Four Years

The dogs woke me up at 5:30am this morning.  The sun streaming into our bedroom is their alarm.  I really wanted to sleep longer.  Normally, I am not so keyed in as to what day it is so immediately upon rising but today I knew.  I saw the time and thought that four years ago, Samuel had only 28 more minutes to be with us on Earth.  It was at about 5:30am that he woke me up and said so desperately that he needed me.

At 5:39am as I was pouring the coffee into the French press, I noted that he now had 19 minutes left.  About this time four years ago, Mark and I were at his side and he was drifting between here and Heaven, sometimes playing with us for the last time, and sometimes mumbling words in a language we could not decipher.

At 5:50am as I was pouring my second cup of coffee, I noted that he had only eight minutes left.  Eight minutes was probably the amount of time that elapsed between the first seizure that I am sure removed his spirit from his body, and the second seizure where with my hand over his heart, I felt it finally stop it's seemingly endless struggle to keep fighting to stay.

At 6am I thought about how I had lived my first two minutes without him.  We were still talking to him as if he were with us knowing that the spirit may linger to listen and see.  We removed all the medical horrors from his body and dressed him in clothes he would have liked, incidentally, it was pajamas I had two sets of.  One set is saved, one set was worn for the last time ever and is no more.

At 8am, now two hours and two minutes after he went to Heaven, I was sitting in the bathtub thinking it all over.  The way it was, how bad it felt, yet how relieved we were that he had finally gotten out of that body, such impossible emotions to reconcile.  I believe that four years ago at 8am I was also sitting in the tub, in shock and in relief yet in a hurry to get in and get out before the man came to take his body away.  I wanted to sit with him for every last second I could but I also wanted to be cleaned up and dressed for when the man arrived.  I wanted to touch Samuel's body for what remaining time we had left with it, to memorize it, for all the good that did, but I did it anyway because I knew that all too soon all that would remain of Samuel were his things, and a seemingly endless supply of pain.   How was it possible that just three days before he was sitting on that couch coloring me a dozen pictures and for a few hours, we were able to pretend that the inevitable wasn't going to happen?  How was it possible that just a year before that, we thought we had seen an end to the worry of a relapse?  How did it all go so viciously wrong?

I want you to know that in the realm of the soul, there is no remedy for such agony.   There is no thing in this world that can even remotely make this okay.  To watch, no, to help the purest love you've ever known in your life die after you've spent four years trying to help him survive all the while fighting screams inside yourself to do the exact opposite; it's an indescribable torture.

And yet...

As I sat in the bathtub at 8am this morning, I realized that it had been 4 years and two hours and two minutes that I had lived without Samuel.  It was in that revelation that the sorrow for this day turned into praise to God.  Praise because I have learned to live without Samuel and by live, I mean in the abundance that Jesus speaks of in John 10:10.  Life isn't just "hurry up and get done" but instead there is much joy even in the midst of sorrow.  I can live with joy because I know that through Jesus, Samuel also lives and his joy is fully complete.  Not the shadow of the joy we experience, but the fullness of joy.  By God's mercy and grace, I have experienced the evidence of Samuel's life and joy in Heaven as well as his continued concern for us on Earth.  Our love and devotion to each other remains well intact even if Samuel does not inhabit a physical body anymore.  And thus I can attest that only Jesus is the remedy for the horrors we endured throughout Samuel's life, as well as the torturous end to his life and the loneliness we still encounter because he is no longer physically here.  That said, I must also strongly testify that it was my choice to allow Jesus to mend my soul's woes spiritually.  It did not just happen. It took a great deal of effort, sorrow and tears.  It was not an easy process but it was a process that was well worth the effort and continues to be.  It's a process that I will continue on some level until I am with Samuel again.

To have chosen to remain in a perpetual state of grieving for the rest of my life would have taken no effort at all and thus no actual healing would have taken place either.  The wound today would be just as raw as it was in 2008.   I also believe that had I rejected the comfort and healing offered by our Savior, Samuel would not be allowed to "visit" me as he does.  It wasn't until I fully gave all of the mess of Samuel's life and death to God as well as the reins to my own life that He began to let me "feel" the glory of Samuel in Heaven.  Those "gifts"from Him healed my soul like nothing in this world ever could.  I continually chose to hang on to them when sorrow wants to creep in or when a walk down a tribulation lane seems inevitable.  I hang on to them on days like today and as you see, they lift me out of the pit of sorrow so I never reach the point of no return.

For the first year or so after Samuel departed for Heaven, we found fun little surprises he had left behind but those little tangible gifts are not more.  You know, things like the banana peel thrown behind the stereo speakers, a book that was discovered with his handwriting in it after all the rest were packed away, or the best one, his headprint in the wall from where he used to play dinos with Anna.   I think we have finally reached the end of these things until someone rips out the drywall all the way down to the floor in our room where the doorknob put a hole in it and Samuel and Anna thought it was great fun to fill the hole up with toys that would fit.  Ode to those days!  

Similarly, one might think that we have reached an end to the lessons he taught us from birth to death but thankfully this is not the case.  I believe the lessons I have learned, and continue to learn from Samuel will continue until I am reunited with him in Heaven.  For these things I am so grateful.   It would take me another hour or two to list all the amazing things he taught me about myself, about being a mother, about trusting my gut, about trusting God, about love, etc, and you can read the archives of this blog and find many of them in it.  However, again I must stress that a great many of these things were learned after and/or because he died; because I chose to allow Jesus to mend my heart.  Had I remained in grief, these amazing lessons and blessings would be unclaimed, possibly lost forever and my life and my heart would still be a wreck.  And worse -and worse is still possible- the healing that God has done (is still doing) in the parts of my life that have nothing to do with Samuel would also be nonexistent had I not chosen to allow Him to mend my heart because of Samuel.  Samuel changed my life - for the better, in spite of all the horrors and sorrows.   And so Romans 8:28 has been proven in my life.  And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.  

And speaking of blessings, pieces of Samuel's spirit continue to live on in Anna. You might find it most interesting to know that she, the child that has the fewest memories of Samuel, displays many of his personality traits.   While she might not remember as much as we wished she might, the very fact that she literally grew up a few feet from him at all times is evident in her mannerisms.  So we make it a point to point out to her the things that she instinctively does that were learned from Samuel.  A piece of him is surely in her.  That's a pretty special gift, not just for us to witness, but also for her to have within herself.  

The below video is footage of our first hike of the season at Snoquera Falls.  Mark and I visited it last fall.  Anna has been expressing interest in hiking with us this year.  The last hiking she did was with us when Samuel was here and she really seemed to be a trooper.  But then all the kids enjoyed it at that time.   Last year, however, Daniel wanted to go with us but did not enjoy it at all so we weren't sure if she wouldn't do the same thing he did.  Whine way too much....but thankfully, we were pleasantly surprised.  Little hiker Dee is back after about a four year hiatus.  We did this four mile trek and she never complained even once.  She led the way just as Samuel enjoyed leading the way both literally and metaphorically.  There were so many pieces of Samuel evident in her on this hike that I wanted to share it with you.  (I just got the camcorder, still experiementing with settings and a good way to carry it the footage doesn't look like a drunk took it.)

To my baby, just a thought away. 

So many gifts you left behind for us to discover.  Thank you for all of them.  The end of your physical life was certainly not the end of you nor the beginning of a neverending sorrow.  I was so wrong about these things and I am glad that I was.

I'm also glad that you gave Little Dee so many pieces of yourself in your short life.  Though she certainly is her own person, she acts a lot like you.  I cannot think of a better role model for her to have had for the first four years of her life.  Those are some of the most important as you well know. 

I miss you.  I can hardly wait to be with you for eternity.  But until then, it is as I said it would be on this day four years ago, I know where you are and you know where I am. And you have certainly fulfilled your promise to check on us every day.  Thank you for that most.

With more love than can be expressed.
Mama

Toni Erickson

Toni Erickson, my beloved midwife, relocated to Heaven on Good Friday which was also the first night of Passover.  I, of course, find this symbolic of her life and quite fitting.  Her obituary is here. 

              
                   @@@@@@@@@@@@@@


Dearest Toni,

Some might find my writing you now that you are with Jesus odd as they will assume I am too late and you will never be able to read these words.  I know nothing could be farther from the truth.  I have Samuel to thank for that.  Please thank him in person for me, will you? 

It is so comforting to know that you are no longer suffering but are now rejoicing.  I imagine your reward is well beyond my comprehension.  I only know of what you have done for me.  You came into my life at a place where it seemed as if everything was falling apart.  In what should have been a joyous occasion, all I was surrounded with was doubt, frowning faces and dis-ease.   I remember feeling like a caged animal at the "mercy" of it's captors.  I felt like I had no good choices for care during my pregnancy and didn't deserve any.  It was Mark's sister who suggested I contact you.  For that, I will always be grateful though I know she was only half-serious.  As I said, our "support" was half-hearted at best.  I was 15 weeks along when I called your office/home and left a message.  I truly did not know what to expect.  I know I did not expect what I got from you which was compassion, joy, excitement and most of all love.

I was sitting in the bathtub when you called.  Mark was working nights and I was alone.  I'll never forget you being so excited to meet me wanting me to see you before my next OB appt but never pressuring me to make a decision.  I knew I'd choose you within only a few moments of our conversation.   Meeting you just confirmed this decision for Mark. 

I remember us coming to your house.  It was much easier for me than going to the doctor's office for a variety of reasons but most of which came back to you being you.  The environment of your home was peaceful and joyous.  That was all I truly needed.   Mark and I were both immediately at ease and at home in your home.  You treated us as if we were your long lost children never blinking an eye at how we had only been married a few weeks and did not plan on this pregnancy.  It was water under the bridge.   Any concerns Mark had about the pregnancy, the prenatal care or the home birth were eased at this first visit with you.  Your excitement for us was infectious and we both could not help but to steal some of your joy for us and call it our own.  You changed the direction of our lives on that day.  You showed us the love and compassion of Jesus and that changed everything.  For me personally, you rescued me from a dangerous pit of despair which would soon lead to disaster.  I don't know if you knew that.  I am betting you know the full story now, possibly better than I.

I looked forward to visiting you.  In fact, I loved being pregnant because that meant I got to see you more often than when I wasn't.  I know you probably got that a lot.  How many times did you tell me that if I'd keep having babies, you'd keep delivering them?    When you retired, I began to have dreams that I got pregnant and had to look for another midwife.  These were not good dreams.

Mark has stated on many occasions that our homebirths are some of his most pride-filled moments.  I know that our homebirths bonded us together as a couple and solidified our relationship in a way that nothing else could.  We needed that bond and trust in each other in order to care for Samuel.  He needed parents who could always be on the same page and do the hard things.  We have you to thank for helping us become those people.

I always appreciated your honesty and integrity. I could ask you the hard questions and you'd answer them.  If you disagreed with a choice I or another made, you had no problem saying so.   In so many respects you were like my Delma, have you met her yet?  I have always told Mark that while he only met Delma very briefly, he got to know her through knowing you.  Thank you for that.  Not having you here is like losing another Delma in my life.  It is such a great loss.  I can only imagine the pain of your own family as they grieve for you.

I will never forget you sharing with me some of the pain of having the babies you helped deliver die, whether stillborn, or due to defects that made life outside the womb impossible.  I would ask you how you got through that and you said you and the mom cried the whole time but you got through it.  I tear up just remembering this.  I think of the last days of Samuel's life, people asking me how I got through that and I say that I cried the whole time but I did what had to be done for him.  The day after he died you told Mark and I that we were heroes because of the level of care we were able to provide to Samuel.  I learned a bit of this "heroism" from you.  Because you weren't afraid to share the hardest things and you weren't afraid to feel them deeply either.  This is something that moves my heart more than anything else on this earth.  I thank you for being able to do this.  I know it is a rare person who can.   Thank you for showing me it could be done before I needed to do it.

A bit after Samuel died, I called you up to ask if death of loved ones ever got any easier, you know seeing as how you had more life experience than I.  You said that they were all equally hard.  It never got easier.  For you, the comfort came from knowing that you were getting older and would soon join them.  Of course, that was a "comfort" I did not have knowing I could potentially live several more decades before seeing Samuel again but I was both happy and sad to know that a death is grievous no matter how old one lives to be. 

You shared that you believed it was an easier life to live for a very intensely sick person that it was for their caregivers who had to helplessly watch them suffer.  It's hard to know Samuel's sufferings and believe this but I trust you as I know you spoke that to me from direct experience.   I know these days will be so painful for your family as they process the emotions of relief that you are not suffering and sorrow that you are now gone.  I don't envy them that.  I do know that it is easier for me to live now knowing Samuel is no longer suffering and safe in Heaven than it was to live knowing he was here and often miserable day after day, year after year.  I have reconciled these emotions.  Relief won.  I loved him enough to want him to live free.  I still miss him of course, but I know he is just a thought away.  Closer to me now than ever.  Just as you are now.

You shared with me that you believed Christians get a chance to decide whether to stay on Earth, or go on to Heaven as you'd had this experience earlier in life.  This comforted me knowing that it sure seemed like Samuel, in his final moments was trying to decide this for himself.  In many ways, I think this was a hard decision for him.  Probably just as hard as it must have been for you.  He knew how much we loved him.  He know how much we needed him.  I know you would have known these feelings as well.  But in the end, he made a wise choice.  A choice that spared him and us more suffering.  Suffering of the Earthly kind.  Suffering the unknowns of a disease with no real cure.  Suffering watching him suffer.   Heaven was the only cure for that and I know you both knew that.  Still I know your hearts were torn between staying and going......

The pain of separation is hideous most especially at first.  We all know it.  We all fear it.   John 11:21-27 records Martha's reaction to Lazarus's death:

Martha then said to Jesus, “Lord, if You had been here, my brother would not have died.  Even now I know that whatever You ask of God, God will give You.”  

Jesus said to her, “Your brother will rise again.” 

Martha said to Him, “I know that he will rise again in the resurrection on the last day.” 

Jesus said to her, “I am the resurrection and the life; he who believes in Me will live even if he dies, and everyone who lives and believes in Me will never die. Do you believe this?” 

She said to Him, “Yes, Lord; I have believed that You are the Christ, the Son of God, even He who comes into the world.”


What Jesus said to Martha, that HE was the resurrection and the life, that those who believe in Him would NEVER die.  That those who believe in Him would NEVER see the grave. That even if their body died, that person is instantly with Him and NOT dead is a promise that was fulfilled with Passover.    This is why I find it so fitting that your exodus to heaven was on the first night of Passover week.  It is a wonderful reminder that though your body has died, you are with Jesus and more alive now than ever on Earth.   Toni, I pray your loved ones are convinced of this already so that the pain of separation will be eased by this knowledge.   This knowledge is how I live without Samuel and how I will now live without you. 

To close and say "I love you" simply does not justice to the way I feel about you.  Certainly, a good majority of the kindest words ever spoken to me or about me came from your mouth.  Those words are treasured more than treasure so I am at a loss to express my deepest love to you now.  I am certain that there are better words for my hearts utterances there than here.  Perhaps Samuel or Delma can speak them to you and give you a Heavenly hug in my place.  Will you check on me once in awhile?  I'd like that.  I always wished I was your daughter. 

Will keep your family in my prayers.

With all my heart, all my admiration, all my love and all my gratitude.  Jen

My Unwanted Inheritance

I've taken a break from blogging in order to deal with my unwanted inheritance. 

No, nobody died. 

Let me explain a bit.....

When Samuel was diagnosed with cancer and then had numerous complications resulting in the gain and loss of body parts in order to survive, it became very important to us to accurately document the medical facts as well as our decision making process every step of the way.  Our main reasoning was that Samuel was only two years old when one round of chemotherapy changed his body forever and he would not remember any of it later in life and would one day need to know the details of how his body came to be the way that it was.  We wanted to be able to provide him with every detail of how he came to inherit that imperfect physical body, as well as whatever emotional strengths or weaknesses he might have inherited by enduring it all.   My hope, had he lived, would be that he'd read the journal and not only come to a better understanding of what happened to his body, but that it would also affirm that he was never alone in any of it.  That he was always surrounded by love.   His entire family put their "regularly scheduled lives" on hold in order to be fully present with him when the worst things happened and continued to happen.   My utmost desire was that the journal would become for him a continued confirmation of what he spoke to me days before going to Heaven, "Mama, I will always know how much you love me."

When traumas happen to very young children who do not have the capacity to comprehend them, it is your job as parents to help them cope and heal as best they can while they are still little.   Later on, as they are able to comprehend things more like an adult, you will need to help them understand the things that happened to them so that any lingering issues can be resolved.  If you did your job properly when they were young, that adult conversation may still be difficult but should not leave you feeling guilty for the choices you made.  If however, you are one of those parents who believe and act on the lie that, "They'll never remember it so let's pretend it never happened," or worse, you either do not believe that the trauma occurred, or you blame and punish them for it, the adult conversation you will have one day will be much harder because your child will have recognized that much of the unwanted part of their inheritance could have been avoided had you done your job properly.

Trauma leaves footprints all over a child's life regardless of age but if it is addressed quickly and completely, those footprints will lessen over time.   However, if those footprints are not addressed and the trauma remains unresolved, its imprints deepen and follow a child well into adulthood   Even if the person cannot remember a trauma in full detail, their body's memories of a trauma will manifest as PTSD, or the unwanted inheritance.  PTSD stemming from childhood trauma is the continued screams for help from the inner child who is still fully entrenched in the trauma.   Recognizing this fact at any age is an important first step in resolving the trauma and at the same time, comforting the child who up until this moment, has not been fully heard or helped.

We worried so much in the beginning about Samuel having PTSD in hospitals or with medical personnel based on that first three months of hell.  We were devastated to think that our loving, happy, outgoing, always smiling boy would likely end up frightened, reserved and easily angered by everything and everybody after that.  Who wouldn't be after 20+ surgeries, people poking and prodding him at all hours of the day and night, etc?   But, as many of you know, that never happened.  Quite the opposite happened.  He quickly decided he liked the hospital and for the most part, he liked all the staff.  He may have lost his smile for a few months, but it came back promptly.  We were relieved, amazed very grateful that he never showed signs of PTSD.  His spirit was never broken by any of the tragedies that befell him.  I count that as a miracle but I'm also fully aware that we played a very important role in it.

I was visiting with my (former) neighbor the other day and the conversation turned to Samuel.  Two of her children were very young when Samuel was here and they do not remember him.  The two older ones do remember Samuel and they feel frightened when they think of all the awful things that happened to him.  Frightened as in, if they get sick, maybe all those things will happen to them.  We talked about how all the things that happened to Samuel were so rare and the impossibility of all of them happening to another child.  I related that I've still not found another family whose child has lived through that many complications and that's when it dawned on me, and my neighbor as well: Samuel survived and even thrived as much as he did, for as long as he did, because he was loved and supported in every way imaginable.  We never gave up trying to help him live with dignity and quality no matter what obstacle stood in the way or how bad things appeared.  Samuel had no worries, anxieties or PTSD burdening him.  We took on all those things so that he was free to live and enjoy the good days that he did get.  Every time he got a reprieve, he never spent that time worrying about when the pain would come back.  He never thought of anything beyond enjoying that moment.  Every time some new woe struck, it seemed to surprise him more than anyone else.  One of the most heartbreaking days for us was the day he finally asked us why he was always the one who got sick.  We knew on that day that he was finally old enough to notice (and be angry about) what he had been watching for the past four years.   And even after that day, he never gave up trying to endure it so he could stay here with us.  This is such a stark contrast to the way I felt when I was his age. (6)   By then, I was tormented by my unwanted inheritance and left to sort it out under condemnation and all by myself.  The sheer impossibility of a six year old processing those circumstances shocks me to this day.  I would have welcomed the opportunity to go to Heaven.

The holiday seasons always torment me as I remember what they were like when I was a child.   Every year, my unwanted inheritance paints everything with gloom even though decades have passed.  I somehow manage to smother it with busyness and the hope that there will come a year when it doesn't return with a vengeance.   But after 30+ years, it doesn't appear that it's going away on its own.   In 2010's holiday season, I made some good progress on resolving a piece of my unwanted inheritance.  But as I found out this last holiday season, it was only a piece.  An important piece, but a piece nonetheless.  There are still many more pieces to resolve and it's never been more obvious to me that it is now time to fully focus on this.  I am so tired of being burdened by my unwanted inheritance every time I turn around so this past season I did something I've never done before:  I found a support group for "survivors" of this specific trauma in order to be able to speak freely about the unspeakable things that have happened to me in a place where I am actually heard and understood.  

It's been very good and very painful to begin to dissect parts of this and to identify the pieces that still need to be resolved so that I will finally be able to get rid of my unwanted inheritance.  I'm finding it's like untangling a large skein of yarn that has been tied into a massive knot.   It's frustrating and feels never ending and impossible at times to even grasp the gigantic mess that has been laid in my lap.   As I untangle it, I find more unexpected horrible knots tied in ways I never knew existed.  I ask myself, "How did this happen?  How could this happen?  Who let this happen?" over and over fully knowing the answers.   Realizing this could have all been avoided just adds to the underlying sorrow of the process but knowing that people are able to release themselves from the prison that their unwanted inheritances have left them in is what keeps me going.  The strength to endure this process comes from the grace, guidance, truth and covering of God.   

It probably would not surprise you to know that Samuel has been very obviously near me these past months as well.   He has always felt the sorrows of my heart deeply, both on Earth and from Heaven, and never lets me carry them alone.  He is such a good boy and his presence blesses me so much.

All this said, blogging will be light and sporadic for awhile while I work through some things. I appreciate your prayers.   My family is well.  Kids busy with school.  Bud got a Christmas present I cannot wait to share with you all, just need pics.  More snow hiking with Mark coming up possibly this weekend.  God is always good.

Advice on Cancer Treatment

I've recently "met" a family online whose two year old child was diagnosed with leukemia earlier this year.  After suffering some unpredicted side effects of chemo that led to numerous surgeries to correct the issue (that still remains an issue), the family has decided to discontinue chemo and pursue Chinese medicine as the primary cancer treatment for their child.  (Yeah!!!)   Thankfully, they live in a country that doesn't force poison treatments if the family refuses.  However, because chemotherapy is still considered the only "cure" for cancer, they have found they don't have much support for their decision so I'm grateful that they found me (and they are too) since refusing chemo, in the eyes of most, is regarded as choosing to voluntarily allow your child to die. 

Nothing could be farther from the truth.

"Just save his life.  Worry about the consequences later."  This was the advice given to me by my dad AFTER Samuel survived all the initial complications of chemo and we were agonizing over how to proceed "treating" his leukemia without killing him or doing more damage to his fragile body.   My dad's advice is the advice of the majority and we heard it often.   "Cure" the cancer and worry about the consequences of that cure down the road.  The thing was, the consequences for Samuel, unlike the majority of kids getting chemo, were already upon us and they were devastating.  They weren't saved for five to ten years down the road and on top of that, we had little help managing them because they were simply unheard of.    Yet, we were still asked by our "caregivers"  if it was fair to Samuel to go through all those miserable side effects that nearly killed him and then NOT treat his cancer leaving him a "ticking time bomb for relapse."  As if cancer was somehow worse than the horrible consequences of "the cure for cancer" he would have to live with the rest of his life.  (The consequences that consequently ended up costing him his life.)

These people absolutely refused to recognize what was right in front of them; chemo is poison and our child's body was having a normal reaction to poison. It was being destroyed. It was dying. Not being "cured." Maybe other children were doing okay (and I use "okay" here loosely) and perhaps other children will be "cured" *(meaning live five years beyond their diagnosis date 2-3.5 years of which would be "lived" undergoing chemo), but the fact remains that that child will suffer many long-term consequences from treatment, one of which is that they will be much more prone to cancer, until the day they die.

So our question back to these people was, was it fair to put him through the now known torture of chemo given the horrors he had already endured, and the far worse things that were sure to happen to him if we continued, with no guarantee of a life long cure?  Was living with cancer really so much worse than the supposed cure?  The answer to these questions was rhetorical at that time.  I continually battled doctors who were willing to ignore or play down every visible side effect from chemo Samuel suffered in order to justify continued poisoning.

Cancer, as well as any other devastating long term illness or physical handicap, does one thing especially well; it reveals the motivations that reside deepest, not only in your heart, but in the hearts of those who surround you.   In Luke 6:45, Jesus says, "The good man out of the good treasure of his heart brings forth what is good; and the evil man out of the evil treasure brings forth what is evil; for his mouth speaks from that which fills his heart."   Jesus warned us to speak carefully, Matthew 12:37, "For by your words you will be justified, and by your words you will be condemned.” As more and more time elapses, I see the underlying motivations of the thinking and advice of all parties (us included) much clearer.   Considering that we live in a Biblically illiterate, self-fulfilling, godless world, it is no great revelation that the majority of advice we received was rooted in pride.  What has become of "do unto others" or "love your brother as yourself." (Luke 6:31 Luke 10:27)  The Golden Rule has become a foreign concept and one which sadly, the few who still cling to it, are scoffed at for.

"Cure his cancer," was spoken as if WE or THEY had the power to cure it. (we saw how well that worked out) As if chemo was Samuel's only hope for life. Please.....poison was his only hope? How do people still not see the err in this? I find all this sickening today for a variety of reasons that can all be summed up as follows; only God can cure cancer and only God controls who lives or dies.  We do not "own" and thus have little control over the destiny of our lives or our children's lives. God rules.  We do not.  It really doesn't get any more simple than that yet very few want to admit reality.  Ever wonder why that is? (Hint: Genesis 3:5)  I wonder if there'd be less cancer if we could just figure this out and live like it.

"Worry about the consequences later." While I knew "cure his cancer" was wrong when I heard it spoken, the deeply-seeded error wasn't as obvious to me initially as the error in second part of this advice was.  This statement has got to be one of the most selfish things you could say in regard to someone elses body.  As someone who has been legally blind since birth, I've experienced first hand how easy it is for people to dismiss the reality, severity and complexity of my handicap because it does not directly affect them and it was nothing compared to what Samuel was facing.  It was this statement that not only deeply angered me, but also fully awakened me to how I needed to make decisions as well as participate in Samuel's care.  I know God overlooked many of my mistakes in Christianity (love covers a multitude of sins 1 Peter 4:8) during that time because I chose to listen and obey the still small voice in my heart that cried out for compassion, empathy and quality of life for Samuel vs. listening to the doctors who cried out for poison, poison and more poison. (and some even implied I was a bad mother for choosing quality of life vs. "cure" and boy do I have a scripture for them.  James 4:17, It is sin to know what you ought to do and still not do it.  In the end we all have to answer to God.  How many easily dismiss that truth?)  As we all know, pride goes before a fall and God did not disappoint. (Proverbs 16:18)  How many times did God allow our "caregivers" to remain confounded and useless while He led us to the solutions for Samuel's many problems. (1 Corinthians 1:20-27)  You know, little things like getting his leukemia in remission without any chemo...

I don't write these things to puff myself up with pride.  They are matter of fact.  They happened by God's hand.  There isn't a day I don't look back and marvel at some of the things He allowed us to accomplish - me to accomplish.   But even so, after all was said and done, and Samuel died anyway, I wondered what the point of it all was.  The things we accomplished, the things we learned about diet and cancer were meaningless and easily dismissed by anyone and everyone without Samuel as living proof.  Yet, sometime in the second year after Samuel's death, the importance of the knowledge we gained quickly paled in comparison to the continued revelation of Samuel's love.  The love that gave us all the strength, the will, and the endurance to never give up no matter how terrible and futile things looked, no matter what the world said or thought of us, until God made it clear that it was over.  The love led to miracles.  Surely 1 Corinthians 13:7-8 is proven.  Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. It is, in fact, the one thing that still stands when all else has fallen. 

Our society assigns inordinate value to the things of this world which will be meaningless in eternity.  (Luke 16:15)  People live as if the accomplishments in this life are the be all end all and the only reward we get.   Thus, they live their lives as if this one life, is all we get.   Death is their ultimate enemy.  They are willing to do whatever it takes to stay alive as well as keep those who are in their control, alive as well.  No matter the cost.  This is what Jesus said will happen to people who love this one life, "He who loves his life will lose it." (John 12:25-26)  He goes on, "he who hates his life in this world will keep it for eternal life.  If anyone serves Me, let him follow Me; and where I am, there My servant will be also. If anyone serves Me, him My Father will honor."  We are to love and serve God.  Not ourselves in this life.  (Mark 8:35-38)  It is the reality of Heaven and eternity that made the scare tactics of Samuel's "caregivers" who often said, "if he doesn't finish his chemo, he will die," a useless weapon to force us to do their will. Death, for the Child of God, is gain.  (Philippians 1:21)  Samuel gained eternal life and he lives in the fullness of love and joy. Very occasionally, he is somehow allowed to shower me with that love and joy so that I am reminded that I chose the only real life there is for him.  It is that love and the knowledge that every decision I made for Samuel was motivated by that love, that allows joy to overcome the sorrow of our separation.  That love reassures me that I always chose "life" for Samuel and that was all God asked of me.  This knowledge brings me much peace and joy today.

7.5 years have passed since "cancer" reared its ugly head in our lives.  In that time, way too many of the children I came to know have either relapsed or died.  Of the ones who are still living, every single one carries a physical reminder of cancer with them in the form of "long term side effects."  They and their families are continually haunted by the fear of relapse and so I question - who is better off?  The families who have lost children, the families who are still slaves to the cancer system, or the families who whose lives are crippled by the fear of relapse?  My answer to that question is that the ones who are better off are those who walked through the trial of "cancer" remaining faithful to that still small voice in their heart (Jesus), no matter what the advice of the world was, no matter how difficult the ordeal was and no matter what the outcome was. 

That said, the above has been my main advice to this family who has contacted me.  In the grand scheme of things, the choice of their child's cancer treatment, the outcome of their child's cancer treatment and any knowledge they gain along the way, will not be of any comfort to them when all has been said and done if they did not listen to the still small voice in their heart that is trying to guide them toward decisions motivated by Agape.  I cannot make those choices for them nor will I violate their conscience.  The direction God asked us to walk may not be the direction He asks others to walk.  They must choose the path they will travel for themselves and they must live with those choices.   I can pray for them.  I can come alongside them in spirit and in prayer and I can ask you to do the same.  The little girl's name is Megan.  Will you pray for her and her family with me as they navigate this?

What I offer them and you is advice from my overall experience.  The heart's satisfaction and peace in this life is not gauged by whether we win or lose, live a long life or die young.   God alone decides these things and we do not.  What we can decide, what we can control, is how we live our life.  Will we obey or disobey Him?  Will we be faithful in the small things as well as the large things? Or will we cave to worldly pressure?   (Luke 16:10)   It is only by our faithfulness and obedience to Him that we gain satisfaction and peace in our hearts no matter the outcome of our circumstances. 
Psalm 34
I will praise the Lord at all times.
I will constantly speak his praises.
I will boast only in the Lord;
let all who are helpless take heart.
Come, let us tell of the Lord’s greatness;
let us exalt his name together.
I prayed to the Lord, and he answered me.
He freed me from all my fears.
Those who look to him for help will be radiant with joy;
no shadow of shame will darken their faces.
In my desperation I prayed, and the Lord listened;
he saved me from all my troubles.
For the angel of the Lord is a guard;
he surrounds and defends all who fear him.
Taste and see that the Lord is good.
Oh, the joys of those who take refuge in him!
Fear the Lord, you his godly people,
for those who fear him will have all they need.
Even strong young lions sometimes go hungry,
but those who trust in the Lord will lack no good thing.
Come, my children, and listen to me,
and I will teach you to fear the Lord.
Does anyone want to live a life
that is long and prosperous?
Then keep your tongue from speaking evil
and your lips from telling lies!
Turn away from evil and do good.
Search for peace, and work to maintain it.
The eyes of the Lord watch over those who do right;
his ears are open to their cries for help.
But the Lord turns his face against those who do evil;
he will erase their memory from the earth.
The Lord hears his people when they call to him for help.
He rescues them from all their troubles.
The Lord is close to the brokenhearted;
he rescues those whose spirits are crushed.
The righteous person faces many troubles,
but the Lord comes to the rescue each time.
For the Lord protects the bones of the righteous;
not one of them is broken!
Calamity will surely overtake the wicked,
and those who hate the righteous will be punished.
But the Lord will redeem those who serve him.
No one who takes refuge in him will be condemned.

Where I Am At - 2011

My Dad always had a thing for junk old vehicles and it seemed the uglier it was, the more he liked it.  None of us (Mom, sister, brother) ever understood it.  Sometime in my late teens, he owned a Datsun wagon similar to this. 

He always told us what a great car it was and how much he loved it.  He said that every time he drove it, he felt like he should open the window and throw money on the ground for all the people less fortunate than him.  We thought he was absolutely nuts.  A tan (got to be the most ugly car color ever) station wagon?  Felt like you were in a pop can (or rat trap) when you rode in it.  A four speed (read gutless).  We thought he should take all the money he wanted to throw on the ground and buy himself something "decent."

He could afford a nice car.  My Mom drove a nice new Dodge truck and also had a Corvette. (Paid off I might add)  Yet he always seemed to enjoy the junkers and he owned so many different ones that our yard looked like a used car lot, or junkyard depending on your perspective.   But this car - we kids hated it most and took every opportunity available to make fun of it. (We were awful)  To us, it was so old and ugly that we did our best to never be seen in it.  When it was time for my sister and I to learn to drive a stick shift, we laughed about all the things we could plow with it and how it wouldn't matter because it was already so hideous.  A few dents might improve its appearance in our opinion. 

My Dad would find what I'm about to say comical if he actually read my blog.   I finally understand what he meant by the whole, throwing money on the ground thing.  And this year, that is where I am at.  Let me explain.

In 2009, I posted Where I Am At  to recap all the emotions and work of sifting through grief in the first year after Samuel left us.  That was my "Job" year.  It was a job too but I am referring to Job in the Bible.  He endured his worst nightmare during which he spoke with "friends" about all the things he knew about God.  He listed out all the things he wished to have God answer in regard to his situation.  In the end God showed up and asked him a barrage of things to which Job said in Job 42:2-6

“I know that you can do anything, and no one can stop you.  You asked, ‘Who is this that questions my wisdom with such ignorance?’
It is I—and I was talking about things I knew nothing about, things far too wonderful for me.
 You said, ‘Listen and I will speak! I have some questions for you, and you must answer them.’
I had only heard about you before, but now I have seen you with my own eyes.  I take back everything I said, and I sit in dust and ashes to show my repentance.”

Before Samuel's death day, I knew about God and like Job, a lot of what I knew was wrong.  From Samuel's death day forward, I came to know God and in doing so, found I had to repent and relearn much. That was how I spent the first year after Samuel, getting to know Him and allowing Him to walk me through the most traumatic experience of my life.  That was the year I went from simply believing He existed to unshakably knowing He lives.

The recap helped me see where I had been that past year and realize that I had grown a lot - in Him and out of grief so I wrote another one for 2010, the second year without Samuel.  The heaviest grief had subsided into the dullness of reality without him here.  In the first year, grief is so heavy that many people fear looking upon it.  It is as if you have a gaping bloody wound with organs hanging out and it scares people.  They flee possibly thinking that if they don't look at it, it cannot happen to them.  That's exactly what happened..  90% of our support while Samuel lived disappeared completely. The second year, apparently the wound is covered enough that people can ignore it because that then is what they did.  Just pretend Samuel never lived.  Never speak his name.  Assume all is well but don't ask just in case it isn't.   Last year was harsh with some very dark areas; I did not feel I fit into this world and people just expected me to live as if none of the tragedy ever happened, as if Samuel never existed. Obviously impossible.

This year's recap is a near 180 to last year's.  Experts will tell you that there is no timeline for grief to subside to a place where life feels "normal" and worth living again and some people use this as a license to never recover.  I know a few such people and I just want to ask them, "Do you truly want to recover your life or do you just want to drain all the sympathy and attention that last 10% of people have left for you?"  And I ask that in the nicest way possible.   From where I stand there is only one way to reclaim your life and that is to seek the One who allowed tragedy to happen, humble yourself before Him and allow Him to walk you through it.  The time it takes for life to feel normal and worth living again depends on the effort you put into trusting Him, learning from Him and allowing Him to bend and mend your heart.

Since last year's recap, it has been a time of Him cutting things out our our lives in order to heal and mature that which remains.  It became quickly obvious that it was time to move away from the grief of Samuel's life to deal with the griefs of our own lives minus Samuel, both past and present.  Very painfully and abruptly, people were cut out of our lives.  And also unexpectedly, Mark joined the ranks of the unemployed.   On the surface and initially, both things seemed very dismal.  But, I've found that when He cuts things out of your life, it's because they are not good for you anymore.  Or because you need to step away from those things in order to gain perspective and discernment and there was no other way for you to have either one while you were immersed in it.  Trusting Him in such precarious areas does result in more good than bad and that's how things have been for us.  For Mark who continued to work in an environment of sick and dying children for years after Samuel left us, this separation has been good.  The job was very hard on him emotionally.  Like dredging up the past over and over and still being able to do nothing about it.  He was never able to be fully comforted in his own grieving process or move beyond it in that environment.  He's had a solid six months to just be and it's been very good for him (and me and the kids too.  When Daddy's home every day is a holiday to us).  I blogged a bit about God's healing of the "Tamar" part of my life here.  It wasn't too long after that experience of resurrection that I began asking God to allow Mark and I to have another honeymoon to fully enjoy the restoration.  Considering the first one was a bust with the stigma of being pregnant before the wedding, considering the last several years were atrocious at times, and finally considering the unimaginable gift He had just given me, I hoped this was too much to ask.  I was thinking something like a couple day getaway.  Just Mark and I - no kids obviously, but I just didn't know how that would be possible, either financially or otherwise.  And that was all before he lost his job.  

It was less than a week after the job loss that I realized my prayer was answered, just not in the way I had expected.  It was better.  So much better that I just started laughing like Sarah must have laughed when God told her she was going to have a baby when she was 90.  It just didn't seem possible and yet it was coming to pass.  A true Biblical honeymoon which I knew about but would have never expected.  Deuteronomy 24:5  “When a man has taken a new wife, he shall not go out to war or be charged with any business; he shall be free at home one year, and bring happiness to his wife whom he has taken.  I realized I needed to share this with Mark who was still understandably upset about not having a job.  He was unaware of my prayer for another honeymoon at that time.  I told him that I had something to confess but I was certain that I wasn't going to be able to get all the words out without laughing.  Through giggles, I told him about the prayer and what a Biblical honeymoon looked like and that it seemed to me that this prayer was answered.  His response, "So this is YOUR fault?"  More laughter.  How would it be possible?  Well, God has provided for us for six months now and this entire time, we've both called it our honeymoon and enjoyed it as such.  It's been an amazing time of rest, renewal, pushing through some walls, some grief and growing in our relationship.  It's been SO wonderful, I cannot even tell you how much we both needed this time.  We continue to trust God for provision and a future job as He sees fit.

I knew that the Olive Garden experience was significant of something from the moment it began but it's taken me 5 months (to the day) to figure it out.  It has a lot to do with throwing money on the ground except I'll change the analogy a bit to throwing blessings on the ground.  This happened exactly one month into our "honeymoon" when we were still feeling a bit precarious about how it was going to work out long term.  I wanted us both to dump all the what-if fears and concerns to just enjoy the blessing.  But I am also a "waiting for the other shoe to drop" kind of person so I was afraid to fully immerse myself in what God had put in front of us.  Part of me felt like I didn't deserve such a huge favor.  Part of me was afraid that if I let myself fully enjoy it, everything would fall apart.  So on the drive to the restaurant, I was throwing my blessings on the ground; I made myself feel guilty for wanting to enjoy such amazing blessings while our friends were enduring trails in their own lives.  Trials that I could not ease for them.  Trails that I could not take on for them.  Trials between them and God.  Sitting in the Olive Garden after throwing my blessings on the ground did not result in  blessing. Instead He reminded me quite clearly without even a warning of the (no words for this) monstrous, bitter, awful, years of suffering we endured with Samuel as well as the tremendous loss and cross we carry the rest of our lives without him. We've paid a high price for the lessons we learned through that that now go toward a future glory. Samuel paid the ultimate price to teach all of us with his life and I know his reward for this will be exceedingly great.  But this knowledge doesn't change the fact that you could stab me with a knife over and over again and never come close to the pain I feel in my heart, still, even now, because he's not here. And right there in the middle of a restaurant, for God and everyone to watch play out, that agony was again as fresh as it would be if it had only just occurred. I left angry at Him for the ambush. He pushed all the right buttons all at once and left me in a terrible emotional state for days to come. And for what point exactly?  As I said, it's taken awhile to figure out.

Mark and I have survived a horrible ordeal together. It was not just some little blip in our lives easily forgotten.  I realize over and over just how unbelievable and awful things were - for a very long time - when I try to describe them to a person who knows nothing about what we endured. How did we manage it all? I always come back to that question as do others.  We are still physically and emotionally tried and tired.  I'm not sure we have the strength to endure another hardship even half comparable to Samuel's lifetime.   I hope we'll never have to go through anything this harsh on our hearts again.  We'll carry this sorrow until God removes it in Heaven.  While I know God holds my future and I trust Him now more than ever, I have a nagging fear that the minute we find joy without immense sorrow in this life, that joy will be ripped away from our hands and sorrow will solely remain.  I hate typing that out but it's true.  The world calls it PTSD but God would call it a lack of faith in His goodness.  So,  I know I need to let it go. 

In Job 42:12, after Job repents and is reconciled to God, the LORD blessed the latter days of Job more than his beginning.  There are no more recorded "shoe droppings" for Job.  He endured some hideous losses as well as physical torment but when Job SAW God he also saw his own vileness and knew his lowly place in this world.  No one could take the experience or what it did in his heart away from him.  No one and no thing from that point on would have been able to shake his confidence in his Lord.  During that trial, though he wavered a bit, he had proven himself faithful to God.  I assume that was the end of the major trials and temptations for him because there is only blessing recorded after that.  James 1:12  Blessed is the man who endures temptation; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.  I pray I'm there - approved.  I cannot speak for Mark but like Job, no one and no thing will ever again make me doubt God's existence, love for us, and faithfulness to His children.  I think this is a point God wants us all to reach with Him but because we are often rebellious, we suffer worse and worse trails as He continues to try to reach us.  This is why we are vile.  You'd think He could reach us in His goodness but often it isn't until we're the most broken lost souls that we finally humble ourselves, listen and obey Him.  We are vile and He is far greater than we can imagine and again I'll say that I pray I've been approved in His sight and that our gut wrenching trials similar to Job's, are over.  I do not expect a life with no hardship, just hope and pray for less horrible sicknesses and deaths to so personally dawn my doorstep.  I realize just how depraved I am when He tries to bless me; I know I don't deserve it and at the same time, I don't want to lose the blessing.  There is a word for this feeling: Dayenu.  Yesterday's blessing would have been enough and still there are more, and more, and more.  And some are just so unbelievable that I can do little else but smile and laugh because I am so happy.  He is so good!

Blessings are meant to be enjoyed, especially dayenu blessings.  Not thrown on the ground for those "less fortunate" as my Dad would say.  Those he felt were less fortunate than him were the very same people who would drive by and make fun of his car. They had no way of appreciating it's value.   It ran well, got good gas mileage, and he didn't have to slave away at a job he despised to own it. Sadly for him, it was the most faithful thing in his life and in his mind, like mine, in order to hang on to this blessing, he somehow thought that he needed to throw the money he was saving (which was the blessing) away thus throwing the blessing on the ground.  The fact of the matter is that he learned to enjoy that blessing the hard way; by driving an expensive car he had to work long hours just to enjoy, or by having one which always needed repairs, or by having one you had to be "careful" with since it was new.

Most people would look at our family today and never see our blessings.  Some feel sorry for us.  Others might say that we must be horrible, indecent people and God is punishing us for it.  Let's see what they see: our son got cancer and a whole lot of other horrible things, we incurred a huge amount of debt and then he died.  Mark is currently unemployed. We are not enamored with "stuff" so don't own anything you'd be jealous of and covet.  On the surface, our life today looks pretty bland, boring and that 90% would say sad.   Yet we treasure our quiet simple life together.  We've had enough drama.

 

This is what is most important; Mark and I have each other and after all has been said and done, isn't that amazing?  And currently, we have been given a honeymoon to refresh and reward us simply because I asked for one.  I'm still laughing about that.  We have a glorious peace over our home and our children are thriving, happy and well-adjusted.   And Samuel is in Heaven more than likely keeping God alert as to what we are doing, as if He needs the help.  What else can I say?  The sorrow is there and I expect it always will be.  I cannot change what happened but I wouldn't give up being Samuel's Mom to be spared the agony of being separated.  The lessons of his lifetime brought me to where I am at today, a place of immense blessing and much to look forward to including being reunited with him in Glory at some point. 

What God was trying to show me at the Olive Garden was that He alone knows the depth of my pain and how much my heart has suffered through it.  But that time of trial is over and whatever tomorrow holds is out of my control.  Worrying about it will destroy my enjoyment of today.  Trying to enjoy the blessing for those who may never learn to do the same won't keep my blessings coming either.  My blessings from Him are simply that: mine.  And this is obviously a time for blessings as evidenced by so much dayenu so I am offending Him by asking for such a great favor, having Him grant it, and then being afraid to enjoy it.   He cannot bless me at all if I continually throw the gifts He gives me on the ground.   Apparently I have the opposite problem of the one Job speaks of when he asks, "Should we accept only good things from the hand of God and never anything bad?”  Seems I need to relearn how to accept the good.  Forgive me, Lord, for expecting rotten apples and mirages from You who have only shown Yourself to me as good.  I still have a lot to learn.

And P.S.

I still hate that Datsun but I definitely understand the treasure in older cars (that are not junk) which is why we own a Bronco.  Mark's been fixing it up little by little and repainting it because sky blue is yet another horrible car color.

Dayenu!

"My" Doctor

Desperation brought me to his office in late summer of 2004.  We had just brought Samuel home from the hospital and his condition made him a "special needs" child x100.  It was hard to travel with him and even harder for me to leave his side for even brief intervals.  Unfortunately, my non-disposable contact lenses were well over 18 months old and my eyelids were having a severe allergic reaction to them creating large bumps inside my eyelids that felt like rocks sliding over my eyes every time I blinked.  That reaction had been going on the entire time we lived at the hospital but I managed to milk the contacts along with lots of real tears and some artificial ones too.  Unlike most people who wear contacts, I do not have a back-up pair of glasses.  I actually see worse in glasses than without contacts and with contacts, I am legally blind.  So... Did I mention desperate?  My usual eye doctor "retired" in 2003 and incidentally early in his career which usually means there were legal issues so I had no one to call during that time who knew me, and nowhere to go when we came home. 

I wasn't expecting much out of a doctor at the local Wal Mart Vision Center.  We chose to go there because Mark could take Samuel and the kids shopping (read distract Samuel here) while I saw the doc. Plus, we had no insurance and the price was right.   My hope was to get in, get something ordered and get out in less than 30 minutes.  However, I also knew that my unique eye condition was always something a new (to me) doctor liked to investigate further since most of them only read about it in textbooks but never actually see a real human with it.  I hoped this would not be the case, but by this point in dealing with Samuel's doctors, I knew how to say no to unwanted procedures that were "academic" to them but useless to me.  My condition cannot be corrected surgically.   There's no point for them to lookie-lou something they cannot offer me a solution for beyond lens correction.

To my surprise, the doctor was quite personable.  I felt at ease immediately.   When he saw my recommended Rx print out of the machine, he told me I held the new record for worst vision in this office and we both laughed.  He asked if I drove myself to see him.  When I said no, he was very relieved and we both laughed again.  He looked at my eyelids and mentioned that my contacts had certainly done that and then wrote me an Rx for something he assured me would take care of it.  We talked about switching my 12 month lens to a monthly disposable and I was thrilled when he brought me a sample lens for the eye most painfully affected.  He didn't have one strong enough for my really bad eye but I ordered a year's supply of both lenses before leaving the store.  If he had seen my eye condition before, he didn't let on in conversation.  He wasn't intrusive at all.  I left happy, 30 minutes later.

Unfortunately, when we went to fill the Rx and found out that the tiny bottle cost $95, we left it there because we couldn't afford it.  I had just dropped $200 at Wal Mart for the exam and lenses and neither of us were working.  We had to be so careful with the money we did have.  A week later, Wal Mart called me to say the new lenses were there and also that the doc wanted to check my eyes with them on.    The doctor asked me if my eyelids were better from the Rx and I said that the right eye with the new lens was slightly better, but then told him we left the Rx due to it's cost.  He was a little upset by that news and told me to wait right there in the chair for a minute while he left the room.  He came back, handed me an open bottle of the Rx, obviously out of office stock, and told me to take it.  No charge.   In 30 some odd years, I'd seen a lot of eye doctors who were easily forgotten.  I knew on that day I'd finally found "my" doctor.  The drops cleared up my lids within two days.  And the disposable lenses have been perfect for me.  I've not had any eye issue since. 

As you might imagine, making sure I don't run out of lenses is a priority.  Since we never know what tomorrow has in store, the last thing I want to worry about is milking my last pair of contacts well past their expiration date.  That just added insult to injury and was a lesson well learned.   I've seen "my" doctor every year or so since 2004.  In the last couple of years, he has been warning me that the contact lenses I wear were being discontinued but there wasn't anything popping up in an extended wear lens to replace them because the Rx in one eye is too high. (-13) So, I'd just order as many as I could afford and hope by the time they were discontinued another manufacturer would make something.   Well, all that hope hit a brick wall when in January of this year, I was down to three replacement lenses and decided to reorder.  The lens I had worn for nearly 7 years was finally discontinued July of 2010.  I searched various vendors who claimed to still have some in stock but none had my Rx.  I called "my" doctor's office to ask them to help me find a replacement only to find out that many manufacturers stop at either -10 or -12 and I need a -13 and a -9 so while I can easily get the one, I cannot so easily get the other.  They said they'd do some research and call me back.  A few days later, they did call to say that they found two daily wear lenses I could try and that was it.   I was not terribly thrilled with "daily wear" but to have them call and say there was nothing for me would have been worse.  They ordered the samples and a week later, I went to pick them up.  The first set seemed fine initially but about three hours later, was burning my eyes.  That one went to the trash.  The second set was not at all clear mainly because they kept slipping off center.  Neither one was going to work.  I was starting to worry. 

I decided to search for lenses myself at that point and found that if I could step down to a -12, I could get an extended wear lens for both eyes from two different manufacturers.  I called the office to tell them the issues with the first two and ask them to order the two I'd found with the step down Rx for the left eye.  They said they'd speak to the doc.  I figured he'd be okay with the switch since he has, in the past, given me trial lenses for that eye but they are usually -10 or -11 because that was the closest he had.   I waited a week, heard nothing, assumed they had ordered them, but called to check anyway and found out that "my" doctor was actually out of the country for the next couple weeks and the other doctor refused to order me any more lenses - period.  (nice, huh?)

It was well into March when "my" doctor came back to work.  He's 72 years old and works three days a week and was VERY busy upon returning. But he told the staff to order me anything I wanted so I again, gave them the two names asking them to step down the right eye as well to a -8.5 knowing that changing one without changing the other would not be good for me.  Another two weeks passed and they finally came in.  It's April now and I'm praying hard that they will be right.  I was down to one set of replacements in the old lenses. 

The first set, Purevision, didn't burn but they did slip a little on my eyes causing occasional blurry vision.  They were thicker than my old lens and felt like planks in my eyes.  BUT - I noticed something right away that was fantastic.  My vision was better and clearer than it had been in a very long time.  With a stepped down Rx.   I tried the other set of lenses, Biofinity, and realized just how amazing my sight with the plank lenses was.  They could not compare to the crisp, clear, bright, amazing sight of the Purevision.  They also didn't feel like planks nor did they burn me.  I called the office to try to find someone to reassure me that the planks would get more comfortable with time because I really wanted them to work for me.  They told me to just keep wearing them and see.   About a week passed and they did get better but not like my usual brand which I could put in and forget for a month.  "My" doctor wanted to see me in person when I made a decision so I made an appointment.  It's now early May.

He looked at them on my eyes and noted that they didn't sit quite right and said that this was probably the reason they didn't feel invisible to me.  He was very pleased when I raved about the clarity of the lens.  And while that by itself was simply amazing to me, I also felt that the stepped down Rx actually allowed my eyes to work and see better together.  My right eye does all the heavy labor usually but I had noticed the left eye was actually trying to see too and when the two worked together, I saw things I had not ever seen before.  I was grinning from ear to ear over it and he was thrilled as well.  It was then he told me that the Purevision lens would probably be discontinued soon because there was already a Purevision 2 lens released.  I asked him what the difference was and he didn't know for sure but (you guessed it) he went to get me one to try.  And this one was a -8, just to see if I saw even better with it.

I tried it immediately upon arriving home.  As soon as I held it, I knew it was a lot thinner than the original.  That made me really happy thinking it would feel more comfortable.  It disappeared within minutes of wearing and didn't slip either. They feel just as good as my old lenses.  The stepped down Rx was even better than the last so I ordered enough to last a good long time.  I've been wearing these over a month now and I still have moments where I cannot believe what I just was able to see.  As you might imagine, Mark is very happy for me too!

According to the vision chart, I've gained nothing measurable.  But the measurable chart starts (for me) at 20/400 which the left eye cannot make out even WITH correction, then drops to 20/200 which the right eye can make out well enough to "pass."  The next drop is 20/100 which I can only assume exists.  I did a little more research on this lens and found that others were stating they were seeing better with it as well.  For those who could be measured, it was an improvement of 3-7 feet.  That may not seem very significant when my vision is already so poor, however, what is significant is that when the eyes actually see the same thing at the same time, my vision may be improved by double in those one or two seconds.  And those one or two seconds are startling, because I'm not used to it, or more accurately, my brain is not used it. 

Babies born with nystagmus due to albinism (as I was) can now successfully have surgery to loosen the muscles in the eye that slow and in some cases stop the rapid eye movements before their brain adapts to it.  They are showing significant acuity improvement.  Those who started at 20/200 after surgery may be corrected to 20/100.  This same surgery was tried on adults but failed because the adult's brain had fully adapted to nystagmus and was unable to adapt to eyes that no longer moved nonstop.  Subsequently patients felt ill and uneasy after surgery and that feeling didn't resolve itself until the nystagmus came back, and it eventually did.   I have actually had a dizzy, disoriented feeling in the moments when my eyes stop moving and see something together.  It scared me until I realized what it was that was happening.   A normal person who suddenly develops nystagmus will immediately feel dizzy, disoriented or drunk.  They may fall down and also may vomit.   So I can see how abruptly stopping my nystagmus would be like giving you nystagmus.  Not good.  But, I do wonder now, if the nystagmus was slowed over time, would the brain adapt?  I think it would.  The moments where I can REALLY see don't initially scare me (as much) and I try to make them last longer by concentrating on whatever it is I just saw. I'm wondering if with time and practice, I might gain more improvement or if it could be a little less random, meaning I could control it more.  At this point, I was a candidate in the "no hope for betterment" category, and suddenly that is not the case.   I'm excited to see what I might see in the next year, and maybe stepping down the Rx again. 

God reminded me with the entire experience this year that nothing is impossible and He's always taking care of me. Rather well! Even when it looked worrisome, He had something MUCH better and completely unexpected in store for me. 

But, I worry that "my" doctor will retire sooner than later and I'll get stuck again with some fuddy duddy who won't happily let me experiment a little.  As I said, he's 72.  I know because he told me - because I asked him if he was planning to retire anytime soon.  He told me that he loves what he does and that he'll work until nobody wants to see him anymore. (He's in really good shape)  I cannot see that happening though, here's why.

He began his career in 1971 and decided that he was going to look at all of his patients as if they were family members.  "And if you don't do right by your family members, you never hear the end of it," he says. "Every patient is my mother or father, my sister or brother, or my daughter or son and so on.  So, I always think hard about how I can help them because they are my family."  Then he told me something he said he doesn't share with most people because they would think he was crazy, but he just felt like he could share this with me for some unknown reason....

"Let's say I have this patient, and she says she has this pain in her eye.  Well, as she is describing it to me, I start to feel that pain in my eye.  And when I feel it, I know what it is and I know what to do.  I give her something for it but my eye still hurts for a little while longer but will eventually go away.  She will return to me a few days later to thank me for helping her.  Does that seem weird?"  And I told him, "You know, I knew exactly what you mean and I believe it's a gift."  Then I proceeded to tell him a little about Samuel; about how when he was really sick, I'd feel ill, and I'd work to find the things to get him better. Then I'd know I was on the right track when I started feeling better and he'd then get better. 

I've referred numerous people to this man, and will continue so he's good and busy and continues to feel needed.  Every person I've referred knows how picky I am about doctors and also know that if I leave the office happy, the doc must be decent.  Each person has called me or literally come right to the house after their visit to thank me for helping them find "their" doctor as well.  He's that awesome.

These kind of doctors are truly rare in this day and age and I thank God that He made me desperate enough to go to a Wal Mart instead of finding another (stuffy) "specialist."  If you're local, his name is Richard Rue and you can find him at the Bonney Lake store.  You won't be sorry.  (Don't let them set you up with his partner though!)

Samuel's Kisses

Samuel went to Heaven three days before Mother's Day, 2008.  I remember briefly thinking, "at least it wasn't ON Mother's Day," as if that was of any consolation.  It wasn't like so many other "holidays" weren't ruined over his years anyway, what's another one.   At some point down the line, I realized that in 2011, this year, today, his Heavenly Birthday and Mother's Day would be one in the same.  Three years later, the dates collide.

Curiosity made me look forward on the calendar to see then the next collision of dates would occur.  That'd be 2016, five years from today also the eighth year of his relocation.   Yesterday, I was led to look backward on the calendar to see when a date collision had occurred while Samuel was still living.  It was 2005, three years before he left us.  Anyone seeing these number patterns?  There are 3's, 5's and 8's again.  Some of you might remember this post about the numerology "message" God led me to shortly after Samuel left.   The number 3 refers to what is solid, real, substantial, complete and entire. In Scripture, 3 denotes Divine Perfection or Completeness.   5 is the number of grace and divine strength given to man. Words in Hebrew that only occur five times in the Bible are gift, innocence, gladness, to sing, rest, certainty, and the Comforter or Advocate which refers to the Holy Spirit.   The number 8 in the Bible signifies a new beginning, the divine connection between the natural and supernatural, divine destiny.  For most of this year, I have been half-heartedly trying to figure out what significance God must have had in mind for this date collision. It's painful, to be certain. Yet I know Him well enough to know that if He allows us to suffer, there is something He wants us to learn, something He wants us to know, or something He wants us to find.


I decided to look back at the journal to what I wrote on Mother's Day, May 8, 2005, and to see what we were doing at that time.  I was rejoicing in the miracle of Samuel's living while journaling a play by play of the events that occurred in the year prior.   Interestingly enough, I did not journal on 5/8/06 because I had a cold/virus of some sort and felt awful.  As I write this, I'm battling yet another cold that just came on last night.  I journaled on 5/4 and 5/9/06 and when I read these words, I came completely undone.

We went in (to the hospital) on a Tuesday.  He got Vincristine on a Wednesday.  He was miserable all week, and rarely talked.  Everyone told us that with pneumonia, it hurt too much to talk.  I accepted that.  He did not want to be held.  Again, everyone told me that he would be really sore, I accepted that too.  I spent Mother's Day with my Mother at the hospital.  Mark stayed home with the kids.  Samuel had had a rough week.  The following Monday after Mother's Day, Samuel woke me up at 5am asking for kisses.  It seemed strange but I was so happy to hear him talk and ask for kisses that I gave him lots of kisses.  He held my face and kissed me five or six times.  After that, he was mostly silent for almost three months.  That was the last affection he showed me.


The day after Mother's Day, he held my face and kissed me five or six times, and after that, everything went downhill.  He stopped communicating and his body had everything go wrong short of dying.  May was a VERY bad month for Samuel.  Nearly everything bad that happened, that set him up for death, happened in May.  What has me undone is the fact that an angel had to have woke him up and whispered to him to kiss his Mama goodbye early that morning in 2004 just as one had to have done in 2008.  At the time, I didn't know that his love in those moments was to cover three months of him being in a vegetative state.  It wasn't until a year later that I realized the significance of those kisses and even then I didn't get it.  Not really.  I do now and only because it was at 5:30am, this very morning, three years ago, that he woke me up, gave me kisses, blew raspberry kisses to Mark, gave me the biggest strongest hug I have ever received, held our hands and went to live with Jesus.  An angel had to have, again, whispered into his ear.  And in both instances, he did not, with his mouth, say goodbye.  

This parting will not last forever, just as the one in 2004 did not last forever.  Both are bitter silences, with a few rays of light here and there.  In 2004, there was the brief occasion where Samuel spoke something quickly before retreating back to himself.  And in the last three years, there have been occasions where he has broken the silence as well. 

Samuel woke us up on 7/31/2004 speaking real words after 80 days of near silence and utter despair over not knowing if he had significant brain damage.  On that day, our sorrows departed and joy unspeakable filled us.  Our boy came back to us.  Our boy was given back to us and we rejoiced and thanked the Lord for it and I still do.   That day marked a positive turning point for all of us.  Hope emerged strongly on that day.

And now, today, our boy waits for us to be given to him.  What I wouldn't give to hear him call my name.  What I wouldn't give to have him hold my face and give me kisses; kisses of greeting, and not parting.  This remembrance of Samuel's parting kisses is my gift of encouragement this Mother's Day. It reminds me that this is not forever even though there are times when it feels like forever.  It reminds me also that even though he is mostly silent, and feels so far away, he's still with us just as he was in 2004.  He's waiting on God's timing just as we are.   Looking at the dates and the numerology reminds me that God's hands are always holding us and He is always good, full of blessings and surprises. He does nothing without purpose and nothing is ever random.  And this pain of waiting - I've bore it before.  It's still excruciating at times, but I am assured that joy will come and when it does come, nothing and NO ONE can ever steal it again.    And on that day, there will be joy unspeakable and we will rejoice and thank God for it for eternity.

I thank God every day that I was chosen to be Samuel's mother.  Mother's Day, for me, is a day of thanksgiving to the One who blessed me with four little ones of my own.
Happy Mother's Day!

By Example

March 26th marked the 14th year that (Grandma) Delma has been in Heaven.  Mark and I hadn't even been married a year when she left this Earth.  I feel like she never got a chance to know me...as an adult.   She departed the day before my 24th birthday.   In February of that year, I flew down to Bakersfield with Kaysha who was 4 months old at the time so I could be with Del when it became obvious that she wasn't long for the world.   Up to that time, she had always told her best friend Roberta how sad she was thinking she was never going to be able to meet her first great-granddaughter.  Words cannot describe the look on her face when I walked into her hospital room and put Kaysha, still in her car seat,face to face with her on the bed.  Perfectly cued, Kaysha said, "Hi!" with a gigantic smile on her face.  Quite something else considering that she had spent a good 6 hours stuck in that car seat between cars and planes to get there.  And yes, at four months old, she somehow knew how to tell people "hi" right on cue.  When I'd take her grocery shopping, every time someone passed, she'd tell them hi and many would stop dead in their tracks and ask, "Did she just say hi to me?"  Well, Delma covered her face with her hands, mouth gaping wide open in shock and thrilling amazement.  She was SO happy she cried.  (I can only imagine her joy when she welcomed Samuel into Heaven based on seeing this scene firsthand)  Roberta tells me to this day that she will never ever forget that moment and how happy meeting Kaysha made Delma.   Apparently, she talked about it over and over with Roberta until she died.   Delma's family meant everything to her.  Everything.  When Delma died, I was inconsolable for months and it was about 18 months before I was good for much in this life.  She was my best friend and I've missed her every day for over 14 years.

My kids love to hear stories about Delma and I love to share them but in actuality, they are not all that spectacular in the "world's" point of view.  We did not travel the world and she did not live in a glorious mansion with everything our hearts could dream of longing for.  No.  None of that.  Simply hanging out with Delma in her modest home was enough.  Eating, conversing and loving.  That about sums things up.  Because of this simple living, memories of a childhood with her are everywhere around me and I try to impart this humble enjoyment to my own kids.  The smell of bacon cooking reminds me of Delma making it nearly every morning after we stayed the night.  I smell it and hope someday my grandkids will remember me by the pleasant aromas and scrumptious meals made in my kitchen.  Sitting on the front porch enjoying a nice day reminds me of sitting in their backyard doing the same, or even better, watching lightning storms roll in and then running into the house when they got too close.  There was no rush rush at Del's.  Her favorite saying, "I have more time than money, kid."   In fall, she'd rake the leaves into a gigantic pile in front of our swing so we could jump in them.  We climbed high in her trees just to hear her say, "Come down from there.  What if you fall?"  My bathroom is oriented similarly to the way hers was and every morning I get ready for the day, I swear it's like walking into hers, and I hear her comment on how she cannot believe I don't need a curling iron for my hair.   All those trips to the market to pick out something for dinner and check out the make up isle with her alongside showing me how to "test" them properly.  We took the kids to Del Taco which just opened up near us for old time's sake.  Anna said she loved "Del's Tacos" and I sat there flooded with memories of years of eating there after a trip to the store with her.  Sitting in Denny's with her asking me to please drink some of her coffee so that waitress would refill her cup with a hotter batch.  She hated coffee that was anything less than hot...HOT!  Her little candy dish filled with Skittles next to where she sat on the sofa to watch TV.  She liked a little candy.  We do as well.  Then there's that box of See's Candies to mark special occasions now a tradition in my home too.  I could go on and on...   Truth be told, I love talking about Delma just as much as I love talking about Samuel.

Everyone here is well aware of Delma's influence on my life.  We talk about her every single day and while none of my children knew her on Earth, they know her way of living life well and cannot wait to meet her.   Delma knew something it takes most people a lifetime to learn, if they learn it at all; true joy begins with a godly home.  A godly home is one filled with the love of God and that honors His commandments.  Have these things first and everything else falls into place.   This accurately describes Delma's house.  She was all for a good time, but you better honor God while having it.  She was not shy if you needed correction but God's grace abounded in her methods of discipline.  You could confess any sin to her and know you'd be met with unconditional love as long as you did so with a repentant heart.   I miss that more than you know.  We are all human and we all make mistakes.  However, one of the worst things "Christians" do is chastise a mistake or sin you are repenting of.  Repenting means you know it's wrong, and you are sorry.  You want to make things right and STOP doing whatever it was.  This is where compassion is needed, not hellfire.   Del met you with compassion in such circumstances looking for ways to help you make things right, both in your own heart, with God and whomever else may be involved.  And ever after the sin was spoken of, she never NEVER used it against you at a later date.  Once repented of, it was forgotten, just like Jesus forgets.   I so miss my Delma!  We all need someone in our lives like this!  Like the Lord, she was 100% trustworthy.  That's a rarity today.

For this year's Heavenly birthday, in Delma's honor, I prepared a traditional Thanksgiving dinner (turkey and trimmings) and invited "so and so" and his wife to join us.  You remember them, right?  I mentioned them in this post.  Our friends who have been married a very short time who are looking for true joy in all the wrong places. 
As a result, their home life is not filled with happiness and laughter as ours is or as Delma and Mac's were.  But rather than giving them an ear full of words that would have most likely went in one ear and out the other, Mark and I chose instead to bring them into our loving home hopefully providing them an example that appreciating the simple things such as the ones you love and a good (okay, awesome) meal is where real joy finds it's roots.  Same as Delma did for me.  Delma's greatest "fruit" in life was providing an example; being a role model of a godly lifestyle.  If you live it, that is compelling enough; words are often unnecessary.  I'm by no means suggesting that I am a Delma quality godly role model.  No.  I have a long way to go to get to her standard.  She set the bar high.  But this I know, our marriage has been tested by fire and that fire has only made it stronger.  Mark is as much an integral piece of me as my arms, legs and even heart are.  I cannot imagine a marriage any other way and this amazing relationship and love is something I wish to impart to our friends.  I learned that this kind of relationship is possible by observing Delma's marriage and wanting that kind of marriage as my own. I work every day to keep our love watered, nurtured and growing.  Godliness leading to true joy in life starts in the home.   Did our guests leave with a "Delma" seed planted into their lives?  I don't know.  They were never made aware of the significance of the date for me either.   What I do know is that they were welcomed with open arms into our household as a unit, not as two separate people who don't get along, and my kids (two anyway) lavished love on them.  We laughed and enjoyed good conversation, then we all overate and enjoyed every second of it.  Even Samuel showed up to turn on the TV  about five minutes after we retired into the back room.  Explaining Samuel's TV antics to them was quite comical and if anything, I'm sure that made an impression, LOL!  Even he can't stay away.

Godly role models are so lacking today and the consequences are stunning, and not in a good way.  Divorce!  As I've pondered this post, I have fully realized the tremendous impact Delma had on my life, not just as a grandmother but as a Sister in Christ.  She was filled with the Lord's unconditional love and if people didn't see it, it was simply because their hearts were so full of sin that love no longer registered.  Certainly, she had two children and five grandchildren which she nurtured in very similar ways and yet many of not most chose paths away from Jesus looking to worldly ways for joy and satisfaction in life.  Two of the seven are dead now neither finding satisfaction.   

Often we miss what is right in front of our faces.  Some people actually scoffed at Delma's simple life and her complete entanglement with Mac in marriage (which was most evident when he died-part of her died as well).   She had no great worldly accomplishments, nor vast fortune, but what she did have money cannot buy: divine love.   The true test of a life well lived is is people speak well of you you and your wisdom after you are gone.  Do they remember your name at all?  As long as I live, Delma's name and "fruit" will be spoken of and learned from.  I hope my own children will recognize what she lived to teach and learn this valuable lesson well.  Joy begins with a godly home.  Every blessing on top of that is icing on the cake.