Wednesday, November 26, 2014

Raw

I hate when I dream Samuel died again.  It's bad enough it happened at all.  But to occasionally dream about it happening all over again - it's really not necessary.  This particular dream was oerwhelming because I touched him.  I felt him.  I held him.  He was alive.  I looked in his eyes.  I saw him move.  I saw his body full of life again.  And then I left him, in my bed, just for a minute and when I came back to him, he was lifeless.  Dead.  Again. 

I couldn't believe it.  I didn't see it coming.  Usually in dreams, he does eventually die.   Rarely, I wake before he dies.  As in real life, I am generally there to the bitter end refusing to give up a second of being with him because  I know death is inevitable.   Even in my dreams, I am somehow prepared for it.  But this time, I guess I forgot. and It was a stab in the heart.  I walked out of the room leaving him alive and he died in the few seconds I was gone.   Insult to injury.

I immediately held him.  I caressed his body.  Begging life back into it.  But there was nothing to come back.   No amount of denial, touch or prayer would bring him back.  I did not want to accept it.  Not while his body was still in my presence.  In my bed.   I kept leaving the room and coming back to hold him oddly enough thinking it was a bad dream and if I left and came back, all would be right.  But it wasn't.  I lifted him up to a sitting position and his head rolled around.  I thought I saw his eyes flutter.  I thought I heard a sound come from his mouth.  I thought I felt breath.  I hugged his body, still warm and pliable, and willed it to breathe, to hug me back, to come back to me.   But I got nothing.  Just my imagination thinking I saw this and thinking I felt that.   I began to sob uncontrollably, something I have never once done since Samuel left.  I did not "keep it together" for my family.  I lost it and I didn't care who saw it.  I was completely unwilling to have Samuel's body moved from my bed, taken away by the funeral home man as it once was.  I did not want him taken away from me again.  I was convinced that my touch would somehow revive him.   I did all the things in the dream the part of me that was screaming from being ripped apart wanted to do on the day he really died.   Delayed reaction I suppose that needed to be lived out....for all the good it did.

I then woke up.

It's hard to not wake up feeling the pain of it all, all over again.  Walking around the house thinking the same old thoughts I thought I was done thinking and feeling.  He's gone, all over again.  He was just with me.  I was just with him.  I touched him.  I held him!  And now he's dead all over again.  I shake my head, as if that will shake the pain away.  But I feel it as if it never really left me.  Apparently I just got good at ignoring it.   That is my first impression as the sadness grips my soul, I must just be good at ignoring it. 

I don't want it to hang around.  I want it to leave.  I have felt this horror more than enough.   Experience with it reminds me that it won't hang around long.  The only reason it is SO raw is that I literally touched Samuel.  I held him.  I rocked him.  I FELT his body, warm and living.  I saw his beautiful eyes open and his face smiling.  If I didn't know better, I'd swear I was JUST with him.   And that is why it feels as if the wounds have all been sliced open and I am walking around bleeding out. 

Quite simply, this is the pain of separation.  It is the pain a mother feels when she cannot ever again on earth, physically touch, hug, kiss and love her child.  And that child will never again on earth, do the same.  This is the pain I've learned to somehow by some miracle ignore.  That precious loving touch.  That feeling of bliss we both shared whenever we were together.   Everything could be wrong but we were always alright as long as we were together.    I miss that more than words could ever express.  I miss Samuel, my best friend. 

So many times in his life, I was reminded that it would most likely be short.  I wanted to believe anything but, but I still lived savoring every moment just in case.  Drawing nearer and nearer to that precious child.  Being his everything and in so doing, he was everything to me too.  Mark often wondered aloud whether I'd survive and be "okay" if Samuel died.  He understood our most precious love for each other was something that words fail me to adequately explain the length, width, and depth of.  He was never jealous of it.  He respected it.  But he worried for me after Samuel left us, for quite a long time.  The knowing that he was finally healed, finally truly fine, better than fine, made it so I could go on without totally losing my sanity. 

Everyone on earth has or will eventually lose a loved one, but how many of those fought as hard as I did to save that loved one's life?   This sentiment allows me to live without regret but at the same time, the depth of the sorrow of life without Samuel is still massive and I know this is why.

I often - often - more than I ever care to admit, wish Samuel was with me. Healed, of course, I will always qualify that statement with "healed."  There have been many times recently, even in the last few days, where I have been sewing and felt a strange breeze come across my face and I wonder, was it him.  Did he hear me, feel me, longing for his presence.  I have felt that breeze and immediately turned around to see who was behind me only to find no one and no explanation for the wind.   He used to wander into my sewing room often to watch.   He'd stand right beside me impatiently waiting for me to sew something for him.   I am currently sewing a special gift for Daniel for Christmas and have spent quite a lot of time wondering what Samuel would think of it.  It is something I wish I could have made for Samuel too and in a way, I have, but he will never receive it here.  So I sew and I wonder what he'd think.    And then a breeze will just blow in from nowhere and I wonder..... 

I try to focus on the positive.  I actually touched him.  I got to love him in person again.  And it's been awhile since this happened in a dream.   When it does, it is always bittersweet.  Wonderful while he is alive and horrible after he dies.  But I have to believe, it's better than nothing.  6.5 years is a long time and God knows how much longer it will be until we can forever be together.

Life cycles on.  The trees are dancing while the leaves are dying, blowing away in the wind.   Such is life.

Friday, September 5, 2014

Housekeeping

Samuel's site remains up for anyone who is searching for a different approach to cancer and feeding tube help despite it being over six years since he went to Heaven.   The information and memoir of Samuel's lifetime is significant enough for me to continue paying for the site to remain available to the public.   Samuel's diet page alone has helped countless people nourish their children and even adults with feeding tubes better than they ever thought possible.  Quality of life has improved significantly for so many people that naturopath's whom I have never met or spoke with are sending people to Samuel's diet pages and using them as a reference for getting people off conventional formula.   This is always good news for me to hear and I enjoy helping people in this respect.  It is amazing how many of the foods and diet tricks I used for Samuel work SO MUCH BETTER for people with a digestive tract that hasn't been destroyed by chemotherapy.  What used to take me days to see improvement with, people with healthy guts see improvement with in just hours.  This information simply reinforces my thought that if Samuel's gut had not been destroyed in that first month of chemo, he'd still be with us today.  This information also helps me understand even more than I did way back when, that his gut was destroyed beyond anything we were ever told and there was no coming back from it.   Keeping him alive as long as he was - was nothing short of a miracle.  The more time passes, the more people I work with, the more I am in awe of what we were allowed by God to do.  Samuel suffered greatly but lived long enough for me to learn enough about the gut to be able to spare others many issues.  When I was a teenager planning my future "career," I never thought it'd be what it is.  And note here that I do not get paid for any of this nor do I ever ask for compensation.   Countless people helped us freely, gave of their time and their money to support us through the most difficult years of our lives and I am thrilled to be able to pay it forward and see such wonderful results.  I simply ask that people respect my time, my heart and most importantly, Samuel.  Understand that this information came at a great cost emotionally, physically, mentally and yes, financially.  In the end, I feel Samuel gave his life to help innumerous people.  He paid the ultimate price.

Over the last many years, a much smaller portion of the people who contact me personally are searching for an alternative to poisonous treatments.  Unfortunately, a good majority of these are people whose children have already underwent extensive chemo, radiation and even transplant to no avail.  Some being given months to live contact me in utter desperation.   My heart goes out to them having been in a position where everything has eventually failed and one must face the reality that their child will die.  A lot of times it isn't the parents contacting me, it is the next of kin because the parents are buried in grief.  It is exceedingly difficult to explain to people that alternative treatments are not just something you can do at the drop of a hat.   There must be planning, research, courage, partnership with spouses, support people and the oncology team, and most importantly 24/7 commitment.  One simply cannot start juicing green foods and expect that to accomplish anything.   In short, many are contacting me looking for that magic bullet, quick and easy solution, and there isn't one.  The majority of these people have never taken the time to read any portion of Samuel's journal, simply skipped to the chemo pages and therefore have no real idea of the time, effort, ups and downs, pain and tears that go into this process.   Granted, most of these people simply do not have the time currently to do so, but that is my main point here.   The time to look at alternative choices isn't when your child has been given weeks to months to live.  It is well before that.  Why?   Because as I stated above, it takes planning, research, courage, partnership, and a 24/7 commitment. 

When we removed Samuel from chemo entirely, I had 18 months to plan out what I'd do if he relapsed.   When the worst came to pass, I was not left grasping at straws.  I had a solid plan.  I had done the research and was continually doing research as time passed.  I had more than enough courage to follow it though and one might think courage isn't one of the most important factors here but it is.  The whole system will be against you.  They will scoff at your plan and they will minimize your successes.  If you don't have a thick skin, you will cave under the pressure.  I had partnership, as best as it could be, with the Oncology team, great partnership with my husband, and with the untold numbers of people supporting us.  I was already committed to Samuel 24/7 because of all the issues the MD's saddled us with so that wasn't anything new.  It was just one more thing to contend with in a very large pile of issues.  But for the people contacting me, all of this is new.  It is a total 180 degree shift from allowing the MD"s to direct care - to THEM directing care.  They would have to be willing to now shoulder the majority of the burden of their child's care and treatment.  The bottom line is, they are not ready to do that.  Again, because of the afore mentioned reasons.  When I go into these things, the overwhelm factor is over the top. 

What happens when a child relapses with ALL?  The first time, a choice is given as to move to a high-risk chemo protocol possibly with radiation, OR go to transplant.  If a parent chooses the HR protocol and the child relapses again, transplant is the next option.  If a child relapses after transplant, depending on the physical health of the child, they might be a candidate for another transplant.  But if not, the choices are to go home and die OR enter them into a clinical trial for some new experimental drug.   What you should glean from this info is that the MD's have a Plan B, a Plan C, and possible D, E, and F depending on how long your child can survive these plans.  After Plan C, whatever your child endures in conventional or experimental medicine is purely academic.  Your child becomes a human guinea pig.  Are you okay with that?  Many rationalize this in their minds because it "might" work and it "might" help another child one day.  After all, it is for the advancement of science.....  The fact is, there hasn't been advancement in ALL treatment in decades.  Samuel's protocol was written in 1967.   The "proven" protocols of today consist of the very same drugs used starting in the 1960's.  The only differences is they are used in higher doses leading to higher toxicities and more long term consequences.  Compare this to Samuel.  At relapse, his WBC was 50k of which 40% were blasts and we were able to get that into remission with NO chemo at all.  It took two months, but we didi it.  So, it is possible.  It is.  But YOU have to do all the legwork.  Blood, sweat and tears.  And obviously, even that is no guarantee.  But think for a moment.  What if, instead of scoffing, our Oncologist actually wanted to know what we had specifically done to achieve the "impossible?"  What if he wanted to truly "advance" science?  Might things be different today?  A rhetorical question, I know.  Another is, do researchers REALLY want to cure cancer?  My answer is no.  The cancer industry is rich and getting richer because of the desperation of parents to see their children live, no matter the cost.  And again, this began prior to 1960 in earnest.  Prior to that, there was no "chemo."  It was unthinkable.   Samuel's GI once asked me why our story was never covered on the news channels.   "Remission without chemo."   Well, because food is not FDA approved and if food was the real cure, a lot of people would be out of a job.   That is the sad fact of the matter. 

I have watched this process for over ten years now and found that children who relapse after transplant generally don't live long no matter what is tried.  Transplant is a drastic and torturous approach to cancer and yes, some children do survive it, but with numerous long-term consequences.  I know of one who relapsed during Samuel's lifetime, was transplanted, and five years later, developed brain cancer and subsequently died.  When they tell you that chemo and radiation can cause secondary and often worse cancers, they are NOT lying.   The question needs to be asked...what horror are you saving them up for in the future as a result of today's "lifesaving" treatments.  Is there a different option?

My father told me early on to save Samuel's life and worry about the side effects later.   For me, this thought process was NOT okay.   NOT okay to cure the cancer and destroy his mind and body in the process.  What kind of life were we saving him for?  Was it a life "I'd" want to live?  No, it was not.  Following the Golden Rule here, would I want all of this done to MY body?  No.  I am often asked, "What would you do if this were your child?"  And I tell people these things as plainly as I write them here.  The horrors that Samuel endured in the first three months of treatment I find children who are put into every last ditch protocol experience some form of in their last three months of life.  They often die very tortured deaths and the parents not only have the grief of loss to contend with but also the guilt of the consequences of the treatments they chose as well.  Then I follow it up with, "This is the parents' decision to make, not mine, not the grandparents or next of kin or whomever I am speaking with.   Ultimately it is the parents who will live and die with the decisions they make for their child."  

Make no mistake, these are gut-wrenching decisions.  My strong opinions are based on my experience which from start to finish wasn't ideal, "normal", or anything I'd wish upon anyone else to experience.  The bottom line is, if you are thinking of doing something different than conventional treatments for cancer when opportunity arises, which in the US, is generally after a relapse or two because of CPS, you need to do your homework before the time it smacks you in the face.  If you are an adult, you have more freedom of choice for cancer treatment but at any rate, if and when it happens, your Oncologist will have a plan and if you don't have a plan, you will be in troubled waters.   The time to begin shouldering the burden of care is well before a relapse or even a cancer diagnosis occurs so that you are educated and ready to act.

I want to end this post be directing you to the spiritual side of this.  If you are a Christian, your life as well as the lives of your friends, family and children are NOT your own.  You were bought and paid for with a price.  Jesus gave his life so that those who believe in Him could reside with Him in peace and health and divine love for eternity.  So I ask you, if you truly believe this, is physical death REALLY the worst thing to happen?  I ask because when your child is facing death and eventually does die, this belief will be tested immensely.  It certainly was for me.   What was once a belief is now a gut-knowing for me.  Samuel is free and healed and more alive there than he ever was here.  For that, I am eternally grateful.  Do I ever wish he was still here?  Yes, but not in the physical condition in which he lived.  I'm glad he is in Heaven because his life was hellish here at times.  I cannot wait to be with him again but until such time, I am to live according to God's will, His choices for my life, and not my own will.   This is not the life "I" planned for myself.  That in itself is a hard lesson to learn but one I have learned.  Work with God no matter what He's put on your plate.  Resistance is futile.  The plate just gets bigger the harder you fight Him. 

In this life, there is much heartache, trial, and tribulation.  We were never promised a rose garden here and anyone who tells you different hasn't read their Bible and is serving a false jesus.  If you belong to the One True God, suffering is a part of life but is not in vain.  There is a purpose to it and Samuel's legacy is proof of that.  

Samuel belonged to God.  God loaned him to me for six years and seventeen days and I am grateful for that opportunity beyond what any earthly words can express.  The hardest lesson of Samuel's life for me to learn was that Samuel was never mine.   Yes, I was his mother and during the time he lived, the Lord trusted me enough to take care of him.   Ultimately, he belonged to God and came here long enough to fulfill God's will for his life.  Was that will to suffer immensely and die?  Was that all there was to Samuel's life?   Only a person without spiritual eyes would answer yes here.  Everytime a child or adult's quality of life is improved by what I learned from taking care of Samuel, I am reminded that God's will for Samuel's life was to help others with all that was learned.  That alone barely scratches the surface of the treasures I have gleaned both on a very intimate level as well as the spiritual lessons I've been able to share with others because of Samuel.  

The ripples of God's will for Samuel's life continue to bathe not just my life but the lives of many.  Yes, we are still sad that Samuel is not with us.  Yes, the grief still grabs us when we least expect it.   But, no, suffering and dying from cancer  is NOT what Samuel's life amounted to.  Nor is that the case for any other child who has been stolen from any person via cancer or any other means.  There are many Godly purposes to be gleaned from these lives - it simply takes time for us to grieve the loss completely, a willingness to trust in God's goodness in all things so we may see the purpose in it, and an additional willingness to personally finish the work that He started in that child's life.  People often ask me how I can work with them, dredging up all these memories and griefs of Samuel's life.  They say if it were then, they'd never have the heart for it.  It is hard for them to understand what I've just written.  I have grieved thoroughly.  I have trusted that God had a bigger and better purpose for all this than what human eyes could see and was willing to have Him reveal it to me in spite of my loss..  Finally, I have been willing to take over where Samuel left off.  Yes, it is hard sometimes.  But as I've said for a very long time now, I can do hard things.  God provides the strength and I (mostly :) do as He asks.  I am continually blessed and comforted in all of it.

May the Lord comfort and strengthen you,
Jen

Thursday, May 8, 2014

From the Shadowland

Ecclesiastes 7:1
 A good name is better than a good ointment,
And the day of one’s death is better than the day of one’s birth.


Samuel has been home with his Father in Heaven for six years.  To God be the Glory.  Amen.

Tuesday, September 3, 2013

Summer Recap

 
 
It's amazing how fast summer passes here.  Mainly because we rarely have a summer that is filled with tons of warm days.  But this summer was that rare one where the warm days have gone on and on allowing for enough outdoor activity that once the rains return, it is a nice change.  A welcome change.   My garden is thrilled anyway. 
 
 
Kaysha and Anna began their summer on stage.
 
 
 
 
 
 
 
 
 
 
The dancing princesses worked hard during the year and gave spectacular performances.  We were very proud of them.  Kaysha had performed in a dance class on this very stage when she was five years old.  Funny how time flies.   This year they are moving away from being the dancing princesses in order to become karate queens.  They are both loving that!
 
We found much time for kayaking this summer as well.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
And then there was swimming and camping too.
 
 
 
 
 
 
 
 
 
 
 
And of course, hiking.
 
 
 
 
 
 
 
 
 
Outdoor cooking with home grown veggies.
 
 
 
 
We made some new friends.
 
 
 
I got some new transpo.
 
 
Okay, when Mark rides my bike around the neighborhood with "Blubber" on the back, half the neighborhood comes outside to watch.  Blubber, aka Diego, aka Tubby, (he's really fat now) is one of the not-so baby anymore, babies, from the litter we had nearly three years back.  He is the go anywhere, do anything dog.  He hikes 5-6 miles with us like it's nothing.  He camps happily.  He goes out in the kayak like he was born to.  And he loves the motorcycle as well.  I don't think there's anything he doesn't like.  He even likes baths!  He ended up weighing 20 pounds and that is 20 pounds of pure love and joy. 
 
Daniel went on the trip of a lifetime, or at least of his lifetime thus far, to California and hit three of the big amusement parks there.  A family who lives nearby took him along on this huge trip.  They refer to him as "the son they never had" even though they have two of their own sons.  Yeah, they love him dearly.  He seems to have been born into good fortune because opportunities seem to always come his way.  Via skype, he has friends seemingly worldwide these days and is quite congenial.  I do believe it is his good nature and trustworthiness that attract such good fortune and I am glad for that.   He has a kind heart and always has.  And for a nearly 15 year old who already stands 6'2" and wears his dad's clothing, he needs to be a gentle giant.  
 
My kids start school tomorrow while the rest of the neighborhood started today. The house seems quiet compared to usual given that it has become the hang-out spot for a pluther of the kids around here from morning til night.  I am enjoying the silence to be honest.   I like that so many kids enjoy being here but I also like it when my home is more "mine" than theirs too.
 
Kaysha will be a junior and Daniel will be a freshman this year.  Both are schooling entirely online.  Kaysha has been for the last several years but this is Daniel's first year without me as primary teacher.  I'm sure there'll be an adjustment period.   Anna will be in fourth grade, still homeschooled by me.  I am looking forward to working solely with her.  Of the three, she is the strongest in academics, has the most patience with learning and enough perseverance to excel.    Kaysha has a lot of artistic talent whether drawing, dancing, writing, or acting.  She excels.   Daniel has a more mechanical bent and good computer literacy as well.   He is still quite the comedian so if you need a good laugh, you know who to call.   It's such a treat to watch them grow and change and mature.
 
It has been just over 5 years since Samuel went to Heaven and not a day passes that he is not mentioned here at home.  As we guide our teenagers into adulthood helping them to determine their place in this world and what kind of a footprint they want to leave on it, it would be easy to feel cheated because we do not have that same opportunity with Samuel.   In a physical aspect, we do feel cheated.  How could we not?  But in a spiritual and eternal aspect, we don't.   His life has made an impact on this world.   There has hardly been a week that has passed since he went to Heaven that I don't get a note from someone who has been inspired by what we were able to accomplish during his lifetime.   Someone looking for answers.  Someone looking for help.   
 
The most heavily visited page on his web site is the page on feeding real food through a g-tube.  And as time passes, I am clearly seeing that this is the footprint he has left behind; the one that many people have chosen to follow.  People who wanted what we wanted.  To give themselves or a loved one a better quality of life using nutrition as primary medicine.  Whether the ailment is major or minor, life threatening or simply life complicating, people are finding Samuel's site and being encouraged to try and not only try, but succeed.   Most of them are not cancer related at all.  But when they see how much good solid nutrition extended not only the quantity of Samuel's days but also his quality of life given all his medical issues, they are more than encouraged that nutrition can be a basis for healing.  
 
That is not to say that I don't still hear from families with children fighting cancer who are trying to buck the system.  I do.  But they are few and far between because it is SO hard to get out from under the pediatric cancer cult and of course fewer still who see poison as bad "medicine."  Those who do manage to break away, hope as we hoped, that maybe their child will be one to survive against the odds.  Maybe their child will be the one that makes conventional therapies finally come into serious question.   I wish I could tell you I know of one who bucked the system and cured their cancer without chemo.  But to date, there hasn't been one.   Not yet.  With the total lack of support in the pediatric system, I am not surprised.  It is a rough row in a swamp full of alligators.  What I have seen is quality of life being honored and sometimes fought for if need be.  I see people who have been told by their Oncs that their child will relapse and die within a few months of stopping chemo having that child live happily for years before dealing with relapse simply through nutrition and alternative cancer treatments.  I am also seeing kids live with active leukemia that is controlled enough by alternatives and nutrition that they don't require blood products, antibiotics or hospital stays to manage it.   In short, they are not "blasting off" as one of our Oncs used to call it.   That is HUGE!  
 
What will eventually be known worldwide about all of this progress, I don't know given that anyone who controls their own child's cancer effectively without conventional medicine is referred to as a "fluke" by their own doctors.  I imagine this minimizing must help ease their guilty consciences.  And when unconventional methods fail, they generally cannot wait to say they told us so.  But of course, they fail to acknowledge that their precious chemo eventually fails as well only with significantly more physical and emotional consequences.   Funny how they never want to "go there." 
 
What I do know is how I feel in my heart.  I tell these families who venture into the shaky ground that we walked on that at the end of Samuel's life and for all the years that have passed, I have had no regrets about choosing the path I did.   I know that chemo would have both shortened his lifespan and tortured him to his death.  That was something I wasn't going to be a part of as long as the choice was mine to make and thankfully, that choice, once mine, was never reascended.   God help the person who dared to try.  Mark and I were always on the same page about things and never did one thing we weren't agreed on.  This is too hard a path to travel if you are not in agreement and given the divorce statistics of marriages after a child has died, this cannot be overlooked.  The rest is up to God and it helps if they believe in God to begin with.  Samuel's legacy was never about cancer and never will be.  Cancer doesn't reign supreme where he lives.   It was about love, perseverance and building faith in God.  It was about people helping and caring about complete strangers and doing what their hearts told them to do..   From beginning to end.  In good times and in horror.   Those were the best of times and the worst of times but times nonetheless that I would never have chosen to miss.  Samuel has left a huge footprint on a lot of lives and continues to do so and as I look back, I cannot help but be proud of being a part of that.
 
 
 
Onward and upward ever faithful to the call til we meet Him in the sky.

Hope this post finds you all well.
Love,
Jen

Sunday, April 14, 2013

What Happened to the Babies?????

Suddenly, two of them look pretty grown up and one looks a lot like Samuel.
 
 
Kaysha, age 16

 
Daniel, age 14

 
Anna, age 9
 
 
We're still kicking around.  Everyone is well.  Still seems odd to post pictures without Samuel.  Some things never change and this is one thing that I doubt will.  He would be eleven next weekend.  We try to imagine that.   Cannot really.  When Mark saw him in the dream he had just shy of a year after he went to Heaven, he thought he looked more like 12 than nearly 7.  That is the image he saves in his heart. 
 
Samuel is ever always around.  We still "notice" him and for that I am grateful.
 
I miss having "the babies," when there were four of them.  But I am enjoying the freedom that has come with their becoming young adults.   They are gentle children overall.   Kaysha is learning who she is as a young adult, making and taking great strides as such.   She continues to be very artistic and in more ways than one.  Daniel is a gentle giant, dramatic to the point that you cannot stop laughing sometimes and then he hams it up more.   He calls me "Mommy," even in front of his friends and I love it.   Anna is still a cross of Samuel and Delma but adds her own flavors into the mix.  She is very cheerful, helpful and mature for her tender age of 9.
 
Mark is still working at the University and that is going well.  We took up kayaking in addition to our hiking and camping adventures and are absolutely loving it.  I am still doing what I've done for years now.  Loving my family, schooling, sewing, you know, the usual.  
 
Bud turned 20 this year and is doing the best we've seen since bringing him home in 2008.  He acts like a 5 year old with the digestive tract of a 20 year old, that's all.  I know how to keep him safe from his overeating issues.
 
The dogs, all five of them, are the best!   It's good to have a "large" family of humans and critters.
 
We live a quiet life raising gentle, kind children and we enjoy that immensely. 
 
Hope you are all well.

Friday, June 1, 2012

The Girls

The girls are 7.5 years apart.  Seems like they'd have little in common with that kind of spread especially now as Kaysha is nearing 16 and Anna has just turned 8.  Well, age is not an obstacle to love.  Their bond formed from the era when Samuel was still with us is still as strong as ever.  Together they intertwine a wonderful mix of beauty, innocence, and attitude. 






















If you are wondering where Daniel is, he's still has camera phobia. 

Tuesday, May 8, 2012

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