Domino of Disaster Day

Today is the 1 year mark of the first “domino of disaster” being tipped. The date July 14th will always stick with me. That inevitable day that loomed ahead of us as we tried to enjoy every second of our short time as a new family of three.

However the days between the PET scan results on June 27th, the birth of Aria on July 2nd and the start of treatment on July 14th hardly allowed us that opportunity.

Once we got that dreaded call it was almost like Brandon stopped being able to fight the symptoms anymore, knowing it wasn't just a thyroid problem or a reaction to the Avastin preventative treatments. It was cancer. It was back. And in reality I lost him to it in the beginning of July.

Sadly we never had 1 normal night as a new family. Even before the chemo started Brandon was battling severe nausea, fatigue and pain and was mostly bedridden and unable to be the father and husband he so longed to be.

On July 9th we had our newborn photos taken and until he had to be in them he was in bed.

Days later I remember bathing Aria in the living room so that he could take part in it while resting on the sofa.

I spend a lot of time wondering what any random day would have been like for us had this not happened. I get mad because most of the time I can't actually imagine it. I have nothing to base it off of. I feel cheated and like something has been stolen from me. I let myself cry, pout, throw a pity party or punch a pillow. I sit in it for a moment. Marinate in the misery.

Often it's for just a minute or two, or an evening here or there. And every now and then I let it swallow me for an entire day.

But then, once I have felt that pain God reminds me that nothing will be lost in Heaven. I don't know how, but I believe with everything in me that He will redeem what death has stolen. A husband. A father. A complete family. That is the hope I hold on to. That alone is what gets me through each day and blankets me with peace beyond understanding.

As these trigger dates over the next 3 months approach I feel ready to take the next step and reflect back on the traumatic details as part of my healing process. I am rereading my updates day by day, and taking myself back to where I was a year ago.  (7/14/14 Update)

Though I have accepted what happened, and I have accepted my new reality, I have not yet processed how it all happened, and I think it is time that I do so.

I feel I need to unpack the painful memories I have compartmentalized so that I can come to terms with them. In the beginning those images were all I could think of. I pushed them away desperately wanting to remember anything else. But I couldn't.

Gradually I became able to remember Brandon prior to the summer from hell. But in a very strange way. Most of the time it feels like facts that I have memorized rather then memories of a life I lived. They feel foreign. I assume this is a very normal grief experience. A healthy way my brain is coping, by allowing me the memories, but minimizing the emotional association to them for now.

I do believe my brain will restore the memories to a more complete form when it is ready, but that day is not today - and that is ok. My brain knows what it needs to do to survive this and raise a toddler on my own, and I just have to wait it out and go along for the ride.

Thank you for supporting, encouraging and coming alongside me on this ride.

Trigger Dates...ready, set, go...

I have this urge to sit down and write, and I don't know what it is that is needing to come out.  Maybe it's the fact that starting today, the next 3 months are full of trigger dates.

Dates that stick in your mind and make you sit in thoughts and memories, both good and bad.

I feel I've turned a corner in my grief lately.  I've begun to figure out how to cope with this, not just survive it.  Writing about it seems to help for some reason.  And not just journaling, but sharing it publicly.

Journaling seems to have it's own specific purpose.  A place for me to release all the awful, scary, weird and confusing thoughts that swirl in my mind endlessly until released.  The things you dare not say out loud for some reason, however they still need to be processed and let go.

Then there is this.  I don't know why I feel the need to write here, but what I share feels spirit guided.  It's what God is putting on my heart to put into words and put out there for more then just myself to read.

I may have more posts as in these upcoming months as well.  In this new stage of grief I'm feeling the need to face these trigger dates head on and truly process them.  I even downloaded the Timehop app which shows you pictures and postings from your social media sites and phone from this day in years passed.  Until now I have hated seeing people's Timehop photos show up on my newsfeed.  I wished I could find it interesting to know, but it only made my reality hurt deeper.  But now, I think I'm ready to face the hurt that brings healing, so I will lean into it, not away from it.

One year ago on this day we found out the cancer returned by the results of Brandon's emergency PET scan.  I was in the last week of my pregnancy.  Fear consumed us.

I close my eyes and get visual flashes of parts of that day.  They are utterly hard to think about.  The feelings of that day come alive again.  My heart starts beating fast, anxiety rises, dreams start breaking and tears flow.

Four years ago on this day we awaited the results of Brandon's treatment completion PET scan.  I close my eyes and am now transported back to our apartment, and I feel the anticipation in waiting, and the hope for healing, and the fear of the unknown.  I took a moment to re-read my CaringBridge Update (<--click to read) from that day, and feel partly like I'm reading someone else's words, and partly like I just wrote them.  It's all very conflicting.

But what I have found to be very true is the common saying that "The only way to do it, is go through it."  Not around it, and not avoiding it.  And I feel ready to continue through the darkness of this grief.  "They" say there is light on the other side.  God says He can redeem anything, and I believe Him.  So I will try to walk by faith.  Steps that have never mislead me before.

First Father's Day

This past Sunday was Father's Day.  The first one.

The "firsts" of everything come with anxiety and uncertainty.  For me this one also came with purpose.  And my purpose was not simply to "survive" it, but to be intentional about it.  This was the first time I felt able to put some thought into one of these days.

In the weeks prior I spent some time in thought about what Aria and I could do, starting this year, to honor and remember her daddy.  I thought of what I would have done for Brandon's first Father's Day, and how could that translate in some ways?

I probably would have made him sleep in and brought him breakfast in bed.  We would have had a lazy morning then the three of us would have gone to the driving range together so daddy could hit a bucket of balls.  In a couple of years we all would have had our own bucket to hit, with daddy critiquing our swings and giving us tips.  He probably would have only hit a few balls himself, taking more joy in watching and helping his girls.  We would then have a picnic lunch at a park and probably spent the rest of the evening with family for dinner.

But that's not our reality. And tears fell freely imagining what could have been.

Instead, I got to sleep in til 9 am (thank you Aria!)  We had a lazy morning together, and during her morning nap I sat outside and painted 2 bird houses.

Brandon loved birds and would feed them with numerous feeders around the yard.  He even had a heated bird bath for the winter so they could drink easily.  He saw it a challenge to identify all the birds that came and find the particular kind of feed they preferred.  So every year on Father's Day Aria and I will paint birdhouses and hang them in the back yard.  Then, someday when she moves out she can take all of her painted birdhouses to her home to bring a little bit of daddy with her.

My thumbprint heart birdhouse and Aria's hand smudge birdhouse.

After she woke from her nap we went and got one of daddy's favorite foods, a double bacon breakfast burrito, and headed up to Mount Lindo to have a picnic lunch together.  It was a beautiful day, sunny and in the low 90's.  Even at almost 8,000 feet elevation it was hot, so I shaded us with an umbrella and we hung out there for an hour and a half.

Sharing Daddy's favorite burrito.

Just hanging out.

I was hoping to take a walk on the paths of Fox Hollow Golf Course with Aria, however she wasn't really up for it by the time we left the cemetery, but maybe next year.  So we headed home and played together.

All in all, it was.  It's hard to say it was "nice".  I mean, it was purposeful and meaningful.  But it was missing something.  It always will.  And that sucks.  There is no getting around it.

But I leave my hope in God.  And I know that no matter what pain and loss we feel here, nothing will be lost in Heaven.  Somehow, beyond my understanding, Brandon is not loosing his opportunity to be a father to Aria.  And I will do everything possible for Aria to feel like she knows her daddy.

Not long ago, a friend of mine gave me a priceless gift.  She has walked very closely with me through this experience and our friendship has blossomed in the past year since she moved back to Colorado.  Due to frequent moves in the past few years she never got to know Brandon personally.  However, she encouraged me with some beautiful insight that I have held close to my heart.  She told me that if I talk about Brandon to Aria in any way like I talk about him to her, Aria will undoubtedly know exactly who her daddy was.  From his silly nuances and annoying habits to his wise council and unwavering love.  She will know him.  All of him that I can give to her.

And I am grateful for that.  I already talk constantly about him with her.

I joke; "Daddy would have told me to stop trying to pick the booger out of your nose and just leave you alone!"

I inform; "Daddy probably wouldn't like me allowing you to do that."

I say tearfully and longingly; "Daddy would have loved to see you do that, sweet girl."

It's important to me that all her associations with daddy are not sad.  That's not how he would want his baby girl to know him.  Linked with loss and pain.  No.  He was full of life, love and laughter.  The loss is ours, not his.  But someday, that loss will be no more.  And that's what I live for.

Making Lupus Look Good

May is Lupus awareness month, and it's been on my heart to share just a little bit about it.  When people find out I have this chronic illness I usually get 1 of 2 responses.

One:  "What is Lupus?  I think my friend's, cousin's, neighbor has that..."

Well, in short Lupus is a chronic autoimmune disorder.  This means my body creates antibodies that can not tell the difference between foreign invaders (like a virus) and healthy tissues, so my body attacks itself.  These attacks are called "flares", which can last for days, weeks, months or years.  A flare can be set off by stress, illness, over exerting yourself or seemingly by nothing at all.

Everyone's flares are different.  Mine typically involve extreme fatigue, joint pain, headaches, nausea, night sweats, fevers, and a grab-bag of other random crappy feelings.

The disease can range from mild to severe, and can be fatal.  There is no cure, but there are many treatments, and the disease can go into remission.  For me, I am on daily low dose steroids and an immunosuppressant, along with a handful of other medications and supplements.  When I flare I typically do a "burst and taper" of steroids over a 3-4 week period of time which shocks my immune system back to reset.

Typical Pain Chart

Even in my best days following a "reset" I deal with daily chronic pain, on a scale of about a 3-4.  On these days I still wake too early, wanting just to sleep, but my hips and back are in too much pain to continue laying down.  I need to get up, move out the morning stiffness and eat so I can take all my pills.  It takes about 4 hours after that until I feel human, but even then I have to be constantly aware of how much I do, or I will pay for it for days to come by what I call mini-flares, where I have to rest (ha!) to avoid another steroid treatment.  This daily balancing act is beautifully described in The Spoon Theory. (<--click for more information)

For those whose disease has progressed and is moderate-to-severe, their lives may involve dialysis, chemotherapy, kidney failure, long term hospital stays and worse.  I am grateful that for now mine is in the mild-to-moderate category and hopefully never progresses.

The second most common response is:  "Well, you don't look sick..." or "You look like you're feeling better..."

Well, thank God I don't look as bad as I feel!  I use a lot of "spoons" to ensure that, because if I dressed the way I felt, I couldn't go out in public most days.  Lupus is an invisible illness.

Believe it or not, the above pictures were taken on the same day.  On the left, a pain level of about 8, and on the right about 5.  Pills, heating pads and rest paved the way to putting a smile on my face and real clothes on my body despite how I felt.

I often "don't look sick" because it makes me feel worse emotionally to look how I feel.  Depression is very common with autoimmune disorders because of the emotional toll it takes to endure so much constant physical pain and life limitations.  However, I have often been tempted to just look how I feel so my disease doesn't seem so invisible. 

That day, my friends saw the Christina on the right, and probably had no clue my pain was at a 5, and had been an 8 earlier.  That every step I took out the door I could feel pain in my back, hips and knees, and that it hurt to grasp the steering wheel, and despite it being warm outside, I drove with the heated seat on like a mobile heating pad and the air conditioning on to counteract it.  That I wanted so badly to wear cute sandals, but that I have to choose my shoes based on where I am on that pain chart.  

My Shoe-to-Pain Chart

Anyhow, you get the point...

I don't make my pain known most of the time.  I'd rather that be my burden to carry, otherwise it would lead to:

"Why didn't you tell me you felt so awful?  We could have done something else! I feel terrible!"

Ha!  If I put a voice to my chronic pain, I would be a chronic pain in your @$$.  

But bless your heart, my selfless friend.  I appreciate your flexibility and concern more then you will ever know.  However, I am learning my limits.  I am starting to admit when I can not do something, or need to cut something short, or even need to cancel.  But I am a fighter and I am determined to not let Lupus take everything from me.  I will gladly push it to my tolerance limit (and often a bit further) in order to spend quality time with those I love, and pay for it later...alone.

I did not write this for pity or attention, I wrote this to attempt to put a voice to and bring awareness to something invisible that many, many people suffer from.  Chronic illness, invisible illness, autoimmune disorders, etcetera.  I personally don't have a hard time expressing the depths of something I struggle with, but so many do - and maybe this can be a little voice for their pain too?  

Ultimately, I trust that though I suffer with this, that God will use it.  Many others in their suffering have ministered to me, giving me encouragement, advise and hope, and I pray that God will someday do that through me as well.

1 Cor 1:4 , [Praise be to God] "4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."  

My Village

They say "It takes a village", and I have the best village around. Seriously. A few weeks back one of my friends told me she wanted to organize a group of people to come and help me out with some housework, and I gladly accepted. All I had to do was be there and tell them what to do. 

Clockwise from top left:  Katie & Elena tilling soil.  Anna-Lisa and pregnant Sheena working in the side yard.  Mandy feeding Aria, Katie & Whitney w/ Giovanni & Ryker in the background.  Mandy working on the umbrella base.  David & Ben working on the baby swing and Robb in the shadows with the bird feeders.

They showed up with food, drinks, work gloves, cleaning supplies, a couple babies and servants hearts at 7:30 this Saturday morning.

God blessed us with beautiful weather and my "somebody-else's-honey do list" got done! Mowing, weeding, fertilizing, bagging wet leaves, tilling, moving rocks, hanging a baby swing, setting up the umbrella and a few other yard tasks were all done in 3 hours. Aria was loved on and kept busy with the other kiddos while I pretty much bossed everyone around. (Hehe).

Not only did so many of my chores get done, but I also got to catch up with some of my dear friends that time has not allowed me to see enough.

Later Aria and I gave the swing a try and she is one happy baby! We played in the grass and I didn't have to keep her from trying to eat the field of dandelions.

To add to all the outdoor help, when I was away earlier this month I came home to find that my amazing neighbor, who has been tenderly taking care of my yard (and snow removal) for the past 7 months, had replaced my very broken fence gate. I still have to chat with him for more details on how he graciously took care of this for me.    

I truly could not do this without the amazing people God has placed in my life. 

Brandon asked only 2 things when he knew he was going Home. One - for us not to be mad at God, and two - to take care of his girls. And on days like today I like to think that he is in Heaven, joined by the loved ones of my "villagers" watching God's Kingdom at work here on earth, taking care of his girls.  And they are overjoyed for us all.  I could not be more thankful.