From Mom - The Days of Our Lives

The Days of Our Lives

I thought I would let you peek through our livingroom window to look at a day in our lives.

I awake at 5:30 AM so that I can relieve the person who has slept in Rachel’s room all night.  They make sure that she does not trip on her way to the bathroom, that she does not wonder downstairs, and that she takes her meds throughout the night.  I have been relieved of night-time duty since I take care of her, the boys, and the household chores from 6 AM until 11 PM.

I give her the meds and lie down beside her for another hour, listening to a sermon on my ipod and gazing at her.  Meds, getting Ra dressed, getting myself dressed takes more time than you would expect, but we finally get downstairs (usually after neatening her room and doing some wash).

There a a lot of hugs, kisses and smiles as I make her a breakfast that we both know will cause her to throw up.  She sleeps sitting up and I keep going over to her to look to her comfort or walk her into the living room.  But first she enjoys working on her 1000 piece puzzle between naps at the kitchen table.  Everytime she awakes from these frequent naps, she smiles at me as though for the first time that day.  I often wait to clean up the kitchen so that I can do the puzzle with her. 

Between naps and the puzzle, the morning passes for her as I make breakfast for the boys, stop fights between them, clean the kitchen, fold laundry, and gaze at Rachel.  I like to sit beside her on the couch, holding her hand as she sleeps.  I do a lot of gazing.  Time passes too quickly.  I want to hold on to each second with her.

Because of the women in my church, I merely have to keep the house neat, as they do the heavy cleaning each weekend.  I am grateful, so grateful for them.  Nor do I have to worry about dinner meals, as her church and my church bring meals often through the week. 

Often in the afternoon, one of Rachel’s close friends comes over and they keep her company.  I may sit and enjoy the company or I may get some things done.  Betty Ann comes every day.  If it was not for her, I would not be able to hold up as I do.  She is so strong.

It is nice when someone takes a boy or two for the day, but if this does not happen, I let them do what I would rather not let them do—TV!  I have to keep my mind and efforts on Rachel.  I sit with her often, I gaze at her more.  I hold her in my arms and feel the bones through her flesh.  She is as thin as a wisp. 

At night, she and I, along with Aunt Betty and Jullie, sit and watch HGTV or Auction Hunters.  We talk while Ra naps.  We each want to sit next to her and feel her close to us.  We gaze at her. 

When I leave, at 11 PM, someone stays through the night with her, gazing at her. 

Soon she will be home with Jesus.

We have Rachel today; we will not ruin today by worrying about tomorrow.

Barbara

From a Family Friend

This is a letter from "Uncle" Jim about his wife Anna who found out about 2 months ago that she had stage 4 cancer.


This is Jim, writing from my sister Kathy's Facebook page. I am overwhelmed with gratitude as I sit here and read the notes from all the people who are praying for my dear wife. I have never experienced this kind of pain before, though 50 years ago this past April, as an 11 year old boy, I watched my father die with this same disease. That was hard...this is devastating. I have tried not to question God in all of this; I recognize His sovereignty and accept His will for Anna's life. But I must admit that I don't even come close to understanding. I thought perhaps He was waiting for me to lift the ban on visitors so that my immediate family and Anna's siblings could come and see her. I did that yesterday, much to the chagrin of my precious wife. I could tell she was agitated by all the commotion and sensed a bit of displeasure with me for having violated her wishes. All four of her sisters got to see her and say goodbye. My son and daughter and their children got to say goodbye. My three sisters have seen her and two are with me even now, lest I be alone when the time comes for Him to welcome her home. This morning, reading from the Daily "Crouton", as Pastor Marks so affectionately called The Daily Bread, I read about a Matter of Perspective. The last paragraph says, "When we simply cannot understand why God allows circumstances that threaten to overwhelm us, it is good to remember that He has our good and His glory in mind. If we can say, "Father, please enable me to trust and honor You in this situation," then we will be in concert with His perspective and plan." Anna's concern in all of this, from the beginning until the point where she could no longer communicate clearly, was "How am I glorifying God in all of this?" I can tell you that all of the perceptions you folks have of my Anna are accurate. She is the epitome of the Proverbs 31 woman. A prayer warrior, a giving, caring woman who dedicated her life to helping people through times like she is presently going. When God commanded us to "Be holy, for I am holy.", to the best of her ability she heeded His command. I know no one who is as concerned about being holy as much as she is. Even now, in her distress, she wonders how she can glorify the Father in heaven. I have no idea what He has in mind for me. Anna has been part of my life since July of 1964, weeks before my 15th birthday. When she finally graduates to heaven I will be relieved for the end to her suffering, but my nightmare without her will continue on from the nightmare that I'm enduring right now, watching her suffer. And still, I trust Him...He who sent His only Son to die for me. For those of you reading this who have not trusted your life to Christ, I beg you to do that right now. I couldn't care less what church affiliation you have. Religion is man reaching up to God...Christianity is God reaching down to man. I teach my AWANA children how simple it is to be saved...as simple as A,B,C. First, you have to admit you're a sinner. If you're not a sinner, you don't need a Savior. But God's word tells us that you are a sinner. (Romans 3:23) Then, you must believe that Jesus is who He said he was...the Son of God. But that's not the end. Many think the C is confess. But that's taken care of when you believe. The C is Choose. My Sparkies love this story. Let's pretend I have the ability to shut you in a room that is totally devoid of light. On the other side of the room is a door that you can get out. But there are numerous traps that will take your life if you try to get out in the dark. Before I leave you, I place a flashlight in front of you. You choose to get out of the room on your own, rejecting the gift that I gave you. You die. Don't blame me! I gave you everything you needed to get out, but you rejected it. God gave you everything you need to enter Heaven. Accept His free gift of eternal life right now. To not accept Christ is to reject Him. The best way to honor Anna in all that she's going through is to ask Christ to save you. I love all of you. Please continue to pray for God's mercy in Anna's struggle right now. God bless you all.



Please pray for their family!! "Aunt" Anna will be with the Lord soon.

What Now??

So Rachel was talking yesterday about the fact that she has terminal cancer and was not expecting to be here on Earth this long. To be honest, we kinda thought she would be long gone by now but God has other plans for her. So now, Rachel needs something to do! She is more awake, aware and in much less pain then she was a month ago. Granted, she can't keep any food in her for very long but something it getting into her body and she is able to survive on that amount. So, any ideas on what can keep her active in serving the Lord?? Here are the things she can't really do ...read for very long, write, type, see, stay awake for long BUT she still wants to have something to do and some way to serve the Lord.

Another thing that Rachel was talking about is that because she is not able to really see/ read very well or write she can't do her bible study like she use to. This was such a special time for Rachel each day and really grounded her to face the rest of the day. I think Satan has been taking advantage of this missing part in her life to start filling her mind with depressing thoughts. So, we also need to come up with creative ways for Rachel to do her Bible study each day.

One thing Rachel does enjoy doing with friends and family is to sit around the kitchen table and work on puzzles. Rachel has completed a number of 1000 piece puzzles with every ones help and she enjoys passing her time with us that way. yesterday then finished one of the puzzles and Mom suggested, spur of the moment, that they run out to Barnes and Noble to get another puzzle. Rachel and Mom drove to Barnes and Noble, luckily Rachel was pro-active and brought a throw up bag in which she used in the parking lot of Barnes and Noble:-( went in and got their puzzles and then went home. It was a braze move for Rachel to go out and something that she does not do often but I think it helped cheer her up:-)

So, for now we are in the waiting zone of life for Rachel. I think right now Rachel needs a purpose for the rest of her time here. Any ideas??

A prayer from Reva for Rachel

Dear Lord,

We marvel at human grit, determination and steadfastness infused by You into Rachel, who is hanging on, still here with us. We are in awe as her family rally in shifts to be with her 24/7 (the 24/7 crew), administering meds, gently watching over her, standing guard to make sure all her needs are met. What love is this! We see Your Outstretched Right Arm as You Strengthen Rachel for yet another day, and strengthen her 24/7 crew for yet another shift. And in the dawn of each glorious new day, we rejoice anew that Rachel will experience it and for this we say “Thank You”.

We know You have assigned Your Angels special guard duty over the Arnold Home. They do not sit, but stand at attention, in the driveway, on the front porch, in the foyer, in the living rooms, kitchen, each bedroom and bath, laundry rooms, sitting areas, on the back deck, on each side of the house, they stand with eyes travelling back and forth over their assigned domain, breathing new energy into hands too tired to do anymore, new wakefulness into eyes heavy with long overdue sleep, and new hope into distressed minds.

This is what a family taken to the edge looks like and this is the help You provide in their hour of need. They are exhausted but Grace filled, sorrowing but Mercy renewed. The guardian angels look in the same direction at the same time. What are they gazing at? As they kneel as one in humble submission, we know. We humans may say “Look! I thought I knew how many were in the Arnold/Edgar home, but I see a Man walking in the fire with them, and He looks like the Son of God.” (paraphrased Dan 3:25).

And in all of this You have allowed us to be a witness and a participant in Your inclusive classroom of prayer and service. You are an awesome God!

We Thank You and We Praise You. The minor tremors from an earthquake we just experienced remind us of Your Mighty Power and Outstretched Arm. Thank You for keeping us safe. Thank You for blessing each of us and our families.

May we focus today on what really matters and rely on You for everything including the ground we walk upon and the air we breathe. We bless Rachel and the Edgar and Arnold Families anew. May they never forget we are praying, we rowers, soldiers and watchers for their sustenance and strength in You. We do this because we know the secret:

That the prayers of the righteous availeth much.

Amen and Amen!

Seeking the Lord.

Many have been asking for an update and so I will give you one...sad as it may be.

Rachel continues to decline and our hearts continue to break. We never pictured ourselves to be at this point or at the last point we were at or the point before. We pictured Rachel to be healed... we believed that she would be healed! we rallied ourselves each time the news was bad that it was just a set back and things would get better. That has not been the case but I would not give up those times because it gave us focus and a togetherness that we needed.

Rachel has lost so much weight. She struggles with days of throwing everything up including any water that she drinks and the medication that she takes. But other days she is able to eat small amounts of food and keep it down. We live moment by moment knowing that at anytime the Lord could take her home with Him. We actually question why He has not taken her home yet. This is beyond painful to see my sister starve to death!!! Bones stick out everywhere. I shiver when I touch her because all I feel is cold skin and bones... no fat on her... her eye sockets are sunken in and her check bones stick out. It is painful to watch her sleep because she takes two shallow breaths and then pauses breathing for a solid 30 seconds before taking another two shallow breaths.

Other troubles have come our way too... actually they have been here but because of Rachel's sickness things have gotten worse with Dane. He spends most of his days watching his mother die. He fears her death because he feels life she is the only one who loves him unconditionally. It is not true because we all love him but he is a strong willed child!!!! Very strong willed!!! Over the top strong willed!!! and he is going through something that us adults are having a hard time dealing with. He is lashing out in anger and when he walks in the room... he is demanding every ones attention because of his behavior. This has caused all of us frustration and has caused Rachel much stress. 

We need prayer in this area of Dane! Prayer that we will learn to unconditionally love this unlovable child right now!! To see through his anger and to know how to deal correctly with him. That God will teach us patience with him! That God will show us our own sin and our expectations that are not far to put on this 11 year old boy. We expect Dane to behave correctly because his mother is dying. Our anger is sometimes enraged because he is not acting the way we expect him to act. Pause!!! We expect him to act like an adult but he is not. We are still to hold him to a standard that is acceptable and set up boundaries that are healthy for the whole family... that is for sure!!! but!! we need to check our anger because that is our sin in the situation! We have no right to get angry at him! We are to have him follow through with the boundaries that are set up and to hold him to them in LOVE!! God's love!! Right now that is hard because he is being so unlovable!

Lord, please teach Mom, Dad, Rob, Rachel and myself to love Dane through your power and to hold him to the boundaries that are set up because he needs them.

The boys have been enrolled in Erial Community Christian School right down the street. This is a huge relief for us to now that they will be going to school and that Mom does not have to home school them. I think they will do well. Rachel was able to go to the school and talk with them about the situation with the boys and her condition. I think the teachers will all be understanding and take both the boys in and love them!

Mom is frazzled and needs constant prayer. She is in charge of giving Rachel her medication which is almost an hourly thing. Mom is also working with the boys and keeping the house flowing. She has so much on her shoulders right now. I wish so much that I could take on some of the burdens but I am dealing with the shop finances and learning their personal finances and taking care of my three little children. I am frazzled!!

Dad is also doing so much for Rachel! He stays with Rachel most nights to give her the medications and to help her when she gets up, is disoriented, or throwing up. He is amazing! There could not be a more selfless father!!

I question why we are going through this but I know that God has a purpose! Many of you have told us how just reading the blog is challenging your walk with the Lord and drawling you closer to Him. I pray for you as you read this. Feel our pain!!! Let it lead you to go before the Lord and ask Him why we are suffering like this but most importantly talk with the Lord over your relationship with Him.  Gain an understand of Him so that if life were ever to throw you for this type of twist you would be able to go back to the Lord and find strength in Him to face your day.





 

Unconditional

This is from Rachel. She no longer can see very well and can not type because she is too tired. Reading has been hard for her. - Betty



I don't know where to start, so much has happened since the last time I updated. Though sometimes on facebook it makes it seem like I am doing well, there are days of excruciating pain and I am afraid of laying it out there for everyone to see because somehow it makes me feel like a failure. But then there are other days, that if you had to ask me if I thought I were dying I would laugh at you and say "no, I am in perfect health". The feeling that is most overwhelming me right now is fear itself. Not fear of dying but the fear of pain and that this time will never end. I have some of the best dr.s in the area and they have no answers to give me about how long this process will be. They give me anywhere from tomorrow to 6 months which is a daunting prospect when you think about it.

 These are the times that I cling so dearly to the word of God especially the Psalms. Last night over a puzzles, my Aunt Betty and I  prayed Psalms 73 Psalms 91 and Psalms 121 which was followed by one of the most restful sleeps that I have had in months. You'd think that since there really is no one but God and I that I would turn to Him at all times but that is not the truth! I still struggle with putting God first, though I have seen his miracles in my life every single day. What keeps me coming back is the unconditional love and acceptance that I feel when I am close to Him. no pretending that everything is OK.

Right now my one first and only thought is what heaven will be like. First to see His face and to know why all this had to happen. second to see the splendor that He promised us in the Bible when He told us that He was going to go and prepare a place for us. If He could go and create the world in 7 days and He has spent the last 2 thousand years preparing heaven for us...think about how awesome it is going to be.

From Julie - All for the Glory of God

All for the Glory of God

Sometimes we may question why we go through hard times. I know I certainly have questioned on more than a few occasions why Rachel is going through this - why does she have to be sick? Why does she have to suffer? I have been listening to a great preacher Allistair Begg recently and reading a few of his Bible Studies. I first fell in love with his accent back in college and he still has the power to make me swoon...but the most important part is what he has to say of course and this week I read something he wrote that permeated deep into my heart. Here is what he said about the Glory of God (Taken from Psalm 107):

God's great design in all His works is the manifestation of His own glory. Any aim less than this would be unworthy of Himself.

But how shall the glory of God be manifested to such fallen creatures as we are? Man's eye is not single in its focus; he always has a side glance toward his own honor, has too high an estimate of his own powers, and so is not qualified to behold the glory of the Lord. It is clear, then, that self must stand out of the way, that there may be room for God to be exalted. And this is the reason why He often brings His people into straits and difficulties, that, being made conscious of their own folly and weakness, they may be fitted to behold the majesty of God when He comes to work their deliverance. He whose life is one even and smooth path will see but little of the glory of the Lord, for he has few occasions of self-emptying and hence but little fitness for being filled with the revelation of God. They who navigate little streams and shallow creeks know but little of the God of tempests; but they who are "doing business on the great waters"1 see "his wondrous works in the deep."2 Among the huge waves of bereavement, poverty, temptation, and reproach, we learn the power of Jehovah, because we feel the littleness of man.

Thank God, then, if you have been led by a rough road: It is this that has given you your experience of God's greatness and loving-kindness. Your troubles have enriched you with a wealth of knowledge to be gained by no other means: Your trials have been the crevice of the rock in which Jehovah has set you, as He did His servant Moses, that you might behold His glory as it passed by. Praise God that you have not been left to the darkness and ignorance that continued prosperity might have involved, but that in the great fight of affliction you have been qualified for the outshinings of His glory in His wonderful dealings with you.

My favorite part of that little devotional is when he says, "He whose life if one even and smooth path will see but little of the glory of the Lord, for he has few occasions of self-emptying and hence but little fitness for being filled with the revelation of God". Well that surely means that Rachel has had many many opportunities to see God's glory and how glorious He is! And we have only a glimpse of His glory here on this earth - think of how amazing it will be when we see Him face to face in Heaven? it is too much for my small earthly mind to even comprehend! Praise the Lord He has so much better in store for those who Trust Him and give their lives to Him, I personally can't wait until I get to see what He has - I do hope the rapture comes soon!

Now for an update - Rachel had a really good week for the most part, she was feeling pretty good and very lucid. She was able to have visits with some close family and friends and really enjoy the time! We are all so grateful and hopeful to see this improvement in Rachel, considering how hard last week was for her. However, after such a good week, on Friday Rachel went to the hospital because she was having a lot of stomach pain and wasn't able to keep anything down. They took x-rays and it turns out Rachel had a very irritated bowel. Because of this, they told her to stick only to water and tea for 24-48 hours to let the irritation calm down. Now normally, this would not be a big issue for most of us (in fact most of us could probably benefit from 48 hours without eating), but with how think Rachel already is, it is not good for her to go that long without food. Please pray that the irritation calms down completely and Rachel is able to eat normally and keep all of her food down. Also pray for continued nights of good sleep for her and wisdom for the hospice nurses that come to see her regularly. We continue to trust the Lord and pray for Rachel's complete healing!

Cancer is a Roller Coaster

The last couple of days have been so up and down for us emotionally because Rachel has been so up and down physically. She went from being very exhausted and out of it (forgetting what day it was and having a lot of hallucinations) most of last week, to having an amazing night with me on Saturday night (completely lucid every time she woke up), to having a horrible night full of pain last night. It is so hard for us as her family to watch her go through these extremes. One minute you are grieving because you feel that it is close to the end, then the next rejoicing because she is doing well and seems to be back to her old self again. I have tried to learn to take it in stride and as Rachel says, "I will have good days and bad days". I know the Lord will take her when He is ready and not a moment sooner. I pray constantly that time will be when we are old and grey, but I also know that He knows better than I and will care for her better than I could ever even imagine. Rachel has a verse posted on her wall that says, "For I am now ready to be offered, and the time of my departure is at hand. I have fought a good fight, I have finished my course, I have kept the faith. Henceforth there is laid up for me a crown of righteousness, which the Lord, the Righteous Judge shall give me at that day and not to me only, but unto them also that love his appearing." 2 Timothy 4:6-8. I just love that verse because it is so true in Rachel's life! If our Lord choses to bring her home tonight she can face Him knowing she fought the good fight!

Rachel is now on many different medications - for pain, for nausea, constipation, etc. It is quite a regimen each day and night and requires a schedule and alarms to be set to ensure we give her the correct medication at the correct time. This means that now Rachel basically needs someone with her around the clock to ensure she is taking the correct dosages of medication. This involves sacrifice and has me thinking a lot about sacrifice in the last few days. Sacrifice is how we show love for one another is through sacrifice. Of course the ultimate sacrifice was God giving his only son for Rachel (and for all of us) in order to be the propitiation for her sins and restore her relationship to our perfect God, because her sin separated her from Him. I believe because God has given us such a great example of sacrifice, we as her friends and family want to show our love for Rachel by our sacrifice for her during her time in need. Her family has sacrifice time in order to be with her, sleep in order to take care of her, and comfort in order to try and bring her comfort. And if you asked any of us, we would do it for another 20 years because of how we love Rachel. This is not because of any of our own doing, we are all selfish to the core, but by the grace of God, His love is poured out through us. Then you have Rachel's amazing friends who have sacrificed nights of sleep to pray, sacrificed time to take care of the boys, time to come sit and pray with Rachel, sacrificed time to cook meals for the family, and oh so much more that I can't even remember. There are also people who don't even know Rachel very well that are sacrificing their time to pray for Rachel or make a meal.

All of this has shown me the importance of family (and I consider friends family in many cases) and how blessed we are to have a huge, amazing family. I feel bad for people who don't have a big family or who aren't close with their family, because knowing your family will be there with you through anything is the most amazing thing! It makes me want to have a huge family of my own to continue the legacy! Rachel and I were just talking about how God has worked everything out perfectly for her during this time. He literally worked in hundreds of people to initiate them being here to support Rachel this time. Think of all the coordination - it's an amazing thing to ponder! Even in Rachel's family, He has worked the circumstances out in an incredible way - for starters, about 6 years ago, Rachel and and Rob built a house with her Mom and Dad. None of them knew at the time, how much Rachel would need them today. Also, though not what I would've planned, God gave me the chance to live here with Rachel about a year ago. What a blessing it has been to get to spend every day with my best friend and to get to help take care of her as she is sick. Rachel's siblings are also close by and are able to come and help a lot. The Lord also led Rachel to our church, FAC, a few years ago and Rachel made amazing and lasting friendships there. These friends have proved to be the most amazing friends that Rachel could ever ask for. I could go on and on, but do you see how God has worked everything together for good? It puts a smile on my face as I think about how He loves Rachel so much that He interwove every single detail of her life to make it perfect at this time.

Now for a couple of specific prayers - pray that Rachel will be able to stay pain free and that the hospice nurses will have the wisdom to know exactly what medication to give her to keep the pain away. Also pray that she might be able to eat some more solids and to keep them down. As mentioned above, because of Rachel's medication she needs someone to stay with her each night to administer the meds. We have worked out a rotating schedule, but with full time jobs, families to take care of, and other responsibilities, losing an entire night of sleep is rough - pray that we are able to get the sleep we need have extra energy to get through the day. Thanks again for everyone who has sacrificed and prayed for Rachel - we are all eternally grateful!

--
Jules