Every Hair on Our Head

Agnes is in surgery.  Possibly for the next seven hours.  Seeing your little baby (or any one you love) being wheeled off is a new kind of ache.  Yet, she is in such good hands.  

Before I forget (which I'm sure I've already forgotten some of the details), I want to record where God has been in all of this.  Suffice it to say...He has been in every detail.

A month after Agnes was born, I received the sweetest email from a "stranger" who had read my blog post about Agnes...about how we didn't know until she was born that she came with some special needs.  She, too, had a baby girl a few days later with a similar situation...and unexpected diagnosis.  We were no longer strangers.

In fact, in the chain of events that lead to us taking Agnes to a care team in Denver, this new friend's daughter had an appointment the same day...and now, we communicate at least weekly!  The day I met her, I got an Instagram message from another "stranger" saying how thankful she was that we met...that my new Denver friend was one of her best friends.  Small world.  Little did I know at the time how small.

Fast forward to a week later and my cancer diagnosis.  Soon we would be heading to Houston (where we were originally planning to take Agnes for care) to undergo testing and develop a plan to attack this cancer.

Agnes and I were in Houston with my sister (until my husband could come trade places with her) because since I was already going, we thought we would get a third opinion from a neurosurgeon here on her spine.  While here, a college friend said I should go to Mass near the medical center with a priest she knew and loved.  We did.  And, we called an Uber to get a ride back to our hotel so that my sister could get ready to fly home.  I really wanted to tell the priest hello and that his friend suggested I go to Mass at his parish, but I didn't think I had time.  The line to speak to him was a bit long, and the Uber was on his way.

My sister insisted.  So, I went to the line and waited.  As I was waiting, someone tapped me on the shoulder saying, "Are you Britt?"  That person was the same sweet girl who had messaged me on Instagram saying how glad she was that I met one of her best friends in Denver.

She was also the sister-in-law of the wonderful priest, and before we knew it, we were going to their house for dinner the following Tuesday.  

At dinner with this amazing couple who so easily opened their hearts and home to our family, they mentioned that their parents/in-laws had a home they liked to use to help people and said we should get in touch.

My first thought was, "absolutely not!"  I never wanted to ask anyone to host me...and even if I could bring myself to ask, hosting my entire family would be insane.

A few days later, I received a call from the mother/mother-in-law.  She basically told me we would stay with them when we were in Houston (in a very loving way).  I told her I could never ask that of her, and her response was, "That's the beauty of it.  You didn't."  She had a bed for every one of us, and she said they were called to do so.  Then, as she was hanging up, she said, "How do you know (this particular family)?"  It was the family of one of my favorite priests back home...who also happened to be one of their son's best priest friends.

What is even neater is that none of us were "supposed" to be at that particular Mass.  Agnes fell asleep before the Mass we were planning to attend.  Our friends never attended that particular Mass time.  Yet, we were there, together.

And, now, here I sit a month later, having been driven to the hospital via our new family away from home.

Other things: when I found out the cancer trial I was a candidate for (which would have been a much shorter/less invasive plan as a whole) was no longer an option (and after I had gotten really excited about it), I took a walk.  On that walk ,in a pile of rocks, was a painted rock with the word, "trust."

At one point during my Houston stay, I didn't think I'd made it back in time for Genevieve and Lucy's birthdays.  Of course, so many sweet people were determined to make it special.  I did arrive home the afternoon of Gen's birthday.  But, I had one more oncology appointment the next day before going home home.

When we did, they had the cutest cakes, a house full of unicorn decorations, Chicago pizzas and so many extras from sweet friends.  After all of that, as we were getting ready for bed, Gen excitedly said, "Oh I can't wait for my birthday party!"  Confused, I told her we just had her birthday party. She immediately started bawling (Gen's style).  When I asked her what was wrong, she said, "It's not a party without a piñata."

Had I ordered a piñata?  No.  Did I tell her one was coming to make her stop crying?  Yes.  Was it a lie?  I thought so.

Until the mail came the next day.  A piñata!

Not knowing anything about this, a Florida friend had sent Genevieve a piñata of all things!

So, as Carter said when we found out about all of Agnes' needs, "We drink from the cup He gives us, and not a hair falls from our head that He doesn't know about."  He's right.  

In fact, not only does He care about our community, shelter, friendships, support and everything else we have been given...He cares about the piñatas in our life, too.

Life Itself

I just watched that movie.  Sitting here in my hotel room, attached to MD Anderson, alone.  And, while I wouldn't recommend that movie to just anyone without strong caveats,  strong caveats, it has a profound message, and one which deepens one's empathy.  And, in that setting, I write.

So, I have to back up.  To a month ago.  To this...

...sitting for family photos knowing I had a mammogram in two days that very few knew about.  Knowing that this might be our last "normal" photo for awhile.

I didn't want to believe the lump I noticed a few months before would be a problem.  The lump that since Agnes' birth I had forgotten about.  The one which I was reminded of with a phone call from my grandmother just a week or so before this.

My granddad (who had suffered greatly from a stroke almost two years before), woke up angry with my grandmother.  Apparently he believed I had called him in the night to tell him something was wrong.  Even after texting that I was fine, he wasn't convinced.  So, Jeremy stayed home with everyone but Agnes, and I drove out with her to see him.  When I arrived, he looked at my grandmother and said, "See!  She did call."  I tried to convince him otherwise without any success, and he said, "You said something was wrong, and you had something to show me."  So I introduced him to Agnes, and said I was fine.

But, that night, I remembered the lump I felt months before.

And, I got in touch with my OBGYN the next day to schedule a mammogram for after we returned from Agnes' appointments in Denver the next week.

I didn't tell anyone (well, except for my husband, mom, sister and a couple friends), because part of me was sure I had just made something out of nothing...like a clogged milk duct.  And, another part didn't want anyone to worry until they had a reason to worry.  But, when I told my mom a couple days before the appointment, she was determined to come with me (or at least drive me there).

When at the appointment they "saw something suspicious," part of me just knew.  They biopsied two sites and told me that it could be 200 other things but that they needed to rule out the one "bad" thing.  I got back in the car with my mom, and all I could think was, "Dear God please don't let my kids grow up without a mom."  I didn't want to start thinking of all of the what ifs, but I was somewhat worried, and I knew those I told were, too.

That night as I laid in bed thinking of the year we had had, I so vividly was reminded of Jesus being fully man and thus knowing the hurt of hard times, yet with He and His momma, part of me thought, "Yes, you became like us to know us and to feel everything with us - to be fully human - yet You never lost your mom."  

Two days later, as I was washing dishes after lunch, I had a call on my cell from an unknown number.  I picked it up, and after the lady on the other end asked me how my biopsied sites were doing, she asked if I "had a minute."  For the record, I'm no longer answering yes to that question ;)

I sat on my bed, grabbed a pen and opened up the nearest thing to me (a book called He and I), and began to write down everything she said.  It was a blur, but I came away knowing I had Invasive Ductal Carcinoma, Grade 3, with a 3.5 cm mass and at least one affected lymph node.  I would wait five more days to hear reports on the staging and receptor status.

I walked out of my room, made eye contact with Jeremy, and he followed me out our back door to sit on the steps, take a deep breath, cry and decide what to do next.  I had cancer.

Cancer.

I knew I needed to call my mom and sister, then one of my best childhood friends who had just been through a cancer diagnosis and treatment, and finally send a mass message to my friends and family who had no clue what was coming.

In the meantime, Jeremy called his parents and told our kids...the kids who haven't seen much death, but that which they have has almost always been tied to cancer.

After all of the communication, and the loving on my babies, I went to talk to my parents.  There is not much worse than seeing those you love most suffer...yet seeing them helplessly hurt for you, I've discovered, ranks right up there with it.

I came home to Jeremy driving his truck, with the kids behind in all of their run down, battery-operated vehicles...chained together, pulled by Dad...offering me what they termed, "The Love Parade."

I made the corner after watching their tear-stained faces wanting to lift my spirits and sobbed like I never have before.

And after that, I went back to those dishes.

Because what does one do after receiving a cancer diagnosis, with 8 sets of little eyes watching?

Only the very next thing that needs to be done.  Life itself.

On the Day She Turned Two Months

 

She had her first out-patient procedure.

We are here in Denver as I type this post, and she's under anesthesia. This morning began a series of things in a search for more answers and a plan to proceed.

Originally, doctors were going to remove a skin tag in her diaper area.  However, in thinking more about it, they decided to wait.  Based on its size and the unknown intricacies of her vascular malformation at this point, they didn't want to risk the bleeding at this point.

Also, we have seen a bit of oozing out of her belly button, so they have ordered a renal ultrasound to rule out a couple of things with that.

They have completed the vaginal and rectal exploration, determining surgery is not necessary in either place - praise the Lord!  And, she's currently having an MRI of her abdomen, pelvis, and spine - as well as an MRA of her abdomen and pelvis.  All of that imaging will help us see exactly where the spinal cord is tethered, how deep and intricate the vascular malformation is, and if there are any other issues that we might not currently be aware of.  

So, we wait.

In our two months of waiting and finding answers, of wondering what time will bring and of trying new things to make her more comfortable, I have learned a lot.  And while our cross is not someone else's, and knowing there will always be someone with a much heavier cross, God has revealed so much.

I've learned...

...there is still so much goodness and beauty to be found...even though her body is broken in ways, her soul is whole, and she brings us so much joy.

...when people offer to help, it's important I let them, as much I may feel guilty I am not able to help them right away in return.

...that Jeremy and my relationship has never been as important.

...there are days when I basically seem to have a good handle on things and days that hit me out of the blue to remind me life is peaks and valleys.

...sometimes it feels like I can't possibly think of anything else.

...health issues in one child can cause me to feel like I can't find a good balance in taking care of the noticeably sick one while also meeting the needs of the others.

...help comes in so many forms: meals, prayers, texts, calls, caring for kids, sitting and visiting, or even caring for your helpers.  But, it's important to let others help in the way they feel called (have I mentioned I struggle with this, hehe?!). 

...a million cares and concerns can be eased with the weight of a sweet baby on my shoulder.

...we are never alone.

...God prepares us for these moments years before we face them and He gives us the grace necessary for the moment (maybe not the year, or the day, or even the hour to come)...but the moment He has covered.

...miracles and affirmations aren't always what we envision, but if our eyes are open, they are all around.

More than anything, I've learned this...

...it is important to reach out.  

I've spent my life not knowing exactly what to say.  I've "put myself in someone's position" and convinced myself they want to be left alone or not bothered.  I've never been able to "understand what he/she was going through."  And so I haven't sent the text.  I haven't made the call.  I haven't popped a note in the mail to let someone know simply that I care.  I haven't stopped by to give a hug.  And, I've realized now...it doesn't matter what you say (by and large).  It doesn't matter how you show your love.  It doesn't matter if you were "never that close".  There is nothing too small.  Reach out.

Say something.

I have learned that so beautifully in the last nine weeks, and the only way I can describe it is humbling.  To feel encapsulated by prayer and love is indescribable.  I sit here and think, "How will we ever return all of this love?"

But, I know this.  Our strength has come from the prayers of hundreds/thousands of people...many who we don't know.  When people say, "I don't know how you are doing this."  I do.  Because of you.  God through you.  

Thank you.

(a few days later...)

She came out of anesthesia like a champ.  She was downing the sugar water and "talking" to anyone who came to her bedside.  

The next day in our meeting with dermatology we learned there is not much more we can do for her ulcers.  We are doing the best we can, and they may heal or we may struggle with them for some time.  Only time will tell.

The following day was full of appointments to discuss results.  

We learned that her vascular malformation at this point does not appear to be very deep...a huge answer to prayer!  There was a mass on the scan that they thought was worth doing bloodwork on - it came back clear, praise God!  Her kidneys also looked great!

The spine was a different story.  Her sacrum is very "messed up" and her spinal cord tether is one of the most complicated cases they've ever seen.  The neurosurgeon is unsure if he will be able to de-tether it, but he will try!  It will likely pose problems with bowel and bladder control as well as mobility.  

But again, we wait, and we pray.  And we do the very best we can with God's grace moment by moment.  

And we ask God for healing, because miracles do happen.