Projects, Presents & Public Speaking

     As some of you may know, I'm a huge fan of Christmas.  As in my little sister, Nicole, and I made a paper chain to count down to Christmas in September.  And although that sounds a little crazy I love doing those fun random things with my siblings leading up to Christmas, even more than I love Christmas day itself.
     In the past few months a lot has happened and its so nice to say that I forgot to blog because I was busy and not because I was so so sick! October was really the start of a new beginning for me because I hit a sweet spot with medication doses and prayers were answered and some stars somewhere probably aligned and some how by some miracle I was able to go with my family to Disneyland!  I haven't been since I was like 3 or 4 so it was pretty much a completely new adventure for me.  Just the fact that I made it through the 10+ hour car drive was amazing but even after riding in the car all day, I was able to go to the beach and walk (!!!) on the sand and dip my toes in the water:)

 We took it slow on the rides and we went back to the hotel (which was right across the street from the park, way to go mom!) for the hottest part of the day because even though it was October California decided to have a mini heat wave, so it was 90's to 100's everyday!

     November was full of cleaning the basement.  We have this room that we call the "green room" which earned its name by the green paint and the dark green carpet.  Its not actually a bedroom, its just the room that is at the bottom of the stairs to the basement.  And since it has had no particular purpose it has become the "catch all" room that stuff we don't know what to do with migrates to. So after a week of wading through boxes, dad installing a beautiful wall of mango wood cabinetry, we organized pictures into cupboards and got a guest bed ready for when siblings were coming for Christmas. It was quite a bit of work but with the cabinets I think the room will be more inclined to stay tidy. Obviously somewhere in between all that cleaning there was thanksgiving that we had at my aunt's house and it was so lovely. And around that same time I was able to attend my first ever sealing, when my dear cousin got married!
     December came in with her own list of projects to be had.  We had ripped of the 23 year old carpet on the stairs and were working on painting them and adding carpet sample squares.  Sounds weird but it turned out great!  Granted I didn't help much on this project but I did do a bunch of touch up paint on the wall on the other side of the stairs that had some patch work to be done after the carpet was pulled up.

     All that painting lead to painting the lower kitchen cabinets with some $7 grey "oops" paint.  It was hard work but definitely not as hard as I thought it would be and so well worth it because they look great!  We also painted the kitchen walls a light grey and that upped the look of the kitchen a ton.  After the holidays we plan on painting the upper cabinets white and that will take the 90s look all the way out of there haha.  One of the other pluses of painting is the listening to book on tapes part of it, its been so interesting to listen to "To the Rescue", a biography about Thomas S. Monson.

     The one last project that just got finished up is some crown molding with LED lighting behind it in my bedroom.  I LOVE it so much! Its perfect dimmed all the way down for when I have a migraine and gives extra light to my dark north facing window room.  Dad designed and made these beautiful corner pieces out of onyx that are see threw enough that the light shine through them.

  
     That takes us right up to Christmas and since this blog post has gotten outta hand in length I applaud any of you who have made it thus far! Christmas was perfect.  We had everyone home, it was magical and I couldn't have been more excited about some of the presents I was giving! I end up getting some amazing presents, including a Teddy Roosevelt t-shirt:) Also a beautiful necklace and earrings that I wore to speak in church....on CHRISTMAS SUNDAY!! Here's a screen shot of what my heart was doing right that the moment before I spoke:

     Once I got up there and got going though it was fine.  I got to sit down in a padded chair with my feet up on another chair.  I was asked about a week or two in advance by the bishop who said that if it stressed me out to much he wanted me to say no but I felt the Lord had something he wanted me to share with our ward.  I was originally only going to speak for 5ish mins but when I was finished I looked at the clock and realised I am more long winded than I thought, I spoke for 15 mins!  My first "real" talk in church, as an adult and not a youth speaker went rather well, considering I didn't pass out we'll call it a success! I hope you all had a wonderful Christmas full of happiness, love and celebrations of Christ!

     If you're interested in reading the talk I gave I've included it here, just know that I did go of scripted quite a bit but this is pretty close to what I said:)

Merry Christmas! For those of you who don’t know me I’m Michelle Cutler, Pamela and David Cutler’s daughter.  Also I feel like I have to address the informal seating situation I have going on here. Due to some health challenges, namely one called P.O.T.S. standing is very difficult for me, even having my feet below me for too long will cause blood pooling in my legs which means that there won’t be enough in my head which leads to fainting.  Add in the fact that I produce at least 4 times as much adrenaline as a normal person, we have a pretty good list of reasons why I’m not big on public speaking.  Even with all that in mind I wasn’t that surprised when Bishop asked me to speak in church because I think the Lord must have put it in my head that it was coming so I would be less likely to panic at the thought.  The part I was surprised at was that Bishop asked me to speak on Christmas Sunday.  No pressure, right? Though this is outside my comfort zone, what better way to celebrate the Lord’s birth than expressing my testimony about Christ?  As I thought about what message I wanted to share with you, I thought of Christ’s love and the incredibly vital relationship I’ve come to have with Him through these last few years of trials. Because of that I want to talk to you about Christ’s unconditional love and focus on examining our own personal relationships with Him.

In order to build a more successful, deeper relationship with someone we must first get to know who they really are, as well as discover who we really are.  So who is Christ? In the book of John there are 7 “I am” statement of the Lord that helps us get to know Him, today I’m going to focus on the first 5.

The first I AM statement is from John 6:35 “And Jesus said unto them, I am the bread of life: he that cometh to me shall never hunger; and he that believeth on me shall never thirst.”

                What I get from this verse is that not only are we promised that He will provide for our needs but it reiterates what I already know to be deeply true, that we can not survive without Him, that without Him we will continuously hunger for something more.  One of my favorite scriptures stories is the one about Peter walking on water and last Christmas my sister Nicole gave me a beautiful painting of this very story. It hangs on the wall across from my bed where I can see it every day.  It depicts a dark stormy sea with Christ walking towards a boat full of men.  Christ is bright white and calm.  From the scriptures we know that Peter walks out on the water to greet the Lord but begins to sink when he looks away from the Savior.  He then calls out asking for Christ to save him, when Christ grabs his hand he asks why Peter doubted. Peter always had enough faith to walk on water, if he didn’t he wouldn’t have gotten out of the boat in the first place.  Peter faltered because he looked away from Christ, he looked down at the sea and trusted his mortal eyes that told him he could not walk on water.  I think we all doubt in the way Peter did momentarily. We have enough faith to get out of the boat, and often we even succeed in getting almost to our goal but we fall when we rely on anything besides the Savior.  

The 2^nd I AM statement is in John 8:12 ¶Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life.

Light gives knowledge, when you turn on a light it a dark room then you know what’s there. When C.S. Lewis described his faith in Christ, he said; “I believe in Christ like I believe in the sun- not because I can see it, but by it I can see everything else”

This might be my favorite I AM statement because it immediately brings to mind the hymn “The Lord is my light” which then continues to say “then why should I fear?’.  I remember being about 17 when I was hospitalized for the first time.  I didn’t want to go to the hospital, I didn’t want to be poked and prodded and then told that I was making up my symptoms.  I just remember laying in bed the night before we were supposed to check into the hospital praying and crying out to the Lord telling Him how scared I was, and how I wasn’t up to the task at hand.  Then I opened my scriptures to a random place and read 2 Nephi chapter 22 verse 2 Behold, God is my salvation; I will trust, and not be afraid; for the Lord Jehovah is my strength and my song; he also has become my salvation. Even though no diagnosed came from that hospital stay I gained a strong testimony that the Lord is aware of my needs and my fears, and that He knows my limits and capabilities even better than I do.

The 3^rd statement is in John 10:7 Then said Jesus unto them again, Verily, verily, I say unto you, I am the door of the sheep.

                Now this one was kind of hard for me to understand at first but this verse is said after Jesus tells a parable about sheep, and that robbers go over the fence to steal and scatter the sheep but that the true shepherd only uses the door or gate to get to his sheep.  The people didn’t understand this parable so Jesus explain with this verse that he is the door to the sheep or in other words he is the way to our Heavenly Father and that through Him we may get to our Father the right way. After I understood it better it made me think of the priesthood and how it is another gate or pathway to the Lord.  When priesthood is used in its proper way it can give us a direct link to those on high, it can enable healing and comfort that pierces the soul in a way that can only be divine.  A memory from last Christmas that I will forever hold dear to me is when my grandpa Wally gave me an amazing blessing.  My mom’s parent’s always go to Arizona for the winter so we usually do our Erickson Thanksgiving in October and then we don’t see them again until around April so the fact that they came up and were around for Christmas last year was such a pleasant surprise.  We were all sitting around playing card games and singing Christmas carols when I got the impression that I needed to ask grandpa for a blessing, I didn’t want to interrupt so I didn’t say anything for a while but the feeling persisted and my mom must have gotten the same feeling too because we both suggested it.  My Grandpa and dad laid they’re hands on my head and grandpa spoke one of the most beautiful blessings I have ever heard.  I was blessed with health and recovery and that a doctor would be able to help me.  I hadn’t really even been to a doctor at all that year, I had just kind of given up on them but I had an appointment with a new doctor just a few weeks after Christmas who has been a huge part of why I’m not bedridden.  When grandpa finished the blessing I looked up and saw tears in his eyes, I have only seen my grandpa cry a handful of times so it was a pretty big deal.  I was able to stand and give him a hug which was also a pretty big deal. Grandpa proceeded to tell us all that he had only felt the spirit like one other time; when he was a giving a blessing that healed his uncle who had blood clots through his whole body and was only given a few weeks to live.  That blessing healed him and left a lasting impacted on my grandpa.  I didn’t know when I had that strong impression over and over that I would only get to see my grandpa one more time in this life.  He died very suddenly just a few weeks later. When I had the prompting I didn’t know that the blessing I was given would be the start of a whole new chapter of my life because since then I have gotten progressively better.  The Lord knew my needs, he knew that my grandpa was the best way to bestow blessings on me at that moment.  He knew how much it would mean to me because of how close my grandpa and I have always been and the Lord also knew how comforting it would be for grandpa to know that I was going to be okay, that he had done his part and that the Lord would look out for me.

The 4^th statement is John 10:11 and 14) I am the good shepherd: the good shepherd giveth his life for the sheep. 14) I am the good shepherd, and know my sheep, and am known of mine.

                I love the last segment in this verse, “(I) know my sheep and am known of mine”.  What I love about that statement is that what makes Him a good shepherd is not only that He takes the time to know who we are, it’s that he is inviting and encouraging us to come to know HIM.  Here we have this all powerful, perfect being that knows us wholey and completely and its incredibly important to Him that we get to know of Him, that he doesn’t wall Himself off from us, that He is not an angry condescending Lord, He is making a statement that it is His job to have His arms open to us.

The 5^th is John 11:25 Jesus said unto her, I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live:

God asks so little of us, do the little thing of believing and He will give us the greatest thing in existence: life. He loves us so much that he was willing to suffer every ache every pain, whether it be emotional, physical, spiritual, or mental; whether it be brought on by sin or whether it is just brought on by mere mortality.  If He loves us that amazing, immeasurable amount what does that say about us? What does it say about our worth?  Often we base our worth on other things, even good things such as our family and friends or on our strengths but those can become unstable crutches if we lean on them too heavily.  We need to learn how to feel and be of worth because of our eternal identity not because of outside influences. Through life’s trials we are stripped of all our “crutches” in order to have something better, a confidence and love for yourself that is based only on the love of Christ. Donald L. Hallstom put it best when he said; “No matter what your circumstances are it is essential that our preeminent identity is as a child of God”

All of these I AM statements boil down to one simple thing. That thing is Love, Christ is the bread because he doesn’t want those he loves to go hungry; Christ is the light because He wants to share knowledge and power with His loved ones; Christ is the door because he loves His sheep enough to protect them and guide them in which way they should go; Christ is the Good Shepard because he would never let even one loved sheep get lost without going after it and Christ is the resurrection and the life because His love for us enabled Him to suffer the Atonement for all of us to have the opportunity to live again. Through writing this talk I’ve relearned how much God really knows us and how He is waiting for us to search the scriptures and know of Him, He’s waiting for us to utilize the Atonement and come unto Him.  We need to believe and take to heart the words of the 4^th verse of the hymn “I believe in Christ” which says:

 “I believe in Christ; he stands supreme!

From him I'll gain my fondest dream;

And while I strive through grief and pain,

His voice is heard: "Ye shall obtain."

I believe in Christ; so come what may,

With him I'll stand in that great day

When on this earth he comes again

To rule among the sons of men.”

Have the Day You're Gonna Have

     After coming out of what was a really difficult summer, I'm trying to change my mindset about life.  I'm working on moving forward with the motto "have the day you're gonna have".  If I remember correctly that quote is from a movie called The Odd Life of Timothy Green after the mom says "have a good day" he says that's too much pressure so she changes it up to "have the day you're gonna have".  I think it's important for me to stop thinking in such a black and white way.  When you have a chronic illness a day is not wholly good or entirely bad, its a mixed bag of everything because things can change minute to minute.  Having the mindset that its okay for things to be not okay has helped take some of the pressure off.  Along with this philosophy I'm on some new medications that are really making my life easier by suppressing adrenaline rushes which not only helps me not pass out but also makes me less irritable.  I feel like I finally get to be the real me, and I also feel like I can handle my life more. So yay for medication that actually help at the root of the problem and don't make me crazy with side effects!  Since I've at least been feeling less overwhelmed I decided to do something fun and make an Instagram account so I can share all my knitting projects:)  It's amazing that something so simple can make you feel like you're accomplishing something with your day.

     As I move forward towards getting healthier I'm going to have the day I'm gonna have and have that be enough.  Because I don't have to wait to be healthy to be happy, or accomplished or have a worth while day, I can have that right now.  It'll all be mixed in with some hard, bad days but I think taking the day for the good that is has to offer instead of worrying about the state of where my life is as a whole has some merit to it.  

     So for anyone who is having a hard life I say lovingly, "Have the day you're gonna have!" ;)

P.S. If you want to follow along with my knitting adventures check out my instagram @knickknacknursery

I can't even

I wrote this today, but then went back and forth deciding if I should share it.  I decided to just go for it because it was so therapeutic to write and I thought it might help someone else who is having a hard day know that they are not alone.  I also thought it was important for me to be really honest about the grief and sense of loss that comes with chronic illness, and that that grief is not a one step process on the path to acceptance.  It cycles back around from time to time and I find feeling it deeply is far more helpful in moving on than pushing it aside.  So this is me being vulnerable and honest, because life is hard and it has to be okay to admit that.

This has easily been the hardest summer of my entire life.  Which may explain why I haven’t written a single blog post since the end of spring.  You know the saying “I can’t even”?  Well that about sums up my mood right now.  I could make an insanely long list about the “can’ts” in my life and although I try to be positive, some days I can’t even do that.  Because today I’m angry, and so disappointed in my life.  I know that it’s probably a passing feeling but today I feel it so intensely that I can’t brush it off.  I’m so exhausted with spending every second of everyday just trying to do basic things.  And although what I have isn’t terminal it has killed off what I thought my life would be and left me with no time to do anything except think about how to control my environment so that I can survive.  But I don’t feel like I’m surviving, that girl I thought I’d get to be, she’s gone, left at the wayside because you can’t focus on your breathing and try to control your heart rate and try to stay conscious and carry around big dreams all at the same time.  It gets too heavy to carry all that so because survival instincts kick in I’ve had to drop and walk away from whole pieces of myself.  And I guess the part that kills me the most is that I never had outlandish dreams of doing big great things.  My dream was to just live.  Live a boring, happy life.  I wanted to be a kindergarten teacher, I wanted to get married and have a family.  Really simple dreams that I still hope will happen but today they feel so far off, so far from where I am that they feel almost impossible.  And that’s just the thing, I’m really okay with a hard or painful life, I just want it to feel possible.  Tomorrow it probably will feel possible, because tomorrow is a new day and I can start anew, but today in this moment it all doesn’t feel possible.  Sometimes we just have to feel the feeling, even if it seems to crush us with its weight, even if it feels like the feeling takes up the whole room, even if you know the feeling may not be steeped completely in reality, even if it’s an all or nothing type of feeling, even if it feels dramatic, even if you know it will be gone tomorrow.  Sometimes we need to feel shattered so we can begin to put the pieces back together.

My Music

     So I was going through my email inbox and deleting stuff when I came across an email from myself titled "laptop stuff".  When I opened it I was very surprised to find recordings of me playing some of my favorite songs.  I'm not sure when these were recorded but it must have been sometime in the last two years.  I uploaded them to YouTube so just click the link for your listening pleasure:)

 

Here Comes The Sun

Fell In Love Without You

Moon River

A Comet Appears

Real Love

     And lastly I have a music video that my little sister directed, edited and came up with all the ideas for, but happened to have me sing in it haha.  Because she did all the work it's posted on her channel and not mine so just in case you haven't seen it here's the link!

Love Club

Thanks for watching and listening!

  

It's Possible

     It's April.  April always makes me think of the April I was packing up to go home after my first (and only as of right now) semester at college.  In my head that wasn't so long ago but in actuality its been four years.  Isn't it crazy how our minds freeze frame sometimes?  Here's an example that I've encountered as I've been doing physical therapy; as I do the exercises I think "oh this should be easy" but when I try I can hardly do it the first time.  My mind still thinks of me as a fit athletic person.  When I say that out loud it makes no sense because I have had chronic symptoms all my life, so why would I think of myself as athletic?  Well there was a small portion of my life that one of my besties and I would go to the gym and I loved it.  There was even one Saturday that we ran the equivalent of a half marathon on the track at the gym.  I even had pretty toned arms from driving a car without power steering.  Something in the back of my head has always thought of this sick part of my life as a "phase".  That all the sickness, pain, fainting, and mostly the being bedridden would pass and I would be okay.  Though this thought was NOT always at the forefront of my mind it was always there, sometimes buried, but there none the less.  And guess what?  I was right.
     This is not to say that I'm magically better or that today hasn't been hard, but I am okay.  I think thinking of myself as the fit, gym going girl I once was helped me pull out of where I was months ago.  I've been saying for a few years to my parents, "I just need a leg up.  A little bit of help so my body doesn't try and kill me.  I can do all the hard work after that myself.".  Well I got that leg up, with the medications I'm on now and even more importantly with physical therapy.  I needed someone who understood the physiology of my conditions in conjunction with exercising.  In the past I would exercise and get intense chest pain, coughing until I could hardly breathe and pass out.  I knew that exercise was what would help me the most but if it killed me in the process I couldn't really get myself motivated to do it haha.  The huge change with physical therapy is that I CAN exercise now because I start out laying down.  Peddling while laying down for a couple minutes increases your preload, which means you then have enough blood flow to sit up and do the recumbent bike for a few minutes.  Following that with a couple more minutes laying down and you're golden.
     As I've been doing physical therapy the past two months its lead to so much more functionality over all.  I even upped my Fitbit step goal to 2,300 and I've been getting that and then some most days.  In the last couple weeks there has probably only been one or two days that I have spent the whole day in bed, other than that I'm trying to be up and around more.  Even if that means dragging a folding chair around with me so I can sit instead of stand, my world has gotten so much bigger than my four bedroom walls.  I have been doing a lot of cleaning and dejunking with this new found energy.  Sounds like a weird thing to be excited about after being stuck in bed for so long but I've got to tell you I love getting rid of stuff.  I love organizing things and seeing them all in there specific places.  I love getting things done and I love planning new projects.  And when I'm all tired out from cleaning I knit.  I just finished knitting six bunny softies for a neighbor to give to her great-grandbabies for Easter, which was fun.
     The only problem I have found with getting better is I want everyday to be better than the last and sometimes its not that simple.  I've been waiting years, no decades, for someone to explain to me what is happening with my body and better yet, how to manage it.  And now I have doctors who can.  Even if the road to managing it is hard, I can do it.  I don't need easy, I just need possible.  And it is. It is now possible;)      

Grandpa Wallace

As many of you know I lost my grandpa about a week ago, and as I plan to attend his funeral this weekend I find myself reflecting.  Grief is such an odd thing isn’t it?  Somehow I feel that our own grief can feel more or at least different than those around us, because if everyone was feeling the same how is it that the world still spins on?  That sounds quite dramatic now that I’ve put it in words.  It’s just that he was doing well and I just saw him and now he isn’t here anymore.  I’m not at all saying that I loved my grandpa more than anyone else in the world because I know that all my siblings and cousins adored my sweet grandpa, but we did have a special bond.  Now before that sounds snobish or like I’m the best or whatever, let me explain.  

I am the third child out of five siblings.  I have been born into a very intelligent and somewhat mild mannered family.  I’m not saying I’m stupid or anything but academics have never really been my jam, I never enjoyed school and I am not mild mannered.  Now obviously no one told me that the way I am was wrong but as a child you tend to think that what you’re surrounded with is normal and I was so different than my family.  Back then I couldn’t see the huge benefit of my kind family, but thinking about it now if I’d had had a sibling more like me we probably would have been at each other throats all of the time.  My siblings can put up a good argument but they’re not so hotheaded as I can be and I see that as a blessing now.

I always felt incredibly loved but now I think I unconsciously felt like the odd man out a bit.  Which brings me to my point; my grandpa valued and even encourage the very things that I thought made me odd.  Grandpa Wally valued and praised me for my tenacity, spirit and feistiness. He taught me that I could learn even when I didn’t believe it of myself.  School was very hard for me as a kid, I continuously struggled with reading all through elementary school, and that struggle made me lose some confidence in learning.  Grandpa didn’t care that I couldn’t quite read yet, it didn’t matter that times tables were the hardest thing in the world, he believe that I was capable.  As my siblings and cousins will remember that he would let us ride his horse Tera by ourselves when we were only about 3.  Granted we were in a small corral, and she was the perfect kid’s horse but it did feel like I was being trusted to be in charge of a huge animal.  I’ve always liked being in charge and though I was no better a rider than my siblings, in my head I was and that gave confidence.

I remember going up for about a week every summer as a kid, with either my family or my cousins who are similar ages.  My grandparents have owned a farm in Idaho for my who life.  To give you an idea of my grandpa he is a little bit of a quiet John Wayne type.  A good ‘ole cowboy, not much of a talker and a hard worker.  He was 87 when he passed away and just this last summer he raised cattle like he has every year.  It was only about a month ago that he sold some of his land because “irrigating 13 acres might be getting a little tough”.  One tough cookie right?:)  Well on these summer visits grandma would usually plan some fun crafty thing that we could do inside with her and I remember always asking “but what’s grandpa doing?”.  She’d usually reply with “he’s going out to irrigate” or “feeding the cows”, no matter her answer I always told her that I’d head out with grandpa.  I now realise that she could’ve taken that offensively but I never stayed in long enough to find out.  I would run out to the corral where the four wheeler was parked, but before we could go out and about it was always my job to open the gate while grandpa drove through.  He’d wait while I closed the gate and then I’d jump up in front and pretend to steer as he drove.  After a few years he started letting me drive.  He taught me about how the irrigation worked, he taught me how to catch a fish and not long after he told me that I needed to learn how to gut it.  He let me ride Tera out in the pasture and even out on the road following him as he rode Rascal.  He had me drive his truck back and forth between the barn and the house so I would know how to drive a stick shift.  Once when he was about 80 he even struggled with a bucking horse to keep her from rearing up while I was on her.  Admittedly I probably shouldn’t have gotten on a horse that I knew so little about but by the time I thought about it more I was already in the saddle and she was rearing up.  I know I could have suffered worse injuries had grandpa not grabbed the lead rope and wrestled with her to stay near the ground while I jumped off.  She did back up onto my leg before I could get off the fence and I had an amazing bruise for weeks but it would have been so much worse without grandpa’s help. 

In later years he prayed for my health at every prayer.  He held my hand and sang “Michelle, my belle, these are words that go together well” while I laid half conscious on the couch.  When I came to a little more he looked at me with a tear in his eye and said “We just love our Michelle so much.”  He didn’t even mind the flight of stairs he had to climb to visit me when I couldn’t leave my room.

It was only a few months ago that I had a terrible nightmare that Grandpa Wally died.  It shook me up pretty good, but then because I was thinking of him I wrote him letter, just a simple thank you for being an amazing grandpa.  After he received it he called me to tell me how much it meant to him, and if that wasn’t enough he drove 4 hours from their house to mine just to see me.  There was another day maybe a week after that visit that he came down and spent the day with me.  We watched ‘True Grit’, the original one with John Wayne obviously and then after that he took a nap in the chair in my room and I took a good nap too.  I know that sounds silly but it was one of my favorite days with him.

My grandparents were even here for Christmas this year.  They usually live in Arizona for the winter but they happened to be in town and so grandpa got to see most of his children, grandchildren, and great grandchildren.  We sat around the piano and sang Christmas carols one night.  It was so lovely because my grandpa has always loved singing.  About a week before he went into the hospital I talked to him on the phone told him how well I’ve been doing. I had been playing the guitar before my mom had come in with the phone so she asked me to sing for my grandparents.  I played “Hey Jude” and then said goodbye.  Oh how I wish I would have savored that conversation more.  When he was at the hospital in a coma my mom went to be with him and I asked if she would put the phone up to his ear.  I can’t remember what I said but I was told later that he wiggled his toes in response.  Less than a week later my dearest friend and biggest hero slipped peacefully away to heaven.

My heart broke.  It ached and I cried.  Late into the night I listened to old recordings of grandpa singing. I felt peaceful about his passing, which I had thought would make the grief easier, but it still hurts.  The person who helped shape who I am isn’t on this earth anymore.

As I cried something kept nagging at me, what was the song that grandpa and I sang at my sister’s wedding?  For the life of me I couldn’t remember.  I got up and looked in my music binder, where the wedding songs are separated out from the other music.  I opened it and was reminded that the song was Love Me Tender by Elvis.  As I read the lyrics, these words came through to soothe my soul in my grandpa’s sweet singing voice:

Love me tender,

Love me long,

Take me to your heart.

For it’s there that I belong,

And we’ll never part.

Love me tender,

Love me dear,

Tell me you are mine,

I’ll be yours though all the years,

Till the end of time.

So this is a long way to say I love you Grandpa Wally.

 

~My favorite picture of us together, along with his barrel racing 

spurs that he gave me a few years ago~

Looking Forward

     2016 started out strangely magical.  As a family we always eat seafood and do "cheers" with sparkling cider.  We set goals for the new year and say things we enjoyed about the past year.  We usually finish up around 7 or 8, and then some of my siblings went out to party it up.  New Years Eve has never really been a big deal to me, I've never gone all out or even gone to a New Years Eve party.  I guess I missed the boat on what the big deal was all about.  So this year I figured I would go to bed like any other night but I ended up staying up watching a movie.  At about 10 mins to midnight I got myself a glass of sparkling cider to toast to the new year.  Midnight came and I opened my blinds to see fireworks from all around, I still had the Christmas lights up in my room twinkling and as I sipped my sparkling cider I had a magical little moment and a huge excitement for the new year.
     So it started out well and has continued to get better.  I've gone to church for the past six Sundays in a row and it has giving me such a spiritual boost.  I also made a few changes to my room by adding a DVD tower that spins so it can take up less room but hold my whole movie collection, a new bedspread and most excitedly, a picture collage.  I made the collage on a very good day and so now when I see it reminds me of feeling well and optimistic.  I put some pictures of myself that I love, some lovely quotes and a picture of the temple.

     The bedspread is a little 80's floral.  It actually reminds me of the wallpaper that was in my parents bedroom in our old house.  I love it, it seems grown up, minus the stuffed animals haha.

     Here's a close up of the collage.  I like that its still open enough to add to and put up things that I want to envision for my life:)
     This week I was able to go to an appointment with a doctor who sees a lot of other P.O.T.S. patients.  There isn't actually such thing as a P.O.T.S. specialist but he is the closest you can get to it.  Since he has so much experience with other people dealing with my same illness I was excited to see what he had to say.  The appointment went well and he gave me a more in-depth explanation of P.O.T.S and how it works, or rather doesn't work.  He had some new ideas about what to do and explained why I really do need to follow through with other ideas.  One thing that I'm not exactly excited for is raising the head of my bed eight inches.  It puts my bed on a significant slant and isn't very comfortable for sleeping.  I've tried it once before but I hated it so much that I gave up and had dad put it back flat.  Dr. Colby explained that having it on the slant will force my autonomic nervous system to work out through the night which also explains why it was so difficult to sleep like that.  So instead of getting to lay down, rest and go to sleep, my body is still working hard trying to bring blood up from my feet to my head.  I'm trying to have a good attitude about it but honestly I've been a grumpy mess.  I don't know if people (including myself) realise how hard it is to live with someone who has a chronic illness; throw in a lot of irritability and it becomes pretty impossible.  I am going to try my absolute best to follow doctors orders and at the same time not be too grumpy.  It helps that the plan sounds hopeful.  I feel like doing all the things at once may help, so I'm really excited about that.
     Other than all that I've been knitting and playing the guitar.  Playing the guitar has been so therapeutic and I love it:)  It's been awhile since I've been able to sit up long enough and sing along as I play, its another way that I'm proving to myself that I'm getting better!