Heartbreak

I don't know if it's possible to actually feel your heart breaking, but if it is - then I am feeling it now. I don't know where the tears keep coming from, but I just can't seem to stop them.

Isaac is in a hospital bed in our dining room and I am on an air mattress next to him. I can't believe we're at this point. I can't believe it happened so fast. Last Sunday, we were at church. We spent the day doing normal "Sunday" things. Then Monday, it was like a switch was flipped and my husband was gone. He turned into this groggy, loopy person almost overnight.

I miss him. I looked over at him, sleeping peacefully in his hospital bed, and thought how he looks normal when he's sleeping. He just looks like my regular Isaac when he's sleeping. And the tears started...and haven't stopped. I just miss him so much. It's so hard to sit with him, and know that it's not really him. It makes me miss him even more, because he's right here with me, yet he's gone. I pulled out the video from our wedding just so I could hear his normal voice again.

I am broken. I am praying for just 5 minutes of my old husband, just 5 minutes to tell him how much I love him and make sure he is okay with dying. I am scared that somehow he is not okay. I can't believe how hard this is.

Preparing...

I should let you know where we are in our journey. Tuesday night around 11:00, Isaac started to feel something wrong in his chest. He thought it was a collapsed lung or more fluid. So, his mom came over and took him to the ER, so I could stay home and get some sleep (ha) so I could go to work the next day. It turned out to be nothing, well sort of nothing, it just turned out to be his lungs getting worse...so he came home around 4:30am.

During the time he was at the hospital, I spent a lot of time sobbing. Then I made the decision that it was time to look into hospice care. I knew I couldn't do it all alone, even with the family and friends we have helping us. With hospice on board, we could call them at 11pm rather than having to go to the ER. So, last night we met with the hospice agency to set things up. They were so awesome. We'll have a nurse coming 2x per week to do his blood draws so he doesn't have to travel to the clinic. We'll also have a home health aid coming 3x per week to help with daily tasks like bathing and such.

I feel SO much better now that we have that in place. Our next step is to decide on a funeral home to use. Ugh. The hospice part I didn't mind as much, but the funeral home...that's so final. That's the end. I'm not as anxious to get that in place, but I know it's necessary.

The need to breathe...

It's been an eventful week in the Smith household. Isaac has been REALLY tired for over a week. Last weekend when he spent the whole weekend in bed, I knew something was up. We figured it was the result of a low red cell count, and he was getting transfused on Monday. But, after his transfusion he was still tired. Usually the blood perks him up pretty quickly. I thought it was probably a result of us waiting almost 2 weeks from when we knew he was low until he actually got the blood, and maybe his body just needed extra recovery time.

So, Wednesday night rolls around and he comes upstairs to get in bed and is panting with exhaustion. We start talking about what this means, and he says "Well, I'm going for counts tomorrow, so we'll find out if it's just low red count or if it's my oxygen level and I need to go on oxygen." I burst into tears immediately - much to his surprise! Between sobs, I choke out "But Dr. Pete said if you go on oxygen you have only weeks left". I am NOT ready for "weeks left". Months? Yes. I am prepared for "he has only a few MONTHS to live"...but not weeks. Weeks means soon...weeks means dying during the school year, when I have limited flexibility financially to take off of work...weeks means less time.

So I get through my panic sobbing fit, he goes upstairs to check on his fish, and I lay in bed quietly crying our to God for help. I am at this point in my prayers that there are many times I actually cannot formulate words to pray. I just don't even know what to ask anymore.

Thursday rolls around, I head to school. I'm quite good at compartmentalizing - when I'm at school and busy, I can focus. But all day, I am out of sorts. Even one of my close teammates tells me I look sort of frazzled. After lunch, I get an email from Isaac's mom telling me he is in the ER. I didn't find out until after, that he was taken to the ER by ambulance because his oxygen level was so low (in the 70% range) that the nurses at the clinic where he was getting his blood drawn didn't want him off oxygen at all. Given my sob fest the night before, Isaac was not looking forward to telling me this.

So, we've been in the hospital since Thursday. Luckily, he was able to continue on the meds he'd been prescribed at MD Anderson. Unfortunately, he is going home on oxygen. Not sure yet if this is permanent, or if he will be able to ween off of it. He's only on 2 liters at rest, and 4 liters when active. But still...I feel like the past few days I have been working extra hard to hold it all together. It's overwhelming to think about the future...to start work on a Living Will for Isaac...to think about funerals and plans like that. I know God is with us. Sometimes I feel like He's sitting in one of the empty chairs in this hospital room. Sometimes He feels very far away - but I know He's always with us. I wouldn't make it without Him.

Worship

I came across this poem today on another blog and I fell in love with it!  When I share things about my husband, I often hear "I just don't know how you do it," in reply.  Well, I don't.  I don't do anything but ask God every single day, continually, to give me strength.  When I detach myself from my life, and try to see it through the lens of another person, I am in awe of the strength of the Lord.  I am so thankful that He sees me worthy to bless me with this strength every day.  There are many, many times where I just feel like I can't even pray.  My spirit is so broken and dry, that I just have to pray "Lord you know my heart...help me." because to utter the actual words, to even allow them in my mind, would cause me to fall completely to pieces.  Despite the struggle life is sometimes, and the times my spirit feels dry, and the days when I wonder how much longer I will have to endure this or watch my husband endure this - I am glad.  The joy of the Lord is my strength.

Why I Worship

I worship God because He has freed me from the tight, painful, scarring bounds of sin.

Oh how wicked is my heart!

It sends sin cursing through my veins and finally pouring out of my flesh;

The intent of the thoughts of my heart are evil continually.

Yet, God lifted me out of the pit, out of the mud and mire, fulfilling His desire

to set me free

Free

I should be crushed, but instead, He was.

He got my sin and I got eternal life.

Everyday I battle with sin, the war within;

yet everyday His mercies are new and I can approach the throne of grace

without disgrace

but with confidence…how can it be?

Oh but for the grace of God!

In my failures, my legalism, my complacency,

my weakness, my pride, my foolishness and my fears;

I am an open book before the Lord that’s pages are covered in blood

covering the words and images of my old self.

The paint brush of my soul now dips its bristles in the blood and a new book is written,

one that He breathes life into,

guides through,

and speaks true.

My soul overflows with gratefulness, humility and joy.

I am awed at His love for me.

What can I offer? Nothing of myself is worthy, so I offer my open hands, my open heart,

and my open mouth that must speak of His glory, that must tell of His story!

My soul bows in worship,

true, unrestrained, vulnerable adoration for my King.

I cannot contain my soul,

for it,

is

glad.

By: Sarah Mae

Planning

I often wonder what it is like to be married to a "normal" man.  I wonder what it's like to actually be able to plan for your future.  One of the most exhausting parts of this journey is the lack of ability to plan ahead.  Right now, my "long range plan" goes as far as April 5th.  That's the day of Isaac's next visit to Houston...his next round of scans where we can see the progress of the cancer.  I don't even think about the summer too much.  We were given a free week at our friends' beach condo in Myrtle Beach, and I'd like to plan a trip...but I have no idea where we'll be in 6 months.  I have no idea if Isaac will be alive in 6 months, or if he is alive, if he'll be healthy enough to spend a week at the beach.

My 'biological clock' is also becoming a bit of an issue.  It's not that I'm necessarily ready to have a baby...but I'm ready to start entertaining the idea.  I'm ready to start having the "when do we want to start trying" conversation.  But, with a terminally ill husband - who has also had 50+ rounds of the strongest chemos they make - I just have to hit the snooze on my quietly ticking biological clock. 

Guilt

I teach 6th grade.  When I come home from work, I've spent the previous 7.5 hours on my feet surrounded by constant noise and having to be "on stage".  I'm tired and "peopled-out", as I call it, and I usually just want some down time to recharge.  This hour or so of recharge time has been the toughest thing for me to adjust to since being married.  Since my husband is home mostly all day, usually by himself, he is eager to talk to me when I get home.  I struggle to find a balance between getting the down time I want, and still spending quality time with the hubby.  More often than not, I end up being cranky and snappy at him.  Then, I feel bad...because I always think "I should cherish every single second I have with him and never, ever be annoyed."  But is that realistic?  When he is gone, I know I these moments will stick in my mind.  I will wish I could take back every single second that I was cranky and change it into seconds of bliss.  But, I also know we are human...we are not perfect. 

Though, I do need to work on being a more loving wife.  I sometimes feel like all the "stuff" I do shows my love enough - stuff like sorting his pills every week, reordering prescriptions, traveling to doctor's appointments, doing extra "chores" around the house.  Yes, that stuff shows that I love him and am devoted to him.  But, I think in the end I won't think "Wow, all those pills I sorted really showed my love"...I will think about the times when I stayed in bed and snuggled up to him for an extra few minutes, or sat watching a TV show I hate for an hour just to hang out with him, or wandered through an aquarium listening to him point out the different fish and corals.  In the end, the memories and the things I will cherish will be our moments together, not the stuff either of us did.  I get so easily distracted by the world, by my job and by other stupid things that I often forget to just enjoy the company of the man I love.

A look at 2010...

So it's a new year.  People are making plans and hopes and dreaming about what the new year will hold for them...and I just keep thinking "2010 is probably going to be the hardest year of my life".  It's so strange to approach a year like this.  If there was a soundtrack to my life, it definitely would have included some sort of "dun dun dun" ominous music around 12:01am.  Because while most are thinking this will be the year they will finally lose the weight, start their families, quit smoking, go on a vacation, start a new job, buy a house, or any number of exciting and fun things - I am thinking...this is probably the year I will lose my husband.  This is probably the year that I will watch my dear husband experience great pain.  This is going to be the hardest year of my life. 

But, I also look to this year with great hope.  I know, without any doubt, that God uses every single pain and hurt we go through to make us more like Him.  Before I met Isaac, I prayed that God would somehow make me one of those "really faithful" people.  You know the kind...they give a testimony at church and you are crying your eyes out by the end at how they followed God through everything and came out better in the end.  I wanted to be one of those people.  So here I am...enduring a struggle not many experience, often wondering why I ended up here...but always trusting that God is using this for good.  God is using every single second of this journey to make me more like Him, to show me who He is, to draw me closer to Him, and to make me more dependent on Him.  I cherish the "God moments" we see nearly every day of this journey.  I am learning to allow others in - to see me cry, to help in times of need.  I am learning that I don't need to do this all on my own - and that I can't. 

So, while I know my God is a God of miracles - and He could absolutely heal Isaac any time He chooses - I also know that a miracle is called a miracle because it doesn't happen very often. 

Current song on repeat:


"When my world is shaking,
Heaven stands.
When my heart is breaking,
I never leave Your hands."