Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

No Magic Bullet

Ok, so I’m no Pollyanna.

I will wait for the gasping and fainting from shock to subside.

I tend to see the glass half empty and about to fall off the table, where it will crash to the floor in a spectacular display of What Gravity Does. I am a master at the art of defensive pessimism, a mastery born of getting epically catastrophic news rather too many times.

This doesn’t mean I have no hope. Hope really does spring eternal, even if it’s just a tiny kind of stunted looking sprout in the garden of yikes we tend here. But hope does live.



FALSE hope I have a huge problem with. False hope is like fake flowers in my garden.

                                            I don't think blue roses occur in nature. Yergh.

Ew.



This kind of builds on my last post (if I asked you to read this blog, it was for my Ode to Oncologists, please do read that…and feel free to read on, if you can stomach it). I suppose I should insert a GIANT OPINIONS ABOUT TO COME FORTH! Warning here….



A ginormous part of the reason we so trust our doctor is because she has never given us false hope. When things have been dire, she tells us. You have to be educated about the enemy you fight, and if things are grim I need to know so my spouse and I can choose the right weapons to fight. We know that the statistics of success with any chemo protocol are garbage. We know this, and no one ever promises us otherwise.



That said, we do have hope, because within our community we know kids who have found stability. For 5 years my second born WAS one of those kids. I have to hope we can get back there again. Today a spot of headache and dizziness have made that hope slippery…sigh.



Understandably, any parent in the spot we are in would LOVE promises of sunshine and wellness and sparkly rainbows. All of us would LOVE the magic bullet, the thing that will make all of this suffering go away. Heck, that’s why so many parents and family and friends of people battling awful illnesses work so hard for research dollars.

not this kind of magic bullet, we do have one of these for

all the healthy smoothies my kid refuses to drink.

 

(As a side note, there is a reason most anti-cancer/anti-NF efforts are geared towards treatments and less towards prevention. Imagine a house is on fire. Smoke! Flames! Alarms! Your first efforts of course are to rescue anyone inside and put out the blaze. While those flames are burning you may want to hold off on studying why the fire started and how to prevent future fires. You quench the flames FIRST. That is why research tends to have that treatment bias. As a parent searching for an extinguisher, I appreciate this. It’s really NOT a pharmaceutical conspiracy, I promise. There is a reason. ).



Unfotunately, there is no magic bullet.  (except the one above)



Yes, we can do things to be healthier, eat right, exercise, brush our teeth, floss, wear a seatbelt, wear sunblock, get enough sleep, find spiritual and emotional support. We can and should do these things…



But there is no magic recipe for healing. Sometimes it happens, sometimes it doesn’t. Some illnesses are more curable than others. That’s just the way it is.



From a religious standpoint (my lens here is both secular and religious), God promises us that He will give us the desires of our heart, He says He has a future full of hope for us…but He doesn’t exactly specify WHEN this stuff is going to happen. Religious texts (Bible and otherwise) are full of stories of people who generally had a really rotten time of things. The best, most faithful people got smote. Life happens, even to good people. Some of their stories truly don’t end well…but we believe that ultimately there is more beyond this life.



As friend to a lot of people who have lost their children, this hope is so critical, this hope that we will meet again somewhere where brain tumors and NF and cancer are not even memories.



God promises He will be with us, even mid-smitefest, even if it doesn’t feel like He is. Sometimes that means stable scans and a break from chemo. Sometimes that means having the chutzpah to go into chemo with a smile and an awful animal joke for your oncologist.



And my point is?



God does NOT promise that if we eat a certain way, or exercise a certain way, or buy a certain program, that we will be “doing His will!” and thus be preserved from illness. He does not say this. Ever.



Even if good looking and charismatic people say that He says this…He doesn’t. Within a variety of faith traditions, that’s pretty easy to check. He doesn’t.



Promising people cancer immunity if they cut out sugar and avoid traditional medicine and buy a particular (expensive) program of wellness because That is What God Wants…this makes me insane. It’s not true, and for people desperately wanting that magic bullet, people wanting to be faithful to a Judeo-Christian understanding of the world, this goes beyond marketing into cruel manipulation. Saying people who choose traditional medicine and leave the program die…unconscionable.



“Claiming” healing as part of a program may make you feel good, but I just have not EVER seen God be like “Oh! Phew! You loudly and publically CLAIMED healing, THAT will make all the difference, those quiet prayers were just too blasé. “ Actually, I can think of at least one or two times where God was like “hey, don’t make a big show of praying so people are like, Whoa, that is some hard core praying there.” “Claiming” healing should not become a commercial for a product or program. That is exploitive of the person who is sick, and again, just cruel. Really, really cruel.



And I should say, we have gone to healing services with my G, one with a very famous priest who has a healing ministry. I was so leery…and we got there, and he was the most unassuming man I’ve ever met. “I pray, and sometimes God sends healing,” he explained. No conditions, no “you have to DO THIS”, no guilt or rules or anything. Just a simple faith that hey, asking God for healing never hurts. And he took about 30 seconds and said a simple prayer with my G, quietly, so only we could hear, just asking for healing. And you know what? 6 months later she was sicker than she had ever been, but honestly, MOMMA had been healed of guilt and anger and hurt. I was able to help G, and cling to hope because that quiet, humble prayer so touched MY heart. Didn’t see THAT coming…



I don’t think God is looking for any kind of endorsement deal. He doesn’t need extra publicity or residuals from having His name appear on “wellness” programs.



We all just do the best we can. No one should feel guilty for doing the best they can. No parent of a kid with cancer or a brain tumor knowingly or unknowingly GAVE their child this illness. Implying that choices create cancer “95% of the time” holds a particularly vile form of guilt for parents who are already suffering. Using that guilt to sell something…



Sigh.



I think I have said my piece. My heart is so full every single day for our friends battling, for our friends mourning their lost children. My heart breaks when I think too much about the moment we are in right now. My heart shudders when I fish out the separate calendar I have (once again) just for medical stuff, or when my kid tells me her head feels “funny”.



That’s why I have to say this. And because the claims I mention were made very publically by someone who knows my children pretty closely, I do take it personally. How can you know us and say these things? What cognitive disconnect exists that allows these ideas to ferment in your mind?



But now I have said my piece, and I have to let it go for now, even though I know, despite my efforts, these words will likely never get where they need to go. Now I will go back to silliness, and I will write down the ill-advised tattoos thing in my head and Zen and the Art of Sparkly Rainbows. No more heavy stuff for a while.  Actually, we have some very exciting happy stuff happening in 2 weeks... : )  : ) 

the tattoo I saw that inspired the Blog in Waiting can not be reproduced in a family friendly manner, ahem.  So enjoy the sparkly rainbow.

Thank you to anyone who read this, and can hear it. I appreciate that. And I do pray for our friends every day…that God bring healing, and if not healing then grace for the moment.



You are all much in my heart.

What Not To Say: I Thank God Almighty That I'm Holier Than Thou

The Post I have Hesitated to Post…

Previously, on What Not to Say…

So I had a block of time last Thursday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” A couple of my fabulous sisters will swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be better prepared for the next challenging conversation with someone who is being smote.

This episode is a tough one. I should say up front, I am devout within my faith tradition (Roman Catholic). So I speak from love, really.

WHAT NOT TO SAY #3: “I thank God Almighty That I’m Holier Than Thou!

This episode is tricky. Certainly the “God doesn’t give you more than you can handle” can fit under this heading. We have relied on our faith to get us through catastrophe, and obviously this particular point will be different for people with varying ideas about God and the cosmos.
But perkily saying things like,

a. “I have a special needs child (not life threatening), and I just told God, I know you may want him back someday, and I am ok with that, if you want him back he is YOUR child, I am only given him to take care of for a little while!”

…well, I think I actually said, “I am not ok with that. I want to keep my child, thank you.” I almost snapped and said “Oh no you didn’t!”, but I refrained. Barely.

Look, dealing with catastrophe is so personal. If you deal with a challenging but not catastrophic event with the attitude I just outlined above, kudos to you for achieving such a high level of spiritual maturity. But that might not be a helpful gem to share with a parent fighting pretty desperately TODAY to KEEP THEIR KID HERE WITH THEM. HERE. ON THIS PLANET.

We believe in Heaven here. We regularly pray to all of our friends up there, especially those who meant so much to us early in our brain tumor journey, friends who battled cancer or brain tumors who did not survive. The night before G started chemo this time around I imagined calling all of our Heaven friends together…Nora, Marge, Sandra, young Nora, Hadley, Timmy, Dani-Ella, Emma, James, Joe, all the Grandmas & Grandpas…I called them all, and they came together in a big room in my mind, and I spelled out the game plan…they needed to bug God every day for this blasted chemo to work. We would hit the tumors with everything known to science on this end, and they needed to pull for G on their end…G knows she has a team on the other side of the field, and that helps her. I could really see this in my head, and it helped ME.

We believe we will all meet again. But super-spiritual reflection about “I’ll give my child back to God freely!” from someone not in the battle doesn’t come across as shared wisdom, but rather as condescending spiritual one-upsmanship .

We may need to come to ACCEPT that reality some day. Just not today.

I have heard other brain tumor parents share their acceptance of their child’s imminent death in a way that is heartbreaking and full of dignity. This is different than someone whose child IS NOT in that moment saying “I’m ok with God taking my child”. It’s easy to say that when He shows no sign of doing such a thing. Theoretical acceptance is Very, very different than the mightiness needed to gently lay down the sword and hold your child as they step into Heaven.

To my brain tumor and NF family who have had to live this mightiness, my heart is with you.

b. “Well, this is God’s will for you…” or “God’s will be done”…

Yeah. I guess that is supposed to be comforting? Or that in saying this is what God wants, we are supposed to be ok with it? I am not ever sure what the thought process is behind this statement. Maybe it’s just a way for the speaker to a) make the utter unreasonableness of catastrophe seem logical or b) once again emotionally separate themselves from the pain of the other person’s moment. I really don’t know. But it isn’t helpful.

When G was first diagnosed, we had a week in which a) I found out she was going blind—like, truly blind, she had been compensating so well, and we had so many other chemo related issues then, we didn’t know b) something I treasured was lost c) our patio table got smashed in a storm. This was in between miserable treks to a hospital in another state every week…and G coming into my room every night at 3 a.m. just feeling sick…That table breaking WAS the straw that broke this maternal camel’s back. As I cleaned up broken shards of tempered glass from my patio, I burst into a song I composed for the occasion entitled “God Really Hates Me”. It had a catchy tune…

Ok, so I needed more than a little help at that point. I think God helps us through tough stuff, I don’t so much think His Joystick Really Does Get Stuck On Smite (yes, another Top 40 Hit of that particular season of my life).

Saying that catastrophe is God’s will for someone is kind of like singing the refrain to God Really Hates Me, but filling in YOU for Me. At least that’s how it comes across. Even Jesus had trouble with God’s will right at the end of His life. Did He do what He had to do? Yup. Did He pray “please God take this cup away from me?” Um, also yup. So if JESUS had to struggle with this idea….I figure parents struggling with this are in good company.

Whatever your beliefs about how God works, the “this is God’s will for you” doesn’t help people mid-crisis. Really. Unless you actually saw a heavenly finger writing those words on a wall, don’t say it. And even then…yeah. Please don’t say it. God’s will for someone else isn’t really ours to say.

Thanks to Christine Dalessio over at http://feminismthecatholicfword.blogspot.com for reminding me of this last one. I think I had blocked that one out!

c. I should add, too, from my friend Blythanne, that God may in fact “open a window when He closes a door”, but unless you are a nun singing to the Alps in a classic Hollywood film, OR you actually are sitting on the windowsill, maybe this should be a statement to avoid as well. Folks mid-crisis are not willfully ignoring God’s way out…and telling us the window will come is just insanely frustrating. Maybe it is supposed to be encouraging. But it is just insane frustration wrapped in a cliché.

What TO Say: Like before, “We’re praying for you”. That’s enough.

I know in really, really hard times, I have no words for prayer, and I deeply appreciate my friends and even strangers who pray for us. That’s a language that is never wrong, no matter the differences in dialect or vocabulary.
Or, if saying anything seems wrong, just send a card that says you are praying or just thinking of the person. One of the most beautiful things we ever received was a card that told us someone had arranged for a healing mass to be said for G at a special Catholic shrine…and that person was one of Dave’s coworkers, a lovely gentleman…who happens to be Jewish. We were so moved by that, the effort he must have gone to to figure out HOW one arranges a Mass…at a shrine…in another country…

With no words, he helped us along the path.

And….the worst thing ever said in the name of religion to parents mid-catastrophe: (and this is NOT something we have experienced, but I have friends who have endured this horror),

d. And I will simply answer it without speaking it. Kids don’t get sick because their parents are bad. Period. God doesn’t punish people by making their children sick. A child with a catastrophic illness is not a rebuke for parental sins. Yes. I do know people who have been told this about their children. Really.

To those who say those kinds of things: read your freaking Bible. The New Testament parts (ie the more “recent” chapters). The ones where He actually said things like “hey, this person wasn’t born blind because of the sins of the parents”. …I mean REALLY.

And I know, honestly, that I’m preaching to the proverbial choir here, NOBODY who reads this blog has ever done that. I am confident of that. But it merits saying, if only because of my friends who have had to suffer those hateful words. And if you want to share this…be my guest.

Sigh. Those are my thoughts about What Not To Say : Holy Edition . And thank you to all of those people who do pray so faithfully each day for my G. We are grateful. And I’ve stopped singing “God Really Hates Me”, so there has been SOME kind of healing here, right?

What Not To Say Part II: Merely a Flesh Wound!

Part II of What Not To Say, my tv show where people find out what NOT to say when talking to someone battling catastrophic illness. In this episode…

2. Merely a Flesh Wound!

a. “It’s all going to be ok”

I would suggest that for most people battling any kind of catastrophic illness with their children, the whole THING that makes it catastrophic is the underlying theme of “This really, really might NOT be ok”. Saying that it will be might make you feel better, but it makes the warrior or caregiver want to drop kick you (ok, maybe that’s just me) because it invalidates the depth of yikes being faced.

In Chemo Part 1 Section 2, back in 2005, one mom said to me, after finding out G had brain tumors (because G happily mentioned at her brother’s Little League baseball game that she was going to go on a Make a Wish trip but she wasn’t sure why—awkward!), “oh, but if the tumors are benign it’s not a big deal, right?”…to which I think I responded something like, “well, she’s still on CHEMOTHERAPY, and we can’t get the tumors out, and there’s no room for them to grow?” ; I didn’t even get to the vision loss and the neuropathy and the anxiety issues… and that was the last she ever spoke to me about it.

We don’t use the B word anymore. Nothing about the last 7 years has been benign. But I digress…

No parent EXPECTS people to understand the yikes. Truly. But don’t downplay it, dismiss it, or otherwise indicate that It Really Isn’t a Big Deal. Better to say nothing than to trivialize the crisis.

Honestly, I have some friends who CAN’T talk to me about my daughter’s illness, and I respect that and love that they are still my friends…the reason they can’t talk about it is BECAUSE the woe is so huge and scary. And part of ME being a friend to them is respecting THAT pain. I have friends who feel deeply about what’s going on, so deeply that they can’t talk “shop”. That in and of itself is an acknowledgement of OUR pain, and I see that as love. Does that make sense?

That’s technically a sneak peak of “Normalcy is Not a 4 Letter Word”…

Anyway, I get that it’s a hard balance between Uncle Clem and Pollyanna, but it is one worth at least trying to achieve.

WHAT TO SAY: “I am sorry. This must really rot.” Just acknowledge the yikes.
Or, “I can’t imagine how hard this is. I am just so sorry.”
That’s it. Thank you for acknowledging the reality of the situation. That means a lot.

b. “God doesn’t give you more than you can handle”

I’ve written about this before, in an earlier blog. He does. That’s ok. I mean, He does, but saying He doesn’t again diminishes the pain of the moment. It does not EASE pain, it just brings on this feeling of “well DANG, I am even screwing up being smote because this sure as heck FEELS like more than I can handle!” God may give us grace for each moment (sometimes even THAT is hard to tell), but that’s a different issue.

WHAT TO SAY: “Hey, I’ll pray for you.” Or, “I wish I could make it better.” We wish that too, and we appreciate the acknowledgement of our pain. (at least I do).

A sub-whatever of this is

c. “You are SO STRONG!”

Ok, so this is not an offensive thing to say. It’s just kind of…separating? Isolating? Like, the person battling is so strong in a way that makes them Different. Catastrophic illness is different and isolating enough. While this is really not said in a way that is meant to be sniggy—to the contrary, I think it’s supposed to be upliftin?-- admiration or whatever that is (fearful respect of the “there but for the grace of God go I” variety? ) isn’t quite what a warrior/caregiver needs.

Speaking from personal experience, “strength” is not generally the feeling that one has mid-battle. Sleep deprived? Stressed? Irritable? Hungry? Not hungry? Unfocused? These are better descriptions of way I feel most days. As a parent caring for a child with a catastrophic illness, I would LOVE to just hide under my bed some days. I do vacuum under there, it’s clean and my bed is pretty high up (it’s kind of old fashioned), so I would fit. I could live under there and just pretend that none of this ever happened.

Heck, there were days when my kids were all little that hiding under the bed seemed like a plan. Those toddlers can ALWAYS find you. I didn’t have a choice THEN. I certainly don’t NOW. Maybe doing what you ‘ve gotta do is strength, but it just feels awkward and stupid and kind of isolating to hear it said that way. Until I have a patriotic bustier and a Lasso of Truth (and the physique to literally carry that ensemble, ahem), I am not Wonder Woman. So this should go on the list of things to please not say.

WHAT TO SAY: “Your kid is so mighty.”

I know. This seems like the same thing, but I don’t think it is. In my mind, mighty acknowledges that something tough is being faced, perhaps with anxiety and trepidation but ultimately with resolve. It’s a semantic difference, but mighty seems more accurate. Also, I think my kid is WAY MIGHTIER THAN I AM. So thank you for noticing. : )

Next Time: I Thank God Almighty That I'm Holier Than Thou .

Prepare Ye the Way...

Prepare Ye the Way
It’s December 12, 4:40 pm, and my hands are stinging from my act of wifely niceness…I just put the lights on the Douglas Fir With The Unexpectedly Awkward Branch (and the prickliest prickles) that stands in the corner of our living room. Things have entered a new realm of crazy here, and our preparations are late and somewhat haphazard. That’s not really different than other years, honestly…

This year’s season of Advent is a season of preparation in every sense of the word; from baking and mailing cards to lighting our special candles and opening our Advent calendar, we attempt to get ourselves ready for what is a high holy day in our faith.

That said, we’ve only lit our candles one time this season and we had to catch up for a week’s worth of calendar days after church yesterday. And the cards are still in a box on my dining room table, and not one thing has been baked here. Yikes.

For us, this season of preparation has taken on a dual role this year. Our anticipation is not just for the birth of Jesus on Christmas, for the lovely celebration of gifts and food and family. This year Advent has become a season of preparing for my 13 year old daughter to restart chemotherapy after a 5 year break.

5 years sounds like a long time. I assure you, it’s not. It just isn’t long enough.

So while I feel a little overwhelmed about the gifts I haven’t purchased and the unbaked cookies, the ghost of Christmas future is standing at the door once again. Honestly, that’s more overwhelming. He’s awfully creepy looking, you know? Even in the Muppet version…he’s creepy.

This preparation is different than our first bout with chemotherapy, which involved the horror of an initial diagnosis, two surgeries, and unspeakable grief and a deep feeling of abandonment by God. This time I have some time, ironically only BECAUSE my G needed unexpected surgery…my grief is deep, but not unfamiliar, and I have made peace with God in this situation. I still holler at him an awful lot, but at least I know He’s hearing me. ; )


This time I can get things organized in my house (well, as much as I NEVER do, alas), I can get some meals in the freezer, make sure I have a game plan for dealing with unexpected days where I have to miss work, and plan strategies to get my daughter through this. Like our Advent preparations, we know a little bit what’s coming at the end of our 3 weeks of preparation. The visions dancing in our heads are NOT of sugar plums, sadly.

And while the immediate end of this season is scary and uncertain, it does bring with it some hope. The drug my daughter is starting was simply not invented the last time she had to fight. And if this one doesn’t work, there are 2 other new drugs that she can try. There is hope amidst the shadows.

At the heart of our hope is my daughter. Just as the heart of Christmas is a Person, the heart of our hope here is my G. She is funny and mighty and full of attitude. Her Jersey girl attitude and her Irish/Italian/German heritage give her chutzpah, and her beautiful soul gives her the strength of heart to get through.
She is scared. She is sad. But she is so mighty. She will get through.

So we will celebrate this season, albeit in a bittersweet kind of way. We will celebrate our time together as a family, a time once again threatened by the Elephant, and we will celebrate our faith, which we know will give us the fortitude we need to step through the door to the new year and the new fight. We celebrate our friends and family who have already carried us through so much.

And in between buying a gift for my mom and the fixings for our Christmas feast, I will buy extra pretzels and crackers for lunches, Costco sized packages of meat and such to make some casseroles, and maybe even a few documentaries for my history classes for those days when we get stuck at a hospital far from home. We will prepare. I will try to find ways to get MY head in the game, to renew my flagging emotional energy for the fight ahead. We will prepare.

Hopefully amidst our chemo preparation we can have a moment to prepare our hearts for this most beautiful day that is on the horizon, this reminder that we are so loved that a child was sent to us…and in that moment, I will thank God for my children, and for my love for them.

This hurts. A lot. I can’t lie about that. There are moments in the day where I feel like the air is sucked from my lungs and I’m teetering on the edge of some kind of void. But I will get my game face on. We will prepare, and we will roll with the punches, and we will get through. I have to think that even Mary, as she prepared to have Jesus, was a bit taken aback by having to schlep all the way to Bethlehem. Just the thought of donkey smell while pregnant…ugh. Her preparations were challenging too. Hm.

From the kitchen just came the call, “oh my gosh, Christmas is so SOON!” from my 13 year old. If she can focus on Christmas, I should too, right?

That said, maybe I should try to get some baking done…then I will have cookies to munch on while I prepare for whatever is to come. : )