Life is Short. Life is Precious. Life is Unpredictable (Love--Laugh--Live)

Yesterday, I shared the news that our son is facing serious medical issues, and we as a family are being tried and having to endure yet another painstaking trial.  Some days, it can feel that the trials never end.  We have been through medical issues in the past that were very serious with our other son and I have spent many sleepless nights praying and holding my child while he struggled to breathe, watching him suffer.

Thankfully, we witnessed a true miracle and our middle son is completely healed, only by the grace and power of God.  His brain function is completely normal and actually tests well above average.  Two years ago, he scored 99 percentile in four categories on his standardized tests, and that's pretty good for a kid that the doctors said might never really talk or be able to walk normally, or just be a normal kid.  I will say, he's not "normal", but I think he's much better than "normal."

After enduring that trial and seeing him healed, we learned as a family that time is valuable and nothing is guaranteed in this life  We are not guaranteed of another day on the planet--not you, not me, not anyone.

Life is short.  Life is very precious...and life is unpredictable.

We never know what's coming next.  In the hospital, I am counseling patients who have no hope for living.  They want to die, or they wouldn't be there.  The ones that don't want to die want to end life for someone else, usually because people have hurt them in their own lives and they're just so darn mad!   I sit and look into the eyes of teenagers as they tell me they have attempted suicide multiple times because there's just nothing to live for anymore.

Life is precious.  I'll say it again.

Yesterday was a tough day, I'm not going to lie.  I was running around all day in a foggy haze, spent time crying at a friend's house, telling her my feelings (but she was amazing in helping me sort through them), and going to yet another doctor's appointment--only to hear more negative news about my son.

When I came home last night, I woke up from the daze.  My little son was playing a video game and laughing and jumping up and down.  He ran up to me and said, "Mama, TICKLE ME!"  His favorite thing in the world is to be tickled.  He wants to be tickled every single minute of the day and when you finally give into his pleading, he lets out the most wonderful giggle and says, "DO IT AGAIN, AGAIN, AGAIN--TICKLE ME MORE MOMMY!"

I love this kid.  My heart walks on the outside of my body every day, trying not to get crushed by the sorrows and troubles in this life.  I love all my children this way.  I feel their vulnerability and my heart is walking around this earth with THEM all day long.  When they hurt, I hurt.  When they cry, I cry.  When they laugh, I laugh.

Last night, after a good tickle session with my boy, homework with my other son (along with a very good long snuggly hug), and just doing volleyball practice with my daughter--I had an epiphany.

Life is short.  Life is precious.  Life is unpredictable.

So what can I do?  I can make the MOST of EVERY. SINGLE. MOMENT.

I can snuggle longer with my children, laugh more, play more, get more involved in their worlds and just appreciate every moment that we DO have to together, instead of focusing on the ones that we might NOT have together.

I can't control the outcome of life, but I can control what I choose to do with the life that I was given. My life is precious.  My children's lives are precious.  We are not going to waste a single moment worrying about the things that we cannot control.  We are going to love more, laugh more, and praise God more for His goodness and the gift of life that He has so graciously given to us.

I'm not guaranteeing I won't cry more tears--that would be a lie, but my focus has changed.  I am about living, not worrying about whether or not we are going to die.

I encourage you today to do the same.

God bless you all in Jesus' name.

Matthew 6:34

"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."

My Glass Has Shattered...

This is one of those moments where there's not a lot to say, and yet there is so much to say.  Yet, the words don't seem to want to come out of me.  I haven't written on my blog for awhile, but that doesn't mean there hasn't been anything to write about.  I just don't know how to put my thoughts and feelings into words.  It's strange for me, a master of rhetoric.

I started writing this blog because one day, a glass broke in my kitchen and God spoke to me, saying "Your life is going to be like this broken glass.  Can you put it back together again?"  My response was, "No, God."  Then God said, "You can't, but I can."

Well, the glass has hit the floor.  It has definitely shattered.

The week before school started, I was running around (like crazy) getting the kids shots updated, sports physicals, paperwork, registrations...etc.  Our youngest son has been fighting a bad case of cradle cap (usually found on babies) since he was born.  We found out that it's seborrheic dermatitis and we have tried numerous treatments and they have all have failed to eradicate the problem.  When starting kindergarten this year in a public school, we were told that the doctor would have to give instructions and information about this problem to the school nurse.  We had a follow-up appointment already scheduled and we went to talk about his "cradle cap"...again.

During the time we had been on vacation this summer, my son's doctor left the area and we were set up to see a new doctor.  I hate seeing new doctors with a child who has multiple problems because I always feel like we have to start all over and talk about everything ALL OVER AGAIN.  However, when we met this doctor, amazingly, he had already reviewed my son's entire chart and he began asking some very different questions than we ever heard before. My son has been diagnosed with seborrheic dermatitis, eczema, asthma, anemia, muscular weakness in his eye, sun-sensitivity and has already had two surgeries by the age of 5.  There is not a day in his life when he is not struggling with some physical ailment.

I realize some children just need more medical attention and he just didn't "luck out" when it came to bodies working the way they should.

This appointment was different.  The questions the doctor started asking seemed random and I didn't understand the purpose of the questioning.  At first, the answers were "no" to many of the questions and then finally, he asked a question to which I gave a resounding "YES!"

He asked, "Is your son thirsty...a lot?"

Now, truth be told, my son can drink more fluids than most adults.  He is like a camel.  We're not sure where all the fluids go, except he does pee A LOT.  We've had him tested for Diabetes and the tests were all negative.

This one answer of "yes" seemed to spark a whole new line of questioning.  To which I answered "yes" to all the questions the doctor asked.  I knew we were heading somewhere, but I was afraid to know WHERE.

The doctor turns to me and spits out a long name LANGERHANS CELL HISTIOCYTOSIS.

The doctor asks, "Have you ever heard this name before?"

I stared back at him and said, "No...I would remember.  I have definitely not heard that name before."

The doctor says, "Well...it seems that your son will need to see a new specialist."

Me..."What kind of specialist?"

(Silence...)

Doctor: "Well, I'm not going to say right now.  I need to make a few calls."

At that moment, a word popped into my mind--ONCOLOGIST.

NO!!!!!!!!!!!!  (I screamed silently inside myself)

No. No. No. No.

The doctor hands me a small piece of paper with that name written on it.

He says, "Just keep this so you'll become acquainted with this name."

He then tells me (while I am dazed) that my son will need blood tests and a urine test...TODAY.

I gather my things and my other two kids (who were present through all of this) and walk out of the room toward the Lab.  I feel like I'm in a shocked daze, like a dream that I want to wake up from, but maybe a bad dream...WHAT did the doctor just say to me?

We got the blood test done while I held down a screaming 5 year old.  We got the urine test done--not the easiest task with a 5 year old.  Then, we wait...

We had results within 24 hours.  His monocytes are elevated and his platelet count is high, along with another number being somewhat high (but I don't know what it means).  I'm fighting back continual moments of wanting to just burst into tears spontaneously.  Oh wait, I'm starting my counseling internship at an inpatient psychiatric hospital in just a few days....STRESS--FUL.  My sister in law is a nurse practitioner and was wonderful with looking at the numbers I showed her and telling me it could be various different things.  We are trying our best to just take things as they come, not think too much about the future, and not worry about things until we have something TO worry about.  So far, we know things are going wrong in his body, we're just not sure WHAT or HOW MUCH.

We are told that a referral has been made to a hematologist-oncologist because Langerhans is an autoimmune disorder, but it still could be cancer.  That dreaded "C-word," I would never want to say in the same sentence with someone's name, much less my child.

I know other parents have gone through.  I try to comfort myself by praying and reading the Bible and just crying as I talk to God about it all.  I believe in God 100% and trust that all His promises are "yes and amen" in Jesus Christ. Without Him, I would be lost right now.

We are still waiting for answers.  The specialist's office is due to call us any day to make an appointment, but they said they need more information from the primary doctor.  We are calling and checking, and praying the info. will get there right away.  It's so hard to wait when your child's life and health is hanging in the balance.

Yesterday, while I was at work, I received a disturbing call.  My husband said my son was taken out of the classroom to the nurse's office because he was having trouble concentrating, following very simple one sentence directions and he attempted to wash his hands in the bathroom with soap and no water and would not respond to calls from the teacher to use water.  He was in a daze and not very responsive.  The thing about Langerhans (if that's what this is) is that it can affect all systems of the body, or just one system, primarily the skin.  He also has anemia and asthma and problems with his eyes.  Now, he is showing signs of neurologic problems (possibly).

So...today, back to the doctor's office we go.  This time, we are going to be talking about "new symptoms."

When our middle son was a baby, he was diagnosed with epilepsy and a host of other problems.  He was never diagnosed with Langerhans, but he went through a lot as a small child.  God healed his brain in a bonafide 100% miracle that the doctors could not even understand.  We've seen God is a miracle worker with our middle son.  Now, we need another miracle for our youngest son.

Prayers are very much appreciated.  Pray for our son, but please also pray for his mom, dad, brother and sister.  This is a very tough time for us all.

I am continuing to work at my internship doing counseling for acute adults and adolescents.  Every day, I have the privilege of counseling people who either want to kill themselves, kill others, or have psychosis.  I want to continue to work at this time, and so far, I've been able to separate my work from my home life.  It's just a very tough time.

Thank you in advance for your thoughts and prayers.  I will be writing more to keep everyone updated.

With greatest love in Jesus Christ...