Kaya Rain

Kaya Rain
Our beautiful daughter.

Sunday, December 14, 2014

December...and the dreaded Drs appt.

  December has rushed in the door in a hurry. We've had some spotty snow flakes but nothing that screams normal December.
  We braced for a busy month. We had Addison Lou's 4th bday party on the 13th and we all had a ball. We have a jump house place in town now and that combined with someone dressed up as Minni Mouse, a frozen cake and lots of laughter added up to one fun party. So odd to think that almost 4 yrs ago (her bday is actually Dec 20th) we were all exhausted, huddled up in the hospital, a light snow covered everything waiting on Kim's little Miss to make her appearance. I remember it was almost 9pm, I was looking out the window watching the snow fall and just missing Kaya so much..when they hollered and said the baby was here. Holding that little bundle sure made all that wait and worry well worth it. She's growing into a beautiful little girl full of spunk and sass..a little mini me of her Mom. I love seeing how Kim's eyes light up being a Mommy and having both of them in our lives :)
  We also have been bracing ourselves for this week. The fun thing is Kaya's party is this week and we are room helpers. The part that makes me nervous is Steve's apt.
  We have had 3 sets of MRI's this year. We've researched, read, listened to and have been on pins and needles since Nov. Dr B ordered a full MRI scan in Nov (almost 4 hrs of fun for poor Steve...flat on his back and not moving. I got the lovely rickety chair that makes my butt go to sleep lol) but we wouldn't know the results until Dec 17th. Usually she calls...we've not got that call. His shots expired and we had to make several calls for a refill..which made me nervous. Add in the drug company calling and wanting to talk to Steve about alternative medicines he might want to take. Nerves are here for sure. As well as Steve has had some issues....his finger is moving on its own, he's been very tired and he fell out of bed one Saturday because his back wouldn't straighten out.
  We have 3 options that may happen.
Option 1:
  Nothing alarmingly new shows up on the MRI. Same general amount of lesions, no new ones. Steve will stay on his weekly MS shot, his monthly b12 and assorted vitamins and herbs. Pro: No fighting a new copay or side effects from meds. We know pretty much the course. 6 mo before another checkup. Cons: Steve has been fighting this feeling of ...that we pay for "snakeoil". He's relapsed twice on this shot but what would happen if he didn't take it. What are all the MRI's doing to him, what can stop relapsing and what is the shot really doing to his insides? All common questions and feelings. We are basically 3 yrs deep into this...we know what can and can't happen.


Option 2:
  There is some change on the MRI's or actively working lesions that haven't been there. Not tons of damage just enough to warrant a little boost. Steve will stay on his normal regimen and add in an IV bag at the hospital monthly. Pro: The Steroids build up his system, makes him feel perkier and are painless other than sitting for 3hrs while the bag empties. Con: expensive, aftertaste for Steve is horrible, reworking schedules (and unless my Mom is off...no one really to help with Kaya except my sis in law) and the fear Steve has that he'll have issues after taking so many steroids. He's had 3 rounds of them in 3 yrs give or take.

Option 3:
  The last option is the scariest. It means that there has been visible damage done since his last MRI about 6 mo ago. It will also mean an active lesion is causing some problem. Steve will have to change medicine. He'll go to a 3 times a week shot as well as his monthly b12 and vitamins/herbs. We are very nervous about this option because 3 shots bothers Steve only in the sense of constantly finding a spot that isn't sore from the week before..imagine doing that 3 times a week! Pro: A new way to attack MS with a possible decrease in relapse and lesion formation. Con: Cost...5000 before insurance and insurance isn't sure what they will cover as well as we may have to find a new copay program. Side effects...they range from mild to severe and in the back of my mind I think how hard Steve struggled with his Avonex shot. 2 months of the flu, edginess, sickness.

  So many people are uneducated on the disease and that makes it hard. I will admit before Steve had it I knew what it was generally but not personally or fact wise. I never realized that if the disease decides to attack a nerve ending in Steve's brain that controls his heart or lungs..he can die in his sleep. Maybe I realized it but I never thought it out in that way. I've always made it very clear that I have to be strong..and that is true. I can't sit back and feel pity for him, for us. I can't stress over every ache, every bill. I can't break down and cry all the time. That serves no purpose and only stresses Steve. Stress then increases his body issues and he doesn't need that..and I honestly am not a break down person. We have prepped Kaya for this appt. She knows that Daddy may change medicines but that he is ok. So basically all we can do is hope for the best come the 17th and if we hear bad news...we digest it, talk about it and suck it up and get over it lol We've learned a sense of humor, not dwelling and stopping to breath helps more than anything

Sunday, November 30, 2014

The month of Nov

 The month of November seems to have flew by and without blinking I have missed blogging anything!!
  October finished up with Kaya having a super cold Trick or Treat night (thankful for a costume that she layered up under!!) She was a Skeleton girl and did her own makeup which looked great. She has a rule..nothing to pretty. She can ooh and awww over other girls dressed as Princesses, cute witches etc but she likes things more on the scary side for herself. She LOVES Halloween.
  November blew in with nutty weather...way too warm some days, super cold with a skiff of snow on a few days. I always have to work Thanksgiving so it's a given that we do Thanksgiving here on Sat. We hosted Steve's Mom, brother, his daughter, her little sister and their friend. Wayy too many good food items and Steve once again rocked out an awesome turkey. Emily came this year and brought her new boyfriend. Very nice boy. But it's odd to see our little Emily dating. She should still be 3 running around all wild haired and dirty faced...not looking like a beautiful young lady. Of course he got put on the fire a few times..but he survived and is suppose to come back for Christmas Eve lol
  Sunday we took dinner down to my Dad's and had a great time. Kaya always loves being at Pappaw's house.
  Kaya managed to talk me into putting our tree up 2 weeks before Thanksgiving which something we never do ...but she is so much like me. She loves the lights. She managed to talk my Dad into putting his up on Thanksgiving weekend and he has NEVER put his up before the day before Christmas Eve so she is a good persuader. lol
  Survived the Thanksgiving sale nuttiness and I'll save my rant on people's materialism and need to be giant buttheads all in the name of a cheap tv or crockpot!!
  Rounded out the month with Steve doing his MRI on my day off. Almost 4 hrs of him laying flat in a machine and me sitting in a rickety old chair trying to make it not squeak when I had to move lol He did excellent though and we go for a rather big appointment in Dec. Not so looking forward to that but it is what it is.

Saturday, November 1, 2014

November as Native American Heritage Month

 November is not only the month for Thanksgiving but also the month for Native American Heritage Month. I've often heard people say no race in the US should have it's own month as we are the melting pot of the world. I've heard what race should get each month since there are so many various and beautiful races contained in the US? I've also heard that it's racist for there to even be specific Heritage months. I've always thought about all of that and I see all points of the arguments. To me I see it as simply showcasing the various races in the US but I can say as a mixed Native woman..sometimes November being Native American Heritage month gnaws at me.
  Obviously November is picked due to Thanksgiving. A story that is often told lovingly slanted. The US was populated upon the Pilgrim's arrival. There was religion, a culture, languages and even a trade/monetary system. When the Pilgrims landed they were ecstatic to have reached land, to be alive and to pursue their religion and beliefs without fear of prosecution. They were unprepared for this rugged new landscape (I'll gloss over the fact that they had purposely chose an area away from "savages" and upon hearing that many had already died in the area...settled on their landing spot and community.)and between sickness, lack of farming skills and tools, and an ignorance of the land they began to starve. A very well educated Native by the name of Squanto saw what was going on (he had been taken to Spain as a slave and was later sold  in England. Upon arrival back at the US via escape he found his entire village dead from small pox so he began to live in another Native community) and used his ability to speak English to act as interpreter between the two groups. When Natives saw the Pilgrims starving they taught them how to grow crops on the land, fish etc. Come "thanksgiving" both sides sat down to a meal to celebrate harvest. It was not a massive feast as we think of now but it kept them from starving. Unfortunately Natives are no more perfect than English and there was fights and disagreements. But the Pilgrims drifted from their love of religious freedom and began to push "the heathen" out of the "savages" and relations deteriorated (once again..I won't go into detail of some English colonies committing horrible crimes dressed as Indians or how some colonist actually ate their "native friends")  Fast forward many years....
   Natives survived small pox, survived government sanctioned massacres, treaty violations, as prisoners on reservations while their land was taken (interesting side note is that reservations to this day are still classified as POW camps!), faced religious persecution till the late 1970's and fought hard (literally...Natives make up the biggest minority rate per race population to serve in the Armed forces...even serving before they were considered citizens!) to gain citizenship rights and benefits. Today they still face stereotypes, out of date ideas, government harassment and persecution via health care/education/land issues, have been violated through treaty rights and personal rights repeatedly. They've lost land rights, water rights and hunting rights. Their languages are in a steady decline (not for all tribes but many) and most have seen a mixing of other religions with their tribal religions.We've fought blood quantum issues, tribal enrollment issues and we have each searched out our own way in this world. We all constantly hear the stereotype of "You're an Indian and  you don't drink?? or "Of course you drink, you're Indian. You guys like that you just can't tolerate it"
   To me every month is of course National Native American month lol but I hate that our culture is so tightly wound to simply a holiday and moment in time. I hate that most can't think of Indians unless they think of Pilgrims. I hate how we listed as "peaceful, loving, earth based people" because to be honest some tribes were vicious, we didn't see ourselves as one single nation (A notion I find interesting...I've often heard "if they would all have banded together they would have beat the Spaniards etc"...each nation is it's own people, own language, culture and ideas.) and we each varied in how we saw our Creation, our lives. The only thing I can say is that through most tribes of the US we have a kinship to each other because we know that struggle in some shape or form. I also believe that most tribes have a basic belief that our Earth is our life. There is no sacred ritual to perfom as everything we do daily is a moment of faith, a moment of blessing....we are all a strand in the web of life.
   Maybe it's because I've always been curious about other religions, cultures, ways of life...but I don't necessarily believe you have to dictate one month each year to a certain race/culture. If schools did a firm job of teaching about all things, honestly..and yes even white culture ...then there would be less hatred and ignorance in the world.
  As a mother to a child that has been thought of as being a light skinned Mexican, an Afghan descendant and many other things..I simply laugh. All that matters to me in this world is that Kaya knows who SHE is and WHAT she is...not just race wise.

Wednesday, October 22, 2014

Sometimes difficult things

  Sometimes difficult things spring up along the way in life. You fret, you sweat and you wonder how you'll piece it together or keep your sanity.
  Imagine if  family and family life was like a fixer upper house. Yes, you get bogged down in details at time and frustrated at how things go but you don't just walk away you keep trying to make each room the beauty you see in your mind's eye. You never truly walk away because there is so much of "you and yours" instilled in it.
  I think family is like that but lately I've had it less than easy in that field. I cannot point the finger at just one person or situation and to be honest I know too that at times I'm pointing at myself. Do I wear my heart on my sleeve too much...yes I'm sure I do. Do I feel over protective when I need to not be...yes I do. Do I find myself questioning exactly how someone says something..yes I do. And those problems are mine alone. Noone can fix them but me. But some issues I've been seeing/hearing and dealing with are not just mine.
  I often wish to be the type of person that sees the beauty under the pain. That sees the inner core and lets go of the outer core. That I could feel even more love and compassion for those that face the world with anger, hurt and unknown pain. That I could feel deeper for those that feel no love for themselves. To not feel the bitter edge of aggrevation when dealing with the ones that feel the need to constantly one up someone else, or over act to compensate for what they are lacking inside (whether true or just feeling lacking).
  I really honestly try very hard to strive to be that kind of person. I feel I succeed some days...fail horribly others. But....where does the person draw the line of fixing up a relationship, of being the one to always have compassion when the other person is standing on your foot?
  I've noticed more and more exactly where me and my little family are situated in the big picture. We will always be frame right and not in the ending credits if you get my gist. Facebook is a tool for positivity but I've found that certain people that SHOULD be a positive influence have to be moved to "out of time feed" or whatever it's called. I just can't take reading all day their gripes, their attitudes. And then add in when everything is kept a huge secret and they slip up and tell..holy moly their world crumbles. They don't understand it doesn't bother me/us..we are happy they are happy and that's it.
  We are never going to be in the big scheme of things. We have dealt with excuses, with "how are we going to make this work" for years. It's not. You cannot talk out of both sides of your mouth and every single relationship takes work, elbow grease and the desire for all involved to be just that..involved.
  I could list my hurt feelings, instances that prove my point, even the gossip. But I won't because I was raised to be above that. To realize folks are not all the same and you either deal with them as they are or you walk away. I have come to the conclusion that we are the only ones putting in the elbow grease. Do we cancel dinners and get togethers? No because we genuinely enjoy it, they always go well and Kaya loves family time. So I have issued a mind set to myself|
1. I cannot fix people and situations that have no desire to be fixed. It's not fair to me to try and be hurt..and it's not fair to those that don't want to change to be hurt.
2. I am me. Funny, crazy, family oriented, maker of big meals, sometimes tenderhearted me. I am not changing. I won't change. I have my faults and I could easily list them. But I won't become how others are to "fit in", to make things "smooth" or to get rid of any feelings I have.
3. I will continue to be myself. I'll help Steve host gatherings, I will prepare meals for those in need/sick etc, I will send cards/texts/messages to check on people. I won't let someone else's view on things change me.

4. I will enjoy my life and my little families life. If others want to be bitter, mad, sad or list their woes..they can. I can hear them, I can read them and I can love them...I do not have to follow suit.
5. Kaya cannot miss what she has never had or felt. If I bring it up constantly how they are not involved then she will think it's odd and hurt. I won't do that. Once she's older and sees how things are THEY can answer her. It won't be me causing her pain.
6. I am letting go. Letting go doesn't mean you don't care and love someone..just means you are no longer forcing them to.

7.I'm no longer reading and staying up on gossip and the such. When I've been told "things" going on I simply nip it in the bud and say not my business. It's not caring it's just not being an ear for others that don't have time for us and it's keeping myself out of unneeded drama.
8. Drama stops. PERIOD!
9.I'm trying hard to not feel hurt over things and doubly hard on not saying things. Not that I'm being walked all over. I'm simply not letting things get under my skin. And when it's said or posted to us I simply let it go. Will me saying "this is what I think" make them change their mind or do different? No so why waste the time arguing about it.
10. I realized one day that I was becoming as bad as those I complained about..because it was always on the tip of my tongue to say how they act, how nutty they are or something like that. It wasn't speaking much of my character to say that. Plus we are the role models for Kaya, how she reacts and handles things etc. I could care less how others do and act but I won't have my kid thinking it's ok to be mad or bitter...and see it come from me.
11. I'm truly happy. Good husband, wonderful kid, home, happy life...why dwell on what others never want to fix but want to complain about? :)

Wednesday, September 24, 2014

Did I happen to mention....

   Kaya had talked to us last night about how much she wanted to get student of the day. They call it Red Star Student of the Day. We told her to keep trying hard, to listen to the teacher, follow all the rules and do her best. IF she go it, great, if not...as long as she was trying and doing her best..she was already our Red Star Student of the Day.
  Lo and behold little butt got off the bus and broke her neck to show us her certificate!! She did it. She earned Star Student of the day for listening, being kind and sharing etc. VERY proud of her. She was simply ecstatic over it and beamed all night.
  It has a nice little place on the fridge for everyone to admire :) :)



Thursday, September 18, 2014

First Progress Report

   You'd almost think it was ME going to school not Kaya lol but I've been on pins and needles for Kaya's first progress report. I'm fully aware she's not a perfect student, she doesn't know every single thing but I am just curious to how she is doing.
  Her report was outstanding. Pleasure to have in class, pays attention, kind, respectful and no behavioral or learning problems :) One happy Mamma for sure.

Wednesday, August 20, 2014

Grandpa would be 92 today

   As much as I'm in awe of the fact Grandpa would be 92 today...it's hard to say "would have been". I could say he was the finest man walking this earth but I was blessed with two grandpas of that nature. I could say he was the best grandparent a kiddo could have...but I was blessed with two sets of them.
  Today I have been missing my grandparents a lot. Maybe it's school starting and seeing my own kiddo taking those first steps, maybe it's me being emotional...whatever it is I just miss them a lot today. I'm one of those people that hold onto memories and photos more than I hold onto objects..and today when I felt the tears building up..I thought what a blessed woman I am.
  Some kids come into this world rich, some dirt poor. Me...I came into this world smack dab in the middle...poor enough to know what hand me downs, hauling water, and hash was...but rich enough to always have a roof over my head and some just plain awesome people in my life.
  I could fill a book with memories of growing up. Canning jars turned into lightening bug keepers as my Granny and Grandpa sat on the porch enjoying the evening. Hay fields that became secret mazes as long as you wasn't caught in them ;) Sunday dinners with family, the newspaper and laughs. Sweet tea on the porch after running our legs off after cattle.Dirt pies, corn bin surfing, many a trip taken on our "huge boat" also known as Grandpa R's hay wagon. Grandma R loading us kids up and her painting supplies and heading to the woods for the day. Metal wash tubs for summer baths, kerosene lamp puppet shows when heavy snow knocked the lights out. Butchering, gardening, canning. I could write a recipe book out of the meals my grandmas, Mom and aunts made. Family gathered in rooms so small people would wonder how we all fit. Holidays full of love, laughter, food, family and a gift. Our gifts back then sure wasn't the stuff you see now and we didn't get stockings full of stuff but we did always get an orange (and I continue this with Kaya today...she loves it).
  I have had people in my husband's family tell me it would be wonderful to be born into such a life...and I can't humble myself and say "Oh well now"...because it was and it is. They say it must be amazing to be born into such love...and that is an understatement. I cannot think of one time that my heart hasn't lifted when I am with my family. Even in moments of heartbreak...we pull together and we come out of it stronger.
  Some of us have strayed off the path, some of us I know my grandparents would not be proud of. They would love that person but they would scold them and try to show them the right way. But I know that they love every single one of us for ourselves and watch over us daily. It's hard to have great aunt and great uncles and uncles added to the list of those that have passed but I'm thankful for the knowledge, the morals, the life they have shown us.
  Today Grandpa W is in heaven having a great party. Granny didn't like to bake sweets..lol..so Grandma R is probably making his lemon meringue pie. Grandpa R is giving Granny a hard time and she's telling him to behave before he gets it. Grandpa W has on his bib overalls with his blue hanky hanging out the back. Granny R is laughing with her face covered with her apron like she did when we were kids. Grandpa R has his farm hat and his twist of chew in ;) And they are happy, healthy and watching over all of us.