The Ugly Truth about my Beautiful life

This is a post most different from my previous, I (with the help of a good friend) have promised to not edit out the "ugly" and raw truths.
I am not ok
I am sick, for the rest of my life I will be sick. I will wake up every morning...sick. I will go to sleep every night ...sick.
I will play at the park with my children ...sick. I will go to church...sick.
I will help my neighbor...sick. I will date my husband...sick. I will celebrate every holiday... sick.
I will pour my formula and hook up my feeding tube everyday...sick. I will crush and prepare my medication...sick. I will cook dinner for my family....sick.
And I DON'T want to be sick anymore, I hate it for the life I feel it stole form me. I don't want to rest or have limits, I don't want to say that this is ok...It is not ok....I am not ok... I am sick
I am angry, there is always more to anger than just anger...there are emotions hiding under the blanket of anger.
I am scared, I am tired, I am hurting, I am overwhelmed and frustrated. BUT I have wanted people to only see me be happy because I want to be HAPPY. I can be happy...sometimes. I am trying to be ok with not being happy all the time, because sometimes I am not... and that is ok.
I feel hope and discouragement in the same breath, I feel healing and pain at the same moment. At times I am feeling so much inside this broken body that the outside world of light and sound can overwhelm me.
I can feel the sun setting on the survival mode I have lived for the past five years. It has become my safe place. A warm comfort of uncertainty and questions that has pushed me forward to find answers.
There are answers now, and a light of calmness will rise like the sun in the morning.
But for this moment I struggle....to see what woman will I be when the sun does rise, I look for her in this darkness . I can not be who I once was. Life has changed to drastically. I can not even see her in the distance anymore, that is ok... I have learned to much to go backwards.
I struggle as I must decide who I will be, how much do I let this change me...for good. How do I know who I will be...what will my life will look like, which way to turn?

I have been stripped down to the basics of my soul. And I stand here before the world with only a foundation of my faith to hold me up. A testimony of the love of my Savior, and a loving Father in Heaven. A testimony of the eternal plan, that families can be forever, that I am a child of God. That with my faith I will find myself on the other side of this trial, a stronger better me. That I will glean from this pain and difficulty a stronger belief in myself. That all things will be for my good, reminding me when I can not see that, I am loved, I am not alone, and that I am strong enough to do this.
The sun will rise, and I will walk through the next day to the next sunset and then the next sunrise. I will find myself...the new me. The best me...
the best sick me, because I am ok....I am sick...and that is ok.

Finding a balance in chaos

When I was a little girl I enjoyed the thrill of witnessing tight rope walkers. The amount of control and the ability to balance was something I wanted to emulate. It is something I usually feel is just out of my reach. My favorite moments of these balancing acts were when they could pretend to be about to fall...and maybe they were but they were able to pull it back to center and get balanced once again.

Bare Naked Honest Truth....I am fearful of chaos, it panics me to my soul, I need to feel secure with a plan in place and a list of what needs to be done. For me balance was stability, and stability kept me safe. Then I thought of those tight rope walkers. They were not in a "stable" environment on that high wire, they were not safe. They were bringing a little control to chaos.

I try not to let myself ponder thoughts of what life was like "before" I got sick. I am sick...and that is not going to change...so I have to find a new balance for this life... the "after" I got sick life.
There are SO many things I miss and it is not just food :) although I miss partaking in the social aspect of sitting down and enjoying food with my family and friends. It is truly more difficult than I thought it would be, I really thought that my bodies hunger for food would be the most difficult aspect of my feeding tube. It is not. It is the inability to share in the social life that comes with sitting down and enjoying food together. It requires me to find new ways to celebrate holidays and birthday's , date nights, baby showers, weddings, girls night out, movies... I miss having endless energy and the ability to push my body. I miss feeling happy without much effort. I miss freedom of spontaneity... not being tied down to medication schedules and feeding tube schedules...doctor  appointments, testing and procedures...

The list could go on and on...

But the buck STOPS here!

I am learning..
I can not control everything and that leads to relying on my faith more than myself. Not the most enjoyable lesson to learn, but for me a vital one.
I am learning...
to push my resourcefulness to new levels. To think outside the box, even outside the room to make things happen.
I am learning..
that I can trust others to help me and that I am still a good friend
I am learning...
How blessed I am to have the children God gave me, they truly are amazing blessings in my life
I am learning..
To enjoy the moments of blissful harmony when they come, and never stop searching for them when I don't see them straight in front of me....because they are there
I am learning that...
when I can't do it on my own, that doesn't mean I can't do it... I just need help
I am learning that...
sometimes being in control means letting go of it first
I am learning...
to ride through the chaos and not fear it (to much)
I am learning..
how to balance while riding a roller coaster...it might not be graceful but my goal is to do my best to find joy even in the chaos

the struggle for perfection

the struggle for perfection

Well if you know me...you know that  I like things to be "right", in their place, organized and clean. I might have been referred to a time or two as a perfectionist or...cringe...anal retentive. I can testify that a few years with multiple chronic illnesses has eased my passion in perfection.... a little.

Lets just say my house is usually clean... but I don't scrub my baseboards with a toothbrush on a weekly basis anymore. I try not to let  my own OCD weigh in judgment upon those who live a more relaxed lifestyle.... I like clean lines and no clutter....in my own space. I am learning to try to see my ten year olds chaotic artistic approach to decorating... her room is visible from my bedroom.
I am the oldest child of a large family and I think that is where some of my drive for perfection came from. Being a "good example" to 12 other siblings weighed heavy on my mind as a child. I have learned a bucketful of lessons in my life as to where responsibility falls...and thank goodness we are all responsible for our own choices. I also figured out that perfection was not a destination... but a journey. That my goal for perfection would not be achieved in this life ;) but that it could be my goal to do my best in order to be my best everyday.
I know it sounds a little silly but I used to think that if I was perfect.....life would be so easy

 

I wouldn't struggle with trials. Well I can say that I am far from perfect, but that does not change my goal as I open my eyes to a new day each morning.
Back to the idea of obtaining perfection to have an easier life.... If I was only perfect this life would not be so difficult. I will be the first one to tell you that I don't enjoy struggle...but their is a natural high I feel when I am able to accomplish something difficult,

 and that I most definitely enjoy. I currently "enjoy " teaching a 12 year old son to find the joy in the journey. You can enjoy washing dishes with a good attitude and the thoughts of accomplishment. Well that is a lesson I think might take awhile...I still need to be reminded myself at times....like laundry. I've been pondering the word struggle a lot lately... maybe because I have been struggling a little. It is a funny thing how our body's, mind's and spirit's are all tied together, or maybe it makes sense I just don't think about it all that often. My body's health is like a giant amusement park sometimes. The roller coaster in real life is in fact one of my favorite activities... but not at this park, and although the fun house has an inviting name I think I would rather go for a long ride on a happy merry go round.

 At least that is the thought that passes through my mind now as I struggle.
There was a time in my life, not long ago actually. Right after I had survived the marathon of having 4 children in 8 years. They were getting old enough to not have a constant eye. I remember vividly thinking... My life is slowing down a bit, it's kind of boring. I don't want a boring life. Hahahaha I have to laugh at myself because shortly after that thought, 2 weeks to the day, Craig came home and let me know that Micron would no longer be his place of employment. It felt like I hit a brick wall.

We had made it through the many layoffs with confidence before. We had been in our newly built house for about 2 1/2 years. We loved our neighbors and best friends that resided in our perfect quiet little cul de sac. We short sold our house and lived on our savings as we struggled to find work for Craig. I went back to teaching until he found something. It was a long rough six months....we moved in with family... and I started on my road of chronic illness. Thankfully it was one step at a time. If you would have told me then what I know now, I might not have made it. That was 4 years ago...it has been a bit of a struggle.
I share this not for pity, I know that we all have our own struggles. I hope it helps you understand where I am coming from. My life is not more difficult than others, at times it is just more visible to the world. We all struggle at our own pace. Some struggles are self inflicted and others are just part of life.

(and now she finally gets to the point :)
Like a fish swimming up stream

Struggle...
I never liked to struggle, there came a time when I wouldn't even say the word. I want to live a happy life and how could I do that if I admitted I was struggling.
After a lot of down time and the ability to use my mind when my body took a hiatus, I not only began to appreciate the word...but am proud to say that I struggle. Like most other people the amusement park of struggle has it's off seasons, thank goodness, mine just picked up business the last four years.
My mind change concerning struggle came when I decided to look for a definition of the word, to study it's meaning until I no longer feared it.
To struggle is to move forward with great effort. Now I can't say I wouldn't mind moving forward with little effort every once in awhile ;) But like accomplishing something difficult I enjoy that feeling of conquering an obstacle.
I realized that there is no shame in admitting to struggle....It is the moments of no forward movement that I hope to avoid. I want to progress and learn... moving forward...improving...struggling.
Having a perfect day does not exclude struggle. For me moving forward with great effort toward perfection WITH a happy heart is my goal. I am not perfect so I struggle, I struggle forward. I struggle with a happy heart (most off the time) and when it gets difficult I am blessed with those who enjoy assisting me struggle forward,

 but that is another post for another day.
My advice.... Struggle... take life for all it has to give... struggle forward... appreciate the feelings of pain and sorrow for the window they open to see the depth of peace love and beauty. Struggle forward with a happy heart.

<3 a fellow struggler

curiousity and answers from Hogwarts

Although not a die hard fan of Harry Potter... I have a twelve year old who knows it forward and backward. He is a pretty intellectual kid,who asks a lot of questions and strives to understand the world around him. I talk openly with all of my kids,( age appropriate) about my medical life. It is not always easy or should I say comfortable, but to me highly necessary. I was grateful that today's conversation was a little on the lighter side. McKay is always wondering what it feels like to be chronically sick, not usually the physical aspects (that is more Camdyn's realm) more of the emotional and social aspects.

 

McKay asked me today how I see life differently than I did before I was sick.

Thankfully, this was not a surprise attack and I had been preparing thoughts on this very subject for him. It is a difficult thing to explain, life changed not including the physical aspect, all around Life changed dramatically.

As his mother I know that fear prompts most of his questions . So after much thought on the subject I think I finally found a way to explain it in a less fearful way, to a twelve year old boy who enjoys some science fiction. (crossing my fingers now in hopes that no one has me commited after this ;)

Here it goes.

Living in a medical world is like being a wizard at Hogwarts.

After a very questioning eyebrow raise from my son. I warned him that seeing more good (like the magic of Harry Potter), also meant seeing more of the not so good (like seeing Voldemort).

 Mugels don't see the wizard world around them, not the good magic or the evil magic.

Living in a medically complex family changes so many things about day to day life.

Things "normal" people don't see... I see now.

I see so much more than I used to. I see more death, never an easy thing and agreeably a little more difficult when it is friends in the same medical community you now reside in.

Yet I also wittness more life being lived to it's fullest. I see the quiet super heroes, who share a smile even when it hurts, who lovingly hide pain and fatigue to spare their loved ones. Those who deal with pain on a daily basis but find reasons to enjoy a great life in the same body that betrays them. And the helpers, the people who might not know what it feels like, but they are there to help none the less. People you have never met before, sitting with you in the surgical waiting room. Friends sitting for hours with you at the hospital, with no complaint.

Some people are afraid of what they don't understand.(like Harry's Aunt and Uncle) so they ignore it and do their best to pretend that is not there, or they punish the person because it frightens them.

He pointed out that like the death eaters sucking the life out of people sickness and illness can do the same to anyone, sick or not sick... because if you love them it is still hard. It takes a strong person to fight back....with light and hope.  We talked for quite sometime and the comparisons he made helped me as much as it did him. I won't bore you with all the details. Like I said he knows the books forward and backward. I will share this...at the end of the conversation he said he wished I had a magic wand..to make everything better. I did remind him that I have my faith, and that even the wizards at Hogwarts had to work hard to do good... even with magic, much work was required for good to win.

 

sometimes all you can do is laugh at yourself.....OUTLOUD ;)

Now before I get started, I must let you know that there was no urine involved in today's experience. That although I do not place my self worth on the opinions of others... I do know how to behave myself in public. I do not classify laughing as something I would consider a stretch to acceptable public behavior, but laughing at a potential self  embarrassing moment in public would not be my "normal" public behavior. Today I decided that there was not a refined public response option. And yes I am aware that up until I post this on a BLOG, that there were only two other people on this planet who were aware of said moment, I decided that I enjoyed a good laugh over it...I should share that  opportunity with you.


I haven't been feeling very wel for the last few days, BUT Tay had a return she needed to take care of from Christmas... So I ventured out. I had not been running my feeding tube for a day due to some "health issues", but the need  to accomplish said errands required some nourishment. So I got all my meds taken care of and my formula and water all packed with my pump in my back pack...and we were off...to Target. She returned her Nook...now that her tablet was working she only needed one. Then the long search for something.....anything to replace it began. After two laps around the store we FINALLY ended up in the clothing (again).
As she was picking out another shirt to match the already discovered skirt...I heard a dripping sound. Not thinking anything about it until I saw the look of horror on Tay's face.
 "Umm MOM THAT is YOU"  Like a slow motion movie I took the back pack off and noticed something pouring rather rapidly from the bottom.(You see wearing a backpack is not my way of making a fashion statement, it is an everyday addition to my outfit, weather I wear a dress, yoga pants and a hoodie or slacks and a cute blouse, it always includes a backpack, either that or push around an IV pole everywhere I go.) It also (sadly) makes it a little easier for people to remember me...everywhere I go, which usually doesn't include daily embarrassing moments.  Mortified I quickly unzipped the backpack, I was relieved to see that indeed it WAS NOT formula (sticky not so good smelling....wonderful mess making...formula) but rather just the water. Still it had dripped, well more like flowed from the back pack down my coat and pant leg. As I notified the target employee of a water spill...she raised one eyebrow and asked...How did that happen? Before I could answer, my sweet 10 year old spouted the entire happenings. With a look of slight curiosity, the employee then asked if it was just "regular water" I let her know that indeed it was like I had spilled a glass of water....no hazmat suit required. "Good"she said out loud.... "because it kind of looked like you peed your pants". And that is when I decided that if I already appeared to have had an accident...that a laugh couldn't be much more embarrassing. So with not a clue as how I was to respond to that with any dignity... I laughed, and thankfully they both laughed with me. (on a side note...the 1000 ml of water that flowed to the floor would be a BIG accident)
With a few changes to the back pack I hope to have eliminated the possibility for any reoccurrence of todays experience. And noted by my wonderful daughter while at the check out stand surrounded by a busy crowd...."Just because it looks like someone is peeing their pants doesn't mean that they are.' ;)

the 12 boxes that changed the Cosper Christmas

My children are getting older, and I will admit that so am I ;) With that change we have discovered a different spirit of Christmas. Now we have taught our kids the meaning of Christmas we hold dear to our heart. I will never forget McKay's 3rd Christmas. We were telling him that presents were nice, but that it wasn't why we celebrate Christmas. I bent down to that sweet little innocent face (I miss that face sometimes, 12 year olds are not as easy) and simply said Christmas is Jesus Christ's birthday. He then with an inquisitive look asked "where is his birthday cake?" so for many years we had Birthday cake for breakfast on Christmas morning. We have had many fun exciting traditions, one of the kids favorites has always been the 12 boxes.

When I first came across these boxes at Costco one year, I thought we could make a fun tradition that would last for generations. That first year was an exhilarating treasure hunt, as I shopped dollar stores and clearance racks ( yep I'm one of those :) It wasn't to challenging that first year, we only had two kids at that time. As the years and number of kids increased finding four oibjects to fit in the first few tiny boxes became one of my most challenging Christmas to do's. Toothbrushes, special Christmas socks, their personal ornament of the year...and last but not least the coveted Christmas pajama pants on Christmas Eve. I will always remember those years with a smile.

I know that when I first started my medical journey, it changed the way I saw life, time and gifts. A gift is so much more than a present. I also started focusing on what was important, really important. It is a scary thing to think about the possible shortening of your life at the age of 31, but Oh so eye opening...and hey I am still here...and plan on sticking around for a long time ;) Ok so off my little soap box... I have always enjoyed the GIVING of Christmas and saw that as an important principle I wanted my children to understand know and feel. As they, like stated before are getting older... I thought about how I could teach them how to celebrate Christmas with giving, not so much as getting. We had a few tight Christmas's when we participated in Micron's layoff extravaganza. We short sold our house and spent a few months without work and a dwindling savings account. My kids were great sports. From that experience they now enjoy making each other their exchange gifts. Not a time I would like to revisit, but grateful for the learning experiences we got out of it. 

At first I was nervous that I was destroying "family traditions"and I almost didn't proceed, I decided that I wasn't erasing the tradition, it was just evolving. The next obstacle was "talking my kids into the same idea"

It was going to be a big change and I prepared myself for resistance. As we sat down two years ago, I smiled and hoped for the best. Here went nothing.

I talked for a bit, reminding them about what Christmas was all about. Not presents, but GIFTS. A gift from our Father in Heaven. A gift we could not repay. I want to give like that, and teach you how to give like that too. To give something that can not be repaid. They know what doing service is, and we have enjoyed many fun ring and run operations in our past. So I asked... what would you think if we took our 12 boxes and instead of me filling them with things for ourselves, we fill them with service for others. It is Christ's Birthday after all and we should be giving something to him. I held my breath..and actually closed my eyes for a second, slightly peeking out to see the reaction. I mean I know my kids are good kids, but they are kids and not by any means perfect.I was asking a 10, 8, 6, and 4 year old to give up 12 guarenteed Christmas gifts...every year. 

Suprisingly the first voice came from my little four year old ( I will remember this moment with pride, joy and total shock, as it meant she actually listened to our family home evening lessons, well atleast once)

" Like ...if you have done it unto the least of these"? Deep breath..one down. Yep I said, instead of getting presents for ourselves we are going to be able to do service for others, and that is a gift to Christ for his Birthday. 

Next came the oldest two.. they got a paper and pencil and began writing down ideas...WOW I thought this is amazing, Goosebumps covered my arms and tears filled my eyes. They started with people they thought could use help. Last to speak up was my 6 year old..."What are we talking in the way of SIZE... how big or how small can the gift be?" We decided that we could do service for anybody, and it could be as simple as sharing a smile and well as big as buying a goat for a family in a third world country. The list is actually getting longer and I HOPE that they see the difference in the I want lists and the 12 box list. Each day we do a service for someone and put one box inside the next...filling the last big box with 11 other boxes of love and service.

I will say that the beautiful moments we enjoy with the 12 boxes, are not always perfect.(The conversation was ended and we are back to our normal selves...complete with a fit about who took the toast out of the toaster;)  We are not perfect, but the moment was, the time we spend helping and serving others can be. I wanted to change what my children thought about gifts and Christmas, and it is I that was taught how simple it is to Love one Another. How we are the tools our Heavenly Father can use to share his love. This Christmas I can not help but want to shout "Hallelujah" from the roof top, McKay said that this might be a better place for me to share my Christmas spirit, and slightly a less embarrassing possibility for a 12 year old boy. ;) Merry Christmas <3

Living a Thankful Life

I love the topic of gratitude,  making Thanksgiving one of my favorite holidays. Yep still LOVE Thanksgiving. Food is only part of the holiday, granted I had a few bites this year, and without regrets still paying for it. I enjoy  the opportunity to see and hear (or read) what others  are thankful for.

         A few times I have  been asked...How do you stay so happy, how can you be grateful ? I don't wake up every morning saying. How am I ever going to survive this day living without food and a battery of chronic diseases. I wake up (almost) every morning thankful for sleep and the chance for a new day. There are far to many cliches to be used in this post...and I apologize, but I truly do use them, and do my best to live them.. so maybe they are not cliche after all. Life IS what you make of it...I have a choice to make each morning, am I going to be happy today or not? Honestly some days it can be more difficult to be happy than others....that's when I pull out my secret weapon of gratitude :)There is no cure for my illnesses, and like a cold there is no medication to take it all away just help with some symptoms, so I count my blessings and what a discovery I find. Like hidden treasures on a sometimes deserted island, they change my perspective. Loaded with these gems it is difficult to find myself ungrateful for the many things I do have. The list of things I don't have, like food, can not compete with the ever growing list of the amazing prosperity I enjoy. Now please don't get me wrong, I have bad days, days that are not easy. The kind of days I want to sleep the day away. My goal on those particular days is to do my best to just get through them. Survival mode is not a healthy place to dwell to long, so as long as am I am struggling in a forward motion, I get through it with hope for a better tomorrow.
            So I guess the answer to the question of ...How do you stay so happy?

Is it a choice that I make. I don't get to choose weather or not I am sick (bummer, right :) but I DO have the power to choose my attitude, and I like to be happy. You can call it rose colored glasses, but I enjoy being happy, the alternative is just not very tempting to me. How can I NOT be grateful? You should see my list of blessings <3  What can I say, I am loved and that alone can get me through almost anything. I am one lucky girl.

          Although I'd like to give it a try someday.... ;)  I am not a super hero, and I don't possess some secret magic that makes me happy, it's just as simple as making the choice to be happy.You would be surprised at what trials you can not only live through but survive with your head held high, if you have to. Although I would have never chosen this path for my life,  I'm walking it now and finding the roses in the thorns.
           Like I tell my eye rolling, I can't believe your going to say it one more time cRaZy mom alert, son..... "Make a good day" having a good day is easy...making a good day is worth it.