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

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

progressing with multiple sclerosis: an update on Mike

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

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

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

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

walking in 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

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

MOMS LIVING HAPPY

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 

DESIGN DAZZLE  for TARGET here and here

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

here on SWEET DREAMS ARE MADE OF THESE

and here on POWER of MOMS

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

a little light and truth - the role faith plays in my family's adjustment to my husband's diagnosis of Multiple Sclerosis and my Daddy's recent passing from cancer 

the parable of the swing  |  what to do about cave drawings and spills and tears    |   10 tips for styling the whole boy    |   acceptance is just out of my grasp    |   mr bowlerman & miss charleston - an applique tutorial   |   back to school photoshoot   |   marquee love   |   the mental challenge: by mike   |   mr right and little miss t-shirt tutorial: adventures in freehand cutting and freezer stencils   |   in pieces

'gateway to summer' door banner diy tutorial   |   the morning we feared    |   an unhurried day: felicity is princess for a day, her birthday that is    |   handmade valentine swap: helping to revive the art of the penpal    |   love her mother    |   to simply begin, one branch at a time  |  our new family photos  |  backyard date night corsage: a little tutorial  |  black and white and smiles all over: cousins captured  |  

my Daddy's passing  |  Mike's battle with Multiple Sclerosis  |  my dream of building my blog to provide for our family  |  miracle of a rebuilt heart for baby Abigail  |  our uninvited guest of unemployment  |  14th wedding anniversary  |  homeschooling Owen  |  Craft Explosion

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

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email me at sewhappytogether6 at me dot com