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Hospice: An Interview, Part 3

Thoughts on marriage and cancer…

As we’ve emailed back and forth, Mandy and Jay and I have talked about how “cancer” is definitely something woven throughout their love story and how it’s affected choices they have made as it relates to their marriage, friendship, and commitment to one another. Today’s interview is a glimpse into the part where “in sickness and in health” has been put to the test. How do marriages survive hardship, disappointment and tragedy? Can they make it through?! The wisdom and insight Mandy and Jay share is priceless advice whether a terminal illness is part of the recipe or not! We’d all be the wiser for putting into practice some of the examples of unconditional love these guys display. [Read more…]

Hospice: An Interview, Part 2

On Tuesday, my sweet doctor made the call we didn’t want to make – she called hospice. Within a few hours of returning home, hospice was calling us. We scheduled the admission for Thursday. My case nurse and an administrator arrived at our home with sweet smiles and soft spirits. At the kitchen tablewhere all important discussions are required to take place – we talked about the ins and outs of all things hospice.” – Mandy Smith, from her blog post on August 19th, 2016

This is what true love looks like on some days.

This is what true love looks like on some days.

Merriam-Webster defines hospice as:

  • : a place that provides care for people who are dying

  • : a place where travelers can stay; especially : an inn kept by people in a religious organization

  • :  a facility or program designed to provide a caring environment for meeting the physical and emotional needs of the terminally ill

The word “travelers” is truly sacred here as I am reminded we are on a journey, and Earth is one of the stops on the itinerary. Personally, my experience with hospice caregivers is, if they aren’t angels among us, they are indeed miracle workers who somehow breathe life and nurture love into end of life situations. The depth of emotional care hospice caregivers provide is so profound, it’s not just for the patient but for all who are affected by the death of their loved one, too. I wonder why health care in America doesn’t first start out with them (maybe under an alias title without the premise of nearing death), solely for the miraculous nurturing they offer rather than all the scary tests and what if’s most people face in routine medicine? [Read more…]

Hospice: An Interview, Part 1

My dream job, like if I could do ANYTHING on this earth, is to hear the story of every person I come in contact with…no one is a stranger to me and everyone matters. It would be kind of like Brandon Stanton, founder of HONY, except I’d just be myself, obviously, and it would be humans of wherever (HOW?), asking questions and listening, even when, and maybe especially when, it’s hard. We would exchange stories, and in doing so, further make known God’s love, first because of what Jesus did for mankind, second because we defied the darkness and went ahead and shared our stories, all the messes included.

I always say if a smarter thought pops into your head than you could think of, that was God talking. Well, over the last few years that’s been the case with a friend from high school and his wife. I will be driving along and their names or faces will come to mind, so I pray. Some of those times I’ve reached out to his wife to just let her know she was on my heart. So, when I found myself driving around our new city of Nashville recently, coming up with full interview questions for them, I first thought, “Well, maybe Jay and Mandy don’t really want to talk about their journey, or her cancer diagnosis, or the fact that hospice is just around the bend…” Then I remembered my dad’s words, “It never hurts to ask,” and so I reached out to them… [Read more…]

On Death and Living: A Series, Part 2

Two things about death that, I believe conjures, festers, fosters, and instigates fear, are the HOW and WHEN…sometimes to the extent of paralysis when it comes to LIVING.

If we have a foundational understanding that every single person on this earth is born and dies, then the question of WHO is already established: Everyone…WE will all die

So, I guess that also answers the WHAT question…

WHERE also has relevance, but the HOW and WHEN are where we can get really stuck, especially as it pertains to faith and perspective, and it’s what I want to hash out here a bit.

“She was too young…he had so much going for him…the other person was drunk…it happened in battle…they were in an accident…he was stillborn…she took her own life…it happened in a shooting…it was a hate crime…he had a disease…there were complications…she was old…”

We live and die surrounded by circumstance. Depending on where we are born and to whom we are born, our lives look differently. Nationality, race, affluence, power, culture, disease, religion, poverty, acceptance, love, neglect, genetics, charity, generosity…so many things influence our lives, especially the way we think and filter the day-to-day, our interactions with God, self, and others. These circumstances can also influence the way we die, unfortunately. As a stereotype, especially in the First World, a pain-free life and death, preferably in our sleep and around the age of 90, with plenty of money to leave to the next generation, is the ideal or dream, almost to the point of entitlement…as if we actually know what is best, almost as if we believe we are invincible…as if we can stave off anything, namely, death and dying, because we have certain inalienable rights?

This is really hard to swallow…the part where we aren’t in control of everything.

The book of Job is quite telling when it comes to the battle over our lives. The ugly depths to which the Enemy will go to deter our eyes, hearts, faith, trust, perspective, and relationship with a good, loving God, further festering the doubt planted in the Garden, is quite obscene, really. In the Garden the Enemy tempted us to question whether God was telling us the truth about dying at all. In Job, the Devil approaches God about mankind, launching first an attack on Job’s (or our) possessions or the things we think we own or can control, and the second part of the attack in the form of trying to steal Job’s health. Some might wonder if God was playing roulette with Job and his life, but I wonder if rather God had an eternal perspective, saw a bigger picture, knew something the Devil, and Job, didn’t, and so wasn’t swayed by the Devil’s tactics…kind of like where it says, “For the joy set before Him, Jesus endured the cross…”

When Noah was in the hospital I had some serious heart-to-heart conversations with God. To state it mildly, I was totally disenchanted with our circumstances. My theology was rocked since I had faith as big as a mustard seed, even bigger, yet our son was sick, dying in a hospital, and God wasn’t answering my prayers the way I had worded them. Perhaps He wasn’t catching my drift?

Perhaps I wasn’t catching His?

And after I shouted to God, “DO YOU HAVE ANY IDEA WHAT IT’S LIKE TO LOSE A SON?!” a quiet came over me I had never known. I sat on the floor of the hallway of Children’s Hospital and suddenly realized, God did, indeed, know what it felt like…and my perspective began to shift:

  • What if God’s Word is true and my theology is off?
  • What if He does know the number of our days, and Noah’s days are shorter than what I want?
  • What if He is still good even in the midst of our pain?
  • What if “death” isn’t what I think it is and being in God’s presence really is just that amazing?
  • What if following and trusting God means giving up my entitled mentality?

Please hear me on this: Even though God’s perspective on death is likely different from ours, the pain of losing someone we love still hurts like a mother. Jesus even bawled His head off when He heard the news of His friend, Lazarus’ death. Loss hurts. Period. But this post is to start talking about the HOW and WHEN.

A few days before my Mom died she called me close to tell me something. She wanted to be sure I heard her clearly, “Boo Boo, it’s not cancer, it’s not chemo, it’s not the Devil…it’s not the food I’ve eaten or radiation…God, and God alone, decides WHEN we die…because if it’s any of those other things, then the emphasis or focus is on it.” (emphasis my own on “when”…)

Years before she reminded me of this, as I finally sat still on that hospital floor, I knew this was true…this topic of WHEN, and even the HOW. Watching my strong Mom’s body weaken under the effects of a disease rocked my heart, for sure, as did watching Noah quickly ail, but all the more reinforced in my heart that Jesus’ emphasis on living and loving well TODAY is what we’ve been called to and all the fear, worry, and attempts to ward off death would only steal time from life and living.


Lots more to come…


The Stories Behind the Buzz

Today I shaved my head. Let me rephrase that, first I put it into two high pig tails and let Emily and her best friend, Sunny the daughter of one of my dear friends, cut them off to donate. But the reason for the cut wasn’t to donate. Then we had a bit of fun, because when you cut two pig tails off, well, you get a really bad mullet…almost Pat Benatar, but not as rockin’. After the pseudo mullet-mohawk phase, the beautiful Bina, our babysitter and Em’s big sister from another mother, stepped in with the 1″ clip and cleaned it up around the sides so we could see what a sorta-pixie would look like. From there I let all three of the girls have their turn at trimming here and there, just cuz, why not? And finally, I went to town with the 1/8″ clip and loved every minute of it.

I sent this "before" to Jason who is in Taiwan right now for his job with World Vision. He fully supported my choice. Come to find out, he's always had a crush on Sinead O'Connor, so now I know why he was so supportive... ;)

I sent this “before” to Jason who is in Taiwan right now for his job with World Vision. He fully supported my choice. Come to find out, he’s always had a crush on Sinead O’Connor, so now I know why he was so supportive… 😉


Here are the hair bandits after the first cuts.

Super bad rat tail, mullet type pig tail chopping.

Super bad rat tail, mullet type situation…post pig tail chopping.


Here we cleaned it up so I could be just like the beautiful bella Bina!

Here we cleaned it up so I could be just like the beautiful bella Bina!

T-shirt brought to you by "Chosen and Dearly Loved" a ministry for special needs.

T-shirt brought to you by “Chosen and Dearly Loved” a ministry for special needs.


It took me 20 minutes from shower, dry, brush teeth, do make-up, and get dressed this morning. Don't even think about telling my dad how his three daughters should have done this at age would have saved him hours of waiting and we would have been places on time. All that time I used to spend on my hair I'll now spend in prayer. A visual reminder to pray...

It took me 20 minutes from shower, dry, brush teeth, do make-up, and get dressed this morning. Don’t even think about telling my dad how his three daughters should have done this at age 13…it would have saved him hours of waiting and we would have been places on time. All that time I used to spend on my hair I’ll now spend in prayer. A visual reminder to pray…

For me it was a choice for empathy. For everyone I know who loses their hair because of caustic chemicals coursing through their veins, it’s an inconvenient and scary side effect on top of a disease on top of pain and discomfort and emotion and hope and bravery and courage and wonder if it will work.

Today on Facebook I posted that 4 of my friends are on chemo, but shortly thereafter, realized I was wrong and the number is 6, as I miscalculated. And those are my friends. Then there are my friends whose spouses are sick, whether with cancer or undiagnosed ailments and endless pain, unexplained, yet more real than ever.

And then let’s talk about our sweet friend’s whose daughter has to have her foot amputated or my friend whose daughter just had to be taken to Juvie or the friend whose husband just had his body crushed by a car in a bike accident or my friend whose son’s heart is broken and irreparable and so they wait and my friend whose son has 100’s of seizures each day or my friend whose son’s disability is ramping up because of puberty and he’s getting too strong for her and our dear friends whose son has been sick for over 5 months, in pain, every day, and my sweet new friend whose daughter has a terminal illness.

Then there is my Dad who misses our Mom every. single. day. Her picture is everywhere I look as we stay at what was their house, and my guts hurt for his guts, and for his heart…but that doesn’t even include the pain he has daily because he needs a new knee and his best friend isn’t here to hold his hand through it. And for my beautiful Mother-in-Love who has been brave and strong for 17 years a widow on a journey not meant to tread alone. And my friend who is a young widow as of December.

And I don’t care how “acceptable” a death is at a latter age, the company of orphaned daughters and sons I have met on this journey grows regularly and there isn’t a day that goes by that we wouldn’t each love another hour with our parent…just one more question, please tell me one more story…but they are buried along with a portion of our hearts.

And the news the other night aired the total fire destruction of an apartment of someone my family loves and prays for regularly.

And all the single parents and broken homes and busted up hearts and heart-wrenching addictions. The parents who are waiting and longing to adopt.

But that doesn’t include the bereaved parents who have joined the community of late, a community I’ve been part of for over 8 years now, like my sweet friend who is figuring out life with her family minus their heart-daughter after 6 beautiful years. And the friends who have welcomed a new life into theirs after the loss of their sweet handsome boy.

ALL THIS, and we haven’t even turned on the news to see and be aware of all that transpires worldwide…

On any given day, we all carry things in our hearts, some we share, others we hide and hold closely, all of them chisel at the walls we try to erect around our tender hearts because life is hard and maybe protecting seems like the safe and right thing to do.

But, on any given day, none of these things are meant to be faced alone. No, I am not going to have a port put in my chest and take chemo to show empathy to my friends who have cancer, but maybe we should? Maybe empathy is entering into the stories of others with both feet? Maybe we would be more tender with our enemies if we both were in the same hospital with our ill children, just down the hall, just trying to love well, realizing we have something in common?

I tell you what…Jesus wasn’t just a historical figure written about in a history book that lies dusty on a shelf somewhere. God was in LOVE with ALL of us and came here to show us how to love well, which included loving everyone, even the crustiest among us. He ate dinner with those “society” called down and outers, but the thing is, they looked a lot like me, and you, and that guy, and that lady over there. Each of us has a story and we all have hard things. If we don’t start living empathy, choosing it, getting uncomfortable and walking through hard things with one another, then those of us who call ourselves “Christians” are using His name in vain. Jesus came doing the opposite of the way of the world…He came loving selflessly, He spit in dirt and made mud and smeared it on a guy’s eye to heal him, He told us if we wanted to find our lives, we needed to lose them…He didn’t just ask us to believe, He asked us to follow Him….

John 1:9-14 in the Message says this:

“The Life-Light was the real thing:
    Every person entering Life
    he brings into Light.
He was in the world,
    the world was there through him,
    and yet the world didn’t even notice.
He came to his own people,
    but they didn’t want him.
*But whoever did want him,
    who believed he was who he claimed
    and would do what he said,
He made to be their true selves,
    their child-of-God selves.
These are the God-begotten,
    not blood-begotten,
    not flesh-begotten,
    not sex-begotten.

14 The Word became flesh and blood,
    and moved into the neighborhood.
We saw the glory with our own eyes,
    the one-of-a-kind glory,
    like Father, like Son,
Generous inside and out,
    true from start to finish.”

*my emphasis added

I’ve ever only wanted to be who God created me to be. The months of Noah’s life gave me a glimpse. The weeks leading up to my Mom’s death opened the door a lot wider. Shaving my head in solidarity for friends and anyone and everyone going through hard things, well, let’s just say, I’ve never felt more free to be my true self, my child-of-God self, my most imperfect, messed up, forgiven and loved-self. And, I’ve never felt so free or more full of God’s purpose and beauty.

All the time I’ve spent doing my hair as I’ve been growing it out to “feel” pretty and sexy and fancy, well, with 1/8″ hair, I’ll have a bit more time to live intentionally. And that’s what the shave is about for me…a reminder to live a life of empathy, because we are all here, living hard stories.

And if anything, I know I’ll get ready faster than you tomorrow morning 😉

(More on John in another post…)

Get Your Party Started

On October 11, 2014, my Dad, sisters and I threw a party we should have thrown years prior, but under different circumstances. Life gets busy. We have jobs and spouses and kids and appointments and things to do and budgets and we get tired and the thought of traveling with niños in tow is less than appealing, and so, the seemingly responsible and practical reasons for not doing WHATEVER it is that is very important, but could maybe be put off until our lives slow down a bit or aren’t as crazy, well, those things don’t happen. And then it’s too late, over, after the fact.

There were special milestones we looked forward to acknowledging, but planning for a 70th, 80th, or 90th birthday party or a “remission from cancer” celebration, well, those never happened.

My Mom even said to me before she passed away in June, “Boo Boo, I think I was waiting to get better before I did such and such…”

Every one of us has lives filled with things to do and places to go and sights to see, check lists to complete, errands to run, things, things, things, busy, busy, busy, some of it good, some of it mind-numbing, some of it slowly sucking the life from our bones. But when the day is done, it’s the people with whom we have come in contact with, from the guy at the checkout at the store to the person across the table at dinner, to the person reflected in the mirror, who matter the most…

I’ve sat with death on several occasions. I’ve held those I love, hand in hand, close to my heart as they took their last breath and moved on to the realm of real living, but the realm I’m not welcome in yet, the one I can’t see…the place where much of my heart resides and my mind wanders to, yet my eyes are blinded because I’m meant to live here, right now, fully engaged, beautifully intentional, eyes open to the present, heart wide open, loving and celebrating the gifts (people) of God all around me, on this given day.

And so, though we celebrated our Mom with daily phone calls and family meals and gatherings, trips here and there, hours over the sewing machine, snuggles on the couch soaking in her wisdom, we never threw her a party like the one we did in Arizona just this last weekend. It wasn’t that it was some fantastic venue or even that the food was super yum. This party was one of the most beautiful gatherings I’ve ever attended because the setting was love and the décor was a room full of friends, all people my Mom loved and who loved my Mom. Set in one of the wealthiest and most beautiful cities in the world, I looked around the room and realized with an overwhelming sense of awe that my Mom was one of the richest women who ever walked the planet…her heart had been filled with the gift of friendship, both in the giving and receiving, and everyone else there knew it, too, their presence speaking louder than words.

I think Kid President is onto something…personally, I’m not so much a parade girl…they are kind of long and I’m not a fan of having candy chucked at me from a distance, but, baby, say “party,” dinner party, cocktail party, well-digging party, dance party, charity party, beach party, garden party, wine tasting party, coffee party, fund-raising party, freedom from slavery party, cupcake party, impromptu party, just hanging out party, birthday party, divorce party, because the house is clean party, bad/good day party, anniversary party, because it’s Monday party, hiking party, biking party, whatever the heck kind of party, party,” the key word here is “party” and my heart lights up!

Life is short no matter the timespan. Sometimes waiting for tomorrow, scheduling, or “special occasions” establishes a mindset that TODAY isn’t miraculous enough…

I mean, really. What’s more special than right here, right now, and the people around us?

Forget Pinterest and go break bread and throw someone a party…because you still can!

Time: My Love Language

6/15/14, taken by Vanessa Kruse Photography

6/15/14, taken by Vanessa Kruse Photography

My number one love language is time…and I think that’s why this grief is so incredibly profound.

My Mom was too young to be as old as she was when she died. She wasn’t an “old” soul. She was wise and discerning beyond her years, basically with enough God-discernment to qualify for a lifetime, but as far as spirited, she was young and vibrant…

Did you know that just 8 weeks ago the docs said if nothing else worked our Mom had about a year to 18-months left? We planned a family trip to Glen Lake, Michigan, and Traverse City, to attend the Cherry Festival and take in lots of Lake Michigan sunsets, our family tradition while growing up that we hadn’t done in over 20 years. Did you know that just 3 weeks ago they told us 4-6 weeks, at best?

What THE HELL? #$%^&*

I’m no mathematician, and I’m also not one to listen to one human dole out a life and death time-frame to another human, but the numbers just don’t add up and I’m grieving TIME!

IT’S GONE. TIME WITH MY MOM IS GONE. And she was one who spending time with was priceless…a gift, worth every minute…

Yes, I get that she was “diagnosed” with cancer just shy of 3 years ago, but she was a Mother of the Faith, a Superhero, a Spiritual Force to be reckoned with in the earth…she wasn’t solely the love of our Dad’s life and our Mom and friend to many of you, she was a friend of God and the thought of her dying never occurred to me…because apparently I’m slow or, maybe, rather, I chose not to “go there” so I could be present in each moment, one day at a time.

My grief runs deep because her love ran even deeper…and time was cut short.

There. I said it. I’m not a fan of God’s timing or answer. Sure I have peace that my Mom is dancing her heart out with the Lover of her soul, seeing family and friends, meeting people who have been family all along…she is in the presence of Almighty God, her Creator and the Love of her life, but I miss her and this can’t be “real.”

I have gone back to the mortuary twice now to pray for my Mom to be raised from the dead. This whole “great commission” thing from Matthew 10 is difficult to follow, the part about “healing the sick and raising the dead,” when the dead person is enjoying the presence of God so much that the very thought of returning to earth life isn’t even an option…Was it so bad here? Hey, a bit of cooperation would be amazing…

Come on, Mom! I get it! God’s presence is awesome! Clearly! But you have eternity to hang out there…come back here so we can love people as a family and share God’s love with everyone we meet…let’s go! The world is lost and wallowing, they need to know God’s unconditional love…

To visually see our Mom age at an exponential rate over the last few months was a bit Benjamin-Button-esque. It was unreal and surreal and I could curse chemo and cancer for all of it, but nothing, nothing, nothing is outside of God. Nothing. My Mom prayed before, during, through, and after EVERY SINGLE step of this disease, treatment, etc, and confirmed to my heart, NO MEDICINE, NO CLEAN EATING ROUTINE, NO NATURAL OR TRADITIONAL MEDICINE OR TREATMENT WOULD EVER RECEIVE THE GLORY FOR HER HEALING OR DEATH, but God alone would be her Healer, whether it was with us here on earth or with Him in His presence…and this is what I trust. God really does know the number of our days. He showed my Mom while she was struggling to breathe that it wasn’t the Pharisees or the Devil who finally took His life on the Cross, but God alone said when it was finished…

He holds time in His hand, says life is “but a breath” that it’s a “wisp”, short, and that He is coming back soon, yet my limited earth-mind is here, steeped in earth life and earth perspective and though the hope of heaven is that much richer with more treasure there than just days ago, eternity’s time and my interpretation and physical experience with it aren’t quite lining up, and as a result, the loss of time aches like a mother…


Update on My Mom

There is cancer in my mom’s body.

Though I am her daughter and will/would fight for her to make it go away, over the past 3 years I’ve been spending much time in prayer and observation, watching helpless at times, sharing tears, laughing when the very thing may seem disrespectful and out of place…but I’ve been learning a lot…like how complicated life is and how much I love my mom, along with my dad, sisters, and a whole lot of other family and friends.

She is a rock when it comes to her faith, trust, and love for God. She has a direct line, I’m sure of it, and I hope to hear Him that clearly as I press into Him.

Facebook has blocked me from “liking” the posts I put up about my mom, so I’m asking a favor of those of you who read here and are willing: will you please comment here so I can show my mom?

Anyway, here is the update:

Thank you for praying for my mom! Please keep the prayers going and however the Lord leads you, share your heart here so I can pass it onto my mom to lift her up.

Here’s the scoop: about 12 weeks ago she was finishing a round of chemo and was so wiped out, even though it was shrinking the tumors in her lungs. She received 2 units of blood at the end of this round. The doc wanted to give my mom a break from chemo so her body could recover before she started a new round. During the break she would be on a trial drug for which she qualified that was not a “killer of good cells” but would only inhibit bad cells from growing, IF IT WORKED. My mom was on the trial drug for 8 weeks and also changed her diet to include tons of veggies and fresh food and lean proteins, checking her alkalinity each day. She was pink again and said she felt great, except for the pain in her left shoulder where the radiation treatments froze her muscles. After the 8 weeks were up she had an appt with her oncologist that we all went to and the scans showed that during those 8 weeks the tumors doubled in size. *She has metastasized triple negative ductal carcinoma in her lungs.

Right after that appt she decided she had no other choice than to try one of about 5 other chemos the doctor told her about. This one, however, was a daily oral chemo that she was to take for 2 weeks, then rest one week, then 2 weeks and rest another week. (Her previous chemos have all been IV and administered once a week, with a bit of time to breathe on her days off….) She was so weak and tired on this chemo she did finish the first set of 2 weeks but got sick during that time and the cough hasn’t gone away, so she told her doctor that if she didn’t recover during the rest week she wasn’t going to do the second set until she was strong enough.

She went in for physical therapy yesterday morning for her shoulder, but before hand called her nurse and after hearing her on the phone the nurse instructed her to go thru the ER to get an Xray and scan. The doc was going to discharge her but when she got up to go to the bathroom she could hardly walk. They admitted her and read the scans. During the last 11 1/2 weeks the tumors have increased considerably, neither the trial drug nor the oral chemo working, and now she has pneumonia. They are treating her with IV antibiotics, giving her white blood cells a boost, and she is going to start a different chemo, likely.

She just called a bit ago and has no air movement in her left side. They want to scope her and see if there is a mucus plug they can remove or if it’s a tumor putting pressure on her bronchials. They just moved her to ICU and will start the procedure any minute. I’m spending the night there tonight and hope to spend some time with her in the morning. *Update at 7:26, it’s not a mucus plug or the pneumonia causing the difficulty breathing, it’s the tumor.

Here’s the deal…my parents are way too young to be this old! I’m not in denial. My father-in-law died at 49. Noah was 7 months. I get this. It’s just that I believe God has more life for my parents to carry out some plans He has for His Kingdom purposes. My mom is at peace either way, but she doesn’t feel like she is done yet, either!!! They have dreams and prayers they have prayed for 20+ years. I know all about chapter 11 in Hebrews…maybe I am in denial. I just am not done loving my parents and enjoying who they are, and not done introducing everyone I know to them. I’m so very grateful God chose them to be my parents and I think they are some pretty wonderful people….

All I know is the faith and trust my parents have in the Lord is challenging my own. My mom is a prayer warrior. Like I said, direct line, and some might say, “Well then why isn’t God just healing her?” Or, “If He is so good, why won’t He heal her?” In life there is a bigger picture of which we are not totally aware. I’m okay to say I just don’t know. He loved my son and he died.  He loved His own Son…and we know that story. My mom takes it further and assures us all that He is good and her love for Him won’t change whatever the outcome.


I’m kind of numb and am just soaking in time with my folks. Any prayers of encouragement for them would be fantastic and most certainly welcomed.