Who is caring for the caregivers?

My little disclaimer:  I write this from zero caregiver experience.  However, I happen to be married to one of the most incredible, hardest working caregivers that I have ever met.  I write this blog for him, much from our own personal experience!  He is the unsung hero in all of this!  He is the one who is often forgotten in the shuffle, yet bares the biggest responsibility.  Like so many caregivers, he is the knight in shining armor behind the scenes!

Who is Caring for the Caregivers?

This particular subject is very dear to my heart.  I am married to my very best friend, who without questions asked, bares his cross daily to be my caregiver while still caring for our 3 children.  I've had to watch my illness affect the ones I love.  I have had to watch my husband, while still making a living, bare the burden of running our home and family as all the responsibilities fall completely on his shoulders.  I've seen him cry; I've seen him be angry; I've seen him become scared; I've seen him be overwhelmed; I've seen him sacrifice without complaint; I've seen him bare it all; and I've seen him work until there was nothing left to give.

Caregivers are as different as the flowers in the fields.  Caregivers are the ones providing care for the sick, elderly, terminal, or chronically ill.  A caregiver can be an adult child caring for an aging parent who is losing their independence, or could be a spouse with grown children who is dealing with a sick or chronically ill husband or wife, or maybe a parent who has a child with an illness or disease.  One of the most difficult caregiving roles is a spouse who must become a caregiver to their spouse while still having young children to care for, as well.  All of these are often the unsung heroes who must toil and labor with very little relief of stress. (I've inclosed some caregivers tips at the bottom of the blog).

Just 3 years ago, I ran the home from top to bottom.  I was in charge of all of the many, many tasks of running a household.  With 3 young kids, this was no small feat in itself.  It was a very stressful, yet rewarding, full-time job.  There were groceries, parties, shopping, cooking, planning, carpooling, school projects, cleaning, organizing, deadlines, sports, trips, scheduling, doctor appointments, gardening, baking, errands, homework, and soooooo much more!  You know that little list is putting it mildly!  But today, because of the gravity of my illness, all of this no longer falls on ME.  It must fall on an already overwhelmed spouse.  I've mentioned before that I'm married to a doctor whose practice depends on him every day.  You cannot just cancel a clinic full of patients because your child needs to see a doctor that day.  However, what do you do when you are the caregiver of not only 3 children, but now also, a chronically ill spouse?

I've watched the toll it's taken on my husband, personally.  It's been difficult to watch.  One of the hardest things is knowing that no matter how bad it gets for him, there is still nothing I can do to jump in and relieve his stress, as I could have done years ago.  I've had to observe from my bed as every task falls on his shoulders and becomes his ultimate responsibility.  Most women out there would attest to the fact that men were not designed to run the house.  Can I get an 'Amen'?  Not only were they not designed that way naturally, they often have no desire to do so!   My precious husband has had to do more than his fair share of trying to take on this new role and all of it's 'unglorious' responsibilities.  While he doesn't have to physically scrub the bathrooms because we have someone to do that, every single task falls to him day in and day out!  He cannot depend on me to take over much because of the unpredictability of my illness.  I can be folding laundry one day, and be lying in the bed not able to move the next.  It's all on him all the time.  He must come home from work every evening and jump into multiple roles plus caregiving.  Of course, David has had the benefit of temporary help from out of town family and friends, rides during the day for the kids from his parents, some meals graciously provided during my long hospital stays, and some much needed vacations to help keep him sane. We've worked together as a family, teaching our children along the way to help and participate in our family unit, and tried to make the best of a very, difficult situation.

Having young kids at home has brought the term 'caregiver' to a whole new level.  My husband must literally do it all 24/7 or find a way for things to be done.  He is always on call by himself:  if a child needs a ride, school projects, sick kids, grocery runs, all errands, every project, cleaning up after meals, clothes and shoe shopping, returns, repairs, birthday parties, gifts, holidays, entertaining, carpooling, sporting events, school functions, all last minute pick ups from the store, yard work, church, picking up around the house, putting the kids to bed, making sure things are picked up at night, outside jobs, car maintenance, weekend meals, nightmares, boo-boos, extra-curricular activities, and the list goes on and on and on and on........   And in addition, he must also care for his sick wife which can include:  middle of the night hospital runs, weeks on end hospital stays, doctor's visits, out of town trips to medical centers, administering injections, wheelchair care and maintenance and assembly, insurance hassles, picking up medicines, bi-weekly blood draws, (at some point-in home IV therapy), picking me off the floor, caring for me when I'm too sick to walk, knowing when I'm going to pass out or not, protecting me from falls, getting me nursing care, being available 24/7 for one of the dreaded phone calls, checking my vitals, pushing me in my wheelchair, making travel arrangements, getting up in the middle of the night with me if I'm sick, making sure my social needs are being met, fitting in time to be a husband-wife, reading things to me, making sure I have the food available for when I'm too sick to get it myself, serving me in bed, cleaning up for me, putting away my things that I cannot, teaching the children how to care for me when I'm unconscious and how to get me to the bed safely, taking me out for some fresh air, helping me get in and out of the pool, buying safety items for the home and shower, holding my hair when I'm getting sick, holding my hand when the pain is more than I can bare, being my voice to the doctors when I cannot speak......and many other things that are too personal to share.  And let me just add.....this is all in addition to an extremely demanding job, medical practice, and continuing medical education, which was enough all by itself.

Putting the physical stress aside, there is another huge component.  The mental stress of the caregiver.  I heard over and over again from other caregivers how the guilt literally becomes a driving force of over working.  There is an element of guilt that goes along with being a caregiver.  You watch your spouse, your child, or your sibling suffer and often times suffer greatly.  You cannot put yourself in their shoes and feel you have no right to complain.  However, in that process, the caregiver neglects to restore and renew themselves.  Who is feeding back into them? There is something overwhelming with being responsible for everyone all the time. It's being a CEO like no other, and they never, ever get a mental break.  There can be fear and sadness as you watch your counterpart suffer or deteriorate.  You feel helpless and powerless because you cannot take away the physical pain.  It can weigh heavy on anyone's soul.  When one realizes they cannot be everything to everyone all the time, a sense of failure could set in.  The caregiver could now be faced with feelings of: guilt, failure, stress, sadness, helplessness, and intense pressure.

The lists break my heart.  It's tiring to read it, write it, but dear God, what's it like to LIVE IT?  I would like to say I could put myself in his shoes, but I cannot.  I've only seen it from my end.  I've imagined what it would be like to have a spouse who you have to watch suffer, loose abilities, cry in pain, and wither away in front of you.  But I cannot imagine the immense STRESS that must go along with living the life as a caregiver in this capacity.  So, I ask, who is caring for our caregivers?

As I became sick, I was surrounded by several individuals who took time out of their busy lives to minister to me.  I had lost so much, but was continually being reminded that I was not forgotten.  I have continued to receive cards from people all over this country.  To this day, I get blessed with each scripture, word of encouragement, or funny little note that comes in the mail.  I even had a dear, sweet lady (whom I've never, even met) send my daughter and I a recorded book because she had heard I had trouble reading aloud.  The emails, texts, letters, surprise visit from classmates, gifts, boxes and baskets, dinners, and more have all been FOOD FOR MY HEART, SOUL, AND MIND!  In fact, sometimes, it was the thing that pushed me through yet another tough week.

But, I became worried at one point, that while I'm being lifted up.......my husband was barely holding on!  His stress, pressure, responsibility were all draining him, and his cup wasn't being re-filled.  I remember reaching out to a few men to try to help support David in the beginning, as his world, too, had crumbled down around him.  After all, it was his dreams, his life, his wife, and his world that also got shaken and turned upside down.  It got me thinking.......as a society......are we forgetting about a whole group of people....the CAREGIVERS!

As the baby boomers continue to age, as illnesses continues to rise, and as people become sicker....I am sure the number of caregivers will also rise!  So, what can we do for this group of unsung heroes?  I imagine you probably know of a caregiver of some type right now, already.  It could be a temporary situation or a more permanent one.  Either way, I want to encourage you the next time you feel led to bless someone, seek out a caregiver, as well.  I can bet they would be relieved and blessed!  I recently read that more than 60% of spousal caregivers due so with zero outside help or support.

Here are some practical ways and ideas to care for a caregiver!  (with my own little take on it, of course)  Some little acts of kindness take 5 minutes to make a difference in someone's life.

-Find out if they are involved in a support group, and if not, help them locate one if they are interested.
-Bring a meal for the family (this has always been the biggest blessing to my caregiver who cannot cook)  If you can't cook, send them a take out meal or a gift card.  It's one less thing they have to worry about.
-Send them for a day out-offer to watch the kids or the sick family member.  Don't have a full day, just let them take a walk by themselves and clear their mind, or go to the movies, or even to a store alone.
-Let them have a day 'in', I don't think my husband has been alone at home for over 2 years.
-Invite them out for a meal.  This is also a great time to talk.  They probably haven't done much of that without the stress of caregiving or cleaning up.
-Be a listening ear.  Most people won't call (especially men) and say that they need to vent, talk, or cry.  Be the listening ear for a few hours.
-Take a task off their hands for a day or a week.  Find out what is their least favorite 'new' responsibility and try to give them a break from it. No, I'm not talking about bathing anyway!  :)  For my husband, it was the grocery shopping that became his least favorite 'new' job.  Any gesture can go a long way!
-Send the caregiver a note or a card letting them know they are also not forgotten.
-If the caregiver has a sick spouse, try to offer to be their other 'person' at a function or church.  See them sitting alone, have them join you.  Having a homebound spouse can be very isolating for them, as well.
-Send them a stress reliever gift basket or gift.
-Give the caregiver a call and let them know you are thinking of them today.
-If you are out running errands anyway, find out what errand you could run for the caregiver to give them one less thing they have to worry about.
-Can be as simple as baking their favorite goody, or taking them a note, or even just a hug on a difficult day!
-Find out a way you can be a blessing.  Ask what would help them out.  Or, just do it, you probably have a good idea.  Something as easy as cutting the grass could give the caregiver a much needed nap!
-Be a friend.  Caregiving is a full time job.  Just as I had to give up most of my friendships because I'm a 'shut-in', my husband had to do the same.
-Don't assume just because they don't ask, they don't need help.  Chances are they need lots of help!
-Be encouraging.
-Send them a book or a magazine to read and unwind.
-Caregivers never put their needs first.  Find out what they may need, personally.  I've read that many caregivers just want a good night sleep.  That isn't the case in our house, but is especially for those caring for an elderly parent.
-Give practical help!  Some of the best things have been the simplest.  Meals, cleaning, driving, picking up dry cleaning, shopping, etc.
-Been in their shoes?  Share some life experiences that helped you get through the most challenging times.
-LISTEN...oh, I think I said that one before....be a friend and just listen!  Their world is turned upside down, and they are pouring everything they have into others all the time.
-I'm sure there are tons more that can minister to our caregivers, be creative, be proactive, be involved, and make a difference in someone's life today!

If you have more, please COMMENT and add to this post.  I'd love to hear your ideas and thoughts on this subject.

I tried to give a small snap-shot into our unique situation on a typical week.  However, there are caregivers with many different dynamics, with over 65 million caregivers in our country right now, and that number rising each year.  The majority of caregivers do it alone with no outside help.  While this is a topic very dear to my own heart, personally, I tried to bring a small awareness to this amazing group of people who could quite possibly use some encouragement today!

Another shot at JOY!

Things have been very busy around here.  This is the time of year were school comes to an end, final exams, lots of plays and concerts, and all the end of school year activities.  If you have school children, I'm sure your month sounds a lot like ours does.  My calendar is completely filled.  We are pretty good about not over committing our kids...one activity each!  However, May seems to bombard us every year with an over load.  I'm not sure who is more ready for summer break after this month?

However, this is also one of my toughest mental times of the year besides Christmas time, of course!  It's always a constant reminder of all I cannot do, all I cannot participate in, all I cannot help with, and all my many limitations.  When the children need me, I can only help from my sofa or bed.  The gorgeous spring air and smells and sights just make me long to be outside in the middle of it all.  Leaving my house is literally like putting on a mini-parade!  Because I require a special chair for my legs, getting out is such an ordeal.  I get very, very frustrated trying to attend any event for the children.  Not only do I feel immense pressure to show up when I may be feeling ill, but almost every place we've attended, we find it's not wheel chair friendly (and even more so with my monstrosity of a wheel chair).  I long to drive, to be independent, and to give my children the rides they need.  I sat on the floor this week to work on something...in 2 minutes flat I was so sick, I had to be helped to my bed to recuperate for a good hour or 2.  I just wanted to HELP!  Yes, spring time is a difficult mental time for me!

Being anxious or frustrated isn't going to change my circumstances.  I cannot spend precious hours pouting over my limitations.  The thoughts do try to creep in....especially when I see the stress on the family or my precious husband who bears the brunt of it all.  Here comes in that daily renewing of my mind routine, again! I'm surrounded this month by all the 'cant's.  Throwing something across the room helped my immediate anger, but didn't solve my internal turmoil.  I'm pretty sure throwing something, pouting, worrying, or being anxious never solved anyone's problems........  I wish I could say I had some profound revelation to put my mind at ease, but that didn't happen.  What I did CHOOSE to do...ok, what I am CHOOSING to do today is not let this consume my thought life!  I will not pout about it, spend time getting angrier, or even play the ever infamous 'what if' game!  I'm going to remind myself and my family that these are our cards we are dealt with.....we can make the best of it....or we can fold!  But, no one is folding today.  Life isn't fair!  I have to remind my children that all the time.  Mom can't do XYZ.....you have to put in more effort in area XYZ....we have to pull together and work with what we have.  Life is not fair....but come one, we were never promised fair, anyway!

So, for spring, I've had my mini pity party!  But I didn't change one single thing...except maybe my attitude.  I've decided AGAIN that I'm choosing to work with what I have; I'm choosing mental health; and I'm choosing JOY!

Good days and not so good days!

Since February, I've been able to bounce back to my 'normal'.  After the worst 8-12 weeks of my life, I can now say things are smoother sailing.  Of course, there is no rhyme or reason as to why I have perked back up a bit or why I became so sick last Dec., and if history is my guide, it's only a matter of time before the bottom falls out again.  So, I am being careful not to get tooooo comfortable.  (Easier said than done)

So, what does my NORMAL look like?  When I say that I'm having a good day vs a bad day, what exactly does all that entail?  Here is a little peek into my 'not so normal-norm'.



GOOD DAY vs BAG DAY SNAP SHOT:

-GOOD:  Wake up and take my morning handful of pills as soon as my feet hit the floor.
-BAD:  Same scenario, just might have to add a few extra to the pile.

-GOOD:  I can have anywhere from 3-5 minutes to make a child's breakfast, get me some coffee that my husband always has so lovingly prepared, and find my chair before I begin to feel ill.
-BAD:  That means the kids are having cereal today, and I will be waiting to eat when it's safe to move about.

-GOOD:  I usually 'reset' in my chair for a bit, then I might try to put the breakfast dishes in the dishwasher if it's a particularly GREAT day.  (That would mean no dizziness or extreme tachycardia)  I try to find something I can eat in less than 3 minutes.  Yeah, that often doesn't end up with a particularly great breakfast.
-BAD:  I still try to sit up and let my medicine kick in.  This might mean taking a few extra pills to get through the 'battle'.  It could be anything from a higher heart rate, dizziness, nausea, or the worst of all:  the feeling I'm being held over the side of bed.  Talking is usually at bare minimum.  How I wake up usually lets me know how the course of the day will go.  But as I've learned, things can look great and turn sour at any second with zero warning.

-GOOD:  I usually need a good 30-45 minutes in my chair to allow the medicine to take effect.  That means no shower for at least an hour after I wake up, sometimes it can take several hours to know I can do that safely.  This is a good time to check emails, peak on FB, and plan the day.
-BAD:  Showers can evoke all kinds of symptoms.  And just because I can use my shower chair, doesn't mean I can do the after shower routine safely.  There have been days I needed 1-2 hours to recuperate after a shower just to stand up again or not feel so sick.

-GOOD:  I try to throw in a load of laundry if one of the kids have brought me their laundry.  I've become a laundry whizz!  This is my LAST remaining 'mom job' that I've been able to hang on to during good weeks.  I have grown to love this task, as it's still my simple way of saying:  "I love you".
-BAD:  No laundry today, or if I try to do it, I can often 'pay' for it by getting sick for an hours on end.  What is usually a good 3 minutes, can sometimes be actually only 30-45 seconds before the room goes dark.  This is not a good thing to happen in a laundry room (from experience!).

-On a school day, my daughter and I move the books to the sofa and family room to begin our homeschool day.  We usually begin around 8:15.  JUST 4 MONTHS AGO, I HAD BEEN CONFINED TO MY BED 23 HOURS A DAY for over a YEAR........SO THIS WOULD NOT HAVE EVEN BEEN A VIABLE OPTION......LOOK HOW JUST A MINOR ADJUSTMENT HAS GIVEN ME ONE OF THE BEST GIFTS I'VE EVER RECEIVED.  It's the gift of laying up 'non-material' treasures and investing in life long benefits!!!!!

-I'm able to keep my legs up and teach her on the sofa.  She has a little desk that she pulls up right beside me.  We've gotten VERY creative.  We have been using a mini white board, lots of props, flashcards, and games.  I usually teach her till about 11-12:00.

-GOOD:  We race for lunch time.  My gal likes to make her own lunch, which is such a blessing, cause I wouldn't have enough stand time to do her lunch and mine.  You'd be amazed at the lunches I've come up with that only take 3 minutes to prepare.  It's not good for me to sit and stand, sit and stand, so I try to go as fast as I can to do it all at once, safely!  I am a picky eater (with lots of food intolerances) so I have struggled in this area, but am doing better now.
-BAD:  Well, this has become an issue for sure.  I've learned to have food on hand that can be grabbed quickly.  As someone who is mostly immobile, this can cause weight to become an issue.  I have to eat in a reclined position, so as long as I'm not nauseous, I can usually eat just fine.

GOOD:  By 1:00, I feel like I've run a marathon.  I haven't, of course, but my body revolts.  Talking is very difficult for me and is the #1 thing to wear me out while reclining or seated.  Taking silence breaks in the afternoon are imperative.  My daughter usually works on crafts, h.w., plays, or goes outside during my rest time, as we have a NO tv during school week policy. (Yes, the housekeeper is here by this time and helping to watch the princess)
BAD:  I'm usually down for the count if this is a bad day.  I usually just lie there with the noise of the tv or the computer.  If my eyes ache, which they often do, I will stare out the window till it passes.  I hate not being able to be up at all when the boys arrive home from school.  They are used to coming right home and heading into my bedroom.  It's often a special time for us, but if I'm not feeling well, they share about their day while I listen.

GOOD:  If I feel strong enough, I try to do the finishing touches to the dinner.  I cannot cook anymore, but I can serve the plates, put a few things on the table, and maybe even make some guacamole (all in complete silence, of course.  I cannot talk and stand at the same time anymore).   I try to have the 'seasoning' of the meal saved for me, since we like very strong flavored foods (authentic Mexican is on the menu 3 out of 6 nights a week).  The days that I am able to do this, it lifts my spirit like nothing I could possibly explain.  This could quite possibly be the highlight of my day!  It also means, I get to eat with the family.  (I have to sit in a big chair with a foot rest that doesn't fit up to the table.  It means all meals are eaten over my lap like at a picnic 24/7.  While I've refined this into an art form, some meals can be quite tricky).  Can u imagine how things would go at a restaurant?  Not pretty!
BAD:  This means dinner in the bed alone for me.  This was the norm for me for about a year.  I rarely felt well enough to hold up my head at the dinner table.  Now, I would say it's more like just 1-2 times per week.  It gets a little lonely, but if I'm sick enough, I really don't want company or to even talk.  My family is used to it, but I do long and miss those evening chats around the dinner table.  We always eat dinner as a family, so sometimes I listen from my main floor bedroom to the 'dinner chat' which lifts my spirits.

GOOD:  Eating is often a trigger for me to feel worse.  Normally, your 'gut' requires more blood flow to digest food.  If you have poor blood flow anyway, digestion can take away the blood you need to sit up, talk, or to think clearly.  After meals for me means...go lie down!  Sometimes I just dream of how wonderful it would be to just hop up, grab my keys, and go shopping all by myself!  I miss so many things, but my independence is probably the hardest!
BAD:  Food can be a nasty trigger for almost any of my symptoms.  However, if I'm already ill, I'm probably lying down anyway.  Sometimes food can also comfort someone who feels awful.  This has got to be something we watch for...not letting food comfort us when we ache.  Sometimes chocolate is like the best medicine!  :)

GOOD:  Evenings:  My evenings are always spent in the bed after dinner.  Rare is the occasion I feel well enough to be on the sofa after a long day.  My husband and I use this time to catch up on each other's day.  Sometimes this is a great family time.  Since we don't do evening tv, you would be AMAZED at the quality time you can have with your family gathered around the bed.  We've had some of the best laughs, deep conversations, and teaching moments.  During school nights, the kids often are busy with h.w. and extracurricular activities, so we don't at much time together as we would like.  Every blue moon, I've been known to want a Target run.  We've done this about half a dozen times this year.  It's rare, but I love it!
BAD:  Evenings:  After dinner time until bedtime, I'm already resting.  However, if it's a particularly difficult day or night, I am lying there hoping and praying this won't end in another hospital trip.  Depending on the symptoms, my husband usually stays close by helping to nurse me and attend to my needs.  This can make for a long evening for us both.  For over a year, this was every night!  Now, we are blessed to say it's not as often per week.  My husband has to come home from work and be the 'all hands on deck' all alone.  He's nursing me, taking care of 3 busy kids, and doing his evening work.  It can get tricky!

GOOD:  Sleep:  A good night sleep for me is rare beyond rare!  Ever since I became a mom, I haven't sleep great (like most moms out there)!!!!!  However, due to my blood flow, I can never lie flat and my heart rate and blood pressure often respond to positions.  It can be a long painful night.  I do not take sleep aids, so I have resolved to get to bed early to get enough sleep.  I'm satisfied if I only woke up a 6-12 times that night.
BAD:  I've had some difficult nights.  My heart pills tend to wear off while I'm sleeping.  This is never a fun event.  Some nights are worse than others.  My blood flow also makes me dizzy and lightheaded while sleeping, and that will make getting up at all more difficult and dangerous.  I have quite a few things that seem to get worse at night and learning to deal with them has been tricky.

So, there is just a little snapshot into what a 'normal' day can look like in my world!

WHEN ALL HELL BREAKS LOOSE.............

It's only with a very guarded and heavy heart that I publicly share the following information.  After a long year of denial, concealing, and waiting, we feel it's time to share one of the most difficult things I may ever type up on my laptop.

A little over a year and half ago my husband and I noticed our oldest son having some similar dysautonomia symptoms.  At the first sign, we took him to a doctor who basically told us to keep an eye on it, but it's probably nothing.  A year ago, we knew it WAS something.........  Our oldest has always been our 'healthiest' child by far.  Besides some dizziness he's had from early on, I can count on one hand the number of times he's even ever been sick.  So, it was alarming and unusual to see any changes in him at all.

For his privacy (which he gave me permission to share his illness), I will not divulge all of his symptoms, changes, and pain.  I will leave it very basic.  We have known for about a year now that he was beginning to get sick.  We have been monitoring him quite closely, yet completely in denial that this could be happening after all we've been through as a family.  What are the chances?  We were told this is not hereditary!  But month after month, we saw that our son was in the beginning of true dysautonomia.

With a very heavy heart, our son was diagnosed by my cardiologist in Toledo as having POTS-Postural Orthostatic Tachycardia Syndrome in March.  This is the original diagnosis I received years ago before mine developed into a more serious form dysautonomia.  My son's form also appears to be a direct result of severe venus pooling.  (The type that is almost impossible to treat)

Bottom line:  We don't know how or why he got this.  We don't know the link between his illness and mine.  We do NOT know if his will spiral or stay stagnant or if there will be any long term repercussions.  The doctor is concerned yet baffled.  Doctors are beginning to second guess the whole etiology of my illness, as well.  We are told this is 1 in a million cases....doesn't get much stranger than this!

Our case was sent to Mayo Clinic in MN and in less than 2 hours we were told they want to see us both as soon as possible. (I was diagnosed at Mayo in early 2012)   My son and I will be going to Mayo Clinic for 7-10 days the second school lets out to undergo new rounds of grueling testing, meet with multiple teams of doctors in multiple specialties, and begin the journey to find the missing link between our illness'.

The news to our family has been more than devastating.  David and I have had a PIT in our stomachs for months now.  We chose to cautiously keep this quiet until we had all the information and to respect the privacy of our teenage son.  We have been hit with yet another wrecking ball.  As I've said before......never, ever assume:  "It can't get any worse."  Because the second you think it won't get worse, ALL HELL CAN BREAK LOOSE!

However, if we look for that silver lining....which is always there.......this does give us some more hope that no stone will be left unturned now that the doctors will begin to second guess my prognosis, diagnosis, and etiology.   Since my son is still in the beginning stages, they may be able to tie the links between the beginning and the more advanced.  We are cautiously hopeful that new information will come to light.  We are also happy to have a diagnosis quickly for our son so that we know how to keep him mobile for much longer than I was.

We ask for your thoughts and prayers for our family's strength, joy, and endurance.  You'd be very surprised to see how calm and collected our son has been.  He's taking it in stride even with some new limitations he's had to endure.  I'm very proud of who he is as a young man, and especially proud at how well he's taken the news.  He's an unusually private person, but he did allow me to share his personal information and ask for prayer during the next few months.  He only ask that no one talk with him about it, or ask him any questions.  We are all respecting his rights and privacy.

I've promised not to make this a religious blog or offend any readers, but I cannot help but to share this one thing as I know I would be completely lost at this point:  It is ONLY the joy of my Lord that has given me the strength to endure.  While my body is weak, my heart has not grown weary because the strength doesn't and hasn't ever come from myself but from Him who my strength and help comes from daily!