some things but not all.  She wanted to go swimming, but with hubby and son away, I had no one to watch the youngest.  So she had to deal with not going.  Instead I made her take a nap.  We were all tired from the previous night.

I can't wait until I go back to my bed .. this one I'm sleeping on, wakes me up when I'm moving.  But today will be a test, eldest is going swimming in the spring fed pool today with me.  Wish I had someone who could take a picture/video.  Because even though I've told her that the water is really really cold (it's actually warm for here at 72) I don't think she understands.

I'm also thrilled that my youngest is walking around with her walker.  The more she walks around the better she will be and working those legs.

Happy my kids are thriving despite being sick.. but I'd like a break myself :D

Vacation

or is it when you have small kids?  Let alone small kids with health issues ?  For me, it's not.  You're constantly having to watch them and make sure they don't hurt themselves and you have to take away your time to be with them. 

However, in saying that, for me that's a good thing (other than my back).  I work so much and have a long commute it feels like I never get to see them.  So this vacation coming up, I'm taking advantage of being able to hang with my kids.

It was a real wake up call to hear the stuff about my son in their testing and observations.   My eldest is vocal and my youngest is pretty good playing with herself.  My middle one I'm now looking back and seeing some of the stuff he does is for attention.  So my son may not realize it, he's going to get it this vacation.

However, I am taking a bit of a break in the mornings so I can finish up my projects.  I have to finish my youngest daughter's story and now start my sons.  But this is the time that I need to get this done.  I've been putting it off for awhile being very busy.  But that's part of what this and my other blog is about.  Help me get back into writing so I can finish the story.

I never knew growing up that I would have these types of kids.  The closest things we had was my cousin who had Cystic Fibrosis.  Most everyone else was healthy.  But I was in college and education major and when I was working, I was always drawn to those with disabilities.  I remember working in a video store and there was this boy in a wheelchair who had a talking board.  So he loved talking to me using his board.  Or should I say telling jokes.  His Mom thanked me for being so nice to her son.  She told me not everyone was and it broke her heart.  At that time, I could only empathize with her.  To me it was sad that people could be that way ..especially with kids.

Now here I am, much older and 3 special kids of my own.  I teach my eldest to be open about her condition.  I mean she has a scar.  We use the story of that she has a special heart and had to get it fixed.  I worry about her though.  She's so out going and so kind that I feel like she's going to be taken advantage of or just hurt because people don't take the time to get to know her.

I am very hopeful there will be some kids her age where we're going and that she'll have at least one that will get her and be her friend.  That's all I can wish for my kids.

Introduction

I'm a mom to special kids (or kidz - as I've spelled my blog).  I'm sure all people think their kids are special and there are even mom's to special needs kids beyond me, but this is just my story.

I'm actually writing a book about my three girls that have special needs.  My eldest has Pulmonary Atresia/Tetrology of Fallot (heart), cystic kidneys (kidney), and congential scoliosis (spine).  My second daughter had Trisomy 18 (Edward's Syndrome) and died due to the complications of it.  My youngest has a brain condition (not named as no one has exactly her condition) and had congential estrophia (lazy eyes).

I also have a son, but we thought he was alright, until he started talking.  So I've had him evaluated and he's still behind, not only with his speech but some other skills.  So, I now have four kids (three living) that are "special needs".

So I decided to blog a bit about what's going on with them, beyond my book.

Here's their picture together just last May:

It's an annual tradition we go out to my daughter's grave and take a picture with all the kids.  I've enjoyed seeing them all together every year and seeing how they all grow.  I will say sometimes as they've gotten older it's hard to get a picture where they're all looking at the camera and smiling.  This was one in about 8 shots :D

No matter what their conditions and what we've gone through and still going through - they are the light in my life.  Watching them battle and often times win their battles makes me very proud to be the one guiding them along.

I make sure they do as much as they can to the best of their ability.  I do not let them get away with "I can't".  Especially without trying.  If they try and they find they can't, then fine, they at least tried and we will try again a little later.  There may be things they never get done and that's OK.  Not everyone can do everything.

I'm hoping to give perspective to others that are in similar positions and make them realize they're not alone.  It's also a good thing for me to write about my experiences because it's a way to look back and see how far they've come as well as give me an outlet to be frustrated (if need be).  Because it's better to get that frustration out and not let it fester.

So thank you for "listening" to me and hopefully you'll like to be on this journey with me...