Saturday, July 31, 2010

Random Thoughts

I still occasionally read other cancer moms stories. I know I probably shouldn't cause they don't always help, but at times I still do. Maybe I just want to hear someone who shares something in common with me.

I've been seeking God so much over this past year and lately I can't get through my day without turning to God's word and it's bringing me so much comfort as it usually does. I see life so differently now. I literally live life day to day. That doesn't mean I don't have goals but it's still so hard to know what the future holds and I don't try to figure it out. All I know is that today I woke up and both of our children were in their rooms and my husband was beside me and that's all I truly cared about.

As Nathan's treatments progress it takes longer for his white blood counts to recover after chemo (his white counts fight infections) so we have to be extra careful now more than ever that he doesn't get sick. I've become very strict in who comes over...I actually don't allow anyone over other than grandparents to be honest with you and they have to be well.

Cancer isn't a heavy topic anymore amongst our household when no one's around. We keep an eye out to make sure Nathan's not sick or anything but we're all about having fun and truthfully I believe we may have more fun than most families on a more regular basis.

I don't have time to be stuffy anymore and neither does Sam. We run, play, and act silly with the children as often as possible and make sure it's not a sad atmosphere. It's really no reason for it to be. There's nothing we can do but keep praying and we've been doing that.

The times when I get sad and of course it still happens I do turn to my growing group of cancer mom friends and it brings a weird sense of comfort. Unfortunately I'm not alone and when no one else understands why LaToya is acting "weird" they get it.

Life will never be the same. And in a way I pray it's going to be better. I've grown as a wife and mother in so many ways. I've always had goals that centered around my family but now they're so much more profound and can't be shaken by others opinions.

I've learned through this what God has been trying to teach us all and that is, life is short but eternity with Him is our ultimate goal. We have so much to look forward to when we realize God's ultimate plan for us as Christians. We're put here on earth for however long he gives us to do the task he instructed us to do. All of our paths and stories are going to be different. In these few short months I've learned more than I ever wanted to and have been through things I wouldn't wish on my worst enemy and I just pray God gets the glory for the everything I've shared with you in this blog.

I sometimes try to think of what our family would be doing this summer if cancer hadn't struck but I have no clue. It's totally taken over our lives so I don't know. I look at Nathan and try to think of how he'd be if he wasn't sick. I even try to remember how he was before cancer hit, but my memory fails me at times. Then I try to think of what we're going to do when his treatments are done and he's in remission and I can't think that far ahead either. What's it going to be like when I'm not going to the hospital several days every week? What's it going to be like when I can actually take him out in public places again without worrying about him getting sick? What's it going to be like when we can go to church again as a family? So many things I did every day all summer that I took for granted and crave to be able to do again. And will I get to attend his wedding one day? And meet his children? I don't know, that's up to God. But someday, no matter what happens, joy will return and this trial will pass and we all look forward to that day.

Being a mother has brought me an incredible amount of joy. I love spending each and every moment with Nathan and remember it just being him and me when he was born and then we welcomed Peyton and that just added to that joy. Despite what we've gone through as a family this year I still don't see Nathan as a burden. I'd bend over backwards for either of our children or my own husband for that matter. It's hard going back and forth to the hospital so much but Nathan is the one who is going through the treatment so my driving him and sitting there doesn't compare to what he goes through and I never forget that. I just want to see him better and watch him and Peyton growing up together and if that means I have to be at the hospital everyday to do that will then so be it.

I know a lot of people when their children are healed of cancer decide to never talk about it again and take their blog down. Some make it into their ministry and carry their stories out into the world. I truthfully don't know if there's any right or wrong thing to do. I write this blog now because it is therapeutic for me. I had another blog but shut it down because the content didn't matter to me much anymore.

I asked Sam what he wants to do when this is all done and he said "leave it behind and move on with life" and I actually agree. I'll leave this blog out here for others to read but the day Nathan's declared to be cancer free is when I'm going to 'retire' from this whole blogging thing. We'll tell Nathan all about his cancer and apraxia and let him use his story however he sees fit, but I agree with Sam when that day comes, I'm done. I don't think I want to talk about it or think about it or answer anymore questions about it. I have enough private journals around here that Nathan and Peyton will have more information about exactly what happened but unless God directs me to do otherwise (and truthfully I'm praying he doesn't) after this cancer is done so am I.

Tuesday, July 27, 2010

Keep the prayers coming

My little cuz is still in critical condition, in a medically induced coma on life support, so please keep praying.

I haven't talked to Nathan's nurse yet but will post updates on her brother when I do.


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Sunday, July 25, 2010

Fun Stuff

Ok I know I'm blogging a ton today and forgive me because I'm going so quick I know I didn't do much spell checking in these posts today. I'm just playing catch up because it'll probably be another week or so before I can do it again. I just wanted to share the fun things Nathan's been able to do.

Two weeks ago he went on his first boat ride. There's an organization here called The Littles Heroes that organize all sorts of fun things for children with cancer and their families and they have something called "Yachts of Fun." A man who owns his own Yacht took it upon himself to offer boat rides to children with cancer and their families. It's so nice, he even treats them to dinner! So Nathan was able to go!

We didn't know how him or Peyton would react to being on a boat. We frequent the lake now a days, because it's so warm and the lake area is so spread out. He can run and have a good time without necessarily being close to people. One thing we noticed whenever we go, is that he loves the boats. He's always pointing them out and yelling "Boat, Mommy boat" (yes he says 'Mommy' ALL the time now and I LOVE it!!!!) So we knew he liked looking at boats but we weren't sure how he'd like being on one.

As soon as Nathan and Peyton saw the boat they took off running (which was pretty scary cause we were on a pier mind you). They were jumping up and down with their little life jackets on so very excited!!! They loved every minute of it!!!!! The owner, Captain Ray, even let Nathan drive which was a huge highlight of the day and dinner was wonderful. We all just had a great time.

Yesterday we went to a picnic sponsered by the Oncology department at the hospital. The weather was wonderful! There were so many activities, face painting, Corn hole, water ballons etc. Nathan and Peyton especially loved the Parachute. Remember those from elementary school? We'd play with them in the gym and run under etc. Well I was very happy to see one there because Nathan's class he used to go to before he got sick had one and it was always his favorite and he hasn't played with one since. All of the adults kept flipping it up in the air and Nathan was running and playing with all of the other kids, throwing balls on top and just had a wonderful time.

I saw a little of the 'old' Nathan come out yesterday. I was kicking myself because I forgot my video camera but I got so much joy seeing him and Peyton running and laughing carefree under that tent, such a wonderful memory.

Dear Lord,

Thank you so much for the fun things we were able to fit in these last two weeks. I thank you for the organizations that arranged them and the fact that Nathan was out of the hospital and able to go. I pray for many more days like this.

Thank you for these times when Nathan is able to be around others who understand what he is going through, sometimes that 'common ground' is so nice.

Thank you for the laughter and smiles it brought him and us. I'm just thankful most of all for that parachute being there, knowing how much he loves that thing!!!!

In Jesus Name
Amen

Peyton

I know I haven't talked much about Peyton in this blog, only because it's totally dedicated to Nathan's cancer but I want to talk about her today.

Peyton is doing wonderful! Honestly I've heard horror stories about siblings and how they handle their sibling being sick. I was actually intrigued by this Ashton Kutcher video and his reaction to his twin brother being sick:


I've heard stories worse than this when it comes to siblings reactions, some kids are just really sad and can't figure out how their brother or sister can get sick, some feel guilty that it isn't them, some feel helpless and blame themselves for the illness, some get jealous because of all the attention their sibling gets, some actually blame their brother or sister and feel it's their own fault their sick and begin to hate them...the scenarios can go on and on.

So when Nathan was first diagnosed with cancer so many things swirled through my mind and at the very top was Peyton and her well being. We didn't know what we were facing but we were point blank told by our son's pediatrician that, "the journey was going to be hard and the road was going to be long."

It gave me a headache in the beginning (still does honestly) trying to figure out this new schedule of hospital stays and doctors appointments, most of which are unpredictable and since it was the winter, siblings were only allowed on the floor once a week for 3 hours a day because the risk for infection was too high. Even when Peyton came to visit she was given her own exam at the door, if she had any sniffle or fever then she wouldn't have been allowed on the floor.

I didn't know what I was going to do, most of you know that I made the decision to come home right when Nathan was born. Now though I was faced with a dilemma. Sam still had to work and though he works from home several days out of the week, those of you who've worked from home know that you can't get anything done unless someone is watching the children. Also I had to be at the hospital a lot and Peyton couldn't come. I called my mother and in conversation told her I was at my wits end because I didn't know what to do. I really didn't want to put Peyton in daycare on a whim, nor did I want to hire some unknown babysitter and even though Nathan was really sick I always had the perspective that I'm a mother of two not one and Peyton's well being was always just as important for me. She'd been home since birth changing that out of the blue wasn't something I wanted to do especially since she'd be doing it without her sibling joining her. So my parents called and volunteered to keep her WHENEVER we needed them too. I should note that my parents live over an hour away so this was a big deal, keeping her means she would have to stay the whole week sometimes or longer.

This was such a huge weight off of our shoulders. I was able to tend to Nathan knowing Peyton was being taken care of and surrounded by unconditional love and because my parents are always 'on the go' I knew she would be exposed to so many things which was also good so I was able to relax in this area.

Peyton seems to be adjusting quite well. We're pretty open about Nathan's illness around here. We don't harp on it but we try to explain it to them the best we can. For awhile it was pretty common for Peyton to play doctor on her dolls. She knows what medicine is now and she understands that Nathan gets shots. As a matter of fact she's the 'look out.' When Sam and I are preparing Nathan's needle she runs to alert him that a shot is coming, I'm not sure if he put her up to that or not.

The fact that Peyton is only two has a lot to do with her being so unaware, she understands a lot but her nor Nathan for that matter can fully comprehend the seriousness of the situation. I'm pretty grateful for that. I've heard stories of when older kids are diagnosed who understand what cancer is and what the outcome can be and have some heavy questions that their parents can't answer and me nor Sam have been put in that situation because of Nathan and Peyton's age and that's been a blessing.

Peyton brings me unspeakable joy. I love listening to her talk. I love watching her play with her brother. She pats him on the back when he cries and shares her toys with him. She's also into saying "I'm sorry" when she needs too, the other day she bumped him by accident and I heard "Sorry Nathan, Sorry" and it was the cutest thing because her voice is so small. I do get sad at times when I watch them play as I pray for God to heal Nathan, I wanted them to be best friends and I truly feel their pretty close. Yes they do fight like all siblings do but I can honestly say they play together really well and seem to enjoy each others company. When Peyton's away at my parents Nathan usually goes looking for her when he wakes up in the morning until I tell him she's at Grandma's and when Nathan is at an appointment it's common for Peyton to say "Mommy where's Nathan?"

I promise to share more on Peyton in the future from time to time because people do always ask about 'Miss Peyton' as she's so affectionately called now. But just wanted to let you know she's doing great!




Not to change the subject

Not to change the subject again but this story has totally intrigued me since the beginning. Shirley Sherrod has quickly become another person I truly admire.





Friday, July 23, 2010

Just keep praying

Two weeks ago my first cousin passed away. I wasn't able to make the funeral due to Nathan's appointments. It's the second family funeral i've missed this year.

Today I received a call from my mother telling me that my 15 year old cousin was hit in the head with a baseball bat and is in critical condition. His Dad is my first cousin (not the one that passed away), I've never met my little cuz and was saddened to hear this today, my heart is just really hurting as I cannot imagine what his parents must be feeling.

Dear Lord,

I'm sick of this year Lord I really am. There's been so much bad news. Lord I pray for Verdarrel, Lord I pray for a full recovery for him. I pray for you to comfort his parents through this difficult situation. Lord I don't know if he's saved or not, I pray that you heal him, please give him another chance to accept you as his Lord and Savior.

And Lord I pray for Eric's family, for his children, siblings and for his mother who had to say good bye. I know it wasn't easy, please bring comfort to them.

In Jesus Name
Amen


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Thursday, July 22, 2010

Please stop and pray

Hi I found out today that the brother of Nathan's nurse just had a severe stroke and is in the ICU.

For those of you who may not know, as Nathan goes through his treatments he's assigned a team made up of doctors and nurses. When he goes to clinic he sees the same people (something we really love and so does he).

Anyway Nathan's main nurse is a Christian (along with several others on his team) and she prays for him and encourages me in Christ. I can't fully describe how wonderful she is. Before we met her the child life specialist described her to us saying "she's just the kind of person you want to hug as soon as you meet her."

She means more to our family already then words can describe and I just want to ask you to please pray for her and her brother especially.

Dear Lord,

We come to you praying for Nathan's nurse. Lord we pray for comfort for her. She has such a heavy job working with sick children and she's been doing it for so long I know she's seen a lot, it's definitely the kind of job that has to go home with her at times. I pray that you give her and her family safe travel as she goes and tend to her brother.

I pray for her brother. Lord I pray that you heal him. I'm not sure if he has a spouse or children but if so I pray that you give them comfort and guidance. Nathan's nurse isn't one to bring up personal things so I know this is really heavy on her right now. Please heal him Lord and give the family all strength to get through this trying time!!!

In Jesus Name,

Amen


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Wednesday, July 21, 2010

More Posts Coming Soon

I promise to update soon. We've been extremely busy lately, everyday there's another appointment. Nathan goes to two therapy sessions along with chemo and eye appointments, dental appointments and we have to somehow find time to fit in a hearing test. And we also to work intensely with him everyday because of the Apraxia and I'm dedicated to squeezing quality time in with Peyton daily, making sure she's not left out in any way, so by the time I have a moment to blog I'm honestly exhausted, plus Nathan hasn't been sleeping well which is keeping us all up at night (except Peyton). But I do have a lot to share so as soon as I get time I'll write more!

God Bless!

Monday, July 12, 2010

Change

"I'm pretty strong but at times I still cry. I get alone in a room and I let it all out and after that I feel better until the time comes where I have to do it all over again..."

Nathan and I had the pleasure of sharing his hospital room with an amazing 11 year old boy named Isaiah. Now for those of you who don't know, the Oncology and Hematology departments are joined at the children's hospital. So a lot of kids there either have cancer or a chronic blood disease. Without getting into too much detail, Isaiah has a blood disease where he doesn't stop bleeding. It's hard to explain but it's very painful, not only does he have times where his blood counts are extremely low which always leaves him at a huge risk for infection but another danger is if he gets a cut he doesn't stop bleeding, and his blood flows differently which can be pretty painful. Now we as parents know our children are going to fall at some point but imagine knowing that if they get the slightest cut, it can mean an extended hospital stay. Truthfully the same goes for Nathan if his blood counts are low, which they often are and it's a very scary filling. Now let me throw a monkey wrench in this story. Isaiah is 11 and has a 21 year old brother with the exact same thing...his parents have been basically living in the hospital for 21 years.

Isaiah was so sweet, he immediately smiled and waved when he entered the room. And he was very caring, Nathan is given a steroid with his chemo. For those of you who don't know, steroids are something else to witness. I know we've all read about people on them but reading and seeing are two different things. Picture your child having a temper tantrum literally all day long. The least little thing is upsetting. For those of you who pride yourselves on being 'strict disciplinarians' well you can throw that crap out the window when your toddler is on a steroid, it doesn't work because they can't control what they're feeling, yelling, whooping, time outs forget it. Anyway that's what was going on on our side of the room and my heart went out to Nathan and Isaiah because I knew they weren't getting any rest. Finally a room opened up and Nathan was able to be moved to his own room and when I went to say goodbye to Isaiah and his mom they literally begged us to stay (no kidding). Isaiah told me "I don't mind, I really don't, I actually would like to come play with him when I'm feeling better." His mother was praying for Nathan and they showed so much compassion.

It was funny because Isaiah's mom was blown away by how calm I was with Nathan as he was screaming and crying from the steroid, she said "I admire the fact that throughout all of that you kept a calm even voice." LOL truthfully it probably sounded better than it looked (she was on the other side of the curtain) and I wish I could pat myself on the back, though I think a lot of the calmness was due to the fact I was in the hospital and not at home where I could 'let loose' and yell or cry lol. I told her how much I admired Isaiah for how he seemed to be handling his illness. It changes all of us and in some ways I don't want to be who I was before this whole ordeal began.

Isaiah's mom told me that no matter how strong she gets, she still breaks down and cry and after she gets it out she feels better. And truthfully the same goes for me. I feel stronger to be honest with you. This cancer has made me stronger as a mom and as a wife. It tore me apart so much to hear this diagnosis that I don't think much else can phase me (though I don't want that statement challenged either). I had a ton of self doubt as a parent and truthfully it used to really hurt my feelings when I'd get questioned on my son's speech and him being 'different.' Nathan's Oncologist said that cancer will change our family, whether our child is a survivor or not it will change us. I'm sure that change isn't complete yet. But I'm slowly starting to become the parent that I always prayed to be. My son isn't perfect but he's absolutely perfect for me and honestly I wouldn't trade him for anything in the world. I know based off of God's word that there's a purpose in all of this madness. Psalm 139 makes that clear. No matter what happens this isn't without purpose. My prayer is that Nathan is healed and will one day stand in front of people and tell them what God did for him. I want to thank people who've always seen the potential in him, who were able to look past his handicap and see Nathan. I want to be like them because they've meant so much in our lives. And truly I look at it different now, if all people see when they look at Nathan is that he's not verbal, well that's their handicapp and their problem.

I had a long talk with Isaiah's mom too. The one thing I'll miss when this is over is the people I've met. Lately when I'm outside of the hospital I feel like a fish out of water. This is something that's shared across the board with other parents of these children. For some reason when we arrive on the hospital floor it's such a mixed feeling of emotions. On one hand there's sadness that we have to keep coming back on the other hand there's a certain indescribable comfort in being around other people who truly 'get' what the other is going through and feeling. One mom asked me, "does this all still feel like a bad dream to you or is it just me?" No, it's all of us. It's a very different environment. There's washers and dryers and everyone pretty much knows everyone else. The nurses, doctors, admins, LPN's, janitors, child life specialist - all become family. Nathan runs and hugs them and they usually kiss the top of his head.

And I'll share this too, I'd already mentioned before that Nathan was diagnosed with Apraxia of speech in April. But even before the cancer diagnosis he's always had speech issues and as parents we used to have the hardest struggles dealing with outside people. Except for a few close family members, most people didn't know how to react to that..."He's not talking yet???!!!!! Is he Autistic???? Does he have behavioral problems???" It was so hard as a parent especially when faced with parents who's children did everything 'early' or 'on time' and they could not grasp the concept that children are different. And I can't begin to tell you the criticism that we faced because of it. Though we were actively getting Nathan tested and help, we were always questioned on "why we weren't doing anything?" (very insulting) We were told what he needed, etc. etc and though all of the advice wasn't bad it was still a struggle. There were only three types of people who were understanding; those who had a child with delayed speech, those who truly understood that God made all of us different and those who were around Nathan for extended periods of time and realized despite his language delays he excelled in every other area.

I get a little emotional at times because when Nathan went into the hospital on January 14th except for close family members it was the first time he was around people who treated him 'normal' from the get go. It's as if they didn't even notice he had a speech delay or didn't care. I remember his first experience with the child life specialist and she was showing him how to use syringes on a toy doll they have and she talked to him just like she would talk to any other child. She didn't slow her speech, or talk extremely loud, or repeat herself over and over, she picked up really quickly that Nathan may have a speech issue but nothing else was wrong with him (except cancer of course). But I always remember her joking saying it only takes one time for Nathan to get something.

Nathan's speech therapist is the exact same way. She's been so patient and caring and he's making huge strides, this last time he was at the hospital for chemo the nurses were blown away at the things he's starting to say. That's another thing that's kind of fun is sharing these precious moments with others. Not many people can be around as he makes his progress so it's kind of exciting to go through this speech process with them. A stranger sees he isn't talking and that's all they can see but they see how far he's come and they're all his cheerleaders :-)

Lately I've been reading Psalm 139. I can't get enough of it. King David is just reveling in the fact that God knows him and it really makes me think of Nathan. Verse 16 is especially precious to me: "...All the days ordained for me were written in your book before one of them came to be." It just reminds me that the Lord formed Nathan for a purpose. All of his speech issues and this cancer, it wasn't hidden from him. Verse 15 says: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body."

Dear Lord,

Despite these circumstances I still have so much to be thankful for. I can't thank you enough for the people we've met. I'm so thankful for the people you brought into our lives. I thank you for our 'extended family' who spend so much time with Nathan and see so much in him. I thank you for carrying him this far. So far we've been getting good news about his treatments working and Lord I'm so very thankful for that. Thank you for this hospital being so close. Thank you that he spends a lot of time at home especially since we know families who spend a months at a time in the hospital.

Lord thank you for my family and friends who've rallied around us. Lord I thank you for the lessons learned, I hate we had to learn them this way and I secretly wonder if this is the only way in which we could've learned them.

Lord I pray that you continue to give us strength and wisdom and when I say 'us' I mean all of the parents going through sickness with their children. It's rough and strength is really needed. I'm so thankful I serve a God like you. I know you understand our suffering and I know you're near and that you know us so well. You know Nathan better than we do and I'm so thankful for that. When he's upset you understand his pain, when he's happy you share in his joy, when he has fear you calm him down. Lord thank you so much.

In Jesus Name
Amen





Saturday, July 10, 2010

And then there were three

I was saddened to find out that one of the ladies who went on the spa day with me in May lost her child. Please keep her family in your prayers.

God Bless

Thursday, July 8, 2010

Roomies

I usually call the hospital the day before admittance to request a single room for Nathan. One of the LPN's tipped me off that people do that all of the time so I joined the ranks of parents who request rooms. For the most part we've been successful in our request but this last time we got a roomie which is unfortunate. And I'm not saying it's unfortunate because we have to room with someone, it's unfortunate that the floor is so busy right now, meaning so many children are here sick with cancer.

Being in a double room here is different, if you're in the back it's pretty private if you're in the front there's no privacy. The curtain layout is wrong, so anyone coming in the room can see you and if your roomie goes to the bathroom they can see you. Usually when we shared we were in the back, but this last time we ended up in the front. So I got creative and pinned the curtains together and it was really private. I was quite proud of myself. The nurses and I were laughing cause they'd never seen that done. We parents get really creative. It's not uncommon to see beds moved around etc. (we move those too:-) and the staff is really nice about us rearranging things.




I may be biased but children with cancer are some of the sweetest children ever. It was late and Nathan kept sneezing and the little boy kept calling out 'God Bless you' it was funny cause I didn't even realize he was awake. They're not perfect, I met a few tyrants but for the most part they've been very sweet.

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Monday, July 5, 2010

Independence Day




Ok so we had the best fourth of July ever!!!!!!! We couldn't go anywhere to watch the fireworks because Nathan can't be around huge crowds so we stayed home, but our neighbor came over to ask if we would mind if her and some of her friends set off some fireworks in front of our houses. I was so excited and told her I would actually love that since Nathan and Peyton won't see a display otherwise. (I know it's illegal, but I didn't buy them!) Their display was amazing!!!!!!!! In my 31 years I don't think I've ever seen a better display of fireworks. They'd bought almost $2000 worth (no kidding) and set them off right in front. We have a storm door so Nathan and Peyt were able to watch without even going outside! They were cheering and jumping up and down both were happy which made Sam and me happy, Peyton kept yelling "did you see that?." All our other neighbors were outside watching it was great! And to make this day even greater I awoke to Nathan calling me Mommy!!!!!!!!!!!!!!!!!! For those of you who don't know, it's a huge deal because with apraxia he had to work his way up to it and it was the first thing I heard when I woke up Sunday morning. What a wonderful way to start the week!


Dear Lord,

Thank you so much for a wonderful fourth of July. Despite the fact we weren't able to go to any picnics it was honestly the BEST I ever had just spending time with Sam, our children and in laws. Lord thank you so much for Nathan calling me Mommy yesterday. I couldn't have got a better greeting from anyone else! Now I get to hear BOTH of my children saying it and it's such a blessing, I've waited over three years to hear Nathan say it and it was well worth the wait!

In Jesus Name
Amen

Thursday, July 1, 2010

God Bless this little girl

Dear Lord,

A beautiful little girl has died of cancer today. She is now without pain and resting with you. But oh Lord please bring comfort to her family. Lord please surround them with your love, surround them with people who will be uplifting in their words and actions. I still know you have a purpose in all of this, but even knowing that doesn't stop the pain we feel.

In Jesus Name
Amen


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