Tag Archives: childhood cancer awareness

The Date That Would Alter Realities

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 This is the face of hope…of courage…of faith. This is my beautiful, then 4 year old daughter, Janet. Until this day, she had never had a hair cut in her life. Cancer treatment would take her hair away, and eventually her life. But, the smile you see here – it never really faded. She had a smile that could melt an iceberg.

This day in history. On some calendars, it is merely but a day. On mine, it will forever mark the day (four years ago today, if you’re reading this in 2017) – that our lives changed forever. It was this day, 2013, that our sweet little Janet was diagnosed with a brain tumor. That was the day that life as we knew it – it would never be the same. The normal we once knew, would never be heard from, or seen again.
 
From that day forward, however, we would also learn an indescribable love.
Yes, this journey would become not a sprint, but a marathon. A journey of epic proportions. A journey so painful, it is hard to breathe some days…but so full of love. It would be the beginning of our journey fighting childhood cancer alongside Janet. She was so very loved, and never alone — and knew both of these things to be truth.
 
With all the love in the world, it’s still a journey marked by intense pain and heartbreak. This day, 2013, she was diagnosed with a brain tumor…and three years later, she would breath her last breath this side of Heaven. Friends, I hate the fact that this is our reality. It shatters my heart, and I wish with everything I am that life wasn’t this way.
 
But, it is…and here we are. Continuing to breath, and continuing to have a heart that beats. I made some statements and promises to Janet just before she died. I told her that we were going to miss her like crazy, like there’s no tomorrow…and that it would hurt when she was gone, but that we would be okay, because we’d be together. I did tell her that we would ALWAYS #RememberTheLove. And, that is a promise I will never break.
 
For those of you following, and who share love and support – and also prayers, it is with heartfelt gratitude that I say thank you. Please, please don’t ever stop.
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Facing Life After Death – Walking Through Life’s Unbearable Moments

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This child. This courageous fighter embodied strength combined with love. She knew and showed compassion. Though she faced insurmountable odds, she gave the world so many gifts – love, hope, compassion, joy, and so many other beautiful things. She leaves a beautiful legacy of love.

Last night, I had the opportunity to spend time on the oncology floor at our Children’s hospital. If you know my story at all, you know that my daughter died (13 months ago today) from brain cancer. She spent a great deal of time on this very same oncology floor. So, to be admitted with her older brother – it was difficult. When I introduce this paragraph as this being an opportunity, I did so intentionally. I had the chance to feel things that needed feeling.

With regards to being on that floor again – it was quite a mixture of emotions. Each and every emotion you could have, I did. I was angry. I was happy. I was sad. I had joy. I knew deep pain. I knew incredible love. It hurt so much. But, there was so much beauty. I was able to see the love in those walls. Empathy and compassion on the faces of nurses who remember Janet, and who remember the love. I was stopped once, and asked if I was Janet’s mom. That was such a heartbreaking and more than that – heartwarming moment. She was there the night before Janet died, and she remembers. She’ll never forget my baby. I saw another nurse this morning that also knew Janet well. No magical words, but compassionate eyes. We did talk, and it did my heart good. They still care. They’ll never forget her either. My heart needed to feel the pain, but to also feel the love.
 
I kinda think each and every day, all of life, is this way as well. Think about it. As I have said so many times before – I KNOW that I feel the deep pain that I do because of deeply rooted love. If you look at ANY passion or emotion, look at the polar opposite emotion. Usually, you can find them attached at the hip. Weakness is attached to strength. Hope to hopeless. Broken to healing. Etc., etc., etc…
 
I want to encourage you guys with some encouragement that has been life – giving to me. As we all know I stand on the FACT that it is okay to not always be okay. More than that, it’s okay (make that vital) to feel what we need to feel. If we hurt, allow ourselves to feel. There’s that fine line, though, of not staying in that place forever.
 
If you need to know that you are not alone, allow me to be the voice that says, “me too.” No matter what you are walking through, know that you are walking THROUGH it. I know that you may be struggling with the most horrific pain you have ever experienced. Is it the same as my pain? No, not always? But, also, yes – perhaps. Either way, pain (like love) is a universal language. It speaks. Will you listen?? I will. Maybe you don’t need words. Maybe you just need someone to be willing to sit, even virtually, with you in your pain. That is a gift that has been offered to me, and it’s an outstretched arm I also offer.
 
I would also like to offer this tidbit. As a bereaved mother, I want you to know – any of you reading this, it is an honor to walk alongside you on your journey as well. Do I enjoy pain? No. But, there is great healing (for me) in doing life alongside other people. It gives me great purpose to be able to say, “I may not get exactly what you are going through, but it’s an honor to sit with you in this pain,” and mean it. I still consider it a distinct honor to walk alongside parents with children fighting cancer – at the beginning of their journey, or even in their final moments. Does it hurt? Absolutely. Is it hard? Without a doubt. Is it worth it? Absolutely, positively, without a doubt. I said all that to say this, PLEASE connect and reach out. Though I have walked through some very painful seasons, it gives me tremendous purpose to use our experience(s) to share hope, compassion and love with others.
 
So, in the event you ever need help, know that help exists. You aren’t alone, and you matter. You are valued and loved. Please give yourself the ability to feel what you need to feel, to be honest and to give your heart a voice. It is then, and only then, that healing can begin.
 
If you would like to talk to me, I am here. Reach out. If you have a friend who has a friend fighting cancer, don’t hesitate to reach out. We have a wealth of knowledge, and though it sucks, it’s an honor to share experience(s) with those walking through similar life experiences. If you’re just hurting, and your heart needs a voice, I’m here. A non-judgmental, listening ear.
 
To all who continue to surround our family with your thoughts and prayers – know that we are, and forever will be grateful. The love and encouragement you continue to share – there is so much strength found there. Thank you for, forever and always, for you reaching out and being able to #RememberTheLove. It brings me strength, and does my heart good.

Just To Write – Sharing What Is On My Mind

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I am going to do something different this evening.  I am just going to write.  I don’t have anything specific on my mind, or that I need to get out, so to speak.  So, I am just going to write.  Unedited.  What you see is direct from my brain.  Buckle up  and enjoy the ride!

One of the biggest things on my mind right now is life.  Life, in general. I have a lot of time to sometimes just sit back and ponder the meaning of life.  I sometimes wonder if this is all there is to life, and it bothers me.  Then, I might feel a little bit guilty. Why?  Look around.  I have a husband and three amazing children – not to mention a multitude of extended family – and a network of amazing friends.  It takes thoughts like that to remind me that I am surrounded by so much love.  Life indeed does suck sometimes.  There is always more to life – but even if there isn’t – what I have right now is pretty special, and worth truly living for.

Living.  There have been days recently where I’ve just wanted to pull my hair out.  Truth be told, that might be a little difficult right now, seeing as how I recently shaved it in honor and support of my daughter who is six years old – and bald, fighting cancer.  But, back to my recent crazy days.  There have been moments where I have been feeling quite overwhelmed.  By everything.  Coping with life.  Coping with her having this returned cancer. Dealing with feeling inadequate to handle everything.

It’s then that I realize that I DON’T have to handle everything by myself.  I don’t.  You don’t.  NO ONE SHOULD.  You see, there are multiple factors I have on my side, making life more than worth living.

First, I have a God who is larger than life.  For some reason, He loves me.  He always has, and He always will.  The neat thing about that is that I haven’t done anything particularly worthy of Him.  Just because I am His child – that’s why He loves me.  It’s an awe-inspiring thought.  To know that I can not do everything right, make mistakes and just not live life “perfectly” so to speak, and KNOW that He is always going to be waiting with open arms…that is powerful to me.  To just know that no matter how broken I may feel, He is always ready and willing to pick up the pieces and create a masterpiece.  He is someone who understand every single part of my life.  The good and the bad.  The ups and the downs.  He gets it. And, He loves me.

Secondly, I have family.  I’ll talk about friends in a minute, but first I’m going to share how blessed I am.  I got to thinking what life would be like if I weren’t here.  No, this was not me contemplating suicide, it was me taking myself out of the equation, and wondering how things would be different if I just ceased to exist.  Let’s talk about that precious child fighting cancer.  I’m her Mama.  There isn’t anyone else in this world who can play the role I do.  I am with her every step of the way.  Her Daddy is too, but I’m primary when it comes to taking her to appointments, blood draws, etc.  I don’t resent it.  It makes me happy that she needs me.  Then, there are my boys.  They are tremendous.  I love that we have an open line of communication.  There is not any topic that is barred from conversation, and they know it.  I would like them to be able to talk to me about anything.  I want to be a part of their lives, not a distant dictator as a parent.  I love my children more than I can put into words.  Then there is my husband.  We have been married longer than we have a teenage boy alive.  Things haven’t always been perfect in our marriage. There have been times I have questioned so much.  However, though not perfect, always worth fighting for. God has given me a love for this man unlike anything I can put into words. Even through tough times, I have never forgotten the initial reasons that brought us together, and the love that connected us in marriage.

After family, there are friends. You know, some friends are as close to me as family.  Friends make me smile.  I’d like to take a moment to talk about people both online, that I’ve never met – and that I may not ever meet in person, and people I know in real life.

Don’t EVER think that “just” online friendships are worthless.  They mean so much.  No matter what, online relationships are very real.  I’ll talk about them first. Through online platforms, Twitter, Facebook and my daughters prayer and support page (also on Facebook) I’ve been able to connect with people all over the world. Literally.  All over the world.  That’s neat.  Just connecting with other people is important.  Creating friendships “across the airways” has been incredible.  There are people on my daughter’s page, for instance, that I value their friendship so much.  They have shown so much love and caring.  They take the time to let her know, and to let me and our entire family know that we are loved, and that they care how she is – and how we’re all doing.  It puts a smile on her face, and on mine to see people comment and just surround her with support and love.  There is no question in her little head that she is loved.  I wouldn’t trade that for anything.

Real life friends.  I also know I couldn’t do life without them.  One very specific place I’m surrounded by friendship is at and through my church.  From the moment I walked in the doors the very first time these three years ago almost, I felt truly at home.  I walked in the front doors with lots on my mind, and weighing on me personally.  Like I have said previously, I am diagnosed bipolar.  I say that to just say this.  I was not at a great place, mostly mentally, when I first started going to my church.  However, I was welcomed with open arms, with no judgement, and regardless of what my story was.  That, my friends, was life changing.  Because of the welcoming atmosphere, I was able to connect – both with the people, and with God. Even at the beginning of this fight with childhood cancer and my daughter, I knew they were with me.  They freely admitted that no one at  the church had gone through this, but that they were going to walk with us through the process. They have done just that.  In short, they have been friends.  True friends. Through all that makes up life.

Speaking of connecting with friends,  I’ve mentioned how I’ve recently felt quite overwhelmed.  It’s almost as if all the emotions that come along with being bipolar and having a kid fight cancer – as if all the emotions of these two things have combined forces from years previous and come back to sneak up on me…saying, “here I am…deal with me now!”  It is during these times that I have learned the value of reaching out.  I haven’t always been one to reach out.  I’ve been one to hide, keep to myself, and not let anyone else in.  Why?  I don’t want people to know the “real” me for fear of what they’ll think when and if they find out what makes me tick.  I’m learning that if someone thinks negatively about me after knowing who I am, then fine – I didn’t really need them anyway.  That may seem harsh, but it’s true.  If someone can’t accept you for who you are, you can’t go and try and change yourself to fit the mold.  Doing that will just chip away at you, taking more and more of you with it each time.  Be you.  Be transparent and be authentic.  Doing so isn’t always easy.  It’s vulnerable.  But, it’s worth it.  Creating relationships based on reality is worth it every time.  Like I said, during the times where I’ve been feeling overwhelmed, I’ve learned the value in friendship.  In calling someone and just saying “I’m not okay” or “I’m hurting. Would you please pray with and/or for me?”  That’s hard to do.  But, it’s necessary.  At least, it is for me.  If you’re honest, you’d agree – you need to always have someone by your side that you can call on to just say that things aren’t going okay right now.

As such, it has become imperative for me to remember that it’s okay to not always be okay. I am a Christian.  Which is awesome.  However, accepting Christ into my life to lead the way doesn’t mean that suddenly life will be a bed of roses, with no troubles or struggles.  No, just the opposite.  It means you are human, but even so, God will give you strength to walk through whatever life throws your way.  I know this to be absolute fact.  It’s just that sometimes I don’t always keep my eyes on Him and Him alone.  Through the struggles, I see myself, and my own inadequacy. Of course I’m inadequate.  I wasn’t created to do life alone.  I wasn’t created to do life without Him.  I truly believe that God created us to be community people – to not walk through life alone.

I guess I needed to write all this for myself as much as for any of you who have taken the time to read.  I want you to know this.  You are not alone in this world.  You don’t have to be alone in anything you walk through.  Know that.  I want you to remember all these things I’ve needed to remind myself of.  No matter what your situation is, you are important, and your life has value.  Even when you can’t see it, look around you.  See the people you interact with, and that count on you.  You may not be able to see it, but your impact is great.  More people than you realize love and support you.  You may just need to allow them to do so.  I know people have constantly wanted to help me, and to just be a friend. It wasn’t until I was able to reach out and just be real – authentic – transparent, that I could see true and deep friendships.  I encourage you to do the same.  You are worth it.  Your story is important, and it is still being written.

If you have made it this far, know I’d love to hear from you and know what your story is all about.  If you are feeling alone, or just need a friend, feel free to reply in the comments or to connect through the “contact me” page.  Even if you are having a great day and just want to remind the world to smile, feel free to connect.  I also want to say that I value your thoughts and prayers.  Clearly this isn’t the easiest time in my life.  And that’s okay.  I’m not doing it alone thankfully.  Thank you to everyone who will take the time to pray.  It means so much.  Let me know how I can pray with and for you as well!

With Childlike Faith – Fighting Childhood Cancer

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My daughter has such heart. She has a joy and just the positive spirit that she takes with her everywhere! This little girl has a smile that will light up any room. Her no-nonsense and innocent look at life is heartwarming beyond words. Children, especially those fighting big battles, just have a different perspective than anyone else alive does.

With all this said, I’d like to fill you in on some of the details of our recent history.

As you may have heard by now, our little Janet’s cancer is back, and things don’t look good in a lot of areas. First, I am going to share all that with you – then I am going to tell you were we stand on everything about to be mentioned.

We all knew that it was a possibility that her cancer could one day come back. No one, and I mean no one thought it would so soon. Dealing with a recurrent / metastatic cancer is not good. Learning that she will endure cranio spinal radiation for over a month (every weekday) is also not fun. The follow on treatment will be an outpatient chemo therapy regimen.

Let me explain her treatment plan. For four and a half weeks, Janet will undergo radiation therapy. This time, there will be mostly proton beam radiation, with “normal” radiation a few times. There are said to be normally more side effects with this because a different type of radiation, as well as a larger part of her being treated. The goal of hre radiation is to shrink and make disappear the tumors… also to preferably kill their opportunity to every even possibly return.

After radiation, the protocol is that she will go through an outpatient chemo therapy regimen. This will include daily (Monday through Friday) outpatient chemo. One week. Then, she’ll have approximately 2-3 weeks off, and then do the same thing again. Aside from that, every two weeks, she’ll have a one hour outpatient chemo administered – separate from the others. As I have learned, this chemo therapy regimen is more aimed as being palliative support, or a quality of life kind of thing – as versus curative.

If you’re like 99.99% of everyone else reading this, you may be wondering about alternative protocols or treatment options. You may have suggestions on where else we can seek treatment on behalf of our little Janet. I want you to know, we have gotten multiple second opinions – from the nations leading hospitals and have involved the nation (I’d say even the world’s) top medical minds in this situation, and in her care – simply because her tumor / cancer IS one of a kind. Nothing like it exists in the world. I spoke with another hospital again today, and heard the exact same news as all others have said – St. Louis Children’s Hospital has her with a protocol they’re comfortable with, would recommend themselves, and has state of the art equipment. There are other alternative therapies that we are also looking into, just to ensure we do all that we can to help our little princess do her best.

The entire point I am making is that we have faith and confidence in Janet’s medical team here at Children’s. Never did we doubt them. We sought second opinions just to ensure everyone was on the same page. We do NOT like the page everyone is on, but there is a certain amount of peace knowing that the medical minds agree – as to both what we’re looking at, as well as treatment options, etc.

Now, with all that said, I want you to know that we have not given up – and we will not EVER give up. In fact, we KNOW without even the shadow of a doubt that our God is greater than ANY cancer, any tumor, or any issue Janet faces. Regardless of what the situation looks like, we KNOW that God IS in control. His hands are clearly seen in just about every aspect of this journey. That’s not to say that Him being in control makes it any easier to deal with — but it does make it easier to walk through. We don’t LIKE the situation Janet is in right now, but we do trust God 100% with her situation, and her very life. All of our lives. Her life, and her battle with cancer is part of a bigger story – one bigger than her, than us, or than anyone can imagine. I have that faith. What exactly that means, I do not know. However, I do know that I am grateful to have the strength that comes from the living God we trust. I do not know what tomorrow will bring, but I refuse to allow the fear (like I’ve said before) to rob and steal the joy from today.

For those of you inclined to pray, know that your thoughts and prayers are valued.

Not Being Alone – Grateful For Phils Friends

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Something I continue to talk about is not being alone. This journey is so much easier to walk through knowing there are others who love our four year old (and us) and care. From the very beginning, I determined this is nothing I was willing to do alone, or to allow her to do alone.

As such, we were blessed to be able to connect with an organization that reaches out to cancer patients of all ages. This organization, Phil’s Friends has been instrumental in blessing SO many people, or family included. Phil, who started Phils Friends after his own fight with cancer not once, but twice, has a heart of gold. His testimony is such an inspiration to us. God’s love and peace was so much a part of his healing, of his story, he started this organization with the hopes of reaching others who are struggling with this. His faith was strengthened through this process, and he aims to share the same strength and hope with anyone through this organization.

A few weeks ago, Janet received a care package from Phils Friends. I posted pictures at the time. It came at the perfect timing. In the times since, we’ve aligned with this organization to help them share hope in any way possible. They have brought Janet (and countless others) so many smiles. Smiles do a body good!!

Anyway, that said – Phil was in town with his family this past weekend. Janet and I had the honor of meeting him and his family. There were hugs and many smiles. In the picture, you’ll see a semi-funny picture not seemingly related. It just shows Phil’s heart. My air was low in my tire, so he insisted that he help me – as he wanted to make sure we were safe. So, he helped out. So, I had to take a picture. Anyway, Phil actually brought a special care package for Janet to give to one of her special new friends at the hospital. What better time, cause her next inpatient stay starts tomorrow!

I would consider it an honor if you would repost and/or share this with anyone in your sphere of influence. Go to their page, like it, and let them know we sent you! More than that, let others know about them. You can find out more at their website as well.  If you aren’t local, they will mail care packages out. If you know anyone who could use some love and hope, please connect them with the page. If you feel inclined to sponsor or help in any other way, please also connect with them. If absolutely nothing else, please pray for them as they reach out to others.

September Is _______ Awareness Month!!

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If you turn on your computer, do a random search about causes, you’ll find it’s an awareness month for different things. This month, September is known to be a month to bring awareness to two very important things. You see, September is Childhood Cancer Awareness Month, but it is also Suicide Prevention and Awareness Month.

I wrote the following on Facebook last night:

What’s on my mind. Awareness. As you all know, or have come to read from my cover photo, September is Childhood Cancer Awareness month. Clearly, this is a cause near but not so dear to my heart. It affects so many people, our family included. I never, in a million years, saw myself making that statement. Let’s remember all those affected in some way, shape or form by this. Do what you can to raise awareness, and also to take action on behalf/honor of those who have lost battles, but also for those fighting, and those yet to fight this battle. Each child is precious.

Something else on my mind is awareness for something else. Suicide. As you may know from previous cover photos and many status updates – suicide is also something not unfamiliar to me. Did you know that September is also Suicide Prevention Month. Suicide is something else that holds way too many statistics. As you know, this is another topic that is near but again, not so dear to my heart. What I can tell you is that suicide is a real problem, and is a problem needing to be talked about. We need to do our parts as individuals and as groups to erase the stigma attached to this. Mental illness is very real, and is no laughing matter. Again, something I’m familiar with. If you know someone who is struggling, do NOT let them struggle in silence. Don’t let them tell you they’re okay when you know they’re not. Don’t let that fake smile be enough to say they’re okay. Dig deeper. Grow friendships more than skin deep. Be the friend you need in others.

No matter what your battle, or what you are struggling with, please KNOW that you are NOT alone. There is not a human being alive that needs to walk through life alone – through cancer, depression, etc. Don’t do it. Let others in. You are loved. Hope is real.

That is EXACTLY how I feel. This life is full of so many uncertainties. Nothing is guaranteed, and tomorrow isn’t promised. However, no matter WHAT curveballs life throws your way – NEVER lose hope. You are absolutely NOT alone!

If you’d like to connect and discuss either of these topics, you can feel free to contact me directly via “contact me” page, or you can post in comments. I look forward to continued dialog.

With Heartfelt Gratitude – Introducing Shiloh Chiropractic

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Normally,  you won’t find me spotlighting a particular company or business.  The truth of the matter is this – Shiloh Chiropractic is so much more than just a business.  Once you take the time to get to know them, you’ll soon realize they are more like a happy (with a hint of crazy) family. They are so much more than a doctors office or any medical practice. They are real people with lives, families and hearts of gold.  Let me tell you a little but about how we came to know and love these people.

If you have read my blog before, you have undoubtedly heard at some point that I have a for year old daughter who is fighting a rare and aggressive cancer. During our hospital stay after her brain surgery, we were introduced to Make A Wish. That was a defining moment in this journey. Her diagnosis became very real right then and there. Of course, it was already much more real than we card to think about. However, to hear you’re child is qualified for Make A Wish just kinda does something inside you. Without dwelling on that though, I’d like to share a bit about how this process has become so much easier to walk through and deal with.

As our family meet with the team of wish granters, the process unfolded in a way that we were totally at peace. The team explained that one of them had been a part of this one chiropractors office that had recently sponsored a child with Make A Wish. In fact, the office had voice the desire to reach out and share hope in a real way with another child. They were seeking to bless another wish kid. They asked if we’d be interested in meeting the office to see if we wanted them to help with Janet’s wish. Absolutely. The next day we met the office staff that would become very much a part of our lives.

We met them, and instantly felt at ease, and at peace. These were people we could tell cared. They cared not only about Janet, but also about our whole family. They have truly connected with Janet, and with all of our family. They are sponsoring her dream to become a princess and meet princesses at Disney World. They will help that dream become a reality for her. While we are absolutely grateful for that, we have hearts of gratitude for many more reasons. They have not only become Janet’s sponsor, but also chiropractic care as well.

The funny thing is, is I wasn’t actively seeking chiropractic care for me. I had looked around previously, but never really felt comfortable or like it was time to start it again. I say again because I know the value and benefit of chiropractic care – even though it had been over a decade since I’d had that. I now know why I never connected with another office here locally. It was for such a time as this. I have always said that things sometimes just happen in their own timing, in the right timing, and for a purpose. There is always a purpose.

As unsure of a journey we are now walking, there are things in our lives that absolutely make the journey not only bearable, but peaceful. Truth be told, this office is that for us. They are helping Janet’s wish become a reality, but also helping in so many other ways.

I’d like to dive in and take a look at the office staff that makes up Shiloh Chiropractic. From each doctor, down to every single member of the staff, these people are awesome. They operate with care and compassion, and have flexibility as well. (A characteristic we’ve come to value much in recent history!) I mentioned this before, but they absolutely do have hearts of gold. They care about each individual who walks through their doors. I can honestly say – from my own experience, and from talking to other patients while in the office – they have a welcoming atmosphere that promotes the ability to rest, relax and rejuvenate – to be like an oasis. I feel like a welcomed guest, not just a number in some records somewhere that walks in. They seem to genuinely care about what they do, and about people – and it shows. They ask how you are doing, or how your day is going – and they care enough to listen to your reply. They give you the time you need, while also being there for many other patients through the course of the day.

It is with heartfelt gratitude that I say thank you to all of Shiloh Chiropractic for being who they are, and for all they do. We are sincerely grateful.