Sunday, May 26, 2013

Thank You!


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!

Thursday, May 23, 2013

Some Days Are Harder Than Others


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!

Monday, May 20, 2013

We Are Safe!


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.

Saturday, May 18, 2013

St. Anthony, Where Are You?


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!