Thank You!

J.M.J.

Not a day goes by when I am not eternally grateful for the tremendous amount of love and support shown to us as we carry this current cross.  For many weeks, I survived on nothing but prayers sent above by people I will never meet this side of life.  And since I will not meet so many of you in person, I just want to say THANK YOU for all you have done for Fulton and my entire family.

Bless you all!

Some Days Are Harder Than Others

J.M.J.

Every once and awhile I will break down and post it like it is.  This whole burn thing really stinks and today was an especially difficult day.  It is not just the drama of his care, the pain he is in, and the emotional stress and heartache - really, I suppose, it is just not knowing what is happening to his skin on his head and not seeing any end to his suffering any time soon.  Oh Great Physician, please enlighten the doctors and guide them towards a cure!  

And if anyone has any suggestions or knows a dermatologist, I'm all ears!

The following is a post I put up on Facebook earlier this evening:

Another spot on his head was starting to ooze, so I am now actively tending to 3 major areas on his head. 4 spots on the left side, a strip at his hairline on the right side and a patch behind his right ear. I applied the first calendula treatment last night and it completely broke through the scabs overnight (this stuff is amazing!) So now it will be a matter of getting it all out of his hair. The consistency is similar to a mixture of peanutbutter and gum, so I am sure you can imagine how difficult it is to get this out of his hair in areas where his nerves are exposed. This morning's cleaning and bandage change took almost 3 hours. That was not 3 hours of constant work, mind you, but it was a tiresme process all the same. (This evening's bandage change went much faster, thanks to Jay pitching in and taking over.)


left side

I try to do it in pieces to lessen the trauma. I honestly do not know what else to do with this. While the smaller patches are responding well to antifungal treatment, the bigger spots continue to grow. He currently has 8 spots 'exposed' - each one being either an inch or half an inch in diameter, with additional large spots under scabs. He is going in next week, so I am not going to even touch those areas. He already has more than he can handle as far as pain goes. Thankfully, despite how tender these spots are, they are not looking infected. But every day they are not healed leaves him open to that risk, so please continue to pray.

Aside from the pain he is in, the worst part of this is his anger at me. He frequently asks me to leave the room and says he does not like me, etc. There are times in the evening when he sorrowfully apologizes for his behavior and when he curls up with me and says, "Mom, I like you" which is beautiful, but more often than not I am the dreaded 2 headed monster who constantly chases him around with a soapy washcloth, medicine syringes and blood pressure cuffs. I am so grateful Jay does not have to do this all day, too, so that Fulton has a parent he feels more relaxed with.

I understand this is the way it has to be for now, but it still hurts a lot. My head knows this will get better and one day he might come to know what I try to do for him. But it is not about being appreciated. This is my cross and while I am trying to carry it well for Our Lord, it hurts to see that this love I have is somehow not being transferred to my son - that he is somehow not picking up on my love and is instead pushing me away.

But enough about me. :)
Thank you for your continued prayers - I look forward to reporting more good news in the future and not so much depressing stuff!

We Are Safe!

J.M.J.

Praise God, we have been spared the tragedy of a tornado once again.  Our tears and prayers pour forth for our fellow Oklahoma families who were struck by tonight's terrifying fury.

I do not dare question God's Holy Will.  I only pray that each soul that was called Home was in a state of grace and will one day enjoy the Heavenly abode Our Lord has won for them through His most Precious Blood.

 

Enter not into judgment with Thy servants, O Lord; for, save Thou grant them forgiveness of all their sins, no man shall be justified in Thy sight. Wherefore suffer not, we beseech Thee, the sentence Thou pronouncest in judgment upon the ones whom the faithful prayer of Christian people commends to Thee, to be a doom which shall crush them utterly. Rather succor them by Thy gracious favor, that they may escape Thine avenging justice who, in his lifetime, was signed with the seal of the holy Trinity. Who livest and reignest world without end.

R.: Amen.

St. Anthony, Where Are You?

J.M.J.

Rumor has it I write a blog.  Sorry for the long silence, but time has been short lately.  In fact I should be in bed right now, but I can't seem to find Fulton's mouth stretcher and I have finally decided to let St Anthony take over while I put some words on this blog before bed.

As I write this, I realize I have lost something else besides the mouth stretcher.  Actually, I have lost many things.  Time.  Grace.  Patience.  Sleep.  And a few marbles, too.  In fact, I have lost just about everything, except the 40 pounds that continue to stick with me through thick and...(well, hopefully those pounds won't stay with me through the 'thin'!)

I will be painfully honest with you: Ever since returning home, everything has been a fabulous source of sanctification for me.  And luckily for the rest of the family, I have been a great source of sanctification for all of them as well.  Bound together by love, loyalty, and the unavailability of extra vehicles to aid our escape, we are beginning to adjust to the new demands on my time and adapt to new personality traits that have emerged in Fulton.  And in myself.

I was always been a bit frazzled and forgetful, but since returning home I think I am beginning to lose my mind.  The house is a mess.  I spend far too much time looking for things.  And I have completely deleted far too many conversations I have had with people.  I couldn't even tell you how many times Jay has heard me say, "I am so sorry!  I completely forgot to...."

While the forgetfulness is certainly annoying, it is my newly perfected skills at misplacing things that is really a problem.  Fulton's care requires so many items, it would be hard for a Martha Stewart type person to keep track of it all, let alone me.  His blood pressure cuff, medical syringes, pressure garments, lotions and potions, etc is a lot of 'stuff' to handle on a daily basis, so it was off to the antique store for me! 

We came home with a lovely 3 shelf hutch with a cabinet underneath to put in our bedroom.  I could have settled for a cheap Walmart bookcase or something, but ugly and clutter make me crazy (although you'd never guess that based on how the house looks) so I spent the same amount on a real piece of furniture.  I still need to get a basket or two to hold the multitude of tiny but oh-so-important items in my medical collection, but overall I am quite pleased with the new addition.  I am still losing things on a regular basis though, and am considering making St Anthony my new favorite Saint, but overall there is a marked improvement.

It is still ugly and cluttered, but hopefully after a few more rustic looking baskets these shelves will be a little easier to look at first thing in the morning.  Meanwhile I will continue to try to Lord willing, this is just a phase of readjustment and I will eventually become a more helpful addition to the rest of the family.  But for the time being, we have all come to the understanding that Mommy is still Fulton's special helper.   I will NOT forget that!

I continue to strive to transform his care into acts of love, thanksgiving and reparation to Our Lord and offer up our sufferings to The One who has done so much for us.  I continue to see Our Lord Crucified in Fulton's little face and am learning to love on a whole new level.  And I am continuing to lose my sense of 'self', slowly but surely, and that is one thing I hope will stay lost forever!

For everything else that I continue to lose, it is good to know that I have St Anthony to back me up!

Saint Anthony, perfect imitator of Jesus, who received from God the special power of restoring lost things, grant that I may find (mention your petition) which has been lost. As least restore to me peace and tranquility of mind, the loss of which has afflicted me even more than my material loss.

To this favor I ask another of you: that I may always remain in possession of the true good that is God. Let me rather lose all things than lose God, my supreme good. Let me never suffer the loss of my greatest treasure, eternal life with God. Amen.

St Anthony, pray for me!

Sorrowful Mysteries for Holy Week

J.M.J.

I am taking these last few days of Lent to continue to examine my heart, to pray, and to love Christ Crucified.  I invite you to read the following articles I have written on the Sorrowful Mysteries.

Bless you all!

The Agony in the Garden for Contrition

The Agony in the Garden for Obedience

The Scouraging at the Pillar for a Spirit of Mortification

The Crowning With Thorns for Contempt of This World

The Carrying of the Cross for Patience

The Crucifixion

To Pray Always

J.M.J.

Somewhere along the way, even among the suffering within these walls where we temporarily live and on a larger scale, the suffering endured in the hospital, I have forgotten to pray.  How can this even be possible?  We are in the middle of Lent, both literally and spiritually, and yet I have started most of my days without any time on my knees at all.  Most evenings are also without much in the ways of recited prayer.  Why am I failing so miserably?

I wasn't always like this.  In the beginning, I was praying constantly.  I offered every breath Fulton breathed to Our Lord as a silent prayer of thanksgiving for saving my child.  Every flutter or pain in my own chest was offered in reparation for my own sins and used as a reminder of how greatly I needed a conversion of heart.  Hours of "Venerable Fulton Sheen, please heal my son" have been sent above, begging him to ask Our Lord to grant Fulton a miraculous heaing.  Every kiss and caress was not only for my son but for the Divine Face of God as well.  I had long, penitential and heartfelt conversations with Our Lady, St. Joseph, Ven. Fulton Sheen and of course My Lord Himself.  And I frequently wept out of sheer love of God.

But the last two weeks have been quite dry overall. 

My mother came to visit for about a week, and then my family came.  Perhaps it was the change of pace and change of routine that snapped me into an 'all business' mode.  I suddenly had other people around me and others to consider.  I had a house that seemed to get a lot messier in no time at all, a 21 month old baby to fret over, constant conversations, questions to answer and piles of laundry to wash.  I suddenly was worried about dishes being broken, spots on the upholstery, and rented towels with stains on them.  Food was sparse due to not being able to go shopping, so we left the house a lot to either go out to eat or run the errands I have not been able to do in a month or more.

And then there was the string of little excursions with everyone.  The aquarium, NASA, ferry boat rides, trips to the beach.  Absolutely, it was wonderful to be reunited with my family and to breathe fresh air.  It was good to get away for awhile with Fulton and do something 'normal' for once.  Yes, very good indeed.  But why was I so quickly able to set Our Lord aside? 

Perhaps it is because I have given up on a big miracle.  I have accepted the small steps forward as all He was going to do for us, and moved on.  Like St. Bernadette, I accepted that perhaps my role in all of this was to suffer as best I could, to prepare Fulton for his own road of suffering, and offer encouragement to others whenever I could.  Miracles, I decided, are for other people.  Whether we are unworthy of such a kiss from God, or because more grace would come to us through the daily suffering, I suppose it really does not matter.  Maybe it was a mix of both thoughts that changed my outlook.  I don't know.

I feel so ungrateful.  Even though there have been no miracles to amaze the doctors, the very fact that Fulton still lives is proof enough of God's love and that perhaps He wills something greater for my son.  And obviously I am comfortable with His decision.  But what rattles me is that despite all He had graced me with, all He had done for us, and all He still has in store for us, I behaved as one of the ungrateful lepers who was healed and disappeared.

Please Lord, please.  Do not let me wander so far from Your Cross again.  I return to you, contrite and humbled once again, but trusting You will not abandon me so long as my soul continues to long for You.  Strengthen my love I have for you in Your Holy Face, that I may once again at every moment offer my care and caresses I lovingly apply to my son's face to Your face as well.  Accept these physical acts as loving prayers to You, so that when my mind wanders or becomes forgetful, You will remember the tenderness of my touch.  Amen

"I firmly wish that my face reflecting the intimate pains
of my soul, the suffering and love of my heart, be more
honoured! Whoever gazes upon me already consoles me."
(Our Lord Jesus Christ to Sister Pierina)

St Patrick's Day

J.M.J.

And on the lighter side:  Happy St. Patrick’s Day!  Usually I tend to get a little giddy on this day, but this year I celebrate it with a sense of mourning.  Loss.  And a deep sense of grief.  For this is the first St. Patrick's Day I have ever had WITHOUT my precious green Hostess Sno-Ball.  (What does Walmart have against green Sno-balls, anyway??)   And so I leave you to review my musings of happier days in my childhood - days of grassy green smiles and coconut dreams:

When we were kids, my sisters and I could hardly wait for March. Not because spring was coming, mind you. Oh no. We were excited because we would get to eat Sno-balls! Those cream filled, coconut and marshmallow covered chocolate cake treats were cherished among my sisters and I. They were better than a pot of gold.

You see, growing up, I never got the kinds of lunches other kids got. While they brought peanut butter and jelly sandwiches on Wonder Bread, with bags of chips and Twinkies, we were stuck with liverwurst sandwiches on whole wheat with a hard-boiled egg and carrot. We longed for the treats other kids ate and would sometimes lament out loud our culinary woes. My mother would listen with a sympathetic ear, and sometimes she would bake wheat berry cookies, but overall, there was no reason for morale to improve.

Don’t misunderstand me. My mother loved us, and she did the best she could on the income we had. Every bite of food was packed full of vitamins, fiber and minerals. We simply ate to live – we certainly did not live to eat. And that was why St. Patrick’s Day was so special. Because on St. Patrick’s Day, we got to eat Sno-balls!

If there is nothing else my mother taught us as children, she made sure we knew that we had Irish blood in us. She taught us her version of the Irish jig. We actually loved corned beef and cabbage (OK, not technically a traditional Irish feast, but hey - there's cabbage and potatoes). And we learned to never, NEVER call anyone super! (Actually, the word was ‘souper’, but to a child they sounded the same, so super was not in our vocabulary.) We knew the real story behind the potato famine by the time we were in first grade.

And did I mention that we got to eat Sno-balls on St. Patrick’s Day?

On the morning of St. Patty’s Day, the Sno-ball effect would begin. 

We prepared for school like an Olympic athlete prepares for competition.
Get dressed in an all green outfit, braid hair with green ribbons, and straighten ‘Kiss Me I’m Irish’ pin.
March downstairs and eat green oatmeal and drink green milk, all the while focusing on the green-gold prize: the Sno-ball.
Wait for Dad to play Irish Night at the Pops and dance the Irish jig for Mother.
Polite, Vaseline teeth smiles, arms motionless at our sides as our feet flew wildly to and fro to music only a leprechaun should dance to.

Sno-balls.

Sno-balls.

Sweat pouring off our brow, green ribbons flying.

Sno-balls.

Sno-balls.

At last, the school bus would come and we flew out the door, never looking back, always looking forward. 

Looking forward. 

To lunch.

We soon found that other kids in our classes looked forward to our St. Patrick’s Day lunch as well. During the rest of the year, they usually glanced at out lunches and rolled their eyes or snorted as they scooted a few scoots away (liverwurst, eggs and milk do not make for the best breath, after all). But, on St. Patty’s Day, they would actually crowd around us to gaze at our green feast. A can of Green River soda, a green apple, a few slices of green pepper and celery sticks with peanut butter. And then, there it was – a very special, just for St. Patrick’s Day glistening green Sno-ball.

As I ate this lunch, the kids would ask why my family was so weird on St. Patrick’s Day. I would then begin to happily babble, between bites of cake and coconut, about St. Patrick, how one day I would live in Ireland, and about the plight of the Catholics during the potato famine.

“Famine? What’s a famine?” an older boy once asked as I licked the last of the green coconut flakes from my fingers.

Satiated, I sighed and turned to the poor, uneducated child before me. “A famine is when there is nothing good to eat for anyone. Sometimes people get so desperate that they eat strange things, just to stay alive. In Ireland, they had nothing good to eat and many people died of a disease called green mouth because all they could eat was grass.”

Looking closely at my green coconut speckled mouth and the careless remains of my lunch on the table, he snorted, “Yeah. I’ve seen that before.” And he wandered off to recess.

We laugh at the stories now, but I can also appreciate their underlying theme. We were taught about our Irish heritage in a way that made my sisters and I fiercely proud of who we are. Our passion for our history was stronger than our worries of what others thought of us, and this same passion allowed us, one day a year, to boldly bring our Catholic faith to others around us. I pray that I am able to pass along this same passion for our faith to my children as well.

Your assignment: Celebrate St. Patrick’s Day!

 
Learn the Irish jig and eat green pizza. 

Tape a shamrock on every part of your child that is mentioned in St. Patrick’s Prayer. 

Discuss the Trinity. 

One year we had a Conversion Hunt: I hid 200 popsicle sticks in our yard and 12 kids hunted for them like Easer eggs. Each stick was a person they found and “converted”, just as St. Patrick did.   

**There was an added urgency to finding all the people to convert, as Dad was going to mow the lawn later that day...

Celebrate this day while instilling in your children a strong connection to and pride for their Catholic heritage – no matter what nationality they may be!

And remember to get excited about your faith yourself. Enthusiasm, after all, has a “snowball” effect on everyone!