Season of Pause

Our experience with the life and death of our daughter Bailey has not ended.  It does not sit tied up in a nice, neat, and easily understood package.  We are not who we were, nor are we who we will be.  Heather and I continue to "sit" in a place of allowing and longing to be changed by this experience.  We are acutely aware of our desperate need for God.  There is an intermingled sense of profound sadness and of genuine worship for Jehovah Shammah (ever present one) in our hearts and in our home.  We are taking an intentional season of pause with the hope that we will emerge healthy and whole, both as individuals and as a family.  It is our prayer that this wound will heal into a scar that is a visible and visceral reminder of His faithfulness.

Bailey's Journey

Sharing some of our most precious moments with our daughter...

oh, how we miss her so.  We cling only to the hope of heaven,

that we will one day hold our sweet Bailey again.


A few technical notes...

before you watch it,
go to the bottom of our blog
and 'pause' the playlist. 

if you watch it full screen,
it will be very pixelated because
we had to downsize it to fit the blog size.

Thank you

We want to say thank you to the countless family members, friends, co-workers and even those we do not know for the incredible love and support they have given.  So many individuals and families have given selflessly in such beautiful and unique ways.  We have been blessed. Thank you.

services

 viewing  

monday
august 16, 2010

6:00 - 8:00 p.m.

throop funeral homes

214 church street

coopersville, mi  49404


directions to throop funeral homes

service

tuesday
august 17, 2010

11:00 a.m.

coopersville reformed church
423 w. randall st.
coopersville, mi 49404

directions to coopersville reformed church

more information here

From our arms to his.

Our sweet Bailey is finally free. Today is the first day she will not have to struggle or experience pain. For that we are so grateful.

Heaven Stands

Today was an extremely difficult day for us.  Bailey hasn't eaten for about 20 days and our hospice nurse shared that Bailey's lungs are completely full of fluid.  While we know she is dying it's beyond difficult to watch it and hear it, day in and day out.  As I sat there holding our beautiful daughter and crying, the song, "Your Hands" came to my mind.

.....when my world is shaking.....Heaven stands.
.....when my heart is breaking.....I never leave your hands. 

Gods hands literally shook my world two weeks ago.  It was the Thursday night after Bailey stopped eating, she had a very difficult day and we felt as though God was going to take her home.  That night their was the most incredible thunder storm.   I laid on our living room floor holding Bailey's hand, watching the lightning bolts streak across the sky, and feeling the thunder shake our house.  God clearly reminded me of how GREAT and powerful He is.  Heather, I command the earth, I am bigger than death, I win.

What a comfort to know that when our world is shaking, heaven stands.  When our hearts are breaking, we never leave his hands. 

We contiue to wait

Bailey stopped eating 10 days ago and her lungs are again filling with fluid.  The hospice nurses who visit daily feel that it is only a matter of days. She is comfortable most of the time with the help of several medications each hour.  As McKenzie sobbed last night she said, "Daddy my heart hurts."  This succinctly expresses how Heather and I feel.   Although we are worn out with waiting and do not understand why Bailey continues to be in this place we trust in the ONE who does know why.  We depend on him daily. Hourly. Each moment.  Please continue to pray for Bailey's comfort in the waiting, pray for our strength and for our children to have a supernatural sense of understanding and peace.

please pray.

hospice has come to the house every day this week to check on bailey.

they have increased her pain medications significantly.

yet, each day, she seems to grow more and more uncomfortable.

her digestive system is starting to slowly shut down...

she is unable to take any more food into her little body.

her kidneys are also starting to fail.

please pray that in these last hours/days 

that bailey will be free.

free from pain.

free from the constraints of breathing machines and oxygen.

free to be able to eat chocolate cake and blueberries...

like mckenzie so wants her sister to do. 

we continue to pray angels of protection around the mekkes home...

that matt, heather, bailey, alexis, mckenzie and carter

sense His Presence.

our

Prince of Peace,

our Comforter and King.

mekkes meals

take them a meal

just a brief update...

danae set up this site for

all of us.

 this will make it easier to sign up for meals.

thank you for your continued care for this precious family.

rollercoaster

The days, weeks, and months continue to go by, not quickly but they pass none the less. Each week carries new struggles and difficulties for us and Bailey. Bailey seems to have new complications and issues each week, adding to the complexity of our ultimate goal, which is for her to be comfortable. Bailey’s body is slowly wearing down and she dies a little more every day. Each high that she experiences is not quite as high and each low is much lower and more painful. There are not adequate words to describe what this rollercoaster of anticipatory grieving is like.

Psalm 119:81 “I am worn out waiting for your rescue, but I have put my hope in your word.” We are exhausted and grieved while we wait for Bailey to be free from pain. Please continue to pray for our family as we trust and we wait.

...as we wait upon the Lord

Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord

Our God, You reign forever
Our hope, our Strong Deliverer
You are the everlasting God
The everlasting God
You do not faint
You won't grow weary
Our God, You reign forever
Our hope, our Strong Deliverer

You are the everlasting God
The everlasting God
You do not faint
You won't grow weary
You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles

Everlasting God by Chris Tomlin

Where are you God?

About a week ago, I was up with Bailey for several hours in the middle of the night. While I sat their holding her in the dark and watching her cry in pain and struggling to breath I found myself getting angry and asking God where he was in all this. I felt like God immediately revealed to me all the ways he has been, is, and will be present. Heather I am in every meal, every phone call, every card, every comment on the blog, every person who has donated their time and expertise to work on the house, every prayer, every gas card. I am also in the pain medications which keep Bailey comfortable, I am in every family member and close friend who has put their life on hold to live life with you during this difficult time. I am in every breath that you take, every dark moment, and every tear that you cry. I am with you always. The most beautiful part is that Matt and I truly feel it.

Our beauiful Bailey is slowly dying in our arms. Her kidneys and other major organs are not functioning well. She is increasingly lethargic, continues to accumulate fluid and her heart rate fluxuates widely. It seems like her time is nearing. It will be both too soon and not soon enough. We trust and we wait.

meals

it has been another exhaustingly, rough week.

bailey continues to be in more pain.

they have increased her morphine to an hourly dose,

and have changed her feeding schedule to an all day drip...

this seems to allow bailey's digestive system to not

have to work as hard.

she is starting to retain fluids again-

so, medications are changing again to try and make her

more comfortable.

her breathing is very labored as well.

there really are no adequate words

that could depict the exhaustion that

each member of the family is feeling at this time.

it's time to start up meals again...

we would like to start the schedule may 10-

{which happens to be matt's birthday *wink}

if you are able to

make a meal

please email danae gee.

{geedanae@gmail.com}

thank you for your

time and energy-

your gift is more than a fantastic meal,

you are giving them time...

so thank you in advance for the gift of time.

**also, a special thank you to those who

sent gas cards...

matt and heather have been so grateful for all that you have given.

each of you is making a difference-with your

time, talents and treasures-

thank you for allowing them to touch

this precious family.

How are you? ........ How is Bailey?

Two simple questions but the answer is anything but simple. Against all the odds we are still able to hold our precious Bailey. While we cherish every moment we have with her, it is indescribeably painful to have watched her suffer for the last year. Matt and I long for the day when Bailey will be free from all pain, but we also grieve knowing that the day she is free, the day she dances with Jesus (what her big sister McKenzie says) ...is the day that we will no longer see her face, hold her, bathe her, watch McKenzie, Carter, and Lexi love on her and kiss her.

So you ask.....how are you? I am breathing. I love what my husband wrote the day after we found out about Bailey's diagnosis, "God is good, not in a cliche way but in a way that allows you to take the next breath."

How is Bailey? she is struggling to breathe. We are still signed on with Hospice and continue to use several different pain medications as well as oxygen to keep her as comfortable as possible.

We continue to be amazed at the out-pouring of love we have recieved from so many people, and in so many ways. Thank - you is truly inadequate.

another wave...

i wish i could put words to what matt, heather and their

family are experiencing at this time. i wouldn't even be able

to begin...this moment sits in an entire universe that moves

so differently than most of ours.

the lines of grief run strikingly famliar each day,

each day holds something entirely different for bailey.

that is why many of these updates are simple...

meant to express matt & heather's love and gratitude

for each of you, and to keep you up-to-date

on their current needs.

thank you for your prayers and support for

this precious family.

you have been a continuous blessing-

bringing meals, cards, gifts, and interceding

through prayer...

thank you for listening to what God has been laying on your heart.

please know that there is no pressure

for you to do anything...we know God will

provide and He will use each of us

at different times and in different ways in this journey.

{also, matt and heather would ask for nothing if they could...

these requests/ideas are coming from friends}

if you are able to help,

here are some needs for their family right now.

1. gas cards - heather's sisters and mom have been traveling-and will continue to travel back and forth from lake city to coopersville each week. each trip costs about $20.00. our thought is to send matt and heather gas cards in the amount of $20...that way, each time a sister, or mom comes to help out, they are able to send them home with a gas card to cover their trip.

2. meals - danae continues to sign people up for meals. each meal is extremely helpful and greatly appreciated. if you are looking to prepare a gluten-free meal for their family...check out the blog...i have included some links that have easy recipes to follow!

simple gluten-free pasta

sweet-potato-casserole

baked pesto chicken

gluten-free pasta broccoli alfredo

**if you are interested in sending a gift card to a restaurant...

here is a gluten-free restaurant guide - gluten-free guide to eating out

3. gluten-free meals - we would like to get heather more of the prepared gluten-free meals. if you have interest in helping out on this front, please contact me...jaren

thank you again for being His hands and feet.

Update

Thank you for all of your thoughts and prayers. Bailey is breathing better, but continues to be in constant pain when not heavily medicated. While we do not know what the future holds for her, we continue to wait and trust in our Father's perfect timing.

thank you for your prayers...

i know many of you are checking for updates to see how everyone is holding up.

matt and heather feel your love, support and your many, many prayers that you offer

on their behalf...they are so grateful for each of you.  

each meal that has been brought, card/email sent, phone call made, post on their blog...

has also meant so much to them.

there really isn't a new update at this time...just a note from matt and heather to thank each of you who take moments out of your day, and allow time to stop, while you lift them up.

please feel free to call and leave a message on their home phone.  you will probably get their answering machine...but, your voice reminds them that they are not alone in this time of grief.

if you need an address - please feel free to email me and i will get their information to you.

greenappledesign@comcast.net

also, danae gee, is handling meals right now.  if you would like to have a meal sent out, or would like to bring one yourself...you can contact danae at -  geedanae@gmail.com.

thank you for being His hands and feet,

jaren

bailey

it is with an extremely heavy and broken heart

that i begin this entry...

sunday morning, matt and heather took bailey in to the hospital.

she had a lot of congestion and was having

a difficult time breathing.

the doctors diagnosed her with pneumonia.

they kept her overnight and started her on oxygen

and breathing treatments.

she was able to go home monday afternoon.

bailey's sweet little body has not been able

to rally through this one.

the doctors have told matt and heather

that she has days, not weeks left to be with them.

they have called hospice in to help with bailey's medications.

she is still on oxygen at home.

matt and heather are asking that we pray for bailey

to remain comfortable and pain free in these last days.

also, please keep their other children in your prayers

as they struggle to understand.

matt and heather,

we are broken for you.

we love you

and are sitting shiva with you.

friday

tomorrow

it will be a huge day for us.

we take bailey to be fitted for a special car seat

and wheel chair...tomorrow.

such a painful reality.

one that has been lingering in our minds for quite some time.

and - we begin-tomorrow.

we ask for your prayers as this will be our

first physical step in this direction.

we will also be meeting with our pediatric neurologist.

she will go over bailey's mri in detail with us.

though we are prepared for what she will tell us,

the words are never easy to hear.

our appointment is at 2:15.

we have felt your prayers before, during and after

other difficult appointments...and we both comment that you all must be praying.

it is that clear.

thank you for praying on our behalf.

we have a handful of requests for bailey.

1. that we can get her seizures under control

{she has about 5-6 seizures a day}

2. that we can also get her into some sleep patterns

{bailey sleeps a total of 9-11 hours in a 24 hour period}

3. that our specialists would be able to manage our daughter's pain,

sleep & seizures with the correct medications and dosages.

{she is currently on 9 meds}

Almost One.

The girls are almost one! As it always does, it seems like both an eternity and an instant since they were born. Alexis continues to be a smiley and happy baby. She is crawling, crusing, and has a vocabulary consisting of one very important word, "Dada." Yes mothers I know its unfair. There is just something about the bond between a father and a daughter or.... maybe its just easier to say.

Bailey has had both an EEG and an MRI in the past few weeks. The EEG was the result of her seizures increasing in both frequency and duration. We continue to try new medications in an attempt to find the right balance to control her epilepsy without resulting in other adverse side effects.

The MRI was completed as she approaches one year of age to allow a comparison of the images with the initial images that were taken shortly after birth. Unfortunately the MRI did not offer any signs of positive development. So we continue to live life and love our brave and strong little Bailey AKA Bo (Alexis is Lu). We pray and long for her to be comfortable and at peace.