AVA 2014

As many of you know, I am on the Board of  the AVAFoundation. Our yearly convention was held in Washington DC.  I was also asked to speak for the Pediatric special interest group. And I got hours to talk to vendors about what patients need (from my perspective).  So really cool stuff. 



Most people don't get to live with their super hero.  I do.  This is Manny at the airport in Tampa watching our plane arrive for DC. 

My speech was entitled, "The Other Side of the Line 2014".  Last year I shared this same basic speech at a general session so this year was the update.  It's amazing how many things have transpired in just a year on a central line.  From a new line, numerous breaks, several IV mishaps, etc.

Meanwhile, Manny was with me.  I drug him around to all of this.  Organizations can sometimes lose focus on the patient so I had a visual reminder (a cute one) of what they are doing all this work for.  They thanked me often for offering this perspective.  I am hoping I’m going to be able to make a real difference in this world. 



One of the coolest experiences!!  This is Dr. Broviac. Not his title, that's his name.  The device that Manny lives on 24/7 for almost 3 years is a Broviac.  I got the chance to say, "This is a life you have changed.  YOUR life has made a difference in the lives of countless people.  Manny is one."  I treasure this experience.  I'd rather have met him than a rock star or movie star.  Afterall, THEY never helped save my kid's life!

Ironically, my sister was admitted in the hospital this exact same week.  Always been healthy.  But this week, she was inpatient and needing constant vascular access.  And in my opinion, they failed her miserably.  Poor decisions were made on her behalf regarding her veins/access.  And I was powerless to help. 



How we felt after the conference.  It was great but also like drinking from a fire hose! So much to do, so few helpers.  The job is OVERWHELMING.  The need is great.

My goal is … the right device for the right person inserted by the right person for the duration of the line.  It seems a no-brainer.  Afterall MILLIONS of IVs are placed yearly.  So it can’t be that big of a deal … but it is. 

We DID get to have a bit of fun as well.  And I could NOT have done this trip without the help of Kaley and Sam.  They are amazing people.  Any parents would be blessed to have children half as kind and helpful and responsible as these two. 

Life threatening complications, scared and damaged veins, infections, not to mention the pain and trauma… this doesn’t have to be this way.  50,000 plus people die yearly from this but we’re doing basically nothing. The public has no clue.  And unlike a disease like cancer or autism, we don’t know the exact causes, prevention and cures … we DO know all of this for these complications!!  So it’s just unthinkable that we’re so far behind in promoting safe vein care. 

I’m going to work on a campaign that: People are not pin cushions, veins are not disposable. 

And if you’re like my family, until it hits YOUR family, you’re not likely to even care or notice. This is someone else’s problem/issue.  But given the statistics … this WILL eventually hit you or a loved one.  So I’m working now to close the gaps in knowledge of the public. 

HELP me.



Me getting his TPN ready in the plane.  I talked to vendors just this week about how products seem to be made for people who are laying still in an ICU bed, not for real life.  We are like most ... out trying to live life to the fullest!  (The things I was doing in the plane are things that if done in the hospital would have been done by an RN and a Pharmacist.)

So thanks, AVA (Association of Vascular Access) and the AVA Foundation. Manny is safer because of the care, dedication, research, training, support and advocacy that you do.  Together we can make a huge difference in the lives of patients around the globe. 



Manny LOVES to fly.  He was SOOO excited to be on an airplane.  When he could see out the window to see houses and roads and trees, he said, "Mama, do you see the lovely world?"  Yes, Baby, I do. And it's a much more lovely world because you're in it sweet Manny!

Summer fun and not so fun parts

We have been out living life!  Summer has been in full swing and we have been soaking it up. 

Sleeping in, fresh peaches, swimming, parks, no school ... ahh, this is the life.  

We have been pretty low-key.  Just like I like it.  

But we did do a week family reunion with Dan’s family over in Orlando.  There are 10 adults and 12 kids (ages 1-16). And miraculously we all get along famously! (Two of the adults couldn’t make it this year so we were even MORE outnumbered than normal.) 

Unfortunately, the trip had to be cut a tiny bit short as Manny got quite ill.  He went to bed fine one night and then woke up in the middle of the night unable to breathe.  We think it was another mucus plug (that’s what made us call 911 back in May).  But this time, we better knew how to handle it.  It was quite scary for a while and there was no sleep as Dan and I watched over him.  

And just for fun, in the middle of this crisis, his TPN pump had a Human error malfunction.  (sigh).  It got quite severe before we noticed it as he was sleeping.  Then we noticed something wrong but thought it was the respiratory stuff.  I kept saying, “We’re missing something!”  And sure enough, eventually Dan said something to me that triggered me to check his pump.  It was off.  (It’s in a backpack and attached to him so no reason to even THINK to check it.)  

He was so non-responsive at this point.  Scary.  I gave him a glucagon shot in his butt.  he didn’t even flinch.  For my long time readers, you’ll remember Denver.  This was WORSE than that! On TOP of the respiratory issues.  And back then, all I needed was the shot but no one would give it to us.  Now we have it.  It’s with me all the time.  In fact, I’ve had this shot for over a year and never needed it.  But this night, I did.  It likely saved his life. Yes, I got the prescription refilled.  

The next day, he was still having some troubles with the respiratory stuff.  He was awake off and on but only for a few minutes at a time.  He was needing to be on his bipap constantly.  So we packed up to head home.  That’s where I have more machines and medicines to handle such things.  (We only took the basics on vacation.)  But because we are experts now at handling his illnesses, we were able to stay home and not be admitted this time.  It took a good 2 weeks to fully recover but he did.  

Meanwhile ... because I didn’t have enough medical things to do... Jacob started having issues.  So the back story there:  Jacob was fine. Age 12 had a routine urinalysis.  Showed huge amounts of protein in his urine and elevated creatinine in his blood along with a few other issues.  His blood pressure was normal to low.  Biopsy revealed it was a kidney disease known as FSGS.  (Focal Segmental Glomerulosclerosis). The nephrologist told me this is the diagnosis she most dreads giving to families.  And the worst case scenario for prognosis is African American, male, teen.  Jacob is all 3.  Prognosis is usually less than 5 years from diagnosis.  

So imagine her surprise that 4 years later, he is not progressing in his disease!  We have been on medications, nutritional support, dietary restrictions and lots of prayer.  She says there has only been one other person in her practice of nearly 3 decades that has been anywhere close to Jacob’s level of continued health (and they eventually died)!  I tell her we pray hard.  

One morning this summer, Jacob woke with his one side of his face under his eyes VERY swollen.  This is a bad sign.  Then we took his blood pressure and it was through the roof.  For his age, height, weight, etc ... his blood pressure should be near 110/65 and his has been.  Anything over 120/80 is a problem.  Anything over 133/92 is an emergency.  And his was over 160!  An immediate call went out to the nephrologist.  Blood tests taken.  

His results are showing that his kidneys are in a slight decline but nothing that would explain his very high blood pressure.  We are doing even more restrictive diet, more nutritional support, etc.  And we will recheck labs this week.  But I can tell you, his blood pressure is still very high so we are in need of prayers for healing for Jacob’s kidneys.  

Between all this ... I need it to be low key!  

But alas, that’s not the life I chose.  Ha.  More about the rest another time.  

The kids are growing up as I type this blog.  And I don’t want to miss a minute of it.  (Ok, maybe the whiney parts I can do without.)

Summer Craziness... the half way report

At one point in time, I was a consistent blogger. I  found it therapeutic to write out my thoughts and share them this way.  Now I find my life SOOO busy that I rarely have time to stop and reflect.  And I miss it.




I know no one is sitting around with baited breath waiting for Beth to publish her thoughts but I do know some like to get the updates on our family.  So with that in mind ... the past few months in a nutshell.





Manny turned 5 on June 26.  Considering the doctors thought he wouldn't make his first birthday, that's pretty amazing.  Click this link to see more of those pictures.  Here are a few highlights below.








Zoe turned 9 on May 25.  She is a complex kid.  I watch her some days and wonder what she'll be when she grows up. 



Luke turned 11 on May 9.  He was adopted at the age of 2 days old!  He's private and I've probably already shared too much for HIS comfort level.





Sam will be 13 on August 31.  Kind, responsible, capable.  What a great young man.  And shooting up tall quickly!!





Kaley (14) has started a cake decorating business.  She's talented so we wanted to support her in this endeavor. 

Just one of Kaley's Cakes (Her first Paid gig... for MDA)





Jacob will be 16 on July 7.  He's almost as tall as I am and weighs about 20-25 pounds more than I do.  I appreciate his muscles, especially as Manny grows!




In May we did a photoshoot for a new book I'm writing about the relationship of the MDA and the Firefighters.  I've just received the final pictures for that so now it's time to do the typesetting and get it edited.  To print soonish ... hopefully.  Stay tuned.




We also did a photoshoot for the MDA's new fundraising event.  This is the invitation to it. 





In May, Dan and I did a training for his company's annual corporate training.





June 8 the kids finished the school year.  This fall, Manny will be in Kindergarten, Zoe 4th, Luke 6th, Sam 7th, Kaley 9th and Jacob 10th.  And yes, we homeschool all of them.  And yes, it makes my brain hurt!






June 20th we got our new handicap accessible van!  Manny named him "Elvin" and it's awesome.  Couldn't be happier. 





We still have our 15 passenger van (great condition) that we have for sale if you know of someone who needs one. 




June 23 we went to Orlando to an Oley Foundation conference.  That night was an awards ceremony and I was nominated for an "Advocate" award.  Very honored.  I have no clue who nominated me.





June 24 I was a keynote speaker for the conference speaking on how to better advocate for ourselves or our kids.  That evening was another awards banquet, this one for our home health.  Manny earned a special "Celebration of Life" award.  He certainly embodies that!! 



June 25 we went to the MDA local summer camp sponsor day.




June 26, on Manny's 5th birthday, he was named Gulfvan's "Person of the Year".  He loved the presents and blowing out the candles! 







The only other major thing going on is dealing with making sure Manny is getting the right TPN formula.  Currently, there are some "issues" (understatement and I'll leave it at that). 


I've always said ... if you don't hear from me for a while, picture us out living life to the full!  I always think about the line from the Dead Poet's Society movie reciting the poem ... the Henry David Thoreau line about "I wanted to live deep and suck out all the marrow of life ..." 

That's us. 

Jobs a Mom Does

There are many, many jobs a mom does.  And with a child with complex medical needs, that job extends even beyond our education most days. 

We have to have a team approach.  I hold up my end of the deal and hope that everyone else is holding up theirs.  I double check on some things.  But honestly, there are some that are beyond my pay grade so I trust. 

Most days, this system works. 

Yesterday, I found a HUGE error.  I’ve spent the last two days trying to educate myself on chemistry and complex math conversions, researching the effects of chronic toxic levels of an element and what needs to be done to reverse the effects. I’ve talked to numerous doctors and clinicians and they are just as baffled as I am.  Seems this problem is ultra rare (just like Manny loves to do). 

I’ll not go into all the details at this point but it all starts back with the issue of drug shortages. 

There are national drug shortages of basic things like the trace elements (zinc, selenium, chromium, etc.)  Even ICU Patients in hospitals were unable to get these for a while.  I know this because Manny was in ICU needing IV selenium.  He had critically low levels and they could not get it for him.  Peds, ICU, hospitals are all at the TOP of the list to receive stuff first. 

So it was agreed that he would get an alternative “adult” version.  They did the calculations and came up with the amount he needed.  I’ve asked numerous times to check to see if they were in therapeutic levels. 

Fast forward to yesterday, we got his labs back.  He has critically low levels of Selenium STILL.  Nothing has changed.  And just now I’ve been doing the research about what dosage should he be getting and what is he getting. 

He should get 3 mcg/kg/day.  He’s 23 kg so that’s 69mcg total.  (And that’s for a person without a deficiency, just maintenance dosage.)

So imagine my frustration when I did the math and realized he’s getting only 40 mcg.  And has been. 

The more concerning issue is the critically high/toxic level of Chromium.  4 times the top reference range for an adult (there were no pediatric reference ranges available to our lab). 

I again researched what he should be getting.  For pediatric patients ages 4-6, he should be getting 1.4-.2mcg/kg/day.  He’s 23 kg so that’s 3.22-4.6 mcg/day. 

He’s getting 8 mcg/day.  So almost twice the top recommended dosage. 

This has been happening for over a YEAR! And he's having symptoms.

I’m heart sick. 

We have 10 bags of the TPN that still have the high chromium and low selenium.  It will be easy to fix because the meds that were on shortage are now back in stock.  It’s fortuitous that just Tuesday I was in a room discussing just this very issue (before I knew about the overdose) with the people who purchase the elements for his home health.  The part that ticks me off is that … these have BEEN available.  For MONTHS.  In fact, the one he was getting was the one in short supply and they were giving it to him trying to do the right thing for him. 

Not sure where the system broke down.  Not sure why this was never switched.  Not sure who did the original wrong math.  Not sure why no one caught this error in all this time. 

No one can tell me that if stopping the over dosing will automatically reverse the issue or if he will need treatment/intervention. 

Meanwhile, I’ve been asking all these questions about his labs … why are his proteins dropping? And especially his globulins? Platelets? Why does he have pancytopenia?  Urinary retention, Etc

I didn’t want to go to medical school.  I didn’t want to become a pharmacist.  I wanted to be a Mom.  Some days I just want to be a Mom.  You know, make dinner, schlep kids all over the place to soccer or ballet, tuck them in and say their prayers. 

Today is not one of those days. 

 

The Colorful Life

Remember the old black and white TVs? (Yes, I’m dating myself that I actually remember them.)

My mom recounts getting her first TV when she was 5.  Watching Howdy Dooty.  It was novel technology.  People were amazed. 

Then one day, along came a color TV.  And the difference was vast.  Now some people then, or even now, might prefer the vintage look of black and white, but for the most part, people prefer color. 

Now imagine having had a black and white TV, then a color one, then going back to a black and white.  You KNOW what you’re missing. 

I think a lot of things are that way in life.  You can’t “unsee” or “unknow” something.  And when you go backwards, what used to fit now feels tight or restrictive or somewhat missing and empty. 

For example, I had a job I loved.  I did it for 20 years and loved it for the first 18.  Then I started to grow in areas and the old job felt a bit tight and restrictive compared to what I’d started to see and experience.  Like the very last class I taught was about learning to be more assertive and not passive or aggressive.  Valuable business and life skills for sure.  But during the class on a break, I got a phone call from a lady whose child was very ill and in ICU.  She wanted some advice on how to make the best of the situation.  And what to watch for with vascular access.  Then I went back to teaching the class and it was … painful.  The old didn’t fit any more.  So eventually I had to move on. 

Last week, I went back to teach a similar type of subject and I just couldn’t get motivated to prepare or present it.  I was able to pull it off, but my heart was just not in it. 

Or maybe it’s in areas of spiritual revelation.  Or deeper relationship with God.  Receiving a healing or word of knowledge.  Tasting grace. 

Maybe it’s in being single and being concerned about being married.  But once you’re there, you can’t see yourself as single again. A part of you has grown.  Same with becoming a parent and with each subsequent child that follows.  You stretched.  You grew.  You’ve become more.  Your life will never be the same again. 

Maybe it’s going to an orphanage seeing the kids in their situations.  You might have heard about the plight of the orphan, but now you’ve SEEN it and you will never be able to unsee it.  You’re forever changed by the experience. 

It applies to almost every area of life.  Once we’ve seen and tasted and heard and experienced, we can no longer continue living like we haven’t.  It’s trying to put new wine in old wineskins.  It just doesn’t work. 

Life is set up to be a constant set of these experiences.  Adapting.  Changing.  Becoming more.  When we don’t develop like this, we shrivel and die. 

I personally think a lot of addictions are based on NOT wanting to see or taste or experience.  The feelings are overwhelming with the new changes and possible pain so some choose not to see or feel. 

Because that’s real too.  Pain.  Pain of rejection or not being good at the new. Being out of our comfort zone is scary and we want to retreat quickly to the familiar where we know what we’re doing and how to do it.  If we stay put, however, life passes us by.  And at the end of our lives, playing it safe will yield much regret. 

At this time of year, it makes me think about my friends who are watching their children graduate from high school or college.  Bittersweet feelings.  They have poured into their children’s lives for decades and now the child is doing exactly what they were raised to do.  Both parent and child have to experience the growing pains.  And as much as both might fantasize about life like it used to be, they both know that old life doesn’t fit any more.  So while they want it for comfort, they really know they don’t want the life of yesterday. 

This concept has been mulling over in my heart and spirit for a few days now.  Trying to figure out how to live in today … daily.  How to teach my children to be a new person, renewed daily.  Every day a chance to hunker down and be comfortable or to grow and learn and see and experience. 

Maybe it’s another way of saying “Faith”.  The definition is … the substance of things hoped for, the evidence of things not seen.  Just like the path we haven’t been on … where will it take us today?

People often say, “God, guide my steps” … from the couch!  How is He to guide your steps when you aren’t stepping?  (The book of Psalms is full of words about feet and steps.  Do a Bible Study on that sometime, it’s fascinating.)  That’s like saying, “I want my life to change and I want adventure/happiness but I don’t actually want to DO anything.” 

So what about you?  Are you growing?  Is your “yesterday” life too small for the “you” of today?  If not, it might be a sign that you’ve become complacent and too comfortable.  Try something new.  Explore.  See.  Experience.  Grow.   

And if you do, you’ll find yourself in places you never dreamed.  Living the life you always knew you could. 

Yes, there’s pain along this journey I suggest.  But it’s worth it.  Oh, the colorful life is so worth it. 

Bread Crumbs

Just over 2 years ago, a series of events happened that were miraculous.  I’ll retell that story in summary version. 

Manny had been on TPN only 3 months.  All seemed fine.  He went with us to the Florida State Fair and was feeding giraffes.  He went to bed fine that night.  In the middle of the night he woke up SCREAMING in pain.  He could only tell me his “tummy” hurt which could mean anything in the front chest.  He had a new broviac (only a week) so that was the most likely culprit of the pain.  Which is a serious emergency so it got me to the hospital quickly.

Once we got there, the pain seemed to subside and he then went “non-responsive”.  He was so out of it that they did a lumbar puncture on him and he didn’t flinch.  This caught the attention of the ICU staff.   

That day, the PA for the ICU just happened to be someone who knew Manny and could vouch for his normal state of being and that the way he was acting was NOT right.  This convinced the ICU doctor to come take a look at him.

The ICU doctor just happened to think of this wild and out there possibility. He had seen it once before. He asked if Manny was having unusual stools.  He was.  So this led the doctor to do an ultrasound. 

The ultrasound didn’t show what the doctor thought it would but instead showed a very diseased gallbladder. 

This saved his life as his gallbladder had already died and ruptured. 

There is NO way that a screaming child would make someone think “gallbladder”.   In fact, just 2 months earlier, his ultrasound of his gallbladder was fine. 

So the miracle is that the proverbial bread crumbs were left to be in the right place with the right staff asking the right question to order the right test to look in the right body part.  This series of events saved his life.  I was told that this kind of thing is usually found on autopsy. 

God loves Manny.  He is in His capable hands. 

That leads me to today.  I don’t see the breadcrumbs laid out yet.  But I’m trying to have faith that I will eventually. 

September I did a speech.  Some people who were there liked it and invited me to their convention in Canada.  So this date was set up MONTHS ago.  Tickets were bought weeks ago.  Travel arrangements set weeks ago.  Bags were packed.  Clothes set out for this morning.  Alarm set for 5:30am. 

But at 2am, Manny woke up breathing really weird.  It was severe respiratory distress.  Heart rate over 200. Breathing rate 60-80. Chest was retracting.  And he was desatting.  All while on bipap and 8 liters of oxygen. 

We prayed. We did everything medically we could do at home.  We realized, he was headed to the hospital.  And I didn’t have the equipment to drive him here safely.  So I had to do something I’ve never done … call 911.  They came.  It was no biggie.  I was already packed.  Manny was scared initially but then liked being in the ambulance.

 

We got to the hospital and he was a bit improved by being awake but still having troubles.  They did various medicines and treatments.  He perked up.  He was doing quite well in fact.  Until he would drift to sleep then all the symptoms would come back. 

Eventually, they decided he was stable enough to go to the regular floor and not be in ICU.  Great news.  With pneumonia, he could teeter either way.  Tonight he will either do great and show great improvement with all the meds/treatments he's on or he will struggle and we will head to the ICU. 

So my issue is … God knew what date and time I was supposed to leave for Toronto.  If it had been even 3 hours later, I would have been on my way to Canada and no way to turn around and come back.  So for some reason, it became VERY clear that I was supposed to be HERE. 

Was the plane going to crash? I would have been in a car wreck on the way to the airport? No way to know.  But I can either be upset OR trust that God had a plan. 

I’m just hoping I’m paying enough attention to notice all the bread crumbs He’s leaving.

Miraculous Mobility

Most of you know by now that we are fundraising for a wheelchair accessible van but might not know how that came to be. 

Summary highlights …

Manny got his powerchair.  It made me cry.  We take mobility for granted.  It was like watching first steps.  The moment is almost magical.

We had no way to get it home as our van doesn’t have a lift or ramp and we can’t deadlift 350 pounds up 3 feet. 

So the powerchair company graciously drove it to our house.  (Custom Mobility in Pinellas County if anyone is looking for a great wheelchair company!)

At that point he was able to drive around the house and explore for the first time.  He was able to play tag and football in the backyard for the first time in his life.  There were tears. 

I started looking into how much it would cost to convert our van (which still has many more miles in it) to one with a lift and then how much more to remove a row so he could stay IN his wheelchair rather than me try to lift him. 

It is shockingly expensive to do this.  I was complaining explaining to some girlfriends how I hated money.  They asked what I needed and I said that I needed a wheelchair accessible van I could actually afford.

Well, my good friend Shelli said she’d sell hers to us for $20,000.  And another suggested that I fundraise.  She said that everyone loves Manny and they might want to help if they just knew we had a need. 

And the idea was born that very day. 

Now what I haven’t told you is about Shelli and this van.  See, I know Shelli because we both have children adopted from China.  It’s how we met.  She has a homegrown son (now grown) who has the same basic skill level as Manny.  (Wheelchair bound but super bright, etc.)  And Shelli fell in love with Manny early on.  She is even the one who came down and photographed Manny for the cover of Mighty Manny. 

Their van is already wheelchair accessible with a lift.  Manny could drive up on the lift, the drive into the van and park.  He can stay in that chair for the ride.  Wow.  No lifting for me.  I’d not be hurting him. 

Now some more about this van.  It’s got LESS miles than our current van.  And it’s CUSTOM.  It’s decked out.  The kids don’t even know what all is in it as I want them a bit surprised when they see it.  They are gonna freak! 2 DVD players, chargers on each row, etc.  I can’t wait to see them!  This thing is worth WAY more than what she’s asking from us.  They were even offered more and turned it down. 

Our current van is still in really great shape.  I know a TON of adoptive families that have a slew of kids just like we do.  We needed to sell this van to pay for the new one.  One day I put it out there on Facebook.  Basically, we need to see the van.  Wanted to offer it to friends first.  By that afternoon, we had a verbal agreement.  By the next morning, a price was agreed upon. 

Now here’s the rest of that story.  I won’t share the WHO because she hasn’t shared the story yet.  But let’s just say it’s one of my adoption friends.  She had been praying for a 15 passenger van.  Their family has grown and they have to take 2 vehicles anywhere they go now.  New ones are very pricey and it’s hard to buy used since you don’t know if you can trust where it’s been, etc.  So when she saw mine for sale, she leapt at the chance.  We discussed it with our husbands and agreed we would pray for the right amount for the sale price.  We needed as much as possible because of the new van.  But we also wanted them to feel they were getting a great deal. 

Dan threw out a price to me and it was the one that had come to me.  The next morning we put out the number on the table.  And to our surprise, it was the same number they had in mind.  Go God. 

Now the details of how/when to pick it up.  We can’t exactly be without the van.  And wouldn’t you know … they want to come get the van within a week of us getting the other one.  There will be no time we are without a van! 

Meanwhile, the last piece is the fundraising part.  I decided to put it on GoFundMe.  Why? It’s one of the easiest.  Straight forward.  Simple to use. 

One day I put it out there and I saw several people share it on Facebook.  One was a friend I have never bet but we are connected because our kids share a disease.  I will not share all of her story at this point as she’d like it private but let’s just say … Manny has Merosin Deficient Congenital Muscular Dystrophy.  As did her daughter.  Unfortunately, her daughter passed last year unexpectedly. 

She shared my blob about the fundraiser.  She asked that her friends and family donate what they could in her daughter’s name.  And they did.  To this point, this one extended family has donated over 50% of the raised funds (Not counting the sale of the van of course).  I’m blown away. 

What’s even more interesting to me is … this family knows we are Christian.  I know this family is Muslim.  We all have respected each other in views and beliefs.  When their daughter died, I prayed that God would comfort them.  When they announced the birth of their new child recently, I thanked God for them.  When Manny is in the hospital, they tell me they are praying for him.  And I thank them. 

So much of this world is about division.  When truly, we are all so similar.  Shelli has a son with disabilities like my son.  She just wanted my life and Manny’s to be a bit better.  My van will make one family’s day just a little easier.  And giving to us in honor of this little one whose life was cut way too short, to see Manny continuing on, brings a bit of peace and closure to this hurting family.  And I’m struck by the humanity. 

I don’t know about you … but I’m tired of hearing how horrible this world is.  How hateful the people are.  I think the world is still a pretty amazing place.  Filled with people who are loving and generous and kind and beautiful and just trying to survive.  And every now and then they look up and see their fellow man. 

We offer that cup of cold water and a bite to eat.  We visit those who are sick or in prison.  We make sure the homeless person has warm clothes and a blanket.  And somehow the world is a better place. 

Well, I’m used to being on the giving end of these kindnesses.  It’s new and even a bit difficult and humbling to be on the receiving end of the blessings from fellow man.  But because of the loving people in our lives, we are so close to our new van’s price.  As I write this, we are only $3415 short.  Crazy. 

I know some of you cannot give monetarily.  And that’s fine!  No guilt.  Just pray for blessings for all those who did.  Pray for blessings for everyone who covers us in prayer daily.  Pray for blessings for Shelli and her family.  Pray for blessings for the family buying our van.  And pray for the family that lost their treasured daughter. 

And for those who still would like to contribute to this miracle … here’s the link.  http://www.gofundme.com/7aknhw

Or you can send a check.  Just let me know it’s coming and I’ll shoot you over the address.