just where we are: family photos by Heal Courageously

the moments turn into minutes

the minutes into hours

hours into days

days, weeks, months, years

it has been years since we have had our family photo professionally taken

and so when Michelle from the incredible organization Heal Courageously offered her free service 

of taking our family photo

i was elated

Heal Courageously is a non-profit organization which provides a free service to those dealing with life threatening illness 
patients, care givers and survivors 

in which photographers volunteer their time to capture life just where they are 

in what Michelle calls “the night side of life” 

this time of life that shapes us the most  

she gives them the opportunity to to reflect back on those things that cannot be taken by illness  

to hear more about Michelle, her story, and why she founded this organization

be sure to check out my LifeBeats Project podcast with her here

"learning connection while being broken open: how cancer gave me my voice"

i am sure you have all experienced the stress that comes with getting ready for and taking family pictures  

this experience was nothing like that  

it was freeing 

it was freeing to know that some one was coming to our home for the purpose of capturing us just as we are  

no wardrobes were purchased 

no predetermined poses 

just us  

we had not had our family photographed professionally in over five years 

and so much has changed  

Michelle and her photographer Emily came to our home and were there to serve  

their presence was calming and warm  

we captured Mike in his wheelchair 

with his garden

with each of our children  

we captured him and i together 

and us as an entire family in our home 

and on our back porch  

emotions were there on the surface as I watched my little family 

and cherished where we are 

and that we could capture this time in our life together

here are just a few of the many photos captured

that will forever freeze this time in our life

in our home

our beautiful home

16 moves in the making

where we can thrive as a family

and provide the clinical material for each of us to grow into our potential

i can't wait to watch

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

our five year journey with 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}

the book that saved my husband

what would you do if you couldn't think

no really

you couldn't think critically

ok so i hear some of you sleepless moms of littles saying, that's me everyday

trust me, i get it

but what if you had had a photographic memory, could recite passages of scripture and literature poetically, were fluent in cantonese, and knew every line in every single Seinfeld episode and 80s movie 

and now could not force your mind to complete simple tasks, remember what you did this morning, remember who you spoke with about what, or form words properly when you spoke

to have a ghost of a memory that you once knew so many beautifully rich things 

this is just a mild taste of what my brilliant husband deals with on a daily basis

so when i tell you that Mike just finished a novel

it is with absolute elation that i tell you that my husband just completed his first novel

for those of you who know Mike

you know of his passion for books

his thirst for reading

his in depth studying

his fascination with word choice

being drawn into other worlds

living life through the eyes and passion of another

this same passion was born into the soul of our son

for years Mike has had a story in his mind to write for Owen

a story that explored ideals that he wanted our son to seek after

ideals he felt were lacking in the world our son was growing up in

Mike wasn't able to dedicate time to write this story before

well, because he had been busy with so many other things

now his daily life is quite different

a type of different that tears at my heart leading me to often times turn my head from Mike's view so as to hide my tears as i witness his daily struggles and see his brilliant mind dormant

i turn away so he does not witness my moments of inner battle that read on my face, 

'why him' 

'why must he suffer so'

but as always the Lord has extended mercy through something very simple 

imagination

imagination flows from dreams

from ideas of our own making

without limits or the necessity for critical thinking

for this reason and a miracle that the overall idea for the story was stored in a part of Mike's long term memory that has been unaffected by his Multiple Sclerosis

Mike was able to write his book

now the process of writing for him was quite different than it would be for you and i

every morning he would forget what he had written the day before

he would forget the storyline, the characters, the direction

every day he would have to start anew, rereading what he had written the day before

learning to take exhaustive notes of any upcoming details of the novel, knowing that in a few short minutes or hours he would forget them

day after day this routine repeated

until nearly 100,000 words were written

a novel completed

out of this process came something beautiful

something life-saving

this book saved my husband

as i sure you can imagine 

having so much of what you would consider your identity and role taken from you

having limitations hinder you from fulfilling those duties you delight in performing for those you love

then battling extreme fatigue and intense pain to carry out those things that remain for you to struggle through

experiencing all of this would throw anyone into a period of questioning your worth 

into period of self doubt and dare i use the 'd' word

being able to write gave him a purpose again

a feeling of contributing

even a feeling of meaning

it brought excitement and structure back into his day

even life

something to look forward to

and although it was difficult to have to start over every day, he could look back at what he had written the day before and see that he was accomplishing something

i loved seeing that passion and vibrance for life return

you could see it in his face

you could hear it in the way he spoke

you could feel it in the energy of our home

he was writing something of value for our son

which became something of value for himself

and something he hopes will be of value to many youth and parents out there 

for he is planning on self-publishing it before Owen's twelfth birthday in May

i want to have Mike tell you more about this experience himself

i know how much you love hearing from him

he has just begun sharing his first draft with family and friends

and is looking for a few others who would be interested in reading it to give him feedback before he sends it to a copy editor

if any of you are interested in reading a copy of his first novel, please contact me

it is entitled, CHOSEN, the quest for the eight keys

and is a young adult novel full of adventure and hilarity as only Mike could write

it is brilliant and we have already received incredible praise from those who have already finished it

including one speed reading son who absolutely loved it and can't wait for the next one in the series

i am beyond proud of what Mike has accomplished and am so happy to see him move forward with self-publishing

i am so grateful for this gift that God has granted him

this opportunity to free his mind and spirit

in a way that will be immortalized for his children and generations to come

my Christmas wish

as the list of things that i should be doing are adding up in my mind
i am drawn at this time to reflect on some quiet moments that have transpired in our life the past little while
i have missed writing
for this is how i truly am able to reflect on the goodness in my life

as many of you know mike has begun treatments for his MS up here in utah where we have moved for a variety of reasons
but mainly to be close to a specialist we feel confident in and have easy access to
due to the nature of the progression of mike’s disease
some days, lots of days are just plain hard
in my mind and i think in the minds of others 
making this huge change in our life must have equated to the lessening of daily difficulty
if not for that
then why would we have moved
well the truth is that we have seen many moments of illumination that have shown us that indeed this is the place we need to be
we have already seen blessings in various aspects of our life
we know that a path of tremendous growth and hope is before us
but the weight of what remains the same and even the weight of what has changed 
lies heavy

what remains the same

mike continues to struggle in a very big way
physically, emotionally, and mentally
it is a daily battle
hearing him laugh and seeing the relaxation of his face when the pain has lessened are two of my favorite things right now
the humility and gratitude i see in him makes me love him more and more
i feel a tremendous honor to be his wife

what has changed

mike is no longer able to work due to a dramatic decline in his cognition
we have been sustained by the benevolent generosity of family
and i have been giving all i’ve got to my Nerium business
with full confidence that soon it will be able to put us on a path of independence
mike is my biggest champion
as i am my own worst enemy some days
i admire moms who have worked while raising their children
i admire men and women who have the fire of confidence with the skills of communication and the ability to inspire
i admire those who work with laser focus on what they want for the good of their family and don’t let rejection or obstacles get in their way

i tell you i am being stretched and molded into a woman i never knew i could become
one that never would have been uncovered had the need for me to rise not have been there
one who has had to rely heavily on the Lord
as well as newly acquired knowledge though good books of all varieties
and persons of great influence and motivation
all lending to the building up of a woman of greater courage and drive
but along this path of digging for deeper conviction and leadership capabilities
those qualities that need to be attended to most have been widely exposed
and sometimes for a vast public to see
those deeply rooted insecurities or inadequacies are paraded in front of my eyes and in front of so many others
a long line of them
i have put myself out there for all to witness not only my successes but my struggles
but as you see me pick myself up over and over and over
i hope that above all you will see that as i lift my head up again and again 
that my gaze 
my step 
my direction 
continues to be drawn toward what it is i must do and who i must do it for
at times i hope i will glance down to see who it is that is carrying me and give much thanks

two such moments i would like to share with you

a few nights ago
was one of those moments when the weight just seemed so great
one of those times in which the heaviness of what you carry causes the strength in your legs to give out
i found myself flat on my knees alone in our front room 
only the light of the Christmas tree to illuminate the tears running down my cheeks
no one else to hear the gasping cries escaping my lips in bursts of sound
so i thought
i looked up to see Owen standing in the doorway gazing down on me
without word he quickly came to my side 
knelt down next to me
not as i had, flat to my knees
but kneeling tall so that when he wrapped his arm around me at my side he was taller than i
he simply asked me, ‘are you missing grandpa?’ 
to which i replied ‘yes’...i kept the array of other looming thoughts to myself
i looked over at my son and felt his arm around me
not as a child but as a man who had come to comfort and rescue his mother
i felt of his strength
i felt of his faith
and i felt of the love he had for me
and indeed i felt rescued

i knew i had to write this down 
for i never want to forget that moment of tenderness between us

then last night as i came home late
i looked upon our counter to find a lovely basket of food and something peculiar in the center
a mason jar
at first i didn’t comprehend what was inside
could it be, no
a jar full of change and bills
there was a note accompanying it and i quickly reached for it looking to discover the bearer of such a gift
waves of tears overcame me as i read the sweet poem attached 
which in part reads:

we collected all year our dollars and dimes
and hoped we could save enough just in time
we prayed to know who to give this jar to
Heavenly Father’s answer said it was you
we hope you will feel the Savior’s Love
and know that this gift is from Heaven above

this family whoever they are filled their year with the intent to bless the lives of others at just this moment
and God himself knew of our need and directed their sweet hearts to our doorstep
i shook with gratitude and felt the warmth of my Savior’s love

in church this past week
i had the opportunity to address our congregation on a topic that i have been thinking much about
not only believing in Christ, in who He is, but believe Christ, believe His words
believing He will do what He said He would do
to not merely be an advisor or a champion or a counselor
but be our actual Savior, our Redeemer
to trust in His care and heeding His simple admonitions

‘let not your heart be troubled, neither let it be afraid’ *
‘doubt not, fear not’ *
‘be of good cheer, for I will lead you along’ *

when i truly understand what He has done for me
i am happy
i shine forth
i carry myself with a perfect brightness of hope
i let the promises i have made to Him shine through my face 
even in times of difficulty and distress

this is my Christmas wish
to let this Child who was Born unto Us
enter as the Prince of Peace into my heart and life
that with the lifting of my heart and the lightening of my step
the joy returns to my countenance 
and my soul is filled with His redeeming love

Merry Christmas to you my sweet friends
may this Prince of Peace enter into your heart and life
this Christmas season and throughout your coming year