So busy.

How am I supposed to talk about life and children with disabilities when I am so darn busy???  These are the random thoughts that are flying through my head tonight:

Jeff is interviewing for several jobs.  I have my favorite; the place I really want to be.  I'm nervous about where we'll be living in a year.  At the end of the day, I just want to be where my husband is and where God puts us...but I still have a fav.

I'm not worried about the process of moving and settling in.  It will be hard.  There is absolutely not doubt about that.  It's going to be a difficult year.  We will be living in separate cities for a year as Hannah finishes high school.  I don't want to be apart as a family, but it will be necessary. 

Emily is getting a Canine Companion for Independence dog.  We check in for two weeks of training May 2, 2010.  It is an AWESOME thing for her.  She is so excited.  This dog will be her friend for life.  Her dog comes from an amazing program, we can't wait to meet this new friend of hers.  The timing is killing me.  Jeff could have to be in his new city while we are gone.  The last precious week of being together will be gone.  We all just have to do what we have to do, but how I sometimes wish I had a life that didn't quite tilt on its axis so much. 

http://www.cci.org/site/c.cdKGIRNqEmG/b.3978475/k.BED8/Home.htm

My mother in law is coming to stay with Abby while we are at team training, who knows where Jeff will be?  Who will take Hannah to school?    Can Sarah go to band and chorus?  Can someone else really come in and run my life for me for two whole weeks?  I sure hope so. 

Hannah's prom is Saturday, I just bought her dress today--dress, shoes, earrings, in one quick loop.  I feel guilty about being so last minute, but I really did not have time before today.  She does love her dress, and she looked beautiful, I am so blessed. 

I am speaking at my church Monday night.  I have no idea about how to do this.  I am trying to decide if it's what God is leading me to do, but I'm a little panicky.  What if I completely mess up and no one wants to know the God that lets THAT girl talk?   It sounds nuts, but that's how I feel. 

Jeff and I went to a marriage conference at church last weekend.  That was a good thing.  As much as I am going to miss him when he's gone, it's not easy having him here all the time.  He loves his job, he loves us, he just doesn't love it when he doesn't have both in his life at once.  I used to say that his office was his mistress.  It's who he leaves me for, he always takes her calls, runs when she [the radio station] needs him.  He misses her.  As I'm re-reading that it sounds more sordid than it is, but I'm leaving it in.

We have a complicated, busy family.  I am so glad we have someone greater than us to work out all of these details.  My radom thoughts are probably just make Him shake his head.  He sees the beginning from the end and has known all along how it all fits together.  I can' t wait to watch :)

I mentioned being sick the last time I wrote and how annoying it was.  I just moved past annoying to really sick.  I have felt awful all week.  I haven't finished unpacking from vacation.  Clean laundry is piled up on the couch.  It's been rough. 

I finally went to the doctor today and got the long list of everything wrong with me.  My cold moved to pneumonia, bronchitis, and a sinus infection.  So I am on antibiotics and hopefully on my way to feeling better. 

This is the first time I was really sick in a long time.  Jeff flew out this morning to interview for a job.  I was on my own with the girls.  I don't know if any of you have ever had pneumonia, but it hurts.  Physically hurts.  I did not know this. My chest felt like someone was sitting on it, my head hurt.  I hurt everywhere.  I noticed today that Emily and Abby are BIG now!  Oh my goodness, they have grown since the last time I could barely move and had to pick them up. The most difficult thing was that I almost wasn't able to care for them. I have never felt that way before. It is very unnerving. I think most parents of children with disabilities are terrified of not being able to take care of their child for some reason. I always felt like that was a peripheral fear, it orbited our life, but never quite made it in. This week, as I was dressing my daughter, I was so weak and sick, it occurred to me that I may not be able to finish. It might be unsafe to carry her.

Even though I recognized this morning as an extremely short term problem, I also recognized the possibility of my girls out growing me in the future. I certainly hope and pray that I am always able to pick them up and do the things I want to do, but today I realized that there will be times when I will need help. It really scares me to think of something happening to me or Jeff that changes what we are able to do for our children. It's strange to be worried about not being able to do something I've spent most of my adult life not really wanting to do.

Emily and Abby also have "sensory impairments' to add to the mix.  This means that their brains sometimes process stimulus from their environment differently than most of us.  I'm not sure how it feels to them, but they have a startle reflex to certain sounds; it scares them, it makes them cry and sometimes, it almost seems to hurt them.   We do what we can to avoid these sounds and to try to show the girls that they are safe when they do encounter them.  Emily is afraid of water bottles.  That crinkly noise people make with them drives her nuts.  Abby is afraid of coughing.  I'm sure you can imagine how that went this morning. 

I was alone with her, I had to feed and dress her and get her out the door.  I couldn't run every time I had to cough, and although I did it as little as possible it was still a rough morning.  It hurt her feelings that I would continue to cough around her.  She cried on and off before she got on the bus today.  If I had more energy, I would have felt even worse than I do that her day started that way.

Weeks like this one are probably good for me.  I always have to remember that ultimately God cares for my girls. He has charged me with their care for now, but over and over again He shows me that I have to rely on him and trust him with my girls.

Whiny Hiney

This is a very whiny post and right now I don't care. 

I am sick.  Being sick when you have disabled kids just stinks.  They do not care one bit that I feel bad, they still want to be taken care of.  To be fair, the typical kids want food too. 

It's like when I worked outside of the house and had to go in sick because I burned my sick days when I was sick, but could have made it, then when I'm really, really sick and don't want to stand up, I have to go in. 

I have to unpack from our vacation, I have a fever, I have an ache that in my muscles is the equivalent of being hit by a truck.  Cognitively, I'll admit that the truck is likely worse than this virus. 

It's just really hard to take care of other people when I feel so bad myself.  I know that it would help to just do it and not complain.  I'm just not there yet as a person.  If I feel that bad, everyone has to know it and commiserate with me.  Jeff is really awesome about stepping up and doing more when I'm sick, but it's just too much for one person to do completely alone.  So I have to drag my ridiculously tired achy self up and help shower the girls.

I will feel better tomorrow and I'll jump back in to getting everything done, but tonight I am whiny.  I just called Hannah's cell phone from my bed to ask her to make me soup.  That is just pathetic, but again, I'm having a hard time caring.

So whiny me today.  Yucky, sick, whiny me.  The only positive I can come up with is that tomorrow is a new day and it is very likely that I will not wake up wishing for a teeny tiny short lived coma just to get some sleep.  Thank God for new days :)

Camping

Emily decided she wanted to camp over spring break.  Can you imagine how much fun it is to take a child who can't walk or talk camping?  I have a mental picture of stuffing a wheelchair filled with tired, cranky child into a tent while carrying water on my back.  It's not so good.  Of course it's not even close to reality---even I have better sense than that.

Thinking it might actually be fun and an adventure, my sister and I hatch a plan to meet half way between Florida and Virginia and cabin-camp together with our kids.  Abby doesn't want to go, which works out for me because there is really no way I can handle them both in a situation like this anyway, so I make arrangements for Abby to stay home.  I can handle Emily easily by myself.  It's ridiculous how easy it is to only have one disabled child.  It makes me feel a little guilty.  I'm sure if my entire experience was with one child I would think it was difficult in itself, and I'm sure it would be, but having two is just unreasonable.  I can't wait for the day when I get to heaven and have the opportunity to ask:  Really?

Back to camping.... so we're excited.  Then Jeff loses his job and  the plan changes.  It is decided that Jeff will drop us off at the campground and head to his sisters' house in NC with Abby.  My easy vacation with Em just flew away like a little birdie.

I had to pack for the twins to go two different places, and I will admit it was actually overwhelming for me.  I had to pack everything to camp, then everything for Abby and Jeff.  Two sets of the bazillion things each girl needs was insane.  I actually just sat down at one point and stopped.  I couldn't even think about how to get all of that stuff together and organized because the entire time I'm wondering how I'm going to fit it all in the van.  At the end of the day it got packed and stuffed in the van with us and we only left 30 minutes late.

After a long day, Emily and I are in our cabin with my mom, sister, nieces and my sweet daughters.  It is going to be a lovely four days . 

It is sweet to take time with my girls.  Hannah is almost grown, Emily loves to have some time away from Abby and my Sarah is always up for fun.  It's literally CRAZY getting everyone out of the house, but so worth it.  I hope these are the days my girls remember.  I wonder if they will look back and see their nutty momma sitting in the middle of the living room floor almost in tears because I can't remember which bag I packed the Motrin in, or the Momma I want to be, the one I think I am most of the time?  I wonder if they will remember quiet walks and roasted marshmallows.  I hope they do.  I hope I do. 

So now, off to enjoy this beautiful planet that our amazing, awesome God spoke into existence, and my amazing children~  How very blessed I am :)