"Is Jesus Santa's son?"

I've felt impressed this Christmas season to concentrate on the true meaning of Christmas. I've never ignored the fact that "Jesus is the reason for the season" but I've never really dwelled on it either. Christmas is what it is...Jesus' birthday and a time to give and recieve gifts. I think my change in direction has come about because of Cade. He's 5 and very observant and inquisitive. He also never forgets anything you tell him or he hears from other places. He's at the stage in his life (so far) where he's really trying to figure things out. There are a few things that prompted this change...
Every holiday I buy window clings for our front windows. Last Christmas I had snowmen, christmas trees, stars, santa, etc. This year I bought snowmen, candy canes and a Nativity scene. Cade was super exicted b/c he loves putting them up everytime I buy them. He picks up the set with Mary, Joseph and baby Jesus in the stable and says "Hey, this isn't christmas". I thought "oh crap, my kid doesn't know what a nativity scene is!" I haven't put mine out since the kids were born b/c frankly, the pieces would be used as toys. Just ask the poor Superman and Batman ornaments who are missing arms. I proceded to explain to him what a Nativity is. Of course he knows that Christmas is Jesus' birthday but he's only 5 and won't put it all together without prompting.
Then there was the letter to Santa that ended in "I love you, Amen". and while we were in Family Christian bookstore there was a statue of Santa Claus kneeling over baby Jesus in the manger. As i'm looking at it I think to myself "that's kinda sacreligious" but Cade says outloud "Is Jesus Santa's son?". I assume that's a reasonable question given his age and how the statue was on the same display as the Nativity sets. Good thing we were there to buy a book about the "true Christmas" story.
Don't get me wrong, I'm all for Santa. I think it's fun and exciting for kids (and parents too). I don't believe that kids believing in Santa Claus is going to mess with their minds or anything. But this is the first year that Cade "gets" it. Last year he was hip on the idea but didn't put it all together until presents appeared. This year he is all over it! He's very aware of where Fred (our Elf on the Shelf) is at all times, he tells Fred if Aly did something wrong, he told me he heard that Santa has a naughty list and he counts how many days are left-everyday. On the flip side of all that he comes home from school telling me about Gabriel, the angel that came to Mary, and the shephards that came to see Jesus. He was flipping through his Bible the other day (keep in mind he can't read yet) and I asked him what he was doing and he nonchalantly said "reading the Christmas story".
I guess it just proves that when you have kids your thought process changes. I have always known the "true meaning of christmas" but never really had any reason to think much about it. But kids will challenge you to think deeper. They don't do it intentionally but they do it, nonetheless.
When Cade was 2 I bought the book "The Night before Christmas". I have read it to him and Aly at bedtime every Christmas Eve since. I decided this would be a tradition but they have been too young to understand it so far. I was thinking about this the other day and realized that Cade will understand this year. I think reading "The Night before Christmas" is a great thing to do b/c it's a great story but he also needs to hear he real story. Some traditions we start new and some we carry from our own childhood. Every year of my entire life on Christmas morning all the Eichele's sit in Grandma's living room and she hand's the Bible to one of us and we read the Christmas story. As a kid we'd think "aw come on, we just want presents" but it didn't matter, we sat through that story. If we were lucky whoever was reading would want presents too and they would read fast! It's taken 31 years to appreciate those moments. So this year and every year after at my house, before presents are opened, we will open the Bible and read the true story (thanks Grandma).
What I have learned from all this is that even though I know stories, truths, or anything else-my kids don't. It is my responsibility to make sure they do. I can't take for granted that they'll just "pick it up along the way".
As we were looking at kids books in Family Christian, Cade points to a book cover and says very suprised "hey mom, Jesus can walk on water?!" I said "yep, he sure can"...we'll save that story for a different day.

Who am I?

"Who am I that the Lord of all the earth, would care to know my name, would care to feel my hurt..." that's the first line of the Casting Crowns song...I've thought alot about that song today. The blowout with my insurance company yesterday left me feeling angry, frustrated and helpless. I felt like I had noone on my side that could help me. I was told I needed surgery by a very "fancy" (aka smart) doctor. My insurance company was not allowing it. I very simply stated to God that I trust Him, I know He is bigger than my insurance company and I know He will make a way for this to happen. At day's end insurance said no, surgery (for today) was canceled and I had an appt with another doctor for today in Indy. This new doctor is an orthopedic onocologist also but apparantly "in network" with my insurance unlike the first doctor. There is 3 in the state and I get sent to the 1 my insurance won't cover. Why someone at the referring doctor's office didn't check on this earlier is beyond me but I'm not going to beat a dead horse! So I was starting over. I went to new doctor today who asks me if I would still want surgery if he could tell me this was for sure NOT cancer. Well, I don't know b/c I was told I had to have surgery b/c this mass was what was causing my pain. After talking to new doctor and him pushing, pulling and twisting my knee (the only doctor out of the 4 I've seen to actually TOUCH my knee) he tells me that having surgery won't help the majority of the the pain and there is a chance actually worsen it over time. The 2 falls I've had are the actual cause. He could remove the mass but the issue would still be there. So there are some things we are going to try first instead of jumping straight to surgery. After leaving his office I was sitting alone in the hospital waiting for Scotty. It occurred to me that my short 2 sentence prayer I said yesterday WAS answered. I asked for God to take care of it and He did. He didn't change the insurance "god's" mind b/c He had a different route for me to take. If I had gotten my way and God "fixed" the insurance situation I'd be recovering from major knee surgery right now. Surgery that I probably won't need and definately don't need without trying other things first. It humbles me to know that God cares about me, even in the small things. So the song from Casting Crowns won't leave my head. "...still you hear me when I'm calling, catch me when I'm falling, you told me who I am...I am Yours"

Really???

So my last blog was about letting go and letting God be in control. when i wrote it i didn't mean that i wanted to test the theory anymore than i already was. If the devil is scared of me and i'm doing good things or whatever else you want to call it, i really think he thinks too highly of me. i'm not a blamer of the devil for all things bad but come on! or maybe God is testing me. are bad things always a test of some kind? have i not proven over time that my faith will not waver? i trust Him and as much as i want to say that i'm not scared b/c my life is in His hands...i kind of am. i don't like needles so the needle they are putting into my knee on monday does not thrill me at all. i also don't have time for this. i have to concentrate on aly and what she needs and keeping her well. i can't be sick. i can't have surgery and be unable to walk for any amount of time, whether it be short or long. i have things and people and girl's trips and outreaches and christmas's that are all counting on me, i don't have time for this.

not a new phrase...

"Let go and Let God..." it's def not a new revelation by any means but it's what came to me as i was laying in bed last night. it's also not a new revelation that the people closest to you can hurt you the most. if i can find something wrong with everything and everyone does that make me too cynical or is there really something wrong with everything and everyone...?

these are the thoughts that went through my mind last night. i came to a determination "Let go and Let God...". i'm not going to worry about aly anymore. i can't change it so why worry about it. i could spend all my energy in protecting her and shielding her and putting her in a bubble but that's not going to help anything. she is still 2 1/2 and has the mind of a 2 1/2 year old. which means she's strongwilled, independent and smart. so i'm going to treat her like the 2year old she is. God is bigger than germs. now i'm not going to be reckless and take her to chuck e cheese or anything but i'm going to be realistic. i know people must look at her and wonder what all the fuss is about. it's not like she has cancer or is so developmentally delayed that she can't function. and i assume when people hear about her and then see her they question the validity of her illness. so i feel like i need to "validate" how sick she really is. b/c in reality she has an incurable illness that the majority of people know nothing about. after all, if we weren't living it we would know nothing about it. if she "looked" sick then people would "know" she's sick. i shouldn't expect people that aren't in our situation to understand. i assume the people closest to us should understand but i no longer expect them to. i do not look at aly as a "problem" but maybe i seem like i look at her or the situations that arise b/c of her as a problem. i guess i could choose not to live a "normal" life and have "normal" things but that's not the way we choose to do it. maybe if she lived in a hospital it would be more realistic to other people and we wouldn't be judged on what we have or don't have or do or don't do. but i assume too much. and i no longer assume.
she is in God's hands and i know that. i do not want sympathy for us or for aly. she has been prayed for a hundred times. last night it came to me "let go and let God". now what God is going to do i have no idea but for now we will wait and see.

Reason but no solution

Our trip to Riley yesterday was to see the Genetic counselor, get results, and talk about our options. We already knew that they are pretty sure she has a mitochondrial disorder. In order to (hopefully) confirm this they are going to do a muscle biopsy of her thigh muscle within the next month. They will also take a skin sample at that time too. There is still a 20% chance that she has a disorder of the Factor V (five) gene and that can't be caught on a muscle biopsy because science isn't smart enough to catch disorders of that gene yet.
Even though they will be able to tell us if she has a mito disorder they still will not be able to tell us what to expect in her future. An example of that would be that now we know WHY she doesn't gain weight but they can't MAKE her gain. Since mitochondria is in the cells of the muscle that make energy then the organs that are made up of muscles are the most affected: brain, esphogus (sp?), stomach, heart, liver, vision and hearing. Bright side right now is that she is not severely affected but she's only 2 and they can't say what will happen as she gets older. There are kids that are less affected and there are kids who are more affected, only time will tell. There are supplements they can give her to "help" but they may or may not help and there is no cure. As of now they can't even put her into a catagory of disorders b/c science isn't that smart yet. They can say some kids have done this or that but some haven't. It's a watch and see game. They also said they can't tell us what her LIFE EXPECTANCY is. Scotty and I both about fell out of our chairs when she said that! When we started this whole journey she got her Gtube just to "gain weight" and once she stopped aspirating and put on some weight she would be healthier and would get her G tube out and go on to live a normal life. But that was a little over a year ago and now they said LIFE EXPECTANCY!? Totally caught us off guard. Not only do they not expect her to get off the feeding tube but now her whole life could change and it's just something we have to "watch".
The Genetic counselor that we saw was great and knew lots about the disorder on a medical and personal level. The reason she took the job she has (counseling families with Mito) is that she has very close friends who have a daughter with a Mito disorder. She is very similar to Aly. She was diagnosed at 2 and now she is 8. This was to be the first year that she had been cleared to go to school during the winter months. Then of course her school had an outbreak of H1N1 so she is back out of school. They stay in thier house the majority of the winter and go to Florida (where it is warm) for Spring Break every year to celebrate the end of winter and that Abby can now come out of her house. They do have friends over but if they have any hint of illness they all know to stay away. Abby does not go to children's church, playgrounds, or anywhere there could be exposure to germs. Especially, in the fall/winter/spring months. Abby is small but only got her G tube within the last couple years b/c it helps keep her hydrated since she was constantly getting dehydrated from being sick. She has gained a little weight since the tube was placed but she is still very small for her age. Hearing about this 8 year old girl and her journey over the past 6 years really put into perspective of what our life is going to be like. Her parents made a decision to care for thier daughter the best way they know how but to live as much of a normal life as possible. That will be a challenge for us to figure out the balance between the two.
As of now the only delay Aly has is speech articulation and growth. Her hearing is borderline normal and they say this could be why we are having so much trouble potty training, b/c the bladder is a muscle and she may not be able to control it. As to what will happen over the next few years and once she starts school we don't know. Most kids are in regular school (when they are healthy) but may need help in certain areas. They can't test her IQ at her age. They will monitor her eyes, ears, heart, liver, etc for any problems that may arise. This is also the reason she is so sick. Kids with Mito disorders don't have the immunity of regular kids. Their immune systems are weak which in turn causes them to get sick very easily and not get well as quickly as regular kids.
There is so much more to this disorder that I don't even know yet. The bottom line is what we have been saying for a year now "Normal for Aly is not normal for everyone". She has her own version of "normal".

Crash and burn

cade is a pretty fearless kid and if he gets a bump or bruise or cut or scrape, it usually doesn't faze him too much. today is a little different. he was outside riding his bike (in barefeet as usual) and he crashed. sad part is he wasn't even doing any crazy trick like usual. just riding down the sidewalk and boom, down he goes. i look over and see him laying on his back, holding his chin and spitting grass out of his mouth. he cried for a good half hour and has road rash on both elbows and his chin. the kicker is now he's laying in his bed instead of going back out. usually a bandaid will make him better and off he goes again. is it bad that i'm a little relieved to find out that if he gets hurt bad enough he'll slow down?! i asked him if he was done riding his bike and he said "no, i just want to rest". he's trying to show no defeat.

aly is a little different story. she gets a scratch and is telling you about it for a week after it's healed. her big thing today is her flu shot. she's been telling me all day that her "egg urts" she got a "ooo ott". i got mine too and we asked the kids if they wanted to watch, which of course they did and then cade put his hands over his ears like he was expecting me to scream or cry! i uess he thinks everyone does that when they get a shot!!

in the midst of all the bike crash drama i burnt the spagetti that was cooking (yes i know there could be a variety of kitchen fire jokes inserted there). so now i have the windows open and the smell of burnt spagetti in my house and cade is yelling "mom, lay down with me!" from his bed. poor guy, i bet that's going to hurt in the morning!! now i'm going to scrape the spagetti pan then go to cvs and try to find "chin" bandaids that hopefully have spiderman on them!!

Girly fun

tonight i took some time from whatever it is that takes up my time and sat in the middle of aly's bedroom and played. scotty had taken cade to the batting cages and it was just us girls. we started by redressing all her polly pockets, then moved onto dressup. it' so cute to see aly in a pink tshirt, white tutu, pink high heels, a tiara and blue satin cinderella gloves. she didn't want to wear any of the 20 or so beaded necklaces so she put them on me, one by one and then said (in her aly gibberish) "mommy, look pretty". noone else would have known that's what she said but i promise it was. then my OCD took over a little and i decided that we needed to dress her babies. b/c NONE of them have clothes on. so we sorted through all the babydoll clothes and dressed all her babies. she then undressed them again and changed the outfits around, or decided that they needed a bath before they got dressed. now all her babies have clothes, socks and shoes (she's prob a little OCD too). tomorrow i'm sure they will all be naked again but for right now they are clothed, in beds and covered up. she also put a bottle, sippy cup or pacifier next to each baby. she's so thoughtful.

scotty asked cade tonight why he didn't listen sometimes and cade's answer was "maybe there's something wrong with my head". the stuff he says blows me away sometimes. he's so smart and so clueless all at the same time. today i told him to get his shoes on so his dad could take him to get his haircut. he walked to his room, heard a noise outside, came back out of his room (all in about 20 seconds), still didn't have shoes on and i said "cade, where's your shoes?" he said "oh yeah" and went back to put them on. so what happened in the 20 seconds between the time he went to get his shoes and he forgot? and they say he doesn't have ADD. hello, have you met his dad? apple, meet the tree. i think it's so amazing how kids can be so much like thier parents. well, besides the obvious reason that they came from us. but everyone is so different and spouses are so different. scotty and i are not alike but yet our kids are just like us both. i guess the "nurture vs nature" discussion could come up but i just think it's interesting. some people would say that my kids are alike but that i disagree on. i don't even think they look alike (which some people do). i actually think they are complete opposite. of course aly tries to act like her big brother and do the same things that he does but their personalities are very different. i guess they compliment each other. one is loud, the other is quiet. one is fearless, the other is scared of everything. God knew i couldn't handle 2 loud fearless kids! that's why he gave me only 1 boy b/c i don't think i'm mentally stable enough for 2! ok, so bedtime is calling. surely nothing notable can happen overnight but i'm not going to count on it!!

Why won't the goldfish die...?

I have mixed feelings about these goldfish. On one hand they are helpless little goldfish, on the other hand they are JUST goldfish. it started with "fair fish" (the fish Cade won at the fair). When we went to Petsmart to get a small tank for this fish, Cade decided the fish needed "friends". Being the ever pleasing mom that I am, I agreed. Of course I was thinking on a theraputic level, Cade has sensory issues so a fish tank next to his bed would calm him and help him sleep (that's what I'm telling myself anyway). So we take our 2 gallon "self suffiecient" tank, a turtle statue for them to "swim through", some chemicals, food and 2 more goldfish home. An hour or so later Swimmy, Mermaidman and Barnacle Boy Fred (he has 2 names) were home sweet home in their pretty crystal clear tank. The fish guy at Petsmart told me I'd just have to change half the water once a week and the entire tank once a month. For the record, fish guy was an idiot. I let this go on for a couple weeks. I called Petsmart only to get another fish person who doesn't understand how small a 2 gallon tank is. She tells me to get a gravel vaccum. BAD IDEA. That made things so much worse. So my best friends brother is all-knowing when it comes to fish, of course I text him. After a very long texting conversation, it was decided-let the goldfish go in a pond or let them die and then get a Beta. Much easier to take care of. That was a few weeks ago. We've gone away for the weekend twice. They didn't get fed the entire time we were gone. When we are home I can't bear not to feed them, that's inhumane. I guess letting them go in a pond would be fine but where will I find a pond? Will teeny tiny goldfish survive in a real pond? Does it matter since I want them to go ahead and die anyway? and most importantly how did we get the 3 goldfish that won't die? If we wanted them to be lifelong pets they would have floated weeks ago!! Now I must go clean the fish tank.

Giving blogging a try

I'm the mom of a 5 year old and 2 year old. I have a husband and a yorkie. That in itself doesn't seem like it would be interesting enough for a blog, and maybe it's not. But at least once everyday my kids do something that's recordable. Whether it's funny, silly, mean, stupid or frustrating if I don't have a record of it I'm afraid I'll forget it. So this blog's main purpose is to provide me with a place to write what crazy things happened to me that day and if someone is entertained in the process then that's even better!

I'll start with the story of Peter Parker aka Cade. For awhile now Cade has said he's the "real" Spiderman. I thought it was cute and he had a good imagination. The transformation into Spiderman started slowly. He'd say "Mom, did you know I can climb walls b/c I have tiny spikes in my fingers?" "See those webs? I did that." He'd see a picture of Spiderman and say "Hey, that's me!" Innocent enough, right? Now we've progressed. At a visit to the doctor last week he told her he changed every day. One day he was Cade then next he's Peter Parker. So of course he wants to be Spiderman for Halloween. We bought the costume a couple days ago. I'm not sure the costume will actually hold up until Halloween. In the store "Peter" was pretending to flip backwards, cling to walls and shoot webs. Imagine walking through an aisle of Target only to have a 5 year old flip in front of you and shoot you with a pretend web. I'm sure people thought he was nuts. Since then he has not taken off the costume and has not stopped fighting the Green Goblin. That Goblin is in the bathtub, at the dinner table, in Cade's room, in the garage, everywhere Cade goes apparantly so does the Green Goblin. Well then, if the Goblin is there then of course Spiderman has to do something about it. Oh and then there's the constant watching and quoting of the Spiderman movie. Cade is a tv/movie watcher and he's always gone through phases where he wanted to watch the same movie over and over for a week and then he'd move onto the next. This is more than that. He watches Spiderman and memorizes it. He quotes along with the movie and does the same moves at the same time as the person in the movie. I really think my 5 year old has his first obsession. I don't know how long it will last but for now when I tuck him into bed I say "Good night, Peter."