4 Years ago today, I became your Mama

4 years ago today, my life changed.  At the time, I had no clue just how profound the change. 

Kaley and I drove over to Orlando’s Arnold Palmer Hospital.  We waited in the lobby nervously, anxious to start the next chapter of our lives.  Megan (from the adoption agency) met us and we all went upstairs together. 

I remember walking into that room like it was yesterday.  I still remember the smell. 

Within moments, they were taking out his IV, dressing him into clothes his birthmother had left him, putting all his stuff in a wagon to load into our car. 

And Manny?  He was staring at Kaley.  He couldn’t move anything but his eyes but he never took his eyes off her. 

Less than an hour after we arrived, we were leaving the hospital with Manny.  We also were leaving with hundreds of “unknowns”.  Most of which I hadn’t even begun to realize yet.  I had no birth history, no immunization record, no history of his first 8 months with his birthmother.  No record of the month stay in the hospital of what was done and why.  NOTHING.  We knew NOTHING. 

Halfway home from the hospital, we stopped at a McDonalds for a bite and to use the restroom.  It was the first time I was able to hold him really, change a diaper, etc.  And in that moment, in that bathroom stall, he became mine.  I know it sounds strange.  But in caring for him, it became official.

The moment I knew I was his Mama. 

I had Kaley take a few pictures.  At the time, his adoption wasn’t final so we couldn’t show his face yet.  So this picture would have to do. 

No one knew we were going to adopt him.  It all happened so quickly.  And we weren’t positive he would be a permanent addition to our family.  (Long story.)

 

First introduction of him … http://destinyshousechurch.blogspot.com/2010/03/profile-picture.html

 

Asking how much of his story I should share … http://destinyshousechurch.blogspot.com/2010/05/how-much-is-right-amount.html

 

The day of his first admission … http://destinyshousechurch.blogspot.com/2010/05/decided-to-share-warning-not-happy.html 

I find this one interesting to re-read.  Who knew what I was saying back then.  PROFOUND actually. 

 

Because I’ve been in the hospital 11 days already with no end in sight yet, I’ve had tons of time to reflect.  And here’s my conclusion …

4 years later

• I have more wrinkles, pounds and gray hairs … most are due to him
• I have muscles from lifting a growing child and heavy equipment
• I have medical knowledge … pharmacy, doctor, nurse, respiratory therapist, etc on the job type of degrees all in one crash course.
• I have a deeper faith.  A better relationship with God.
• I have developed spiritual muscles I never knew existed. 
• I’ve cried more tears than I’d like to admit
• I’ve prayed “Lord, Don’t take him” more times than I’d like to remember.
• I lost my way with my husband in ways and we found our way back to each other.
• I’ve loved unconditionally
• I’ve given pieces of myself away, some wisely and some not
• I’ve had so many moments of sheer terror that I cannot begin to describe and most I don’t want to recollect
• I’ve watched my child be discriminated against
• I’ve watched people give up on him
• I’ve fought for his right to medicines and treatments
• I’ve fought for his right to live
• I’ve discovered countless medical mistakes
• I’ve slept every night on “high alert”
• I’ve repositioned him every night for 4 years
• I’ve given up more than I’d like to admit
  
  
  
  4 years later …
   
• I’ve also laughed deeper than I thought possible
• I’ve played endless hours of silly games
• I’ve experienced life through the eyes of a unique child
• I’ve learned compassion
• I’ve helped my other children learn compassion
• I’ve discovered what life is all about
• I’ve discovered my role in the Kingdom of God
• I’ve learned why I am on Earth
• I’ve learned how to make a real difference
• I’ve gained perspective on the human condition and sanctity of life
• I’ve faced death so I know how to live

4 years later …

• My son is still alive.  Not many people thought that was even a possibility.
• I’d do it all over again.
• He is worth it. 

Dear Manny,

Every day I’m so proud to be your Mama.  I’m thrilled you were born.  I’m thankful Rosa chose for you to be adopted.  I’m grateful for Megan at Life for Kids for choosing us to parent you. 

I’m so sorry for all the pain you experience in life.  Physical pain.  Emotional pain.  Mental pain.  When you are sad or broken hearted, so am I.  And I’d gladly sit in a wheelchair and never eat a bite again, I’d take every “pinch”, do every medical procedure, endure every surgery if it meant you could escape them. 

When you’re angry at me because I “let” all this happen to you, I understand.  And I forgive you for acting out towards me.  You’re sad, mad, angry, frustrated and don’t know any other way to express it.  But it does break my heart to know I can’t protect you from germs or procedures or pain.  Life is full of all of them. 

And when you express you’re noticing you’re not like the other kids, it breaks my heart. I offer you kind words and a shoulder to cry on but I know it’s not enough.  I’m thankful you can express these hurts to me. 

I mostly like the days where we are just hanging out.  You’re watching a video on your ipad or swinging in your backyard swing.  You have the most amazing laugh.  You laugh so hard that you lose your breath. And that takes my breath away. 

Your bright mind makes me marvel at you.  Reading.  Understanding.  Growing.  It’s crazy to see how much you know and understand. 

I love your kind heart.  Just today, you asked numerous people, “Are you having a nice day?” and here you are in the hospital quite sick.  You think of others. 

I love the way you like to make other people laugh.  You get a kick out of saying something clever and watching the reaction.  Asking, “Is that funny?”  Which makes it all the funnier. 

Some days, I just watch you sleep.  You’re one of the most beautiful people I’ve ever met.  You take my breath away.  Your bright, inquisitive dancing eyes.  Your luscious curly hair.  Your perfectly formed face.  Your beautiful lips.  The sweet breath you have.  It’s all perfection.

I love holding you.  Even though it’s getting harder to hold you because you’ve gotten so big, I still take every chance I can to do that.  And I melt when you pat me on the back.  It feels like you’re taking care of me.  Or maybe you’re saying, “Good job, Mama”, either way, I’ll take it. 

And I love that you’ve stuck around.  There were many, many nights I wondered if it would be easier for you to just go be with Jesus.  There you could run and jump and eat and move. You could breathe deeply.  You could play.  You would be pain free.  You’d have so much freedom.  So I don’t take it lightly that you stay with us.  I try not to take that lightly or for granted. 

I look at the past 4 years and can’t begin to tell you how incredibly HARD they have been.  There has been a price.  A HUGE price. 

And yet, as I type this, you sit in your hospital bed right across from me giggling at a Mickey Mouse video.  You look up and me and say, “Hi Mama, come sit with me.”  You’re here.  You’re alive.  And I’m in awe. 

4 years ago I wrote a blank check.  To love you for better or worse, richer or poorer, in sickness and in health, til death do us part.  And I meant it. 

It has been the hardest 4 years of my life.  And yet YOU make it worth it. 

If I knew all the pain and heartache and stress and price this would be … I’d still drive to Orlando and pick you up. 

I want you to always know … you are worth it.  And I’d happily do it all over again not to miss. 

All my love,

Mama

Our 4 year anniversary of being Mother and Son

 

 

If I had a dollar ...

If I had a dollar …

for every tear I’ve shed while in a hospital room
for every tear Manny has shed
for every breathing treatment given
for every medicine taken
for every time he was awakened during sleep
for every hour of sleep taken from me
for every IV stick
for every surgery that invaded his body
for every stitch
for every time I’ve suctioned him
for every painful conversation with doctors
for every painful conversation with nurses
for every allergic reaction
for every mistake made  
for every day I’ve spent away from my other kids
for every tear they've cried
for every text saying they miss me and want me home
for every beeping alarm alerting us to danger
for every time I’ve wondered “Is today the day?”
… I’d be RICH. 

 

If I had to pay a dollar…

for every prayer prayed
for every tear another has shed for my family
for every nurse that works tirelessly to help him recover
for every beep they rush to
for every compassionate conversation with nurses
for every informative conversation with doctors
for every medicine given
for every surgery that gave him another chance
for every IV that delivered necessary medicine
for every machine that helps keep him alive
for every alarming machine so we would know he was in danger
for every mistake caught
for every mistake learned from
for every time my child sent me an "I love you" text
for every new day we could have missed
… I’d still be rich 

 

After I wrote this … I realized it needed a disclaimer/explanation.  I know some could read it as “there’s been a lot more of the top than the bottom so I’d still have money left”.  While funny, that’s not what I meant at all. 

What I did mean is … in life, there are good and bad things that happen to us.  But both leave fingerprints on us.  Each experience leaves us with something we couldn’t have had without it. These experiences enrich us … if we let them.

Many people choose to see the good things as “we were entitled to” or “deserved” that.  But then when bad/unpleasant things occur, we think it’s punitive.  We tend to dismiss the good stuff as what we expected and are therefore often not thankful for it.  And the bad stuff is intensified in our minds as “why ME??” and wallow in it.  Because clearly, we only deserve the good stuff in life.  And then we miss the blessing of both sides. 

But life isn’t set up this way.  Good stuff happens.  Bad stuff happens.  And when we come to accept that, it’s a good first step. 

But where I believe we need to get is … how do I glean stuff from the good AND the bad?  How do we not let the good stuff spoil us and turn us into entitled brats? While not letting the bad turn us into angry, broken souls?  How can all of life enrich us?

The other day, Manny was getting a breathing treatment he HATES (but it’s effective so we continue to do it despite his objections).  The respiratory therapist says, “You have to do this so you can get better.” He normally agrees with this logic.  But this time he says he’d rather just stay sick. 

People ask how I do what I do.  Not just once or a few times but CONTINUALLY.  I think my “secret” is somewhere in this revelation.  Life isn’t just the good times.  Life is full of ups and downs and sideways and adventures.  Some of my biggest blessings have come through the painful times. 

My point?  There is good to glean in every moment in life, even the stuff that sucks. 

Makes me think of the powerful poem by Walt Whitman.  I first was introduced to this quote like many others in the movie, “Dead Poet’s Society” and it’s quoted by the character portrayed by Robin Williams.

 

… The question, O me! so sad, recurring—What good amid these, O me, O life?

Answer.  That you are here—that life exists and identity,

That the powerful play goes on, and you may contribute a verse.The question, O me! so sad, recurring—What good amid these, O me, O life?

 

                                       Answer.

That you are here—that life exists and identity,

That the powerful play goes on, and you may contribute a verse.

The question, O me! so sad, recurring—What good amid these, O me, O life?

 

                                       Answer.

That you are here—that life exists and identity,

That the powerful play goes on, and you may contribute a verse.

 

 I have thought about that quote and that concept many times in life.  What if it’s true?  What if MY life is a play or a book that I’m writing?  What kind of characters would I want in my book?  (Fun, outlandish, crazy ones of course.) What kinds of adventures would I like me (the main character) to go on?  What life experiences should she have? What kinds of moral and ethical issues would she face?  What kinds of battles would she fight in?  How many scars would I give her? Would she lose some battles and then win the war?  Would she have people who would come to her side and fight with her?  And at the end of the book, she’d be full.  Her life would have meaning.  The world would be a better place because she came and lived and fought and won.  She’d know her victories and defeats brought her to this place of victory.  And it would all be worth it. 

You know … a cool book.  I’d want an awesome adventure.  I’d want other people to pick up my book and be amazed by it.  Enthralled by it.  Inspired by it.  And at the end of reading it, I’d hope people would want to make THEIR lives more interesting.  They’d need to get out and write a kick butt play too. 

If a good book requires all these ups and downs to be a worthwhile read, why do we think life would be any different?  It’s not.  

So I guess this leaves me with final questions … how’s YOUR book shaping up?  Are you RICH?  Is it a book worth reading?

 

Bye Bye Broviac

Manny has a central line called a broviac. It’s a small tube or straw-like device that goes inside a vein and delivers medicines near the heart.  A broviac central line catheter is made of silicone.  In his case, his is measured as a 4.2 which is about as thick as a fat spaghetti noodle inside. 

This broviac is his only source of nutrition.  Most kids eat by mouth.  Some eat by a tube in their stomachs.  A few “eat” only by IV.  It’s called Parentral Nutrition.  And if it’s the only thing you get, it’s called Total Parentral Nutrition or TPN. 

He needs to get his TPN 21 hours every day or his blood sugars go dangerously low.  During the 3 hours off, he gets other medicines in it … iron, heparin (clot preventer), ethanol (prevents bacterial growth), antibiotics, steroids, pain meds, blood, fluids, breathing meds, etc.  So basically it’s in use 24 hours a day. 

The catheter exits right at the skin in his chest.  The cuff like pieces are 3 of the repairs.  The one closest to his skin was the first one only 3 months after the line was placed.  The lowest (and cleanest) one was his 5th repair.  The discoloration on the older ones is from Iodine which is what we use to keep this area sterile and it's a staining dark red. 
This site is usually covered by a clear dressing.

These lines were designed for short term use.  They were designed for a medicine here and there.  They were NOT designed to be in basically 24 hour a day use with “caustic” substances. 

Some of those medicines I just mentioned are very hard on a line.  Stuff gets “stuck” to the insides of the walls of the catheter and then it makes it more difficult to get medicines in or blood out.  Periodically, he needs a medicine called TPA or Cathflo to help clear the sludge out of the line.  And in some cases, the buildup of gunk causes there to be so much pressure, nothing can get through and the line will break. 

In Manny’s case, this line was placed on February 7, 2012.  That makes the line over 2 years old.  It’s quite impressive how hard this little sucker has worked.  During that time, I’ve lost track of the number of times he’s needed TPA to clear the line.  And he’s had 6 breaks.  (Ironically, none of the breaks were at my hand. They all happened to be in the hands of a nurse.) 

His 6th break.  See the green scissor like device? It's a clamp called a Hemostat. It's what's there to prevent his line from bleeding.  Until we got that on, I had to pinch it as blood was pumping out with every heart beat.

During that time, he has also had NO line infections.  That’s incredible.  For a kid with intestinal failure, gi issues, the constant use of the line, the number of breaks, and other issues … this is amazing.  We contribute it to a couple of things.  One is impeccable line care.  I was taught by the best on how to care for the line and I (nicely) make sure everyone else who handles his line does the same.  And we use the Ethanol Lock Therapy (ELT).  This is a fairly newish procedure.  But basically .3 (that’s about 3 drops) of 70% Ethanol (a type of alcohol) goes into his line.  It stays there for about 2-4 hours.  We then withdraw it out of the line.  It’s a miracle!  But it’s also very, very hard on the line and makes the silicone weaker.  

Between all these factors, we are THRILLED that he has had this line in for over 25 months. 

But … now the line is so brittle and sensitive that a simple flush with saline broke the line.  This is after only 3 weeks ago, they cleaned it out with a medicine and a wire. 

So it’s time that we get a new line. 

What does that involve?                                                                                                                            

When Manny had his last broviac removed, it had only been in for 3 weeks and 2 days. So it was “easily” removed by a surgeon at the bed in ICU.  It took only a few minutes and left a very tiny scar.  (It got removed because it was infected and was making him sick.)

Main issues:

• This one has been in for so long… it might be complicated to get out.
• We have to get a new line in a vein.  The last time they put this one in, they said it was VERY tricky to get it in the vein. 
• He might not have any viable veins in his chest.  The only other options are in his legs.  (Needless to say, this is not a pleasant or easy option.)

So prior to the surgery, we will be doing a few tests.  Mostly to see if there are any veins in his chest that look like good options. 

The surgery plan will likely be:

• Get the old one out safely.
• Try to put the new one in the same vein.  (we know the vein works, why not try to use it?) They will attempt to put a wire in the vein to keep it open to basically “hold its place” and then put the new catheter in the vein.   This is option one for many reasons but mostly because it doesn’t “Use” another vein. 
• If that doesn’t work, the surgeon will attempt to put a new catheter in another vein in his chest.
• If that doesn’t work, he will find any vein he can get. 

This surgeon isn’t someone who has operated on Manny before but we are confident he is the man for the job. 

After surgery … he will be monitored in the hospital.  Not sure how long yet.  That will depend on how quickly Manny recovers and how difficult the surgery was. 

Then we hope the new line will be as good to us as this one was. 

We're gonna be here a while

So it looks like we are gonna be here a while.  First, he is still needing to be on bipap and oxygen.  Today, he's up in his bed and playing finally but he can't come off the machines or he is in trouble breathing.  But he is looking and acting better.  Just still really sick. 

"Rhinovirus" is responsible.  That's the "common cold".  It's nothing.  It's everywhere.  Maybe allergies got him weak and then whamo.  Last week, his labs looked great, this week they are pretty rough.  One of the values show his body has STOPPED fighting off infections.  That’s why the antibiotics were so helpful. 

He is on bipap and oxygen around the clock.  We take it off every 4 hours to do his breathing treatments and before we can get it back on, he's desatting.  I tried for a few minutes just now while I cleaned his face. He was struggling to breathe and was desatting in minutes.  He was asking for it back on.  The issue is that he has these "mucus plugs" that are causing him to lose ability to breathe. They have a machine here which helps it.  We have nothing like it at home.  So it's where we need to be!

The good news is that he's at least playing and looking perkier.  It means it's working.  And the other good news is that he no longer has a fever.  He's on antibiotics so the theory is that he had a pneumonia (bacterial) and this is killing that.  Thus the reduction of fever. 

The pulmonologist said not to change anything today.  His lungs are still pretty junky.  (Meaning a mild pneumonia.)  We will take it day by day. 

Now about his line ... it's been repaired but it's truly on it's last, last, last leg.  We all discussed it and feel that it needs to be replaced.  It's time.  Sadly.  There seems to be no other safe alternative.  This could rupture and break the vein (catastrophic).  Or another break could cause an infection.  So ... the team and I decided it's time to consult the surgeon. 

He was consulted today about what needs to be done prior to those surgeries and when to schedule them.  He feels that we will need to do another dye study .  The last one was inconclusive about the viability of his veins so they want to try a slight alternative.  And besides, that was back in June. Things might have changed since then.  We will do those tests as soon as he gets pulmonology clearance. 

And then he wants to do these procedures while we are still inpatient.  My best guess?  Monday or Tuesday.  Then we stay for at least one day after that. 

I’ll write a separate blog about the specific complications and concerns for the line replacement as well as the secondary procedure they’ll be doing concurrently. 

For now, thanks for the continued prayers.  I’m definitely feeling much improved.  Manny is on the mend.  Now please cover the rest of the family.  Today Kaley is saying she’s not feeling well.  And not sure how Dan is holding down the fort doing parts of my job plus his.  The kids are homeschooled.  It’s a big job. 

And Finally … Manny had several more outbursts in his sleep.  He was clearly traumatized by the whole vascular debacle from a few weeks ago and this one (though a quick one) retraumatized him.  He’s never had nightmares before.  I told Leslie, the Child Life lady.  We did play therapy with Ivs today.  It broke my heart.  One of the things she had him do was to pretend with a doll.  She spoke for the doll, “Ow. That hurts. No pinch” and stuff like that.  He just kept poking and poking.  No mercy.  It revealed a lot into his wounds. 

He also hates the breathing treatment machines we’re using currently.  He begs me to stop! Tonight he said “No!” And the therapist said, “We have to do this to help you get better so you can go home” (and normally this works like a charm).  But tonight, he said, “Then let me be sick.”  (Heart sinking)

Nurses never think about this … when they are doing something traumatic to a kid, they say, “Mama’s right here”.  This sentence is meant to say, “Be comforted for a familiar face is near by.” But what the kid hears, “Mom is standing by watching this and LETTING this happen.”  Manny is never thrilled with me when we are in the hospital.  He’s very angry at me.  And this was also depicted in his play therapy.  And he is angry in general.  During his play time, he got hostile.  It stirred up much emotion. 

I sat by watching and trying not to cry.  Trying not to feel responsible for at least part of his pain.  He needs the treatments.  He needs the medicines.  But it’s my job as a mom to protect.  And at least every 4 hours here at the hospital, I let them do things to him that he considers torture.  It’s for his good but it doesn’t mean he has to like it … or me. 

Praying that tonight he will sleep without nightmares. 
 

Unexpectedly sidelined

We had a great spring break.  Started last Sunday with a game and pizza night with our church folks.  We then had a little girl (age 6) from our church stay a few days with us.



Monday we went bowling.  A friend and nurse Melody gave Manny his own bowling ball.  He loves bowling. 


Tuesday I took the 7 kids to Busch Gardens.  Manny was most enthralled with the sky buckets and would have stayed in it all day if they would have let him. 



Wednesday we stayed home to recoop.  The kids played a marathon of dancing games on the Wii.  Manny loved playing Mario and Sonic and making the characters lose.  He cracks up. 


Thursday we got a ramp so Big Red could go in the Van.  It's a 3 person job to do it and there are moments of panic but we got it. 


Thursday night we went to the IAFF (Firefighters) dinner where I gave a speech about Manny and he was announced as the MDA State Goodwill Ambassador.  Brooklyn, age 6, was announced as the Local Ambassador.  She did a sweet ballet routine in her wheelchair.  Together, they took dozens of pictures with firefighters and handed out their business cards.


"Make a Muscle.  Make a difference."



With our Pinellas Park guys. 






Friday night was the Chili Blaze.  It's a fundraiser put on by Local 2193 Firefighters and all proceeds go to the MDA.  Manny was given his first football jersey and named an honorary T-Bird.  Even the number selected was special and meaningful. 


Do not try this at home.  Nick (the head of the Chili Blaze) asked for a ride since he'd given Manny a ride on his firetruck.  Manny was happy to help out.  He got it turned up to full speed and slung him off.  (Big Red, Manny and Nick were all fine.  The grass not so much.)  It was funny!



The end of the night as we were winding down.  He is wearing his Pinellas Park IAFF Firefighter shirt and holding glow sticks. 




Saturday night was church and potluck.  During the service I noticed I had a sore throat.  By bedtime, it was pretty bad and I took medicine.  Manny was fine.  By 1am, he was coughing pretty bad and needed suction all through the night.  (This didn't help my illness any.)


Sunday morning he had a mild fever and still had the cough despite being on bipap all night.  (For the past 9 months, that was enough.) 


3pm, he had a 104.2 temp and went into some pretty significant respiratory distress.  I grabbed our bags and jumped in the van.  I called the hospitalist "Doc" on our way over to let him know we needed a room. 

This is right before the episode. 




The first thing Manny asked is if he is going to be getting a "pinch" (his word for an IV).  I told him no since his line was working.  He then switched to "no nose" (his way of saying he didn't want a viral respiratory panel nasal swab).  And because I didn't tell him, "No, we aren't doing that." He knew we were. 


By 5pm we were settled in a room.  Orders were put in.  At 6pm, the nurse went to flush so she could draw his labs.  The line broke.  There's a distinct "pop" that happens.  I've heard it 6 times now.  Unmistakable sound.  The nurse wasn't sure it broke.  I was.  She flushed again so she could see the hole.  She went to go get a hemostat to protect blood from coming out or air getting in.  But before she could get back, he was bleeding profusely.  (His heart rate was elevated and pumping out quickly.)  I pinched the line and stopped it from bleeding. 





As soon as it popped, he immediately knew too.  He started saying, "No pinch!"  He is too smart.  He knows what that meant.  And it did.  Our IV team doesn't work on Sundays so I asked, "Who is your best stick?"


I'm thrilled to report that the nurse was able to get it on the very first stick.  It's not all that easy to do with Manny.  We did the nasal swab all at the same time and the "owies" were all over. 


He was asleep by 7 pm and immediately had troubles breathing.  He went on bipap, which is usually enough.  It wasn't.  We added oxygen.  More oxygen.  More oxygen.  The breathing treatments weren't helping.  repositioning wasn't helping.  Suctioning wasn't helping. He looked very very sick.  I felt like we were headed to ICU. 



Eventually about midnight, he was on 8 liters of oxygen (which is a lot and not super great for a kid with a neuromuscular disorder because if oxygen is going in but nothing is sucking it out, the Co2 builds up and causes new troubles.).  But he couldn't get above 80's for his pulse ox.  (He is normally 98-100 without oxygen.) 


In talking with the nurses and respiratory therapist, we knew we had to do something different.  So we tried IPV.  (For those who would like to learn more about that ... here is a user friendly, semi easy to read version of what this is... http://en.wikipedia.org/wiki/IPV)


And it worked.  He started looking less troubled to breathe.  He slowed down his breathing and heart rate.  He was able to go down to 6 liters of oxygen.


Meanwhile, he has this fever.  It spikes very high.  Tylenol isn't bringing it down.  We finally had to do that in conjunction with Toradol to be able to handle the fever.  Even still, Tylenol can only be given every 4 hours and Toradol every 6.  And his fevers are more frequent than that.  I can tell by his breathing how high his temp is getting. 


The night was long.  He couldn't get comfortable.  He had often breathing treatments and medicines.  So we were awakened a lot.


Monday morning.  His line got repaired.  This is likely the last time we can repair it.  We will have to do something different.  I talked to the IV team about what is next.  We discussed options.  Decisions haven't been made but we will see where to go from here. 


But for now (well, as of 2:30 pm) his line is usable again.  And that buys us some time to decide. 


As I type this at 1pm, he's still asleep.  He's been awake for 5-15 minutes here and there but right back to sleep.  He just looks exhausted.   


The biggest issue for him is that he's scared.  Recently he had a very traumatic hospital experience.  And he is just more anxious than normal.  Poor little fella freaks out any time anyone opens the door.  So he asked me to make him a sign.  I complied.  He can read so he knew if I was writing it right. 


Here's the conversation: 
M: I want a sign on the door.
B: Ok. What should it say?
M: Don't hurt Manny. 
B: Do you want it to say Do Not?
M: Don't
B: OK, so "Don't hurt Manny, please?"
M: No, only Don't hurt Manny.
B: Ok.  Anything else?
M: No nose. No pinch. No owies.


I wrote out each word as he said it.  And then he told me exactly where to tape the sign. 





I'm shocked at how you can go from picture one to picture two so quickly. 



So I say, Dear Lord, honor this little man's request. That's my heart's cry right now. He is already scared and distressed enough. Heal him.  Comfort him.  And bring us back home quickly. 

The Aglet ... revisted

Tonight I was searching for a story to share.  Tomorrow I am supposed to give a speech about Manny to a group of Firefighters.  Problem is ... I shared all my good stuff last year and most of those who heard it then will be back again.  So I went searching for old stories. 

I came across this blog entry.  I'm so glad I found it as I had COMPLETELY forgotten all about it.  And if you look at the date, you can see it's after Manny was born but BEFORE we knew of him.  I read the prophetic words in this blog and I just said, "WOW!"  God was truly preparing us. 


Hope you don't mind a small blast from the past... 

________________________

Oct 2, 2009

The shoestring ... The faith of a child

Sam has these shoes that he picked out because they were "COOL".  They have a blue string at the top and a black string at the bottom.  Problem is ... they won't stay laced and the laces are 3 miles long.  I've hinted about them being a problem.  I've made suggestions on how to keep them tied.  I've tied them for him.

And frankly, I've grown tired of reminding him to "Tie Your Shoes!!"

So I took matters into my own hands.  I took all the laces out and started fresh with only ONE lace per shoe.

Problem is ... those little "thingys" on the tips are missing.  So re-lacing was taking a very L O N G time.  In fact, so long that I began to think that I wasn't going to get it done before he had to leave for school.  (And he doesn't have a second pair.)  Serious problem.  Each hole was taking 2-3 minutes of twisting, cutting, pushing, pulling.  It came down to 1 minute before they HAD to leave and I still had 3 holes to go ... at this rate, it will be 9 minutes.

Luke came up beside me and started saying, "It's going to work now.  I prayed."

OK ... point of decision.  And some background info is necessary. As a child, I was given a gift of faith. I just KNEW I would pray about something and God would do it.  Plain and simple.  I even know God turned around a tornado  (but that's another blog entry for another day).  I wasn't all that encouraged when I would say things like Luke said to me.

So the question is:  How do I encourage this gift of faith?  How do I raise a prayer warrior?

The answer *I* came up with:  *I* must take the leap of faith.

He prays.  I pray that his prayer works (for HIS benefit).  And VOILA.  Shoe string in!  We clap, we cheer, we do High 5's.  All the hoop-la draws the attention of Sam who joins us and starts to pray too.   Shoe string in!  We clap, we cheer, we all do high 5's.  More hoop-la.  Now Kaley and Zoe join in on the act.

They're all praying for the shoestring.  I'm praying for God to build their faith.  3rd and final shoestring.  It too went in quickly and painlessly!  They're doing dancing in the kitchen and praising God.  Me too.  We get up and dance all the way to the door ... Sam wearing his nicely tied shoes.

And the rest of yesterday, I spent wondering the amazing journeys that God is going to take my family on.  I began to speculate about future things where we gather together and pray prayers of faith - me and my prayer warriors.

Yesterday it was shoestrings.

Maybe tomorrow it will be the blind to see, the deaf to hear, the lame to walk.  Maybe it will be seeing a person with no hand or foot suddenly have one appear.  Maybe we'll see someone resurrected from the dead.  Maybe mountains are going to be cast into the sea.

I don't know about you, but I'm a woman of faith.  And I'm thrilled to say I'm learning (by God's grace) how to raise children of faith.  I'm raising prayer warriors and praisers.

Anyone got any "shoestrings" that need prayer? I've got the cutest bunch of prayer warriors you've ever seen just itching to see what else God will do!

P.S.  Thanks to a Phineas and Ferb episode, I now know the name of the little plastic things that are supposed to be on the end of a shoestring ... aglet.  See?  I HAVE learned something in the past 4 years.  Ha

Snap, Pop, Wheelchair Van

Friday I had a bunch of errands to do.  The kids were all with me.  Each time, I had to unload his manual wheelchair, get Manny out of his carseat and into the wheelchair.  After the errand, I’d put him back in the van and put the chair back away.  Our van is a 15 passenger van so it’s quite high and up two steps.  His seat is in the middle of the row (otherwise his chair won’t fit).  So it’s quite the obstacle course. All while holding his IV backpack bag that’s connected 21 hours a day to the tube in his chest. 

I moved Manny (something I do numerous times during the day and night).  But this time was different.  I heard and felt something “pop”.  For the rest of the evening, I tried all the things I know to do for it and did a lot of praying. 

The night was long and painful.  And all I could think about was a plan for how to keep Manny and me safe for a lifetime.  He’s getting heavier (that I cannot change, nor would I want to).  I am not getting stronger (that I could change).  So I guess I need to be more faithful to the strength training regimen. 

But the other part of plan is this wheelchair van.   This would greatly reduce the number of times per day that I need to transfer him. For all errands, he would simply drive out of the house and up the lift, into the van.  He’d stay in that chair until we returned home. 

It’s clearly safer for HIM and for ME.  We need this wheelchair van before something else goes "snap" and "pop". 

Please consider praying for, sharing and contributing to our fundraiser.  The link is … http://www.gofundme.com/7aknhw

 

If you give a kid a wheelchair

Ever read "If you give a mouse a cookie"? 


Well, this is "If you give a kid a wheelchair..."

(Manny and Paula with MDA the first time in his new wheelchair he calls "Big Red")


If you give a kid a wheelchair, he's going to want to ride it. 
He's going to ride it to the park and drive straight to the swings to tell you that's what he wants to do.










If you let him ride it in the backyard, he's going to play tag with his brothers and sisters for the first time in his life.

He's going to laugh so hard, he can't breathe.



If you let him ride in the backyard, he's going to want to go everywhere in it. 


But right now he can't. 
Currently, we deadlift his manual wheelchair in the back of our van.  But we can't possibly do that for his 350 pound wheelchair. 


So his parents will research the cheapest way to get a wheelchair in the van. 


We find out that's a ramp.  But according to ADA, it needs to be a 17 foot ramp based on the rise.  (That's not possible, practical nor feasible.)  We were told we could make an 8 foot do so we are looking into that. 


But if we get the ramp, we then need to put it in the van.  The seat is 39 inches from front to back.  The van is only 36 inches from front to back.  So it would have to go up a ramp and then make a sharp right turn? Not sure it's even possible??

And then IF we could get it up the too short ramp and into the too short trunk and turned sideways, we still have to take him out of the seat and put him in the car seat. 


Currently, I can still do that.  He's 50 pounds.  And since he doesn't hold any of his own weight, it's like a kid who is sleeping.  He's HUGE.  As I say, he's getting heavier and I'm not getting stronger. 


So our goal would be to eventually have a way that he could drive up in his chair and then stay in the chair. 


So if you give a kid a wheelchair and he needs to stay in that chair, our van would need a lift.  And that's thousands of dollars.


And if we got that lift, we'd need it installed (more money). 


And if we got it installed, we'd have to remove a row of seats and put in tie downs or anchors (more money).


And if we got the anchors, we'd have to replace a bench seat with a captain's chair so someone could sit by him.  (More money). 


And by this time, the mom and dad are saying, "Is it worth all this money invested in a van that's nearing 100,000 miles??


So the mom will complain to discuss with her girlfriends.  They will brainstorm and come up with a new solution. 


There's a friend who is wanting to sell her VERY nice custom van which seats 10 and is ALREADY wheelchair accessible with TONS of other upgrades (like TV/DVD player and chargers at the seats! The kids would freak!)  She is willing to sell it to me for a ridiculous discount. 

So if this friend offers a van we can't refuse, we start a fundraising gig.  I've never done one before.  I'm so not good at it.  But as one friend told me, it's just letting people know we have a need and letting people help who want to.  Simple as that. 


So if I start a fundraising page, my friends will be seeing it often.   (that was your warning). 


Here's the link ... please share, donate and pray!!! http://www.gofundme.com/7aknhw





If you give a kid a wheelchair, it means lots of people will get the chance to bless Manny with the gift of Mobility.