Monday, February 28, 2011

National Rare Disease Day

Today is Rare Disease Day.  I'm not sure how I feel about that.  Every day of my life is "Rare Disease Day".  I try to bring awareness to two rare diseases on a daily basis through my work with Shwachman-Diamond America and in helping a little bit recently with Mitochondrial Disease efforts.

I have two boys with clinical Shwachman-Diamond Syndrome and secondary Mitochondrial Disease, so rare diseases are a part of our daily lives and very much a part of our vocabulary.  We can never escape it.  Shwachman-Diamond Syndrome has no cure.  Mitochondrial Disease has no cure.  There are treatments that can help alleviate the symptoms, but there is no cure for either disease.  We know that Mitochondrial disease can be progressive, as can Shwachman-Diamond Syndrome.  Both can be life-threatening and deadly and we've lost too many friends to both diseases.

Yes, we have many blessings and life is good.  We just deal with a lot of medical issues on the side.  I don't often write the bad and ugly side of the diseases the boys have because we choose to focus on our blessings and abilities more than anything else.  For our family, these diseases do not define the boys, they do not define our family.  They are very much a part of who we all are, but they are not the total sum of our lives. They affect almost every minute of our lives, but we continue to enjoy life in spite of the obstacles these diseases bring. 

These rare diseases even come up in confession for me.  Just a few weeks ago, I had to confess that I was angry with God and tired of urine. It happens. I don't always carry my cross squarely on my shoulders with Joy as St. Josemaria Escriva reminds us we must do.   I battle with God over accepting them and am sometimes angry with Him for allowing these monsters into our lives.  Mostly though, I am thankful that we have been chosen to suffer in this way for Him and with Him.  I once told a friend that I could never identify with Christ Crucified until we'd lost so many babies and we dealt with having sick children. 

One Divine Mercy Sunday many years ago, I remember sitting outside at the Shrine of Our Lady of Czestochowa in San Antonio, TX.  They had one of the largest Divine Mercy images I have ever seen hanging outside during Mass.  This was the first day I fully accepted that Sean had been diagnosed with Shwachman-Diamond Syndrome.  I'd been battling with God about this for months.  Later, when Joseph was diagnosed, I battled again.  I even told God that He'd only had to have one Son crucified.  There was a point when I would even say this to the Blessed Mother (I fully admit I am not always on the path to sainthood!). The points at which the doctors have believed the boys would need a bone marrow transplant, the times I've seen my children suffering without being able to help and watching them fight the daily battles to overcome obstacles have been my biggest crosses.  I've begged God to heal them and give me a death by the worst and most painful cancer there is in exchange for their health.  Over the years, I have come to learn that healing comes in many forms. Spiritual healing and physical healing.  I also believe acceptance is a form of healing, too.  Just being able to accept the crosses without getting caught up in the why of it all can be quite freeing.  Of course, when I ask, "Why me?", Jesus usually replies from the cross, "Why me?" I get your point, Lord. 

In the middle of the night one night, I called a friend. She came with me to Eucharistic Adoration at our church, St. John Neumann, and we both laid on the floor before Our Lord and wept.  I think this was the first time I could identify with Christ on the Cross.  Until then, I knew He'd said from the cross, "Father, Father, why have you forsaken me?" but I could never understand how the Son of God could say such a thing. Of course Jesus knew His Father was with Him always.  That night, I realized that Jesus knew His Father was with Him, yet He cried out anyway.  I felt the same way.

As a cooperator in Opus Dei, my faith developed as we were taught at weekly gatherings and monthly retreats. I began to realize that all of these late nights with sick kids, the suffering, the pain and everything involved was a way for me to sanctify my life, if only I would offer it to God and allow Him to use it according to His Will.   I've tried to help my children do the same in their battles with Shwachman-Diamond Syndrome and Mitochondrial Disease.

Joseph doesn't like to talk a lot about his daily "medical procedures".  He has written articles about them in the past because he hopes his words can be of help to another child.  We live by the clock for timing of these things-- every four hours. Pills at every meal and main medications in the morning and evening. Pills before exercise, other medications to mix in with drink or food and IgG every week (SCIG). We have battles to take medications on many days, but mostly the battle is them remembering.  It isn't like they are left to their own devices to remember.  It is mind boggling that I set the pills out and remind them and they STILL forget!  Luckily, God never forgets us! 

One of the most gut wrenching moments for me was when Joseph had to start cathing.  The doctor told us both and was going to send a nurse in to teach us.  They left the room and Joseph started screaming, "NO! NO! I don't want to do that!  I don't think Jesus is with me!  If  He was with me, this wouldn't be happening! NO!"  He had tears streaming down his face and I tried my best to stay calm and collected.  I hugged him as tight as I could and prayed that I could take this cross from him. The nurse came in and I asked her to leave us for a few minutes so that we could pray.  We prayed and asked God to help us see the bright side of illness.  We offered it up for several people we knew going through hard times.  It was hard, but Joseph did it for Jesus.

Several weeks later, skipping through a parking lot Joseph said that cathing wasn't so bad.  His dad asked, "Really? Where'd you learn that?"  Joseph replied, "Mom taught me how to look on the bright side." 

I'm not always looking on the bright side, I do have my moments.  When Sean has a migraine that lasts many days, I can't find much good in that.  Their daily pain (Like yesterday, Joseph was hobbling around all day because his hip hurt) and chronic fatigue is something else I battle with seeing the good.  Joseph has been battling an infection for six weeks now and I have a hard time finding good in that, too.  They have learned to offer it up as a prayer to Our Lord and it is life as they know it.  That is the good that comes from it. They tend to be more compassionate and understanding of others, too.  We don't take so much of our lives for granted because we know how quickly things can go in the wrong direction.

Today, offer a prayer for those battling rare diseases of any kind.  Many of these rare diseases have no cure and very few treatment options.  Pray for those who have lost their lives to any rare disease-- including Neuroblastoma (rare childhood cancer)-- we've lost a few of our hospital friends to neuroblastoma.  I realize that Shwachman-Diamond Syndrome and Mitrochondrial disease are but a few in a long list of rare diseases. 

Sunday, February 27, 2011

Gate Fold Card Tutorial Video

Gate Fold cards are fun to make! This is a video I produced a few months ago and wanted to show it to you here. I retain rights to all of my videos, so I am free to share them. Please feel free to share my video link with others if you like my creations!

Happy Stamping!

Gate Fold Card from Pattie Curran on Vimeo.

Tie Dye Paper Tutorial Video

Kids love this! It is so much fun to create your own tie dye paper! This is a video I did for a website.... I own the rights to it, so I'm sharing a free sneak peek!

Tie Dye Paper from Pattie Curran on Vimeo.

Garden Science

I love to garden and I love science!  This is one of my favorite projects to do with my boys.  Joseph vaguely remembered watching a seed grow in a gel medium, but wanted to see it again.  It is easy to make your own greenhouse!  Purchase the crystals that absorb water (various brand names), place them in a freezer bag, add water and wait for the water to be absorbed.  Once the medium is gelatinous, add your seeds and hang in a window. 

Saturday, February 26, 2011

Save Baby Joseph

This is an email I sent to friends and family today:
Sending along as an FYI—many of you may already know about this and may have already contacted the Canadian officials—if not, you can follow the link in the email below mine. Priests for Life has offered to pay baby Joseph’s expenses so that he can receive proper care here in the US.

Having two boys with potentially life-threatening illnesses and knowing so many children who have been on ventilators and in critical care like Joseph, this is something close to my heart. Praise be to God for holy priests like Fr. Pavone who fight for ALL life. My children have a progressive disease—(two, really) and neither has a cure. Let me restate that—there is NO CURE for Mitochondrial disease and NO CURE for Shwachman-Diamond Syndrome. Mitochondrial disease patients often end up on ventilators because of neuromuscular deterioration. SDS patients have many complications from their disease and/or bone marrow transplants and end up on ventilators. I ask each one of you this: does this mean we should just stop treating them now because these diseases will eventually kill them? Of course not! My Joseph already has swallowing problems…. Do we just not treat the disease because we know it will progress? Do we let him continue to aspirate liquids because we know it is going to get worse, so why bother finding solutions?

Baby Joseph pulled his feeding tube out himself several times—deliberately pulled it out—the nurses and doctors tied his hands down. He responds to his parents and doesn’t like to be tickled (see videos on line) – this is not something someone in a permanent vegetative state does. My Sean had to have his hands tied and wrapped up because he kept pulling his tubes out before (long ago—he stopped breathing and had to spend time in the hospital). His parents know the disease is progressive.

While universal healthcare sounds good on the outside—the problem is that a government devoid of God ends up making these choices based on money. Joseph’s parents have been refused to allow Joseph to have a tracheotomy so he can go home with them. Doctors and the Canadian government are not allowing this precious child of God to go home with his parents to be cared for until his death—his parents know he has the same disease his sister died of years ago, they know what to expect—she lived six months after her tracheotomy in the care of her parents at their home. The Canadian government has ruled that baby Joseph must have the breathing tube (vent) pulled and he must die NOW in the hospital. You may not even agree with his parents—but it should be THEIR choice—Joseph is THEIR child, a child entrusted to them by God – they want baby Joseph to have this procedure so that he can come home with them to live for a few more months-- or years—only God knows the time Joseph has left on this earth.

Imagine yourself in their position—unfortunately, I can do it all too easily—we have had friends in this position-- we’ve known too many children who have died from SDS and Mito. Pray for this family and do more, if you are able.

Thank God Chris’ parents had the choice to send their daughter, Erin, to rehab after she spent two and a half weeks in a coma – the doctors didn’t think she was a candidate for rehab, but his parents MADE THE DECSION for their OWN child. No government should tell parents what to do for their own child. What if the decision had been up to what the doctors thought and not her parents?

God bless Fr. Pavone and Priests for Life for stepping up to the plate. We are blessed to have so many holy priests fighting for LIFE!


“In some causes silence is dangerous.” ~Saint Ambrose


From: Father Frank's Alerts []

Sent: Saturday, February 26, 2011 12:56 PM


Subject: Save Baby Joseph

Save Baby Joseph!

February 26, 2011

Dear Pattie,

There's an 18-month-old baby boy in Canada who is about to be put to death by the Canadian government.

I'm writing to you today so that you can help Priests For Life save this baby's life if possible.

Here's the situation … The baby, who is known as Baby Joseph, is suffering from a critical condition that requires him to have a breathing tube in order to stay alive.

However, the Canadian government has decided that they don't want to spend any more money on Baby Joseph to keep him alive.

And, to everyone's horror, the government won't even let Baby Joseph go home with his parents. His parents need to obtain better health care for Baby Joseph by bringing him to the United States where a hospital -- preferably a Catholic hospital where the baby will NOT be euthanized.

My experience in the case of Terri Schiavo back in 2005 showed me how devastating it is when a person -- no matter how young or how old -- is put to death by the "health care" system that pretends to help the sick, the poor, the indigent, the elderly, and those with terminal illnesses.

In reality, the government "health care" system doesn't want to spend money on anyone if they can't make money on that patient.

Therefore, since the Canadian government -- because of their system of rationing health care -- is determined to put Baby Joseph to death by removing his breathing tube, we at Priests For Life are stepping up to the plate and offering to bring Baby Joseph to the United States so that he can receive better health care and possibly survive his illness rather than being put to death because of rationed health care.

You see, the Canadian government is refusing to let Baby Joseph's parents take care of him. His parents don't want him to die. They already had one child die from a similar illness, and they don't want it to happen again.

But because of the Canadian government's system of "socialized" health care, Baby Joseph is in danger. They won't take care of him. Therefore, we have to.
The first thing I urge you to do is contact the officials in the Canadian government who are holding Baby Joseph's life in their hands. All you have to do is click here and your message will be sent immediately to these Canadian officials to implore them to release Baby Joseph back to his parents so that he can get the proper health care he needs and not be put to death in the painful, inhumane method of removing his breathing tube.
The second thing you need to do is pray for Baby Joseph and his parents for a sensitive solution to this problem.
And then, third, please forward this alert to everyone on your email list!

I will keep you updated on our progress in this crucial fight to save Baby Joseph. Please keep reading these alerts and forwarding them to all your friends and family members so that the word can get out about the injustices inflicted upon little children by the Culture of Death.


Fr. Frank Pavone
National Director, Priests for Life
Priests for Life
PO Box 141172
Staten Island, NY 10314
Phone: 718-980-4400
Toll Free: 1-888-735-3448
Fax: 718-980-6515 

Tuesday, February 22, 2011

Faux Leather with Masking Tape Tutorial Video

This is another faux leather technique that I think you will love. The results are fabulous and really do look like leather! This technique is great for scrapbooks and cards. See what you can find to do with it! I created this video for a website not too long ago and wanted to share it with my blog readers. I can do that since I retain all rights to my video productions and creations (lucky you!). Enjoy!

Faux Leather with Masking Tape from Pattie Curran on Vimeo.

From Seed to Skillet

This past weekend I had a date night with hubby (this doesn't happen often!). We went to dinner and the headed to the book store! I purchased a book titled From Seed to Skillet It is a wonderful gardening book! Since we've already started pruchasing the seeds for our garden this year, I was very excited to get my hands on this book!  I'd seen an interview with the author and knew I'd love this book to pieces.  Some people buy clothes, I buy books.

The author goes into detail about growing vegetables from seed. Complete with gardening tips. composting tips, how to start the seed, care for the young plants all the way to harvest. THEN the book includes recipes to use with your fresh garden produce. There is even a section on how to build beds and raised beds for your garden.
We love to garden, so this book is an excellent addition to our gardening section in our library.  Over the years, my children and I have gardened for many reasons. We've made specific animal gardens (our bunny garden) and some for butterflies and insects, too. We love to have plants that attract bees to the yard to help pollenate all of the flowers we love so much and we have plants that attract butterflies and feed the caterpillars.  We love to make pumpkin pie and pumpkin soup from the wonderful pumpkins we grow, salsa and salad with our tomatoes and we love to feed our bunny fresh carrots.   Joseph picked up catnip seeds in honor of our new pet, Valentine, this season.

I like Heirloom veggies because I know I can collect the seed from the produce to grow more plants the following year. Heirloom varieties are varieties that have been around for over half a century or longer and whose seed is able to produce future generations of vegetable plants.  I'd love to hear what you are planning in your garden this year.  We are looking forward to spring and are already getting seeds started in our "little greenhouses".  Happy gardening and happy eating!  This book will help you do both!

Sunday, February 20, 2011

Saturday, February 19, 2011

Bodie, Our SDS Friend

Bodie is a 5 year old little boy with Shwachman-Diamond Syndrome who just had a bone marrow transplant last month.  His dad is in the Navy and they have a wonderful family.  We've met them several times at Camp.   You can read about Bodie on his new website:  His family shares his transplant journey and they are trying to raise money to help pay for medical expenses.

Please keep Bodie and his family in your prayers!

Wednesday, February 16, 2011

An Ordinary Day

People often ask me what homeschooling is "like" or where do you "do it"? is another question that always comes up.  Over the years and as houses have changed, our  homeschooling space has changed. When the kids were smaller, we could get away with less space.   Our first house had no room for homeschooling other than at the kitchen table.  Matthew did his Kindergarten work there.  Our second house had a great classroom! I really miss that classroom! The previous owners had finished a room in their basement complete with storage space, closets and a wet bar, which became our science bar. Our current house doesn't have a finished basement and we've had dreams of having a classroom down there for years.  We started out doing school work in a spare bedroom here in this house, but after a year, I was going stir crazy!  Now, our classroom consists of a den turned library work room and a formal dining room turned craft and school room.

An ordinary day consists of getting up, doing a few chores, eating and hopefully brushing teeth.  Some mornings are better than others with only a few reminders to take their pills and bring down their dirty clothes.   I've given up on fighting with them to keep their desks organized. Warning: this pictures show a messy school area!

Matthew looking up at me instead of doing his work

Sean at his MESSY desk
Joseph Taking a Test at the small station in the kitchen. Above, you can see his salt and pepper shaker collection (he loves to collect these!) and some of their art work, too....

Joseph Reading with his Bunny

This is pretty much an ordinary day in our house. Most days, we manage to get all of their school work done!

New Articles Published

I wrote two new articles that were published on Associated Content.  The first one is Homeschooling Day Trips: Guilford Courthouse (Battlefield) : Visit the Battlefield Known for the American Defeat that Helped America Win the Revolutionary War

The second one is another coping with Chronic Illness article:  God's Grace is Sufficient: His Grace Helps Kids with Chronic Illness Cope

I hope you'll take a peek. My prayer is always that I can help others who live with chronically ill children by sharing our experiences.

 Have a great day!

Tuesday, February 15, 2011

It's All God

This morning, when Joseph told the reporter that Shwachman-Diamond Syndrome didn't affect his life, I was shocked. I know they have as normal a life as is possible with chronic illness, but I never expected him to say, "It doesn't," in response to the question, "How does Shwachman-Diamond Syndrome affect your life?" We've worked hard to ensure they have a "normal" childhood, so hearing him say this brought joy to my heart. It also brought tears my eyes.

I know it affects his life-- he tells me about it often. What was beautiful about this morning is that in that ONE instant, that ONE moment, the overall perception of his life came out in those words. It doesn't affect his life in the sense that he is able to enjoy all the normal activities of childhood. We adapt and overcome and find ways to make normal childhood activities possible.

I've been thinking about it a lot today. Friends who have heard the boys say this sort of thing always say, "Oh, it is because you and Chris are such great parents," or something a lot like that. I have to remind people that it is ALL God. Not me, not Chris, but God. If you stepped into our chaotic lives for a moment, you'd see that it really is God who does all of these things. Sure, Chris and I play a part, but God takes over and makes up for what we are lacking.

Blood Drive Interview

On March 27, 2011 our church is having a blood drive.  Today, the newspaper interviewed Sean and Joseph to get the word out.  The reporter wanted to interview folks who use blood products.  Because we are so thankful for those who donate blood, platelets and plasma, we are always willing to help get the word out about any sort of blood drives!  Melanie, from parish care at Holy Cross, set up the interview and is putting the drive together with other volunteers.  They are asking that people make appointments to donate blood and are hoping to get 38 pints donated on March 27, 2011.  If you want more informatrion about the blood drive or you would like to make an appointment, email parish care:

Ryan (the reporter) asked the boys several questions.  The one that most stands out to me is when he asked how having Shwachman-Diamond Syndrome affected their lives.  Joseph quickly replied, "It doesn't really affect my life, I mean, other than we go to the hospital a lot.'"

WOW.  My kids continually amaze me.  Between the two of them, they have been under anesthesia over 50 times... not including all of the procedures, MRIs and treatments that they have had without anesthesia.  Joseph has had neurosurgery and other surgeries and then developed infections afterward that landed him back in the hospital. He also performs certain medical procedures several times a day (every 4 hours) and takes about 40 pills a day, plus other meds..... and he can says it doesn;t affect his life!?   Absoulutely amazing.

The article will be in tomorrow's paper along with an article about Matthew.  Matthew was interviewed last week for an article.   Here are some pictures from the interview today along with a picture of IgG from my fridge, just in case you'd like to know what IgG, a blood product, looks like.

Our Valentine

Remember the stray cat that came by?  Yesterday, that cat officially became our cat.  Joseph renamed her Valentine in honor of St. Valentine's Day. 

The vet believes she is between 1-2 years old.  She is very sweet.  Friday we bring her in to be spayed. Joseph is paying us back for the vet visit, too.  Poor girl had a bad case of ear mites, the tech said it was impressive.  I wasn't impressed.  It made me itch seeing those things and I had to shower twice. 

Here is Joseph's sweet Valentine:

Monday, February 14, 2011

Shan Passed Away

Shanette Elder, owner of Liuzza's, dies of Cancer.

Shan Passed away this weekend while her brother, Michael, is still in a coma after a drunk driver hit him just over a week ago.  Please pray for Aunt T, their mother.  Shan battled lung cancer for many, many years and had been living with one lung for a very long time.  The Thursday before Michael was hit by the drunk driver, Shan was told there was nothing more they could do for her and Hospice was called in. 

Over the last week, we have been looking through our scrapbook from 2006.   Katrina destroyed Liuzza's and Shan and Michael rebuilt it.  We were able to visit them just about 1 year after Katrina -- on the second day of their grand reopening in 2006.  Here are a few pictures from that visit.  Please pray for Michael and his entire family-- especially his mom.  I cannot even begin to imagine her pain and grief right now. 

Wednesday, February 9, 2011

iConfess App

I was reading an article in The Daily about the iConfess App for the iPhone.  It is very interesting.  Some of the comments were a bit crazy, but that is to be expected, right?  Not everyone understands the value of examining one's conscience. To read a web version of the article in The Daily (an app for the iPad - a tablet-based original news publication), use this link:

We've had books on examination of conscience and pamphlets, why not bring it to the iPhone and iTouch? You still have to go to confession with a priest, but this certainly helps with examination of conscience!

We downloaded The Daily App for the iPad and have a free two week trial.  So far, we like it!  I'm reading a story continued from yesterday on a US Army Soldier who is the most wounded soldier ever to go back into combat.

Monday, February 7, 2011

Waterfall Flip Card Tutorial Video

Hopefully, my video makes helps you make waterfall flip cards easily. Once you make one, you'll want to make at least ten more! I couldn't stop making them! I made this video for a website some time ago and wanted to share it here (I can do that since I retain rights to my videos and creations!) I hope you enjoy making a waterfall flip card!

Waterfall Flip Card from Pattie Curran on Vimeo.

God First, Even Before Football

Wasn't the Super Bowl great!? Most of us were glad that the Packers won. We only have one Steelers fan in the house. He handled the loss quite well. We made it home just before kickoff, and I mean just before kickoff. We drove in the driveway at 6:16 pm.

It ended up being a really crazy day. We'd arrived in Anderson, SC at 1 am. The boys and I were exhausted from the previous few days and the driving. When I tried to wake them at 8 in the morning, they didn't budge! Later, the Packers fan and the Steelers fan started complaining about having to go to the 4pm Mass in Salisbury! Oh MY! Joseph asked, "Can't we get an annulment from Mass?" He'd overheard his aunts talking about annulments a few days earlier and apparently was a bit confused! The Packers fan had an attitude all day long.

God has a sense of humor, though. The homily at the 4pm Mass was absolutely great. The Deacon told a story about a time when Vince Lombardi was on the way to a coach camp and made the car turn around when he found out the priest wasn't going to be at the players camp to offer daily Mass. Vince Lombardi, it was said, tried to go to daily Mass. The looks on my boys' faces was priceless. After Mass, I thanked the Deacon for the wonderful homily and explained about the grief my oldest son had given me the entire day. My youngest son had changed his attitude when I explained that maybe the winner was decided by the number of fans who go to Mass with a good attitude.

We can't make football into a god by putting football before going to Mass!

Still Friends, even after the Loss.....

After the Packers Won the game

Friday, February 4, 2011

Keep Laughing, it makes the Devil Mad

This morning, I was somewhat surprised to hear my youngest tell grandma that he'd had a good time yesterday. My mantra through the whole day yesterday was, "Keep laughing because it makes the devil mad." I'd started off the day asking God to watch over the brakes. The night before, we'd noticed a burning smell and my hubby said it was likely just the brakes because he had just done them. I should have asked God to protect the entire truck!

The morning started off on the wrong note. Cleaning up bodily fluids always starts my day off the right way.  Joseph had a bad night with falling and tripping, then the morning brought its own troubles. After cleaning, I finally was about to shower and he came running in a panic looking for paper towels. He'd spilled milk. Let's not cry over spilled milk (or broken glasses and plates, as I have also learned!) I'd asked God to help us yesterday morning and prayed the brakes would be fine as we headed off  to see their Mito doctor.

As we made it over the causeway, we smelled the burnt rubber or burnt something. I had my oldest son call dad, as I am inept when it comes to car trouble.  As we turned onto Jefferson Highway, the car lost steering, but I was able to pull over in this boarded up store's small parking space. Gathering my thoughts quickly, I walked over to the store next door and asked if they would mind my parking the truck there until we could get back from the boys' doctor appointment. I also asked for the number to a local cab company. Since my cash supply had been depleted on the trip down, I borrowed money from my youngest son to pay our cab fare (I paid him back with interest once we got to an ATM machine!)  I was thankful he has a job! We caught a cab to the appointment..... all was well.

As I stood in line to register, my phone rang. The doctor's nurse wondering where we were. It was only 10:05! I explained we were registering and would be right up. The nurse said the doctor was wondering because we were usually right on time. Yes, and we would have been had the pulley and belt not come flying off the car! Just have to keep laughing. 

The appointment went well. I took a lot of notes and am still digesting. I didn't have time to think about any of it during the day. Well, at least not much thought was given to it in the midst of the other chaos.

Life really is what you make of it. We can choose to make the best of things or we can choose not to. We caught a cab back to where the truck was and I gave my oldest enough cash to pay the cab to get them all to the repair shop. I waited for the tow truck and met the boys at the repair shop. As I walked in the door, Joseph announced, "Hey mom! They have FREE soda here! FREE! As many as you want!" I reminded them all that free didn't mean you could drink as much as you wanted!

We called an aunt who drove across town to drive us across the street. The boys got a kick out of it. We were planning on eating lunch with her and chatting..... she ended up having to do something else. We saw her for a brief minute and it was good. In the end, we found this dive where the boys ate well. Matthew ended up getting a second shrimp po-boy and was very happy. I had a Muffalatta. Good food.  Life is good. We decided we wanted to find a king cake, so we asked a few 'locals" about the nearest bakery. If your are stuck and the food is good, it isn't all that bad, right? We walked to a bakery several blocks away -- it was cold, but the prize at the end was worth it. King Cake. Yum. We ate it at the auto repair place and shared a few pieces with other patrons.  Several hours later, the car was done and we headed out of town. Got onto the causeway and the car died again. 

Keep laughing, it makes the devil mad. When life throws this stuff at you, satan wins if you give in and forget to count your blessings.  I kept reminding myself that there could be a lot worse things in life. Matthew called 911 and was transferred to the causeway police. We followed their instructions.  The policeman came and told us to get back in the car, that he would push us to the crossover, adding that he would let me know when to get into the left lane. I didn't think about it until I got into the car. That is when I wondered how he would tell me. I told Sean to keep an eye on the policeman because I couldn't see him. The boys wondered out loud how he would alert us. That is when we heard the voice over the speaker say, "Move over to the left lane!" (This is God speaking! ha ha)

As we sat on the causeway waiting for a tow truck, we saw several people get pulled over and get tickets. One lady was really crying. We took some crazy pictures. My friend, Kate, arrived to bring us back to New Orleans. I was very thankful she lived so close to the causeway! Found an ATM to get money. Had the car checked out again...... ate Chinese food and headed back to Mandeville. Matthew was worried we'd get stuck again. We made it across safely.  Before heading out to Baton Rouge, I decided to eat my fortune cookie. I laughed so hard when I read the fortune: Learn to enjoy every minute of your life.

In the scheme of things, cars that don't run aren't such a big deal. Life really is what you make it. We had a great day-- good food, good friends and lots of laughter. God is good.

Here are a few pictures from our day:

The First Tow Truck

Matthew eating his Second Shrimp Po-Boy

Stuck on the Bridge

Just waiting for the Tow Truck on the Causeway

Wednesday, February 2, 2011

Go Pack Go! I Mean, Pack your Bags!

Yes, I am a Packers fan, but this isn't a post about the team that will win the Super Bowl. Packing in our house is beyond crazy. I've got one OCD kid and that alone can make it crazy. I hate packing medical supplies. I made up cath kits (60) and got all the supplies for SCIG. I even remembered the pump. Since Joseph is sick, I don't want to delay SCIG a day or two.... it will help him fight the crud. He has a knack for getting fevers while we are on trips.....which means a trip to an unknown doctor. Please stay fever free, Joseph!

Pills and more...... it is always a miracle if I don;t forget at least one thing. We'll see if this trip is a miracle or not. I pack their pills in ziplocs or morning and night doses. It makes it easier when we travel. We've tried al sorts of fancy pill containers and in the end, ziploc bags end up being the most useful. Joseph takes over 40 pills a day and Sean only takes about 25 or so.

Do you have boys? I sometimes wonder about mine. Monday, I told them to have all of their stuff packed before bed. Then, I asked dad to check their bags. Everyone told me they were packed and ready to go.

This morning after spending a few hours waiting for Sean to have his MRI, I noticed Joseph was looking for things. He had not packed his jeans.... or certain items he wanted to bring. When I inquired as to why he had nto packed them, he said, "I forgot that I would need jeans." He forgot. Next up? Sean. He packed his clothes, but had to spend an hour packing the other items he needed to bring on the trip. What? He said he didn't realize when I told him to pack that I meant for him to pack ALL of hsi stuff. No, dear, not all of it... just the stuff you'll need on the trip.

Really, Go Pack. Go. And I do hope they win the Super Bowl. The MRI experience was a strange one. I'll have to update on it tomorrow. Dad is enjoying the rest of the week at home by himself. He fixed the brakes, the leaking hoses and everything else on the car.... now he gets to rest. We made it to Atlanta in the pouring rain. I'd relax for less than a minute, then without even realizing it, I would find myself tensed up again. Such is the nature of driving in pouring rain. Hope tomorrow we have clear skies! Maybe I can talk the Mito doctor into moving up to North Carolina? It is such a long trip.......