+100

Today is a HUGE milestone for transplant survivors.  In a way, today my transplant survivor status is official.  It's Day +100!!!!!

I can drive.  I can prepare food.  I can change diapers.  I can be in my home without adult supervision of any kind.

My post transplant scans all came back clear which was pretty anti-climactic.  We knew they would be.  I just can't get myself to feel much of anything about it because right now I can't get past the fact that my remission can be taken from me at any time.  I'm trying to focus on the positive and there is SO much of that in my life.

I'm learning that when it is most important for you to be optimistic, it's also the hardest to be optimistic.  So, in honor of reaching the +100 milestone with Bone Marrow that functions pretty darn well and without being re-hospitalized one single time, I present you with a list of positive thoughts:

• There is no reasonable explanation for why I made it 100 days without having a single fever.  I had to go to the hospital 4 times during my first line treatment to have blood cultures done because I had a fever.  I went into labor with Avery because of a fever.  Somehow, this time when my immune system was WAY WAY WAY more compromised to the extent that I as not allowed to handle dirty laundry...not one single extra trip to the hospital.  In a house with 6 small children where the baby plays in the toilet, the garbage, and plays "Ice Bucket Challenge" with the dog's water bowl.  In a house with a potty training 3 year old boy.  That's crazy, and that's pretty awesome.

• My husband is such a hard worker and such a super smart man that he was able to provide not only the medical care that I required but also Nannies 4 days a week so that I would be able to follow all my post transplant restrictions in a house with 6 kids who are home all day.  

• I live in a town and a time where I have access to world class healthcare a short 20 minute drive from my home.

• We are surrounded by friends and family who have supported us from the very beginning of this ordeal.

• I get to go back to Pilates tonight and get back to swimming my laps this week.

• My hair is really coming in and my eyebrows have come in so well that I have to pluck the ones that step out of line.  100 days ago I was completely cueball bald and had about 9 eyebrow hairs total and no eyelashes at all.

• Regardless of the what the future may hold, I have this time with my family, right now.

There's a thing among transplant survivors where you post a picture of yourself on Day +100 so here it is, from my grainy cellphone camera, taken by my son Owen:

Hair: check.  Eyebrows: check  Eyelashes: check  Functioning Bone Marrow: check

Thank you everyone for your prayers, love, and support as I continue to walk this crazy cancer road!  Day +100 is not what I thought it might be, but it's still pretty darn good.

14 Days, 26.2 Miles, and 35 years

So...this is awkward.

I've been hiding from you which is not very nice considering how kind you all are to me.  The short version of why is that:

a.  cognitive function not in the crapper anymore but mostly at capacity with daily life
b.  living with my husband and kids again
c.  the longer I wait to write the weirder it feels to start up again

I was also approached to do an awareness post in September and I had a big mental panic attack because I'm SUPER conflicted about disease related awareness and so I just went into a mental bunker to hide from the whole thing.  Then I felt guilty that I didn't do it.  Then I felt guilty I didn't do awareness posts for ALL THE CANCER!!!  Now I decided to put on my big girl pants and give my adoring public what they want...half baked ramblings and haphazard punctuation.

14 days until Day +100

Today is exactly 14 days until I'm 100 days past transplant.  Starting day +100 I'll be allowed to do all kinds of things like drive, change diapers, handle raw food, and handle dirty laundry again.  I've already signed up for my first volunteer shifts at the kids' schoolish.  I cannot wait.  My recovery has been slow but steady.  My germ fighters (ANC) were fluctuating quite a bit for a while and I was having to get weekly growth factor shots.  I finally stopped the shots 2 weeks ago and had a pretty good count so hopefully that will continue.  My platelets and hemoglobin are good which is really nice, they're usually the last to come up.  Waiting for your blood to accomplish things is weird.  You feel like there is something you should do but other than eat and be active you're pretty powerless (really cruncheroos, sorry).  When it comes to germ fighters you're totally in the dark about whether you're improving or not, I've never been symptomatic (bleeding nose or gums) when my platelets were low, but oh my goodness, I could predict pretty accurately where I was on the scale for hemoglobin just based on how I felt.  My hemoglobin is on the low end of normal right now so I'm feeling great.  

I'm starting the re-staging process this week.  CT Scans on Friday and then next week PET scan, cardio/pulmonary test and DEXA scan to see how my bones weathered this storm.  My guess is my bones are fine because they have me on enough Calcium to cure a horse with osteoporosis.  

26.2 Miles for The Leukemia and Lymphoma Society

Yesterday, my best friend from middle school and dear friend for life, Dr. Joelle Taylor, finished the New York City Marathon in 4 hours, 19 minutes, and 49 seconds.  In the process of preparing for this incredible accomplishment she raised $4,655 for The Leukemia and Lymphoma Society.  She ran in my honor and I am deeply humbled and grateful.  Joelle, I am so proud of you and I am so grateful for your love and friendship!

35 years

On October 25th, I turned 35. 

 Remember in elementary school when you learned to round to the nearest 10?  5 or more in the ones place and you round up?  Well, Michael is 3 years older than me and so I've mercilessly teased him since he was 25 about "rounding up".  It went something like this..."You're so OLD, you're not 25 you're really 30!  You have a wife and a house and your age ends in 5 so round up!"  Super funny Nella.  That used to seem like a funny joke when we were dumb kids.  So anyway, we've been teasing each other in this manner for a long time.  

This year Michael gave me the old speech about rounding up (haha!  You're really 40!) and I realized that while it's not a guarantee, statistically there's a decent chance that rounding up is the closest I'll ever get to 40.  My chances for surviving the transplant were good, but the truth is that my chances of surviving this cancer for 5 years are not the kind of odds that make you feel awesome about the future. 

It's weird how our mind boxes things up without us really knowing.  After I found out that I had relapsed and went through the initial whirlwind, my mind became very focused on the task at hand and not on my prognosis.  As each step of treatment intensified I became more and more consumed with the tangible steps in front of me.  In the last few weeks as I've felt more and more healthy and my recovery from treatment has become less and less of a full time job, my mind has opened a door that looks like this:

Fancy bloggers with discipline would have photoshopped this to read:  "Don't Open, Cancer Inside"

One day a few weeks ago all of these really scary statistics that my mind had cordoned off behind yellow tape and razor wire were released back into my thought stream.  Now that I've survived the transplant process I'm back to thinking about cancer.  That may seem weird because how could you be at a cancer hospital and not think about cancer, but to get through something like the transplant process I really needed to focus only on that and not on the actual cancer stuff.  

I can't hide from the truth anymore, which is that the chance that I'll still be around and Lymphoma free in 5 years is 50%.  50% is actually being a little generous based on how quickly I relapsed last time and some other factors.  That's a lot of reality to deal with.  Truth is, sometimes I'm ok with that and sometimes I'm just not.  

Please do not mistake this for not having a positive attitude.  I've realized  through this that many people think that a positive attitude is some kind of magic spell that makes everything just work out.  I'm here to tell you that that is not why a positive attitude helps you when you're sick.  A positive attitude doesn't have much control over whether or not cancer grows in your body.  What a positive attitude does is makes you swallow your pills when you don't feel like it and you're tempted to think "What difference does it make?".  It makes you get out of bed and get dressed and go to the hospital when you feel like you just can't face that place again.  A positive attitude makes you keep moving when it's just so hard.  A positive attitude doesn't involve avoiding reality.

Michael and I have adopted a policy of "expect the best and plan for the worst".  We've started researching the most commonly used treatments for 3rd time relapsers and evaluating clinical trials.  I already have a list of questions for when I return to my Lymphoma Oncologist at day +100.  I may still have some treatment to go, even if my scans are clear, which they should be.  

I can't be positive that I'll make it to 40 because I know about math, but I can be positive I'll fight like crazy to get there.  

Getting old is the best thing that could ever happen to me.

26 Days

Tomorrow morning, on my 26th day as an inpatient on the Bone Marrow Transplant Unit at Roswell Park Cancer Institute, I will be discharged!!!  It's 99% certain which is as close to 100% you'll ever get from a doctor.

Thank you, thank you for your prayers and support.  This process is not over for me, but this is a huge and welcome obstacle cleared.

Please pray that I will never be admitted here again.  Please pray that I can leave this behind and raise my babies with the love of my life and tap dance into old age with him.

Please pray for my husband and kids.  I'm still not going home...I'll be at my Mom and Dad's for 2 weeks.  These 2 weeks are critical in ensuring that I don't end up readmitted.  This is the best decision, but it is a very difficult one.  We'll be able to see each other as much as we want, but they just want Mommy home.  Mommy just wants Mommy home too.

Pray for my Dad who will be in charge of my care and supervision for the next 2 weeks.  If anyone can snap this patient into shape it's him.  He's going to be in charge of my meds, making sure I'm exercising, monitoring my symptoms, and taking me to my appointments.  He's also going to be in charge of getting me to gain back the 10 pounds I've lost.

Please offer a prayer of thanksgiving for my husband who was nothing short of heroic during this time, for my Mom and Dad, for my In-Laws, for many dear friends and loved ones who supported us with prayers and meals and rides to swim lessons.

Please offer a prayer of thanksgiving for the Doctors, Nurses, Health Care Aides, Nurse Practitioners, and everyone who cares for the transplant patients on 5 East at Roswell Park Cancer Institute with great compassion and skill.

Day -8, Signing Consents, Mental Refiling

Day -8

Welp.  I'm here.  All hooked up to drug numero uno.  Etoposide for 30 hours.  I'm getting three different chemos over 6 days.  Yuck.  Today is day -8 (minus 8), which means I'll get my actual transplant in 8 days.  The day I get my cells back is Day 0 and every day after that is +1, +2, etc., until I get to day +100, which will be a huge milestone for me.  I've realized when explaining my treatment to people in real life that it's kind of confusing so I'm going to explain this phase more clearly.  First and foremost, it's important to know:

Bone Marrow Transplant Vs. Peripheral Blood Stem Cell Transplant

In a Bone Marrow Transplant they actually put you under and drill out Bone Marrow from your hips or from a donor.  I'm having a Peripheral Blood Stem Cell Transplant where they gave me growth factor shots and harvested stem cells from my blood stream using and Apheresis Machine.   Both of these treatments are called Bone Marrow Transplants interchangeably.  The kind I'm getting is much less risky since they're my own cells and bonus! no drilling.  During my last go round with Lymphoma I read about transplants but I filed it under "Doesn't Apply To Me" in my mind because, seriously, who ever thinks something like that will apply to them?  The whole thought process took about 30 seconds after I read about it: Step 1- decide it doesn't apply to me, Step 2- totally sanitize the reality of what I've just read because it doesn't apply to me, Step 3- file under "doesn't apply to me" which is just next to the circular file in my brain.  

Signing Consents Kills The Romance

So, now I've had to dust off that file and put it back under "Applies To Me" which is cross referenced with "Reality Bites (not the movie)".  Obviously, at no time since they told me this was happening was I happy about it.  But once I got going it seemed a bit romantic in a way...using my own cells...to cure me!  How human and sciency and just nice.  Don't get me wrong, it is nice.  It's just not as romantic as it sounds.  My transplant is really a rescue.  My cells aren't really curing my cancer.  I'm already in remission.  Again.  I need this transplant because the best chance at keeping my cancer from coming back is to blast my Bone Marrow to kingdom come using extremely high doses of extremely powerful chemotherapy.  I get 6 days of it.  The Etoposide I told you about, Cyclophospamide, whose evil twin I've already had, and Carmustine.  This Chemo is going to completely destroy my bone marrow.  All of it.  It is going to completely destroy the source of my red blood cells, white blood cells, and platelets.  It is going to destroy me.  We need to wipe it all out in the hopes that any little bit of my cancer that is hiding will also be wiped out.  Without intervention following these 6 days of chemo, I would die.  I would die of some kind of infection, or I would bleed to death.  I would die.  The stem cells that were collected are being used to rescue me from my treatment.  For a short time, I will be mostly dead.

This is a TAD dramatic.  Only a TAD.

 The reality of this sunk in slowly as I explained the procedures to others, although in my mind it continued to have that sanitized soft focus sheen of "can't possibly apply to me" even though I knew I was describing my own treatment.  What really killed any romance in the idea of being "saved by my cells" was signing the consent forms for my treatment.  In bold on several pages it said "1 in 20" patients will not survive this treatment.  I've signed a Health Care Proxy and Advanced Directives.  I will survive this treatment of course.   1 in 20 doesn't really mean me because that includes 4 year olds and 80 year olds and people who are not in remission before transplant so obviously that won't be me.  That doesn't soften the impact of signing all that paperwork and having to write out in black and white "I am a Roman Catholic, if my death is imminent, please call a priest so that I can receive the sacraments."  It doesn't take the bite out of knowing I'm letting them putting something in me that would kill me without dramatic intervention.  After they put my cells back, I'll get blood products and antibiotics until such time as it appears my bone marrow is chugging along, producing what I need on its own again.  For now I'm hunkering down and doing everything I can to be a good patient.  

Thank you for your prayers, and if you can, please continue them.  Please pray most especially for Michael and the kids.  God's will for them is God's will for me.

Tales of Woe, Tales of Triumph And The Limits of bareMinerals

As I write this, I'm technically cancer free, which is weird because I didn't even do the hard part of my treatment yet.  What does that even mean, Nella?  I've finished two rounds of ICE chemo and I will not need a third.  I had a CT scan and a PET scan and they came back negative.  All good news.  Great news.  I've begun the shots that will get my stem cell production into overdrive and then force them out of my bone marrow and into my bloodstream.  I'll get a special catheter/line placed in my chest this Tuesday and they will begin to collect the stem cells.  This is such a whirlwind.  I'll be admitted the 31st of this month for the GIANT chemo and transplant.

I'm gonna do the rest of this post in reverse chronological order or maybe just weird disjointed stream of consciousness order.  Cut me some slack...I've got Chemo Brain over here.  I'm sure there are more literary ways I could do a post in reverse chronological order and I'm pretty sure I would be capable of conjuring them up and executing them but that's too tall an order right now.  So here we go, you know the first part, currently in remission and starting Phase 2 of treatment...

Tales of Woe:

I just came home after spending 2 1/2 weeks at my parents' house.  TWO AND A HALF WEEKS.  I came home from my last chemo on a thursday and our 7 year old Madeleine woke up throwing up that following Sunday.  Next thing you know, 2 1/2 weeks had passed as some kind of bug worked its way through the entire family, including poor Michael.  Michael has been, as usual, a hero.  He's been sick himself, working during the day, taking care of sick kids at night and in between bouts of sickness he's taken ALL SIX KIDS to THE BEACH and STRAWBERRY PICKING ALL BY HIMSELF.  Now I'm home and it's glorious.  I get tired really easily so I can't get much done, but I'm in my own house and the kids are just happy I'm around.

This past Friday I had a Bone Marrow Biopsy which is my fave (lies).  They did it right in the Lymphoma Clinic at the hospital, so I got my good news about my scans from the nurse practitioner and the oncologist and then they got me set up for the biopsy.  Last time I had one I was pregnant and I couldn't have any kind of medicine to help me relax.  I just had local anesthetic.  This time I had Ativan on board and they gave me a Fentanyl Lollipop.  I'm not kidding.  That is a thing.  Schedule II Controlled Substances in lollipop form is an actual legitimate thing.  I thought this was going to be great because Bone Marrow Biopsies really hurt and I thought this was going to help it hurt less.  I'm not sure if it worked, because it still hurt, which--whatever that's fine.  I kept eating the stupid lollipop because I didn't feel like it was working.  They don't really give you any guidance, they're just like "Hey, here's a Schedule II Controlled Substance in a lollipop, have at it."  So, anyway I didn't think it was working.  Until the biopsy was over and I tried to get up.  It was working.  I felt pretty loopy, but I gathered myself and I had Michael to lean on.  They sent us down the hall towards the reception desk and as I was chatting with the receptionist everything got sparkly and weird and I said "I think I have to sit down".  Then ALL the nurses in the whole clinic came out of nowhere to get me into a chair and give me emergency apple juice.

Even though I'm supposed to be going in reverse chronological order you can't have a proper laugh at my expense if I don't tell you that exactly 2 weeks before this I passed out in the exact same spot, so when we came into the clinic this time I was joking around and talking a big game about how there'd "be no shenanigans."  Thud.  <---That's the sound of me falling off my high horse.  AGAIN.  I perked up from the apple juice and they let me go and then I was going to have lunch with Michael!!!  I didn't really feel right but I thought I'd shake it off in the car, because this was the first time I'd seen Michael in a week and a half and I wasn't cutting it one minute short.  We went to Wegmans and I was going to get Chinese Food but I thought better of it when I got there.  I should have told Michael to take me home right then, but I powered through it because I missed Michael so much and I wasn't messing up our Bone Marrow Biopsy Date Goshdarnit!!!!   I worked really hard at keeping my eyes open, eating my soup, and being conversational while we were at Wegmans and then poor Michael drove me home to my parents' house.  Poor, long suffering, patient Michael.  We got about 2/3 of the way there and suddenly I realized something was NOT RIGHT.  VERY NOT RIGHT.  Thank goodness we're not very good at keeping our vehicles tidy because I quickly located a bag and THREW UP IN THE CAR.  Into the bag in the car but still.  Ugh.  It was really bad.

Michael pulled over and helped me and cleaned the whole thing up and put me in the back of the car where I'm pretty sure I promptly went to sleep.  I hope I did.  Otherwise I was super fun half conscious Nella who doesn't know how to just ZIP IT because there's nothing she can do to fix anything.  Half conscious Nella would have been slurringly apologizing to Michael over and over and OVER and Michael would have been within his rights to wish half conscious Nella was straight up UNconscious.  Michael is a gentleman and won't admit which one I was.  We finally got back to my parents' house and Michael put me to bed, where I stayed for 5 hours.  That night I ate some dinner.  Threw it up.  I slept hard the whole night and woke up to a revelation.  Fentanyl and I are not friends.  I might have had a hard time figuring this out except that I had the exact same pukey sleepy reaction to it when it was in my IV pain button after I had the biopsy on my lymph nodes a couple months back.  They said "hey, no more Fentanyl for you we think it's making you sick." and I was like "no problem I hate it."  I didn't remember the name of it because I thought it only came in pain buttons.  I didn't know they give it out in lollipops because WHY WOULD I EVER THINK THAT!?!?!?.  So Fentanyl is the devil and I hate it.

What other gross things have happened that I can tell you?  OH!  I'm part midwesterner now!  I have one liter of red blood cells from Davenport, Iowa coursing through my veins, I also have one liter of locally sourced blood because I'm trendy like that.  I also have one bag of platelets that are not my own as well.  Oh my gosh you guys it is SO GROSS.  Everyone acts like it's so casual: "Dum dee dum putting someone else's blood in you no biggie." but let me tell you it is NOT CASUAL.  You can see the whole thing--you can see the bag of blood just hanging there on the IV pole being bloody, you can see the blood going through the line and INTO YOUR BODY--and I'm here to tell you it's disgusting.  Miraculous, and smart, and life saving, and DISGUSTING.

So remember up there where I told you that Bone Marrow Biopsy day was the 2nd time I sent the nurses running for the emergency apple juice?  Well, here's the story of the first time.  You see, it turns out that IF you go and get chemo for three days straight and can't swallow anything because air is gross, water is gross, opening your eyes is gross, food is obviously gross, rolling over in bed is gross and almost impossible, etc., getting up at 6:30am the day after you are discharged to go back to the hospital so you can get blood drawn is not the best idea.  I mean, you have to go back to the hospital for your lab check.  They have to check your blood, but 7am is not the best time for it.  You can't go get blood drawn if you haven't eaten anything in 24 hours.  You definitely can't walk around the hospital unaided after having blood drawn and then wait in a waiting room when you JUST finished 3 days of chemo and haven't eaten for 24 hours, but this jackass typing right now thought she could.  It was on the schedule so I thought I should.

I woke up that day, sort of.  I ignored that I could only walk short distances without feeling lightheaded and that I had to sit(slump) on the toilet to do most of the getting ready.  I managed to get dressed and put on my bareMinerals.  I've written before about how much I love bareMinerals.  LOVE.  I put them on like armor (very sheer natural armor) before I head out in public (which is the hospital 95% of the time these days) so that everyone can exclaim over how "not sick" I look.  Particularly at the hospital I feel like it's a subliminal message to everyone there about what abysmal fail-y failures they will be if they don't get me better.  Overall, it works great.  Unfortunately even bareMinerals have their limits.  It turns out that if you turn gray (or grey), begin to sweat profusely, and then lose consciousness--bareMinerals can't hide that.  Don't write angry letters to Leslie Blodgett.  Essentially bareMinerals can't camouflage arrogance and stupidity.  I'm sure they're working on it.

Luckily I turned gray (or grey), began to sweat profusely, and lost consciousness in my clinic where all the nurses know me.  I ended up having to get fluids through my port and ended up breaking a streak I was pretty proud of.  This was the first time I threw up as a cancer patient.  As you learned in the tasteful missive you've just slogged through, it wasn't the last.  I have a tendency to puke when they flush my line while using my port.  I found out if I sniff an alcohol pad that sometimes I won't puke, so if you're a fellow cancer patient who forced yourself to read through all of this for useful information...sniffing alcohol pads when they flush your port might help you not puke.  More importantly, if you're a cancer patient you just read through all of this looking for useful information, the alcohol pad tip is useful, but this one is more important:

Listen to what your body is telling you and stop being an arrogant stupidhead who thinks they can somehow will themselves into being impervious to the effects of their treatment.  You'll end up saving yourself some humiliation and discomfort.

Tales of Triumph:

You know who I haven't told you about lately?

Remember me?

It's hard to believe that Avery Hope will be ONE YEAR OLD next week.  It's hard to believe that baby was on board when I started my first treatment but it's true.  She is doing great!  She's a chubby little trouble maker as you can see.  I'm amazed that just one year ago she couldn't eat, maintain her temperature, or BREATHE on her own.  Look:

Chubby Trouble Maker

A year ago she couldn't eat or breathe...now she can rifle through the changing table:

Breathing, obviously eating well, and STANDING UP

So, anyhoo, we keep plugging away, taking each day as it comes.  We appreciate your prayers so much.  Sometimes, truth be told, I feel pretty low, but I continue to be amazed at the peace and joy that can underlie even the yuckiest of circumstances.  This situation stinks, but we are so incredibly blessed and surrounded by so much love.

How can I feel low for long when one of my oldest and dearest friends, Joelle, who is a doctor, wife, and mother of two small children is TRAINING FOR A MARATHON--THE MARTHON--the New York City Marathon actually, in my honor, to raise money for the  The Leukemia & Lymphoma Society’s (LLS) Team in Training.  Please consider supporting her.  If she reaches her goal by August 1st, she and her husband will be donating $500 to Roswell Park Cancer Institute, which is where I'm being treated.  Isn't she amazing?   She could lose a toenail.  Do you know that sometimes happens to marathon runners?  *JOELLE*  Please please do not lose a toenail.  I can't have that on my conscience.

In Honor Of My Grandma

Doris Rexford 

On June 1st, this world lost a Great Lady.  Capital G.  Capital L.  My maternal grandmother, Doris Rexford, was just simply a Great Lady.  I cannot possibly do her any justice here, but I want to honor her in some way, so I'm going to tell you a bit about her.  She was a woman whose life, if I were to list all the events, the chronology, the hardships and the accomplishments, sounds like a movie.  I can't do that here, but I need to share a little with you, because she was a Great Lady.

She was born in Exeter, Devonshire, England in 1928.  Her town was targeted by 18 Nazi air raids during WWII and she told us many times about the metal cage they had in their home so that when there was an air raid they could climb inside and be protected in case their home was hit and collapsed on them.  My grandma was known to say "England is my homeland, but America is my country".  She came to the United States at age 17(!) as a war bride, knowing no one but her new husband.  She went from a modern, suburban life in England as essentially a schoolgirl in her parents' home to life as a wife and very soon a young mother in a very rural home with no indoor plumbing.  When she would wash her first daughter's diapers in the winter she would have to hang them on a line indoors and they would freeze.  Solid.  She kept her home immaculate.  IMMACULATE as in it looks like it was hermetically sealed in 1955 when it was built and nobody ever crossed the threshold again.  But people did cross the threshold.  She raised 5 children in that home and welcomed 15 grandchildren and 20(and counting) great grandchildren.  She just never stopped.  She never stopped cooking and cleaning and gardening and learning.  She was a force.

She followed the news very closely and always knew the ins and out of everything that was going on here in the US as well as at home in England.  She kept a close eye on the Weather Channel and was quick with a phone call whenever something serious was going to hit an area of the country where one of her grandchildren had settled.  She watched the financial news and was extremely well informed about what it all meant for her savings, which she recorded meticulously.

One of my favorite stories about my Grandma was a time that I drove her to the bank.  I can't remember now exactly when it was but I think it was about 9 years ago.  Anyway, I drove her to the bank because her CD's were coming due and she had to do some stuff with interest rates and who knows what.  I'll tell you who knew what--she knew what.  Oh my goodness.  She came in there, quite elderly at that point, unable to see particularly well, with all of her calculations written on the back of an envelope.  She had calculated what the new rate on her CD should be based on the financial news and "what Mr. Greenspan said".

Have you ever seen those posters at the bank where they try to sell you CD's and they write interest rates on it with a sharpie to make you think they're on top of things?  It turns out they're not that on top of things, but Grandma sure was.  We were ushered into the cubicle of a poor young man who had no clue who he was dealing with.  My grandmother began to discuss the business she had to complete and he began telling her that the rate on the poster was the rate that they would be using for this upcoming term on her CD's, and that Grandma could expect a return of x amount.  Well, that did not match what was on the envelope or what Mr. Greenspan had to say...so...there was work to be done.

I was getting a bit nervous at this point because honestly I didn't understand a word of what they were discussing and my Grandma's calculations on the envelope were out to the 3rd decimal place and I hate math and I'm the kind of rube who would believe that the numbers on a poster at the bank are accurate.  I had no clue who was right.  I had no clue how this would play out, and I had never really observed my Grandma like this, out in the world.  Grandma walked him through her numbers, which he conceded were correct, but could not be used until somesuch day.  So, Grandma very politely and patiently walked him through it again because she literally knew his business better than he did.  At this point the poor guy didn't know whether he was coming or going.  Grandma sensed this and reached across the desk and put her hand on his arm and said:  "Am I troubling you Derrick?" and I had to stifle a fit of giggles because it all seemed so hilarious.  At some point a manager showed up and after some more back and forth guess what? Grandma and her envelope won.  After a short and very polite speech about what people's unbridled borrowing is doing to the savers in this country Grandma was on her way with her CD's all squared away.

I will never forget that day for so many reasons.  I knew my Grandma was really smart, everyone in her family was and you knew just from talking to her that she was sharp, but to see that kind of knowledge collected and calculated all on her own on the back of an envelope and used to school a bank--it was breathtaking.  Even more breathtaking was the incredible, unshakable grace and politeness with which the entire matter was handled.  Many people in her situation would have given up, and many more would have lost their cool and been loud or obnoxious to try to get their point across.  She was just simply unflappable and polite.  I still chuckle to myself everytime I think of the phrase "Am I troubling you Derrick?".  Poor guy had no idea what he was in for.

I want to tell you so much about her, about how she walked everywhere, even to get her groceries into her seventies and golfed for years.  She'd get up at 5am to play and then walk home and get right to work making sure everything in her home was just so.  When my Mom had her 4th and 5th babies and was working full time she would come over and clean the house and make dinner during the day and when we'd walk in the door we knew immediately that she'd been there because everything was perfect.  If she was still there when we got home we would all fight over who went in the door first because she was starting to lose her hearing and we would always inadvertently scare her which we hated to do.  We started coming in the door and SLAMMING it shut and then SLAMMING our backpacks onto the floor while kicking off our shoes and TALKING VERY LOUDLY because she was not only hard of hearing but was often vacuuming something to kingdom come that you didn't even know could or should be vacuumed.  We still ended up scaring her most of the time, but she was always happy to see us.

That's the thing I really want you to know about her.  She had 5 children, 15 grandchildren, and 20 great grandchildren but she had a way of saying your name and talking to you and about you that made you feel like you were the only one.  She was just so proud of every little thing each of us did and always made sure we knew what all the cousins were up to.  Somehow she always made you feel so incredibly important and special.  A lot of it was all the normal stuff of growing up, but as long as you were trying, that was worth reporting.  She just loved us, and we all felt it.  People always worry about there being enough love in a big family, but my Grandma is proof that there is always enough love.

When my own family started growing beyond what society considers decent, my grandma once grabbed my hand in between both of hers told me "Don't let anyone make you feel badly about these children.  I know it's hard now.  It's so hard, but someday they won't need you anymore and you will be surrounded by such love, Nella.  You will be surrounded by so much love."

She was surrounded by so much love.  My Mom and her siblings cared for my Grandma so beautifully and so generously that she was able to live independently in her own home until the very end.  Doris Rexford was a force to the very last moment, weeding her garden and getting it just so.

Thank you Grandma R, for surrounding US with so much love.  If I am a quarter the woman you were, I'll have lived a life I can be proud of.

7 Quick Takes Volume Two: Sheepish Edition

Returning sheepishly to 7 quick takes after a blaze of posting glory, or at least posting.  I'm sorry I've been maintaining radio silence.  There is just no rest for the weary.  So without further ado:

1.  

Avery was finally baptised!  I had wanted to have her baptised in the NICU, but I didn't because I didn't want people to think I was crazy which I regret, but I'm glad it's done now.  Sarah the weirdo and her husband are Avery's godparents which makes her pretty darn blessed.  I don't think you can be pretty darn blessed, but if you can, Avery is.

Anna isn't really that short but her new thing is not standing up straight for pictures.

The gown Avery is wearing is a family heirloom.  My Dad wore it to his baptism 62 years ago.  I wore it, my 4 siblings wore it, and all of my 6 children have worn it.  It is very beautiful and at this point very fragile.  It's also made of a silk satin and covered in lace because boy or girl, italians will dress for the occasion.  It has a slip, a gown, and a coat, it also has a hat so the baby won't catcha the draft, but the hat is in rough shape after all these years.  Let me tell you, a baby wrapped in 3 layers of silk satin is so slippery it's like trying to baptize a greased pig.  But what a beautiful little piggy!

2.  

I've been exercising regularly, probably more than I have since college, because health and stuff.  I've been taking PIYO(combination pilates/yoga), swimming laps 2 or 3 times a week, and yesterday I took an interval training class.  I'm able to do that without breaking the bank because we belong to our local YMCA.  There is nothing glamorous about the Y, certainly nothing glamorous about our little Y that could, but we really love it.  It really is such an awesome resource for families.  The membership is affordable and if you're a member you get a break on the fees for all of the kids sports and classes on top of tons of free group exercise, use of the pool, I could go on.  Really, if you're looking for a family friendly alternative to a traditional gym you must check out your local Y.

3.  

Yesterday I walked into my bathroom to find that someone had shaved (shaven?) one of my make up brushes with their Dad's razor.  I don't know who it was but I have a pretty good idea.  I really thought I'd seen it all, or most of it.  Some of you are saying "you already posted this on facebook".  I know, but, THEY SHAVED MY MAKEUP BRUSH.

4.  

Please keep praying for Ben:

Pray for Ben and his family.

and Ava:

Pray for Ava and her family.

Could you also pray for my friend Sweetie?  She just had a double masectomy and is on the road to recovery.  Please pray for her continued healing.

5.  

You know that saying about resting on one's laurels?  Some people don't want to rest on theirs, but I'd like to make a little nest out of mine, scant though they may be, and just snuggle up in there and take a nap.  It turns out though, that there is no rest for the weary my friends.  The reason this blog has been languishing of late is that I'm working on a BIG project.  It's totally nuts and it is something that grown ups do, the competent kind, not kooks like me.  Some dear friends of mine, dear friends who were there that night at Wegmans, and I are opening a schoolish.  What is a schoolish?  It's really called a Learning Center and it's a place that offers History, Literature, Science, and Latin for 2 half days a week.  There will also be electives like art and music in the afternoon.  Why a schoolish, I mean Learning Center?  It's a way to have the best of homeschooling and traditional school.  

I still can't believe this is happening but it is happening because we are making it happen.  We're in the midst of incorporating, filing our 501c3, choosing curriculum, and on and on.  My Dad used to say that he always felt the same inside even though he grew older on the outside and I've always felt that way too, but I've never felt it as keenly as when I was sitting across a conference room table from our attorney discussing our venture.  I kept expecting her to suddenly say: "Wait just a minute young lady...WHERE IS YOUR MOTHER?" but she didn't.  This isn't what I expected to be doing a little more than 5 months after finishing chemo, but I am.  It's taking up most of my free time right now.

6.  

April 2nd was the anniversary of when my neck got filleted to get my lymph node out.  A year.  I can't believe it.  The 16th will be 6! months since my last Chemo.  I had a CT scan last week and I go to see the oncologist today so she can tell me to my face that I'm still in remission.  Could you pray for me?  I get a bit of anxiety every time I have to go there.

7.  

I'm sure you haven't figured out from this blog, but Jennifer Fulwiler is my favorite blogger ever.  She is the hostess of these here quick takes and she has a book coming out about her conversion from lifelong atheism to Catholicism.  It is recommended by Dean Koontz and Gretchen Rubin people!  And then, AND THEN! she was all like, oh, I think since I just wrote an awesome life changing book I'll write another awesome life changing book to go with it.  Right now if you pre-order her memoir: "Something Other Than God: How I Passionately Sought Happiness And Accidentally Found It", you can get a free e-book "The Family First Creative: 42 Tips For Following Your Dreams While Putting Your Family First".

What are you waiting for?  Do you hate learning important stuff?

I just wrote this whole thing under toddler attack so sorry for formatting etc...Go see the amazing Jen for more, better written quick takes!

When You Assume...

That's me up there after those last two posts.

Get it?  I made an ass, not really out of you, but definitely out of me.  I ended up dangling from a metaphorical cart because I broke a cardinal rule of writing and I assumed you knew what was in my head without me communicating it as clearly as possible.

When I wrote the What NOT To Say To Someone Facing a Health Crisis I made some fatal mistakes.  I mentioned that each person's response to facing a health crisis will be different and that is so important to remember and I just did not emphasize that enough.  In fact, each individual response will be SO different that I followed up with a post about what you SHOULD do that effectively contradicted the first one.  I heard from dear dear friends who read the NOT post and felt like they had messed up somehow and that could not be far enough from the truth.  So I'm going to try to filter the mud I mixed up over the last 2 day and communicate things a bit more effectively.  

Clarification #1

I wrote those posts with a certain group of people in mind.  I guess I was envisioning that advice going to the friend/acquaintance on the periphery who was moved to act but was not necessarily close enough to the patient or family to be able to easily identify their needs.  What I realize now is that a) I didn't make that clear and 2) I didn't account for the extrovert-y types who don't really have this "acquaintance" category.  

Clarification #2

I originally wrote those posts remembering certain incidents where I encountered someone who, while still meaning well, lacked appropriate boundaries or was just so codependent that they didn't realize that they were making my illness about them.  These are a small minority of the interactions I had during my illness but they were the most draining and traumatic.  I generalized those to inform all of my advice and didn't emphasize that the majority of people who would want a list of do's and don'ts aren't the kind of people who would ever make it about them anyway.  I didn't think that through completely which created a situation where when I listed "I can't imagine" and "How are you?" as things you shouldn't say I alienated a lot of well meaning people because I wasn't clear enough about what I was trying to say.  

So What Were You Trying To Say?

I'd like to clarify my stance on "How are you?" and "I can't imagine".  These are likely ok for most people but understand, if you ask how someone is and they say "Fine", don't push.  Unless you are very very close to that person please respect whatever boundaries they are setting at that time.  Don't say "I can't imagine" and then fish and fish for "it's not that bad", or if you get "it's not as bad as it seems" or some such don't push and push for all the gory details.  You wouldn't put a veteran on the spot about what they've seen and gone through if you are not extremely close to them.  I'm not comparing cancer to war, but when you have cancer or watch a loved one go through it you don't go to the hospital so they can feed you Skittles while they braid your hair.  It is traumatic, it is grueling, and it's hard to discuss every single time you have a conversation.  So express concern, ask after their wellbeing, but don't push a cancer patient or their caregiver or someone else going through a crisis to make you into their confidant or savior.  I hope this helps clarify things a bit.

Ninety eight percent of the people we've encountered on the road to recovery have been nothing but generous and loving and wonderful.  One other thing I'd like you all to remember is that when someone is diagnosed with cancer, or loses a child, or faces some other awful crisis, they do not become a character in a movie.  They stay the same unique, flawed child of God they were before, so the same hang-ups, impulses, and baggage they had before the crisis will inform the way they receive your efforts.  The human spirit combined with the grace of God can meet immense challenges in ways that are incredible, this is true.  What is also true is that extreme hardship brings out all of our personal protective measures, so using me as an example, everything in me was screaming to get in the bunker and hide all the while I had to be out at appointments and accepting people into my home more than I ever had in my adult life.  This colored my interactions with everyone all the time so that there were times that well meaning conversations were just too much at that particular moment.  So if you do reach out to someone and it doesn't go how you thought it would, please have mercy, they are bringing so much stress to every interaction and that is going to cause some awkwardness from time to time.

Finally, I want you to know that I remember what it's like to be on the other side.  To hear about a situation that is (here I go contradicting myself) unimaginable and to short circuit at the enormity of it and your powerlessness to do what you most want--which is to stop it.  I know what it's like to want that person to know how deeply you feel for them and what it's like to realize nothing you say seems like it can do much good.  When you approach someone with love and prayer and your very best intentions, you will bless them.

 You will not take it away.  You cannot take it away.  

You WILL still bless them and lift them up.  

Back to you dear readers...help me sort this out...is that any clearer?

7 Quick Takes: What You SHOULD Do For Someone Facing a Health Crisis

5 posts down, 2 to go!  

I'm just chugging along and joining all the links ups I've been telling myself I should join and then never got around to it.  Today I'm doing a double Fulwiler.  I'm pretty sure that's what it's called in the biz.  I'm doing 7 posts in 7 days AND since it's Friday I'm also doing:

Also hosted by Jen Fulwiler

Yesterday I talked about what you should NOT say to someone facing a health crisis.  Thank you everyone who contributed to the conversation.  I mentioned in that post that everyone faces difficulties differently and that that list was from my perspective.  Well, after talking to my friend Sarah, you'll be surprised to see that 2 of my don'ts are also on my list of dos.

In order for this to make sense you need to know that my friend Sarah is a complete weirdo, otherwise known as an Extrovert.  She took an MBTI personality quiz just so I could be 100% accurate on my blog because that's what good friends do, waste time on the internet for someone else's blog.  Anyway, for reference, Sarah is an ESFJ and I am an INFP which means we are completely opposite except that we both favor Feeling over Thinking.  All that to say, we are so so different from each other that our running joke is to call each other "Weirdo" and ask "How are we friends?", but we are dear dear friends.  Anyhoo, Sarah told me today that she experiences "How are you?" and "I can't imagine" totally differently than what I described, and Sarah has faced some true hardship in her life.  So, to make things really confusing, here are the things you SHOULD say or do for someone facing a health crisis:


1.  Say "I can't imagine."

Confusing right?  I know.  I'm going to quote Sarah now (with her permission):

I know I say that one but I don't feel like I say it in a way that is looking to be comforted.  I say it in a "I have never gone through what you have been through so I can't say that I understand so I am not going to pretend I do."...I feel like it is annoying when someone acts like they understand your situation when they really don't.

I get what Sarah is saying here.  I don't think anyone who says this is purposefully trying to make the patient or caregiver they are talking to comfort them.  I know they are trying the exact opposite, and I stand corrected, because for some it really is a sentiment they appreciate hearing.  Sarah went on to say that when people expressed this sentiment to her it made her feel like she wasn't carrying her difficulties alone.  I guess a good policy is to reflect on what you know about the person who's facing the health crisis.  If you don't know them, my instinct is to just stick with "I'm sorry you're going through this".


2.  Ask "How are you?"

See above.  I really don't know exactly what to think of this.  It is so foreign to my personal instincts, but I do know Sarah and I know that if she were going through something difficult this would truly be an important way to love and support her.  If Sarah is this way, I'm sure there are many others like her who read my advice yesterday and were like "What the heck?".

I think that after reflecting on reasons you should or should not say "I can't imagine." and "How are you?" the conclusion I've come to is this:  if you know this person well, do what you think best fits their personality and what you know about them and that you aren't saying one of these things because it's what you would want or because it's what you want in that moment.  If your goal is to love that person, even if your foot ends up in your mouth, you are still doing the right thing.  So now, on to the rest of the list of things you should do:


3.  Pray

I know that, even if you are a believer, there are times when praying doesn't seem like enough.  There are times that "I'm praying for you." sounds trite and like something that people just say.  Please, please, please, if you do nothing else, pray for their healing, pray for guidance, pray for their peace of mind, pray for comfort.  Please pray.  I cannot overstate the power of your prayers.  I cannot overstate the tangible support and relief your prayers offer that no other gesture or statement can even touch.  If you are not a believer, when you tell someone you are thinking of them, that you are sending love and light or good vibes, or a myriad of other similar sentiments, please do not doubt the efficacy of these offerings.  Not only do these prayers and similar offerings lift up the recipient at that moment with their love, they truly have lasting effects.  There is no real way for me to convey it except to say that up until my cancer diagnosis my belief in the power of prayer was largely on blind faith, but now, having walked through that valley, "I was blind but now I see".  "The power of prayer" is not a catchy phrase, it is the most egregious understatement of all time.  In fact, prayers and well wishes and good intentions are the reason that "you can't imagine", because when you try to imagine it you are not factoring in the effects of the very real prayers and grace you will benefit from when you are in the thick of it.  It is beyond human understanding.  So please, if you do absolutely nothing else, pray pray pray and rest assured you have contributed the single most important thing you have.


4.  Reach Out

If you hear that someone you know is facing a crisis, even if you haven't spoken to them in a very long time, even if you only know each other through friends of friends, even if you've never actually met them in real life--if you feel moved to reach out to them to offer encouragement, just do it.  Don't worry that it will be weird, or awkward, or intruding.  I know that after all I've said about being private and introverted and concerned about burdening people this sounds counter-intuitive, but so many people reached out to me in big and little ways after many years and over many miles and every single time it was so uplifting.  Send a card, a note, a Facebook message, an email, a tweet, whatever.  Don't feel weird.  I felt so loved and supported and I was delighted every time someone reached out to me to say "I'm thinking of you, I'm praying for you, I'm here for you.".

Let's get practical, practical...

I should be banned from Google Images.  Moving on.

5.  Meals

Who doesn't love food?  The Terrorists.  No really, this is a 1/2 brainer.  I was going to say no brainer but there are a few things you should keep in mind to make this as easy and helpful as possible.  First of all, be sure you know of any dietary restrictions.  After you know what the family can and cannot eat, it's great to coordinate with others as much as possible.  When the enormity of our situation became apparent, some dear friends (including the previously mentioned Sarah), got together to plan amongst themselves how they could best serve our family.  The idea they came up with was genius.  Very often when a Mom has a baby, her friends and others around her will put together a calendar using a program like Care Calendar.  This is a great option, but when a family is facing something that will last more than a month or two, it can become really difficult to manage continuous, consistent help no matter how badly you want to.  If you have young kids and all of your friends do, which is our situation, no matter how much you'd like to think you could keep up the pace of providing meals for months on end, it is really difficult.  My super smart friends figured out that if everyone who wanted to contribute meals made a frozen meal or two and dropped them at the homes of a few "Meal Coordinators" who had deep freezers,  many more people could contribute consistently over the long term.  It eliminated the hassle of trying to get a meal ready on a certain day for a certain time when lets face it, it's hard to do that for your own family most of the time.  It made it possible that on a day when things were going well in one of my friends homes and things were clicking along they could double or triple the recipe they were already making and freeze it and voila, they fed our family for a few nights instead of just one. It eliminated the hassle of moms with young families having to pile everyone into the car during the crazy dinner hour.  It also offered more privacy to my family during a time when things were constantly disrupted.  Once a week one of my "Meal Coordinator" friends would email me and say "How many meals do you want this week?" and then would drop off what we needed.  That way, if Michael was home and wanted to cook (because he is amazing like that), he could do that and we could use the meals when it was best for us without worrying about anything going to waste.  What if you want to drop a fresh meal?  What a treat!  That is always welcome too.  

What if you're far away?  Well, one of the most humbling gestures I received was from a dear lady I used to cheer with in college who now lives far from me.  I was not always very kind to this loving soul.  It shames me to say that.  She got in touch with another dear friend who is still near me and arranged to have a whole Panera Bread lunch sent to me so that I wouldn't have to worry about getting lunch around for the kids one afternoon.  I can't begin to express what a fun, generous blessing this was to receive.  So if you're far away, send something!  We also received edible arrangements and grocery store gift cards and grocery bags full of staples and all were such blessings.  All of these things lightened our load and helped us to focus more on the task of getting better and to focus on each other rather than the practical aspects of feeding our family.

6.  Hire Someone To Do Housecleaning

I'm not very adept with PicMonkey yet.  PS, this is not really my house but all Moms know how fast this could happen.

The other amazing thing that Weirdo Sarah (xoxo) arranged for us was weekly housecleaning.  You read that right.  She collected money and arranged for a very adorable, very sweet, very efficient young lady to come to our house for 3 hours every week to clean up.  In those three hours she picked up, vacuumed and washed our downstairs floors (our entire downstairs is tile and hardwood), cleaned the downstairs 1/2 bath and the kids full bathroom upstairs, vacuumed the stairs and upstairs hallway, wiped down my kitchen cabinets and island bar stools.  If it had not been for her our house really would have looked like that picture up there.  Moms out there I know you feel me.  Even if you can't manage to get together funds for a weekly cleaning like this, even if it's just one time, it is such a blessing.  You don't need to hire a professional service, find a college or high school student.  Ask around at your church, your local Newman Center, or a local homeschool group.  This kind of help isn't always easy to accept, but it is vital, especially when a young family is facing a crisis.  

7.  Expect Nothing In Return

The kind of whirlwind that ensues when you or a loved one gets a life changing diagnosis is all consuming.  Sometimes you will send a note or an email or a gift and hear nothing.  I'm still haunted by times I've not responded to kindness in a timely manner.  In my case the reason for this is two fold, first, because when part of the time you are not capable of much of anything but the very bare minimum (at times the bare minimum being opening your eyes) and the rest of the time you're playing catch up and trying to make things slightly normal for the rest of your family a LOT falls through the cracks and you don't want it to be that way.  The other reason is that just like you don't know what to say and it all seems like not enough, there are no words this side of heaven that can adequately express this level of gratitude.  If I could lay prostrate on the ground kissing the feet of every person who has extended their love, generosity, and support to me and my family during this time and I could do it without it being The Most Awkward Thank You Of All Time I would do it and it would not come close to showing my most humble, passionate gratitude.  I want to do big things for every person who has loved us through this in ways big and small and yet there is nothing big enough.  It is paralyzing.  So, if you say something or do something and the recipient doesn't respond how you expected, have mercy.

Also, you may say something that is totally kind, right, loving, and perfectly suited to the persons needs and they might be having a tough day or just be overcome in that moment by what they are facing and they might cry, or be mad, or ignore you, and it will have nothing to do with you.  They are going through a difficult time and sometimes when faced with adversity we are very very strong, and sometimes we just lose our damn minds.  So please, have mercy.    

I hope this list is a bit helpful.  As I wrote this I realized that those of us who have faced a health crisis or other significant hardship and those of you who haven't are all in the same boat.  We each want to express feelings and intentions to the other that words cannot adequately communicate.  When someone faces an illness or other crisis we want to help so badly, we want it to go away, we can't stand the thought of someone facing it and it is scary to think it whatever it is could really happen so close to us.  I get it.  I remember.  In fact, even now, having walked through my own outlandish difficulty, I feel powerless to do what I really want to do, which is take it from them--to make it disappear in an instant.  We all want to know what the perfect thing is to say or do and I started this list with the intention of tying it all up with a bow for you, but I'm reminded now of why we all short circuit when we hear of another's suffering--it is because we are powerless to stop it and anything short of stopping it seems puny and insignificant.  Well, if you get nothing else from this list, please take away this:  you can't take it away, but your efforts no matter how imperfect, are not insignificant.  

Love is never insignificant.

These takes were not quick.  Back to you readers...what would you like to add?

You. GUYS!!!!!

I'm getting Chemo today.  My hair is falling out.  But I don't care because today we found out my scans were clear.  Which means...

REMISSION!!!!

I have one more treatment in two weeks and some scans and blah blah healthcare blah but I'm almost done.  I'm almost done.  I'M ALMOST DONE!!!!!

Dude.  I know!

Thank you for your prayers.  Thank you for your support.  Thank you for your encouragement. 

Thank you Jesus.

I have to go get the Chemo now to make sure no biological rock is left unturned but I just HAD to tell you.  Because seriously, REMISSION!!!

Home Sweet Home

*These are not blog quality photos.  They are backlit photos from my phone because that's just how we do.  

This past Wednesday we finally brought Avery home after 5 weeks in the NICU.  Her homecoming was delayed twice before we were finally able to pack her up and bring her home to her flock of adoring fans.

It's amazing how someone so small can command such undivided attention.

Michael and I went to get her and she was greeted by many squeals of excitement and hands reaching out to touch her and arms reaching out to hold her and just so so much love.

From Left to Right:  Madeleine, Anna, Owen, Avery, and Julia (Adam not pictured, he doesn't feel he owes you an explanation for his absence.)

She became briefly acquainted with each of her siblings and had a nice snuggle with each of them.  These poor kids have been waiting FOREVER to finally hold their sister.

Madeleine holding Avery, Anna on the Right

Anna and Avery

Julia and Avery, the two littlest girls

Owen and Avery

Thank you so much for all of your prayers for our sweet girl!  We are so grateful.  She is fitting right in and we can't imagine life without her.  Some of you maybe wondering why there are no pictures of Adam.  He was napping when she came home and right now all of his interactions with her require two adults to manage because he JUST LOVES HER SO MUCH!!!!  It's scary and beautiful all at once.  At some point I'll try to get a picture of the two of them together, but it might be a while before that's possible.

Like A Toddler With A String Cheese

Yesterday Adam woke up from his nap in a mood.  You know when toddlers wake up and they decide they want everything and nothing simultaneously RIGHT NOW?  It was that kind of mood.  I picked him up out of his crib and he was doing that whiny cry and he put his head on my shoulder.  For 2 seconds.  Then he started the back arch gravity drop but not the full back arch gravity drop.  He did the initiation of the back arch gravity drop that causes you as an experienced parent to start to put them down so they can toddle merrily on their way.  Wrong move idiot.

Judge Judy saw this next part coming from a mile away.

 Responding to the back arch gravity drop cue resulted in a blood curdling "NOOOOO!!!!!  Mooooommmmommmmm!!!!".  So this is how we're going to play it.  I reversed course and scooted him back up the 1/2 a millimeter I had shifted him down because when you start playing this game 2 year olds become like highly sensitive scientific equipment capable of detecting phenomena at the molecular level.  This whole interaction may not have even occurred on any physically perceptible level, it happened so fast.  As soon as I scooted him back up he started the back arch gravity drop and around we went.  So I did what any veteran parent does who wants to teach their children to deal with their unpleasant emotions in a functional manner...I brought him downstairs and tried to distract him with a snack.  Future food issues anyone?  As long as they come with a side of cheese.   In Adam's case, string cheese.  Lately string cheese has been Adam's fave.  I won't even begin to tell you the rate at which he can put those down.

So we went to the fridge and he freaked out over opening the fridge himself.  So I tried to put him down so he could open it himself.  So he freaked out over me trying to put him down and did the super abs thing where they lift their feet higher and higher as you lower their butt closer and closer to the floor.

Like this with less attention to form and more rage.

So I opened the fridge and got the cheese and tried to set him down to open it so he freaked out and did the abs thing again.  So I just handed him the string cheese because sometimes when he's feeling reasonable he likes to try to open things himself and he tries for a short time and then he asks me to do it for him.  I figured it would just go like that.  Seriously.  Idiot.  Hold on to your hats people, it did not go like that.

Adam would put the string cheese in my face and yell: "CHISS!" which I would interpret as "Mother, please open this string cheese." and so I would start to take it from him to open it "NOOOOOOOOOOO!!!!".  sigh.  "CHISS!" Mommy attempts to open it.  "NOOOOOOOO!" SIGH.  "CHISS!!!!!"  Mommy attempts to open it.  "NOOOOOOOO!!!!" On and on and on and on and on.  Until he was in college.  Actually for like 10-15 minutes, I'm not sure.  Did I mention my Mom was watching this whole thing unfold?  For some people Karma is a b****.  For my Mom Karma is a rainbow butterfly who hands out all the candy you want.  Which is what she deserves.  She observed this whole scene with a mixture of pity and amusement, with tears in her eyes while trying to stifle a laugh.  You know what?  Right on, Mom.  I get you.  I'm sorry for every time I did that to you.  You are a saint.  A saint who gets to taste the sweet sweet nectar of revenge but takes pity on her former attacker.

What is this about?  Are you going to turn into one of those Mom bloggers who're all like "Toddlers are unreasonable jerks woe is me?  No, I won't, because it hit me last night that I am God's unreasonable toddler.  Look at this girl:

She's wearing a T-shirt and using a Pacifier!

Avery continues to grow and progress every day.  Just like I've been begging God for her to do.  She is doing really well.  In the next few days she will be moving to an open crib and she has reached the 5lb mark.  She is beginning to learn to feed from a bottle and doing so well with it she gets to try 4 times a day.  They are beginning the process of removing her from respiratory support by reducing the flow in her nasal cannula and just today they stopped giving her caffeine.  Which as an aside: I find hilarious.  Premature infants sometimes need caffeine to help them remember to breathe.  You and me both, Avery.

When they took her off of the ventilator and switched her to the air flow in the nasal cannula it was scary because her respiratory rate on the monitor didn't look perfect and predictable like a robot anymore.  It looked variable like all human activities do.  It went fast and then slow and then sometimes she would just be like "meh, breathing is dumb" and take a short break and I would FREAK OUT and the nurses would assure me everything was fine.  I'm sorry but there is nothing fine about that and I don't care how fine it is.  It's scary.  But she continues to handle it well and they continue to wean her off of support and all my prayers are being answered.

I begged God to help my little girl outgrow those machines when she really wasn't ready (CHISS!!!), and now that she needs them less and less everyday I'm getting scared about the idea of her doing it all on her own (NNNOOOOOOO!!!!).  I begged God to be able to bring her home (CHISS!!!) and now that we are moving closer to that goal I'm not so sure I'm ready (NNNNNOOOOOO!!!!!!).  Poor God.  It's a good thing he's so patient and loving.  Oh.  Right.  He is patience and love.

Adam and I did the string cheese dance for awhile.  He just hadn't felt right since he woke up from his nap.  Maybe the girls playing woke him up before he was ready, maybe he was teething, maybe his bottom was sore, maybe he just had a bunch of big feelings and didn't know what to do with them.  I held him for a long time and offered to open that damn cheese for what felt like a very long time.  Eventually, between sitting in my lap and seeing that Mom would respond with love and patience (on the outside) no matter what, Adam calmed down.  Eventually he toddled off to entertain himself for awhile.

I haven't felt right for a while and I've had big feelings I didn't know what to do with.  I asked God for things and when they seem to start happening I get more feelings I don't know what to do with.  God is so patient with me.  He loves me even when I start to turn from the very things I asked for.  He loves me even though my first instinct when things happen that I don't understand is "Where are you God?".  He knows we will do this dance until the day I die, and He sits with me and is present with me anyway.  He loves His unreasonable toddler.