Thursday, December 10, 2015

the time has come: a wheelchair for Mike


the time has come
the doctors said it would be twenty
but its been six
Mike needs a wheelchair

it is pretty crazy how things have progressed so quickly in such a short period of time
and i don’t just mean the progression of Mike’s Multiple Sclerosis
i’m talking about Mike and I’s view on things

when Mike was first diagnosed I tried to will my will onto him
try this
read this
do this
don’t do this
all in the name of love of course
i’m a fixer and it has been rather torturous not to be able to ‘fix’ this
Mike’s will is his own and it took me awhile to understand that
and to see that this strong will of his would in fact be a large reason he would thrive the way he has amidst such trial

he needed to come to decisions on his own
and i have learned how to give my input without guilting him into following it
we have gone through stages of ‘fixes’
medication
natural remedies
supplements
diets
physical therapy
and then alongside these have been the stages of his physical decline where i wanted him to accept help
from others
from a cane
from a walker
from a wheelchair
but he needed to come to terms with things on his own time
some of which he still refuses
and i have had to accept it at varying times along the way

i had to accept that he would crawl up stairs instead of asking for help or allowing me to move our TV downstairs
i had to accept that he would cook as long as he could using a chair sometimes to sit on and sometimes as a stabilizer behind him for support and balance
because he knew that cooking was my number one stress and he loved to do it
i had to accept that he would sweep the kitchen floor while cries of pain would inadvertently escape his lips
i have had to accept so many things that i saw as hurting him 
but he saw as retaining his purpose, his pride, his worth, his display of love, his ability to be a father and husband
he is the very best of men
all who know him know this

so when friends reached out to us to start a campaign to help us get a wheelchair 
a wheelchair accessible vehicle
and a wheelchair friendly home
i knew it wasn’t up to me
it was up to him to decide to accept the help or not
its tough being in a position of such need when your heart cries out to just give to others
but we have learned that through accepting help,
although painfully humbling at times,
has brought us lasting friendships and breathing room just when it was needed most
we are so grateful for the human desire to lift one another
we have felt it from each of you
your kindness sustains us

upon finally agreeing to this fundraiser after many ‘no’s
the idea of a wheelchair really sunk in
a wheelchair
isn’t that something so confining, so restrictive
doesn’t that mean all hope is lost
Mike and I have come to see a wheelchair as just the opposite
freedom
freedom for Mike to reserve his energy for other activities instead of painfully walking with concentrated effort to move each foot
freedom to get outside of our house for our sons’ sports games
freedom from falling frequently

it has taken us a long time to wrap our mind around this view of a wheelchair

with the hope this campaign has brought
Mike had a wheelchair rep visit our home with a snazzy model to test drive that would give him all the support he would need
one that will be ready for his continued decline as years progress

i have to admit as Mike texted me a photo and an accompanying video of him in the wheelchair
i was not prepared for what i saw
although my intellect told me that a wheelchair would bring freedom
this image hit me like a ton of bricks and i walked outside my work to cry in private
how could we be here already
how could this be our reality
how could this man who would run to the ends of the earth to help someone else
be destined for this

forgive me as these emotions are still fresh
my intellect will catch up to them and will speak reason to bring me around again soon

the reality is here
whether i am ready or not
and with your help we can set Mike free

thank you to those who have contributed already
named or anonymous
your generosity and kindness are making a real impact on our life
we love you all

to find out more about Mike’s story and our journey with Multiple Sclerosis check out these posts here


to find our more about the campaign ‘Go Big Because its Mike’ click here or go straight to the Fundly page here

Sunday, November 29, 2015

a new home: the start of a new chapter


i have never been more thankful for a hole and a pile of dirt in my life
and with 3 boys there have been plenty to go around 

after one miracle after another and another 
we will be able to build a home 
one designed with mike's current and future needs in mind
two years ago when we applied for Disability I never would have guessed we would be blessed with this miracle 
when we were denied Disability after a year i wondered how we would make it and why this was happening 
i am thrilled to say that the timing of finally being approved for Disability set into motion a series of unforeseen miracles that will now allow us to have a place of our own  

after moving 15 times we will finally be able to put down roots 
in a home where Mike and our children will thrive and feel secure
no more questions from them of when we are moving next

generally the kids are happy to move
with the exception of one teen pictured
the size of our yard is doing much to persuade them that leaving their friends one more time will be worth it

i am thrilled that Mike will have the accommodations he will need to live life with more ease
and have all of the things he needs on one level
especially since the need for a wheelchair has come

for me i will be nine miles from work
a comfort and a convenience and peace of mind
it won't hurt that i will get to select fun things like paint colors and lighting fixtures either

i think back to those moments of wondering why we were being denied the blessings that in my mind seemed to have not come at a better time
how grateful i am that there is one that can see more than i
i think questioning the timing of things will be a lifelong obstacle for me
but more and more i am beginning to trust God and his timing 
oh there's still the woes in the midst of the storm
but evidences of past aid find their way into my mind and heart more often
delivering that desired calmness which smooths over my eruptions of despair or panic more quickly 
sometimes these episodes come when I think of our future and what that means for Mike's health and our family
and although the circumstances of our trials are not being removed 
the Lord shows us time and time again that he is moving mountains for us so that the climb we are making carrying our load feels possible  
and indeed there are times when He walks the trails beside us, carrying it himself

we have been so grateful to so many of you who answered my call from my last post to come and visit Mike or send him a video or note
our home has been filled with visitors 
and our mailbox and inbox have been filled with messages
it has brought Mike so much joy
and tears to my face
our new home will need to echo your warmth so consider this an official invitation to our new home whenever it's finished
we'll sit on the back porch and sip some lemonade

Wednesday, October 21, 2015

progressing with multiple sclerosis: an update on Mike

living with multiple sclerosis as a father and husband

we are not meant to carry things alone

at times when this journey feels so lonely
when i keep quiet to avoid being the heaviness in the conversation
when one more thing just makes me feels like i will shatter from the pressure
when i ache watching my husband suffer
at these times without fail i have not had to carry on alone

you have been there
in a text
in a phone call
in a comment
in a song
with a load of folded laundry
with a bucket of cleaner
with a meal
with your car keys in hand

and because you have been there
i know He has been there
aware of my sorrows
reaching out to let me know
i see you Briana
i see your husband
i see your children
and i will not leave you alone
the weight you all carry may seem heavy
but i will send you people to help you carry it
for you are not meant to carry it alone

this week we received difficult news regarding Mike's health
the disease has accelerated from one type of MS to another
from relapsing/remitting to progressive
from an ebb and flow of symptoms to a constant decline
and an aggressive one at that

there is no specific medication for progressive MS at this time
but there is hope for one in 2017
there is however a medication not designed for MS that has shown some success that we will be lobbying with our insurance to try
we would love your prayers and positive thoughts as we advance through this approval process both to be able to try the medication and for financial assistance to do so
as it is very expensive

as you can imagine this news is daunting
i have watched with great alarm as Mike's health has declined rapidly over the past 3-4 months
and yet his spirit remains determined to be happy
just this monday on our special family night
he implemented the Positivity Project
in which he encouraged us all to channel our perspective and the words we use to demonstrate positivity

the struggle for Mike to be himself is real
the physical and cognitive limitations take a toll on him
and take him away from us for a time
but he comes back to us
and you know when he feels like himself in a big way
when he has visitors
so if you have some time
if you have been blessed by Mike in any way
i ask for you to come visit him
he is homebound almost exclusively
and while i am at work
the battle is real for him to be present while he is alone
come laugh with him
renew a friendship
strike up a friendship
he's the greatest man i know
and he needs us right now
he needs us to help him remember who he is
how brave he is
how witty he is
how insightful he is
how faithful he is

if you live far away
give him a call
do Facetime
send him a text
jump on a plane to come visit
we've got a guest bed ready for you

we thank you for your kindness
we thank you for your prayers
they sustain us
and we feel them
for we know that when you have been there
God has been there

Saturday, June 20, 2015

The LifeBeats Project



friends i am so grateful that you have stuck around for this ride
that of the journey of transition and finding happiness
as we have adjusted to living with Mike's multiple sclerosis 
as well as my pursuit to provide for our family in a way that will allow me to preserve our family lifestyle as much as possible

i am so grateful for all the things that have come into my life that have provided me 
with learning opportunities and communities of support
and have aided in refining my path towards financial self sufficiency through pursuing my passions

the next stepping stone in this journey comes with much anticipation and joy
as it has so much to do with you
on the wise urgings of my husband who has told me to 'just start'
as opposed to my natural tendency to want to know everything from the beginning to the end
i have 'just started'
and am now able to share the beginnings of this incredible project with you

it is with much excitement and a truckload of butterflies swarming my stomach
that i present to you

The LifeBeats Project is a podcast and blog dedicated to Pursuing the Art of Living Extraordinarily

its a celebration of the extraordinary that already lies within you and
a practice devoted to helping you achieve a breakthrough
to illuminate more of it in yourself
and the world around you

i will be interviewing everyday people like you and me
and sharing their inspiring stories of extraordinary living

as well as expert guests who will share with us practical and applicable steps we can take to help us better our lives and enrich those relationships around us

Listen to my 10 minute introductory podcast over at www.thelifebeatsproject.com 
that will share more about how my passion was sparked and ignited
as well as what you can expect from upcoming episodes

be sure to subscribe with your email address to receive notification of when my first podcast will be released
beat alongside of me in all the beginning stages on instagram @lifebeatsproject

and of course I would love to hear from you
my longtime friends
please share with me your thoughts by commenting below or emailing me at briana@thelifebeatsproject.com
and if you would like to share your story with me
or someone else's story who has inspired you
please share it with me at the above email address as well

thank you for your continued support 
the impact your encouragement and confidence in me has provided
has helped carry me through this rollercoaster journey

Thursday, March 19, 2015

every life matters Q&A


i am honored today to be featured in a meaningful blog series called
Every Life Matters
by the fabulous Katie from Dotson Love
her zest for life is contagious
and her mission to help the world see that every life matters resonates with my own passions

read my full interview Q&A here
where i answer some fun and tough questions like...
how i keep focused on the things that matter instead of the things that scream the loudest
how i've overcome times when i have felt like i haven't mattered
what our family fights over
and of course what i am passionate most about

be sure to say hi over there 
and even stay to read some of the other powerful interviews of some incredible women

Sunday, March 08, 2015

our surprising news


to borrow from a classic movie scene
if we woke up with our heads sewn to the carpet
we wouldn't be more surprised than we are right now

another little person will be joining our family
yep, you guessed it
we’re pregnant

if you’re shocked
you can bet you are in good company
it still seems surreal
the chances of this little one joining us are pretty much one in a million

as i have processed this news over the last few weeks
i have passed through every emotion possible
mike has been my calming influence

a few things are for sure
this child was meant to come to our family
it will be loved with all the squeezes and snuggles that a baby can receive
the Lord must think i have a lot more to give

He will mostly definitely provide what we need as he has in every uncertain circumstance of this our Johnson Journey

Sunday, February 01, 2015

walking in faith and fear

faith and fear


in my mind i think that knowing the end from the beginning is what i really want
because only seeing my journey a step at a time
means there is only so much information available for me to base a decision on
which leaves so much remaining space for the unknown

so what do i fill in that space of missing data
that unknown 
that is beyond this step i'm currently evaluating taking
will it be filled with 
fear or
faith

now i've heard that where one exists the other can not 
but i'm telling you 
i choose faith
but i choose faith in spite of all the fear that is creeping in

i will take a step in faith 
with fear at my side
but i pray that with each next step i take
fear will trail further
and further
behind


what has your experience been with faith and fear...
would love to hear from you

Wednesday, January 21, 2015

new reader? start here


hello there new friend! 
pleased to meet 'cha
i'm briana and welcome to my blog Sweet Dreams are Made of These.  i see life in a swirl of colors and ideas and do my best to create some sort of order.  to read about what swirling elements make up my family of 6 read here
for some divulged random facts about me click here or here including my mixtape for life
recently my hubby has joined me as a co-blogger and our goal is for this to be a joint space for us
get to know him here

this year
i have helped brand and launch an organization that breaths life into the soul of mothers
and opens their eyes to see that their journey
the one they are living right now
is worthy of inspiring others
so come inspire and be inspired at

through my own journey i have discovered my true passion
people
i love people
people are beautiful
you and you and you
and i want to celebrate you
i am all giddy inside just thinking about my next venture 
which will share that passion with you this year
watch for it
be a part of it

see more of what i've done this year as a party blogger contributor to 

and more of sharing our family's journey with hardships such as Multiple Sclerosis and cancer

here i blog about: 
the dish on mommyhood for four young active children {3 busy boys and 1 'baby girl'}- family fun, specializing in mayhem
my creative outlet - the essential part that creativity plays in finding joy in each day 
see my growing list of diy/tutorials here








thanks for reading Sweet Dreams are Made of These
grab your favorite bunny slippers and stay for awhile...
i would love to hear from you.
your friend in this journey,
briana

follow me on bloglovin
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follow me through email
email me at sewhappytogether6 at me dot com


Sunday, November 09, 2014

our five year journey with Multiple Sclerosis

dealing with symptoms of multiple sclerosis

i was asked by a beautiful friend of mine who also has MS and is very involved with the MS Society
if i would submit Mike and our family's story for her to share
one focusing on the effect of the disease on our family and how our lives have changed because of it
i was indeed grateful for this opportunity as it gave me time to reflect on these past five years
i cannot believe it has been that long 
and yet it feels so much longer since our lives are completely different

i only had a few paragraphs to share our five plus year experience with the effects of Multiple Sclerosis on my sweet husband
i pray i did it justice

thank you for sharing in our journey


I am honored to share with you a small part of my husband and our family’s journey with Multiple Sclerosis.  The summer of ’09 found my husband Mike in a thriving career with Apple as well as the backyard soccer hero to our three small boys, when our world was turned upside down and inside out.  For three months Mike had not been able to swallow food, losing weight at an alarming rate and suffering tremendous fatigue and weakness, to say nothing of the intense worry we faced.  We had found ourselves on the trail hop from doctor to doctor looking for answers.  When the diagnosis finally came, we were stunned.  I will never forget looking across at each other that night, not knowing what to think but feeling tremendous fear and as if our future plans and expectations of our life together were slipping through our fingers. 

The passing of each year has brought one family adjustment after another, and the onset of unexpected symptoms and the loss of functions for Mike.  We have learned together as a family the effects of the disease.  As fatigue, pain, temperature intolerance increased, and taste, sight, cognition, balance, and mobility decreased, we began experiencing little losses we had not expected... 
no more backyard races with the boys, loss of stamina to prepare meals that brought him delight and stress relief, inability to watch our boys’ sports games due to hot or cold temperatures, no more walking hand in hand on a date, and so many more.  

Blessings have come as well, one in the form of a beautiful baby girl, the child we had found out I was pregnant with the exact day we received Mike’s diagnosis. One night when our little girl was very young, I left her at home with Mike before putting her to bed.  Being beyond exhausted after a long day at work, Mike did not have the strength nor the balance to carry her up our stairs.  With her in his arm he sat on the stairs and tread by tread scooted and crawled his way to the top of the stairs to put her to bed.  My heart broke when I came home, not realizing that such a simple task would be so difficult for him.

Because of his love and sense of duty as a father, husband, and provider, Mike worked for as long as he could.  Leaving his career at Apple at the age of 36 due to his worsening symptoms.  He then worked for three additional companies trying to do what he could to provide for our family.  Mike has a gift of the mind and of words.  He has a thirst for knowledge and had a photographic memory.  He was a linguist, a scriptorian, a passionate researcher, an author, a teacher, and one of the those guys that would win Trivial Pursuit on one turn.  

The most difficult of symptoms, that of drastic cognitive decline, has robbed him of so many of his gifts and pleasures.  This decline has produced emotional scarring due to his inability to provide for our family any longer or function in his roles as a husband and father as he would wish.  He suffers from confusion, memory loss, inability to concentrate or perform simple tasks, as well as absent seizures.  He is home bound while I am now the sole provider for the our family of six.  When he has moments of physical and mental strength he does what he can at home and I have had to learn to let him, despite great sacrifice on his part.  I have learned that although his suffering is audible and quite visible when he does these tasks, I must allow him to do what he can to feel he is still contributing to our family and retaining what independence he has left.

Today our children are strong, having had to learn independence as well as reliance on one another.  They are brave, they are aware, they are compassionate and protective.  God has blessed us greatly.  He makes himself known to us each and every day through the kindness of others who bring my children home from school, come visit Mike on their lunch break, wash our laundry each week, take my son to football practice, and so much more.  

Mike is my champion.  His desire to make me happy, help where he can around the house, and remain loyal to his faith while instructing our children, renews what I knew the day I married this man almost seventeen years ago, how lucky I am to be able to be by his side each and every day.  Sometimes the future is scary, sometimes we wonder how we could possibly adjust to one more thing, but we continue to put in the work and step forward in faith that we can make our life full and joyous no matter what is on the horizon.  



{to read more of our journey with Multiple Sclerosis, click here}

Saturday, October 18, 2014

Forever Young Club with Nerium AD Giveaway


forever young
i want to be forever young
if you are a child of the 80s you have already begun singing alphaville's synthesizer led ballad 

i feel so privileged to be able share products with my family and friends that contain natural ingredients that have been scientifically proven to improve the appearance of the overall health of your skin by an average of 30% in a 30 day period
yep, you heard that right...30%
you can't get much closer to forever young than that
the products you are buying from your dermatologist or local department store, even the high end ones
are only improving your skin 2 - 7%...what?! 
yep...30 vs 2 - 7 
i haven't taken a math class for awhile but i know my greater than and less than equations
30 > 2 - 7

a few bloggers joined my Forever Young Club this month and had the chance to try out Nerium AD
for two weeks
hop on over to their blogs and Facebook pages to hear in their own words what they experienced and loved about Nerium
it is so much fun to be continually adding to my photo gallery of before and afters from people that i know and are experiencing incredible results with Nerium

check out a few of the participating bloggers and their before and afters
i love how the array of results shown below really represent the spectrum of improvements you can get from our products 
  • reduction in the appearance of deep and fine lines
  • reduction in the appearance of pore size
  • reduction in the appearance of discoloration and age spots
  • improve the appearance of uneven skin texture
  • improve the appearance of aging or loose skin

then head to the bottom of the post for a chance to win one of the 2 Nerium Age-Defying Night Treatments up for grabs


"No makeup! Circles gone, overall skin tone evened, deep lines are softened."
Frieda from Frieda Loves Bread


"I did see a big difference in my overall skin quality and it seemed to really brighten up my skin tone."
Lara from Hapa Girl


"I had a more even skin tone and better color.  The creases by my eyes really improved too!"


"I’ve always hated the size of my pores and that’s what I noticed the most change in and also the even-ness in my skin."
Lindsay from Frenchie

now you can become part of my Forever Young Club with Nerium AD
click over here if you would like more information  
click over here if you can not wait another day to start getting your own phenomenal results

enter the NERIUM AD Giveaway
TWO lucky readers 
will WIN ONE bottle of Nerium Age-Defying Night Treatment

a Rafflecopter giveaway

this giveaway will close at midnight on Oct 21st MST
this giveaway is opened to US residents only
the winner will be chosen using Rafflecopter 
they will have 48 hours to respond to the winner notification email. after 48 hours another winner will be chosen
2 winners will win 1 Nerium Age-Defying Night Treatment valued at $110



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