P.J.’s Journey: The Next Chapter

“You’re such a positive person,” they say. “You’re always smiling,” they say. “You’re an inspiration,” they say. Today is one of those days that I don’t feel very positive. I am not smiling and I certainly do not feel like an inspiration to anyone. I am a grieving mother and the feelings associated with this new title are so much harder than I ever imagined they could be. I thought I was prepared for this. After all, P.J. had so many close calls. Over the last few years, we saw him going downhill rapidly and we were helpless to change his course. We prepared for the worst… or so we thought. Nothing… absolutely nothing… could have prepared us for this horrible loss. On September 19, 2018, while A.J. was in the hospital fighting a battle of his own following surgery for kidney cancer, we received the call that P.J. was gone. We were devastated at first and then relieved that his struggle (and our constant worry) was over. Relief was followed by guilt and guilt was followed by deep sadness… and all these feelings were experienced within the first 24 hours. The cycle has repeated itself regularly over the past 4-1/2 months.

P.J. was such a mess his last few years on earth, that it was a constant source of heartache for us — a type of dread that consumed us. When something was wrong, he called A.J., and those calls came so often I began cringing at my husband’s ringtone. I would hold my breath until I knew it either wasn’t P.J. or if it was, he wasn’t calling because of some new crisis. A.J. tried to shield me by not telling me the bad things, but I could sense when things were not good. I cried whenever I saw P.J. because he was so thin and so beaten down by the world and everything he’d experienced. When I looked at his scars, I imagined that they cut all the way into his soul and all I could do was weep for him. But he didn’t even want to discuss the possibility of getting help. He was more afraid to fix things than he was to face death.

Before P.J. died, I knew people (some very close to me) who had lost children. I tried to understand what they must be feeling, but couldn’t even begin to imagine it. I can now say without a doubt that until you experience it yourself, you will never understand this type of grief. I would assume, too, that it is different for every grieving parent, depending upon the circumstances surrounding their loss. I don’t let my grief paralyze me… I can’t. Life, after all, goes on. I continue to forge ahead and I don’t dwell in the sadness, but it seems like it’s always there… right below the surface. Sometimes I am able to push it way down inside and can do some pretty daunting things… like speak at P.J.’s memorial service without showing my vulnerability (click here to watch the video). Other times, I will dissolve into tears because of something completely unrelated… something as insignificant as a paper cut or an encounter with a rude cashier.

In the first few weeks following that devastating call, I searched desperately for answers to my grief. I read countless articles and blogs hoping to find someone who had experienced the same types of feelings I was having in the same way I was having them. I needed to know I wasn’t abnormal and that I wasn’t losing my mind. I wanted an explanation of what was happening and I wanted to know how long I could expect it to continue. At one point, I came across an article that talked about how grief comes in different forms and that often times, we grieve the intangible losses as much as we grieve the loss of our loved one. I grieve the loss of the P.J. I knew 14 years before his death… before his struggle with addiction… before the fire… but most of all, I grieve the loss of hope that someday he would find his joy again and we would find our boy again. I grieve never being able to see him hold his own baby the way he held his niece for the first time and lovingly smiled down at her. I grieve never being able to see him rough house with his own children the way he did with his nephews when he visited them in Austin. I grieve that I will never be able to hold him tight in a hug while secretly praying for him… well, not so secretly, really… he was on to me with that but let me do it anyway sometimes. The loss of hope for the future is a devastating one. I grieve that loss deeply and sometimes it feels as if I will never recover from it. But I know there is hope in the Lord.  Romans 5:2-5 reads “Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” (Yes! The book of Romans has always been my favorite and a great place to seek comfort on a day such as today!)

P.J.’s journey has taken him to a place where there is no suffering and there is no shame.  My hope of someday seeing him whole again is not gone… it has been realized.  We can’t hope for what we already know exists!  My hope of someday seeing him with his own children has been replaced with the realization that he is now loving on the children from our family who went before him and were waiting at the pearly gates to meet him.  P.J.’s journey has taken us to a place where we rejoice in the hope of the glory of God and his journey will continue as we share his story with others who can benefit from our experience.  The journey is not over… it’s simply the next chapter.

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P.J.’s Journey: Good Dads Versus Great Dads

My emotions overwhelm me tonight as I write this post.  I am watching my husband go through one of the most difficult experiences a person faces, the loss of his mother, yet I see him continuing to care for his family and offer the same service he has continued to provide throughout P.J.’s journey (See P.J.’s Journey:  My Copilot).

To say A.J. is a good dad is like saying Mother Teresa was a nice lady.  A good father takes his kids out for pizza and tucks them in at night.  A great father, one like A.J., gets up three or four times in the middle of the night to cook for his son because he knows that weight gain is critical to wound care and it’s important to feed him when he’s hungry.  A good father helps his kids get dressed and encourages them to work hard at school.  A great father, one like A.J., changes sheets and pillowcases regularly because he knows infections can be deadly, and encourages his son to struggle through physical therapy, no matter how painful, because the end result will be worth it.  A good father pushes his child on a swing and holds his hand while he climbs stairs.  A great father, like A.J., pushes his son in his wheelchair and holds his hand while he is going through torturous treatments.

With my father and father-in-law both having gone home to be with the Lord, for the past few years, Father’s Day has been about helping my children to appreciate their dad.   I don’t know if they will ever be able to fully appreciate all he has done for them, but I can truly say that I do.

A.J., you are an amazing father… never doubt that for a moment.  I love you with all my heart.  Happy Father’s Day.

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P.J.’s Journey: An Anniversary to Celebrate

This past Friday, January 11th, marked one year since P.J.’s accident.  In some ways, that seems so long ago, and in others, it seems like just yesterday.  I am one who encourages others to forget anniversary dates unless they are of fond occasions, such as an engagement, wedding, lottery win (smile) or other happy moment.  I think remembering the date someone we loved died is pointless… what’s more important is remembering the date they were born, the date they were baptizied, the date they graduated from high school, etc.  Too often we dwell on the negative things that happen to us.  But because we wanted to continuously show P.J. how far he had come in “x” number of days, we kept looking at the calendar and counting back.  We had a positive purpose in mind, and I’m glad we did it, but the negative side of it all is that it made that date stick in our minds, and my friends, that is a date that I have often wanted to forget.

With the passing of one year, I was contacted by my Human Resources Department at work a few weeks ago and questioned about P.J.’s status.  The representative encouraged me to complete a request for an extension on my Family Medical Leave Act (FMLA) coverage.  For those of you who are not familiar with that, larger companies are mandated to offer this type of protection to employees who are themselves ill or injured or have an immediate family member who needs long term care.  It allowed me to take off, without question or concern, up to twelve weeks (non-consecutively) during the past year while P.J. has been recovering.  When HR first contacted me, it forced me to dig through some of the original emails I’d sent in the hours/days just after the fire.  This was not a pleasant experience.  I found myself in tears as I was glancing over some of them.  It was a flashback of where I had been emotionally at that time, and that was not a good place to be.

I had a similar experience when I tried to write thank you cards after my dad’s funeral.  I offered to do this for my mom and family, and I very much regret that it never got done.  Every time I started writing, I found myself crying all over the cards and missing my dad more than ever.  I finally gave up.  So, if you’re one of the people who was owed a thank you card back then, my apologies and my belated thanks for your care and concern for our family.

My point is, that bringing yourself back to a place or a date that reminds you of a negative event is not a good thing, and you should do everything you can to avoid that!  It’s like the guy who said to the doctor “It hurts when I do this.”  The doctor’s reply?  “Then don’t do that!”  LOL.  All too often, a young girl has a tendency to cry herself to sleep listening to the song that reminds her of the boy who just broke her heart.  (Yes, I speak from experience!)  I say “DON’T!!!”  If it hurts when you do that, then don’t do that!

So what was my point?  Oh yeah… What I was trying to say is that with P.J., we were purposely remembering the date of his accident so we could point out to him his progress.  That turned out to be a very positive thing, because we have been able to show him pictures and videos of all of the early days and then intermittent ones thereafter.  Whenever he says “I’m not healing,” we have evidence to say “Oh yes you are!!”  Before and after pictures of his wounds show incredible progress.  We used the pictures of his face (which healed the best and fastest for several reasons) to comfort many family members of other victims who’d come to the burn unit.  Everyone who entered and left Baton Rouge General’s Burn Unit from January to September 2012 knew P.J.’s story and became a friend and supporter and we did our best to encourage and support them in return.  But while remembering the date was a good thing in a way, I did find myself becoming a bit emtional at times on Friday, and having my own little pity party about what a rough year it has been… not even counting the other difficulties we faced.

I’ve decided, however, that January 11, 2012 will be a date that we will celebrate and remember forever as a good one.  It is the date that God spared our child from what should have been a fatal accident.  It was the first day of a journey that has brought out the good in all of us as we’ve supported one another through the tough times, a journey that has made us closer to each other, and a journey that has given us such a workout that we are stronger than we could ever imagine.

P.J. is doing very well.  He is getting stronger every day and his wounds are progressing.  We are hoping that he will only need one additional surgery in the near term.  As we continue with P.J.’s Journey, I look forward to some new dates for celebration, like the day he walks with no assistance, the day of his wedding, and the day his first child is born.  As always, we thank you for the prayers that have kept us going and have helped to make each day a better one!

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With sincerest gratitude…

Our dear family members and friends (new and old), what a year this has been for the Guillot family!  As I was recovering from my October 2011 ankle surgery in early January, I remember saying to my physical therapist, “I can’t wait for life to get back to normal!”  I quickly learned that those days of swelling and pain were minor inconveniences compared to what was in store for us.  If you are reading this, I am sure you are aware of the circumstances that followed…  The fire that almost took P.J.’s life in January and the flooding of our family home by Hurricane Isaac in August.  Although we all often wish that we could turn back time and change the outcome of both those events, we can’t help but be thankful to God for His glory that has shone through in both tragedies. 

This letter is to thank you all for the love and support that you have shown us already and continue to pour on us each day.  During the first few weeks after P.J.’s accident, we were told to be prepared for the worst.  Your prayers and ours were heard and God woke him from his sleep and brought him back to us.  His days continue to include pain and suffering that most of us could never comprehend, but he is alive and fighting the battle courageously.  We thank you all for the prayers, calls, emails, Facebook posts, contributions to P.J.’s video, “Get Well” cards, and the hundreds of cards, letters, and gifts he received on his 20th birthday.  Your thoughtfulness has truly made a difference in our child’s life. 

After Isaac destroyed our home, we were reminded once again of the great support network that we have in all of you.  I do believe we have more clothes, sheets, and towels than we had before the storm!  Our rental home is filled with furniture and household items and appliances from countless sources.  I tell everyone that it has the value of Joseph’s coat of many colors.  As my mother always says, “We couldn’t have more or want less.” 

The friends and volunteers (from four different organizations so far) who have come to help with the emptying, cleaning, and gutting of our home, have shown us what selfless giving is all about.  We are inspired by their sacrifices and hope to “pay it forward” someday. 

Many of you have shared our story with your friends who have shared it with their friends and so on… (just like the hair commercial)!  We need your help now in sharing our thanks with these individuals, who in some cases remain anonymous to us.  We apologize that we were not able to send individual thank you cards to each one of you, but we ask your help in passing this message along to everyone.  Please feel free to email it, share it on Facebook, or photocopy and distribute it.  There is no way to adequately portray what we feel.

This is just a small attempt to let everyone know the enormous depth of our gratitude.  We are humbled, overwhelmed, and forever thankful for the generous gifts of all kinds that have been provided.  May God bless each of you twenty fold.  We love you.  We truly do.

Tina Guillot
(On behalf of A.J., Tina, P.J., Joshua, and Molly the Schnauzer)

P.J.’s Journey: Glimpses of Past, Present, and Future

I rarely have time for TV these days, but the other night, I caught part of the movie “Ghosts of Girlfriends Past” starring Matthew McConaughey and Jennifer Garner.  In this movie, just like in all of the versions of “A Christmas Carol,” the main character gets to see glimpses of past, present, and future.  Sometimes, these are scenes that the person was not actually a part of, so it answers questions for them about why things turned out the way they did and gives them insight into how their actions affect other people.

Today P.J. was readmitted to the hospital.  Over the past few weeks, we have watched him make a rapid decline, and have been powerless to help him.  I was so sad last night because I knew what today might bring.  At the same time, I was so tired… tired from the physical strain of busy schedules, numerous appointments, nights with interrupted sleep and from the emotional strain of being a parent not able to help my child, and the guilt of feeling like surely we must not be doing something right.

Sometimes I wonder if I had the opportunity to glimpse past, present, or future, what would I see and how would it make me feel?  Would I have some anwers about what things had happened to take us to where we are today?  Would it matter?  Would it change anything?

In the movies, Scrooge and Connor Mead (McConaughey’s character) both change into better people overnight.  McConaughey converts from a womanizing dog who believes that “love is magic comfort food for the weak and uneducated” to declaring his love for Jenny (Garner’s character) and coming to a new realization:  “Someone once told me that the power in all relationships lies with whoever cares less, and he was right. But power isn’t happiness, and I think that maybe happiness comes from caring more about people rather than less.”  Can I get an “Amen?”

Who else can you care for more than your children?  So where is the happiness in that caring when you can’t give them what they need?  You can’t make them eat when they are starving themselves to death, you can’t make them heal when their bodies are just worn out.  What a frustrating situation for a control freak like me to have no control.

As synical as the above may sound, I really do think that happiness comes more from caring more about people than less.  What would that glimpse into the future tell me about P.J.’s journey?  Would happiness come from that?  I have to trust in God that it would and believe Him for a miracle for my boy.  Prayers are always appreciated as we continue to fight this battle with P.J.  May God bless us, everyone!

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P.J.’s Journey: The Touching Story

I was recently at a Toastmasters meeting where one of the speakers presented an advanced project called “The Touching Story.”   The objective of the speech was to tell a story that would move the audience in some way.  He very much accomplished that objective and had me crying before the timer hit the 5 minute mark.   Afterward, I was thinking how P.J.’s journey will someday make for a very touching story, but it’s too fresh right now… too hard to talk about in front of a large audience.  Now there are two meanings of the word “touching,” though.   It could refer to something that elicits strong feelings or emotions from someone, or it could refer to the physical act of putting your hands on someone.

For five months, we were not really able to touch P.J., at least not without gloves on, and then we had to be very gentle, of course.  It’s just been the last week or so that we’ve not been restricted to the gloves, but they’re still “recommended.”  Think about that for a minute…. that means no hugs, no kisses, no touching at all.  It’s sort of ironic in a way, because many people believe that human touch has great healing power.  Lack of touch can actually lead to “Failure to Thrive,” a potentially fatal syndrome, in newborns.

When I was emailing back and forth with a friend the other day, she closed with “Hug P.J. for me!”  I wrote back and said, “Well, hugs aren’t possible at the moment, but I’ll bank one for you.  After all, when I get word from him that he’s strong enough to handle it, I’m going to hug the lights out of him!”   Okay, not really.  But I can’t wait to make up for lost time with P.J.  I am sure I’ll have to stand in line behind his girlfriend, but that is okay.  I can wait my turn.  Besides, in the words of the iconic resident of the Hundred Acre Wood, Winnie the Pooh, “There’s no such thing as too much hug.”

At some point down the road, I look forward to telling the touching story of P.J.’s full recovery, but for now, I’ll continue blogging when I am able.  I thank you for your comments on my posts, your prayers, and your support as we continue on P.J.’s journey.

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P.J.’s Journey: Some Presence for P.J.

For our 25th wedding anniversary celebration in 2008, my husband and I included a note on the invitation that read “Your presence is the only gift we desire.”  We didn’t want “stuff.”  We wanted our friends to just enjoy the party and spend time with us.  We wanted their presence… not their presents.  Ever since he was very little, P.J. has loved the gift of our presence.  He’s never, ever been a loner.  If he’s watching a movie, he wants someone to watch it with him.  If he’s going for a walk or a run, he wants someone to tag along.  He doesn’t like being alone.

This journey has been a big challenge for him as he not only struggles to deal with the pain and suffering, but the time he has to spend alone.  Now that he’s back in the burn unit, we don’t have the freedom to stay in the room with him twenty-four hours a day, seven days a week as we did when he was in the therapy ward or for the short time when he came home for those ten days last month.  He is handling it well, but he anxiously awaits our arrival and becomes nervous when we don’t get there right at the start of visiting hours.  It’s not that he wants to talk to us or wants us to talk to him.  In fact, he often sleeps the majority of the time we are here.  But the point is, we are here.  We are sitting in the room with him, available if he needs us for anything from talking to wiping his nose.  Just knowing we are here is a great comfort to him.

In those rare moments when we wonder if our presence is really of any value, we remind ourselves of the extent of his condition, not only physically, but emotionally as well.  It is then that we regret the times when we aren’t able to be here with him, and we are thankful that in those moments, P.J. has the greatest gift of all — the presence of his Heavenly Father.   Just knowing He is with our boy is a great comfort to us.

Tomorrow is June 11th.  Five months have passed since that dreadful night when we were awakened by the delivery of horrifying news that our lives would never be the same.  But every day, regardless of whether we take a step forward or a step back, we are one day closer to P.J.’s full recovery, and every day, is one day that we are blessed with the gift of P.J.’s presence.

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P.J.’s Journey: The Essentials

All along, in addition to dealing with the issue of P.J.’s survival and recovery, we’ve struggled with some other things affiliated with the accident, like the negative things that were reported in the news.  I remember Day 2 when we learned of  how the media were reporting the specifics of the accident.  I cried more hysterically at the point than I had the day before when I’d learned the extent of P.J.’s injuries.  It wasn’t that I was more worried about “what people thought” than I was my own child.  It was that I felt horrible that my baby was lying in a hospital bed with life-threatening injuries and people were talking about him in a bad way.  The negative reports, for the most part, have been cleared up.  Witnesses have come forward to correct false statements that were made and we’re hoping that’s all behind us.  Unfortunately, the newspapers don’t go back and print a follow-up saying “By the way, that statement was later corrected,” or “There was a misunderstanding.”  It surprises me, however, every time I talk to someone who shares another version of the rumors that were being spread, most of which do not even slightly resemble the truth or the news reports in any way.  I think to myself, “Where do people come up with this stuff?!?!?!”  I get angry and upset and I want to publish a website devoted solely to defending my boy’s honor and integrity.  And then I realize… it’s not essential.

What is essential is that the people who know and love P.J. know his heart and they know what a great kid he is deep down.  They’ve seen his struggles not just over the past 4-1/2 months but over the past 7 years and have prayed for him every step of the way.  They’ve refrained from judging and they’ve admitted their own mistakes in an effort to let P.J. know that we all need help once in a while.

P.J. came home from the hospital on May 10th and eleven days later (this past Monday), he was readmitted with a staph infection.   We’re thanking God that his body is already responding to the antibiotics.  That’s essential.  Prayers are being answered.  That’s essential.  P.J. has survived a tragedy that would have killed most people.  That’s essential.

A.J. and I were told early on that this would be a long journey, but I guess we thought the exhaustion and the stress would’ve been gone by now and things would have settled down for us, but they haven’t.  It is still very hard.  But we are so thankful to our Father in heaven for providing much needed joy and strength at the times we need it most.  It’s amazing how we continue to see God’s plan unfolding in P.J.’s life and in all our lives.  God is constant and faithful.  His mercy endures forever.  That’s essential.

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P.J.’s Journey: Incommunicado!

In 28 years of marriage, the only time my wonderful husband, A.J., and I ever had any problems was when we stopped communicating.  We were fortunate that we realized the problem and corrected it eventually, and we’ve managed to have many more happy years together.  The days since early February when we “separated” and I returned to work and life at home leaving A.J. at the hospital with P.J. have been really testing our ability to keep the communication lines open.  One of the hardest things about coming home for me (besides leaving P.J.) was knowing I would not have access to the doctors, nurses, technicians, etc., like I had while I was there at the hospital.  I begged A.J. to call me and put me on speaker phone whenever he talked to anyone important about things, but it’s not always convenient for everyone involved as you can imagine.

When P.J. was still in intensive care, it was easy for A.J. to steal opportunities to call me because he could only see P.J. for twenty minutes every four hours and he spent the rest of the time in the waiting room, but once he got moved to a regular room in the burn unit, visiting hours extended from noon to 8:00 p.m.  So then we talked only in the early morning and late evening.  Now, A.J.’s staying in the room with P.J. 24/7 and so there’s no convenient time for him to call me.  While P.J. is awake, A.J. gives him his full attention.  While he’s sleeping, A.J. doesn’t like to call because his talking on the phone might wake P.J. up.  Leaving the room is an option, but there’s not really a place to go to just sit and use the phone.  As a result, my technology-challened husband has become quite savvy at texting and instant messaging on Facebook.  Unfortunately, things get lost in the translation sometimes, so I’m having to learn to live with the fact that I don’t always know what’s going on.  I’m thankful for the weekends when I can get the scoop on everything (that A.J. remembers to tell me… unfortunately, he is stressed and exhausted and doesn’t always remember everything… I think I will bring him a notebook next time so he can start writing things down).

Communication is not just important in family settings.  The recent move for P.J. from the burn unit to the occupational therapy ward has been quite a challenge to say the least.  We’ve had to rely upon the nurses and doctors in both units to communicate about where he has been with his journey and where he’s going and what works and what doesn’t.  Poor A.J. gets caught in the middle and has to constantly correct their assumptions and insist that they talk to each other.  While there are many things this hospital has done well and that have made us happy P.J. is there, this issue with communication has been a real challenge, and we plan to follow up about everything that has happened with the Patient Care Quality Management Department.

If you’re as old as dirt like me, you may remember the Jimmy Buffet song, “Incommunicado.”  The chorus goes:

But now I’m incommunicado
Drivin’ by myself down the road with a hole in it
Songs with no vibrato
Takin’ the long way home

Yeah, I know what you’re thinking.  Most of Jimmy Buffet’s songs confused me, too, and trust me, it wasn’t because I was listening to them while eating brownies with “special” ingredients.  I may have been a teenager in the 70s, but I was a good girl.  ; )  I was thinking about this one today, though.  I feel just like this… incommunicado… and P.J.’s takin’ the long way home.  BUT, the good news is that at least we know he’s coming home.  His target release date is May 14th.  It’s not written in stone, but we’re certainly trusting it’s a good date and looking forward to our family being together again as we continue P.J.’s journey!  We’ll keep you posted.

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P.J.’s Journey: Seeing is Understanding!

When this all started, we began keeping a diary of sorts for P.J., documenting with video and pictures the progress that he was making.  To maintain his privacy, we have not posted any of those pictures or shown them to anyone other than a few family members and close friends.  I know it’s probably difficult to imagine what someone who has been burned to the extent that P.J. has must have looked like on Day 1 as compared to today… Day 79.  Our impression of his healing has changed from day to day.  It’s hard to explain, but on Day 5, he looked much worse to us than he had looked on Day 1 because his face was beginning to scab and peal.  Of course for the first month or so, we were only seeing his face because everything else was wrapped up.  For that  matter, anyone who would walk into P.J.’s room today and see only his face (when he is covered), would think he looks fairly normal with a only a few minor abrasions.  But for us, since we have been with him when he is completely unwrapped, we know the seriousness, the magnitude, of his injuries.  He shared with me the other day that when the technicians were removing the staples from the skin grafts on his chest, he counted over 100 of them… just on his chest!

This time of year always reminds me of the movie, the Passion of the Christ.  I grew up knowing the story of Christ’s death and resurrection, and so I was surprised at the overwhelming emotions that surfaced when I viewed the movie with a group of friends from our church.  I was sobbing so hard that I almost threw up.  A few people walked out because they couldn’t handle the graphic nature of the scenes.  Seeing it (or a reenactment as it were) of the whole ordeal that our Savior suffered, brought a new understanding to what we’d already known.

For us (especially A.J. who is at the hospital all day every day) we see the agony in P.J.’s eyes, the rawness of his flesh, and the anxious anticipation of painful treatments. We see our 19 year old son weighing less now than he did when he was 12 years old.  We see it all and therefore have a different perspective, a greater grasp, of just what P.J. is experiencing.  I love my friends and I appreciate all of the support and encouragement that they have shared, but (yes, there’s a “but”) sometimes their comments like “You have to stay positive” and “Keep the faith, Tina!” tend to unnerve me.  Don’t misunderstand me, please.  I don’t get upset with the people who say these things.  Quite honestly, they are probably the same expressions I would use to encourage someone in my situation.  It’s just that the words bother me because I believe my faith is very strong.  But isn’t it true that even Jesus, as perfect as He was, asked “My God, my God, why have You forsaken me?”   The fact of the matter is that I will NEVER be able to express to you what this whole situation is like, and until I experienced it, I would have never imagined it.  Faith or no faith, if I don’t talk about how I feel, I will probably end up jumping out the window of my cubicle on the sixteenth floor of Lakeway II!  I don’t know what it is like to lose a child and I don’t want to ever find out, but I do know what it is like to see my child in agony and not be able to do a thing about it, and it’s not just occasionally or periodically… it’s CONSTANTLY.  I am so proud of him for fighting for his life.  I often look at him and think that if that were me… if I were in that bed dealing with the things he is dealing with… I would just give up and beg God to take me home.

Seeing P.J.’s injuries firsthand helps me to understand what he is going through, but (yes, there’s a “but”) seeing the PROGRESS he has made firsthand helps me to understand the kind of healing that he will receive when this is all said and done.  I look forward to sharing those miracles with you as we continue on with P.J.’s journey.

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P.J.’s Journey: The Joshua Factor

I remember back when A.J. and I were debating on adopting another child and some friends told us “Two are not much more work than one.”  I still don’t get that.  I think what they must have meant is that if you’ve got a routine down for one you can keep the other on the same schedule and do for two what you normally do for one.  Maybe that is somewhat true for twins or children who are very close in age, but when your kids are like ours, almost seven years apart, it’s a whole different ballgame.  Two kids equal twice the work, twice the cost, and okay… twice as much to love.   Our boys are as different as night and day.  From a very young age, P.J. always wanted company… someone to play ball with, someone to watch a movie with, someone to work out with.  Joshua has always entertained himself reading, drawing, playing video games.  There are definitely similarities… for example, both boys have always needed help with homework, but that’s a boy thing, right?  😉  They also both have a freckle behind their left ear.  When we discovered this, P.J. was about 7 or 8 at the time and I was able to convince him that was God’s way of stamping (or branding) them to get into the right family.

Lots of people have asked us how Josh is doing with all of this that has happened to P.J.  The answer is that he is doing amazingly well… handling it better than most twelve year olds would.  Of course, Josh would tell you that is because he is going to be 13 in July and will get his own email address and FaceBook account at that time (that’s what he thinks… haha).   This accident has had a huge impact on our entire family, especially Josh.  With the situation as it is now and P.J. being hospitalized over two hours away, it’s been tough for us to give both boys our undivided attention, so Josh has had to grow up a lot over these past 10-1/2 weeks.

Both our boys have strong biblical names:  Philip James and Joshua Michael.  I explained the meaning behind P.J.’s name in the first entry I wrote about his accident (see P.J.’s Journey:  The Early Days).  The name “Joshua” is from the Hebrew “Yehoshu’a” meaning “YAHWEH is salvation.”  The name “Jesus” actually comes from a Greek translation of the Aramaic short form.   The name “Michael” is from the Hebrew name “Mikha’el” meaning “who is like God.”  Joshua loves P.J. with all his heart and he hurts for him, but he has the kind of faith that we should all have… he just knows God is going to take care of everything and P.J. will be home again soon.  I can’t explain it, but he has never doubted or questioned the power and love of God.  He has such a simple (child-like as it may be) trust.  P.J. used to get a kick out of telling everyone that he named Josh.  Yes, it’s true… we actually let our six year old (with some guidance and limitations) pick out a name for his new baby brother.  But I think you’ll agree his decision was guided by God, and I think it is no coincidence that Josh has so much confidence in P.J.’s future health.

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P.J.’s Journey: A Movie for P.J.

Greetings all… This isn’t a typical blog post.  I just wanted to share with you this video that we made for P.J.!   Thank you to all who helped by sending clips and special thanks to Gabrielle Danos for contributing the ending clip.  Enjoy!

 


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P.J.’s Journey: TMI!

Joshua, our youngest, is a fan of chat/text lingo.  He often tries to stump me with acronyms.  He says things to me like “BRB, Mom!” and “TTYL!”  For those of you who are text lingo challenged, BRB stands for “be right back” and TTYL is “talk to you later.”  I laughed so hard one night when he was quizzing me to see if I was up-to-speed on all the acronyms and he asked “Do you know what TTFN is?”  “Tata for now!” I proudly responded.  “What about GGP?” he asked next.  “Gotta go potty… duh!”  (I flashed him my “you’re not going to stump me” smile!)  Then he said, “Okay… so you know what OTPNTP, means?”  Uh oh… he had me.  What the heck did that mean?!?!  NTP… Notice to Proceed?  Hmmm… I finally conceded and he said “Mom!  It means ‘on the potty, need toilet paper!'”  Well, of course it does!  Why didn’t I think of that?  I always text that to A.J. when I’m in the bathroom and out of TP.  Crazy kid!!

One of the first of those types of acronyms that I learned is TMI (too much information).  So when my friends start telling me about their love lives and they cross the line, I might say “TMI!” or when a family member shares details about a gastrointestinal disorder, I definitely hit him with “TMI!!  TMI!!”

Do you remember the days before the world wide web?  OMG (oh my gosh), I can’t imagine what we did without this form of modern technology.  Some believe it has been our downfall, but IMHO (in my humble opinion), I think it has provided all of us, especially when it comes to information about modern medicine, a second, third, fourth, etc., opinion!

Some doctors don’t appreciate my need to look things up and I understand that.  Although, Dr. Dhaval Adhvaryu, P.J.’s surgeon, got a kick out of it when I told him I’d “Googled” him.  So he obviously likes being “Googled.”  He said that he appreciated and understood that I wanted to know who was cutting on my son.  When I had my Glaucoma surgery in 2010, the information I read on the internet ahead of time scared me a little and the surgery itself turned out to be a piece of cake, and I was sorry I had looked it up.  So when I had my ankle surgery this past year, I deliberately avoided reading about it… until… after two weeks when I was in a lot of pain and was very frustrated.  Ugh… it was not a good thing.  I found the blog of a lady who’d had the same surgery and saw pictures and everything.  There I was, in pain, lying in bed with the computer in my lap, balling like anything.  I called A.J. on his cell and wailed “This is just awful!  I am going to be in pain like this for three more months!”  And that was pretty darned accurate!  Now, seeing everything P.J. has been through in the last 6-1/2 weeks, I feel like such a ninny for the way I acted.

The days following P.J.’s accident, we avoided reading about burn treatments on the internet.  We thought it would be TMI and we wouldn’t be able to handle it.  Gradually, we’ve learned so much from talking to the nurses and doctors, and we have read supporting information on the internet that has helped us to understand better what they’ve already shared.  I’ll never forget that on the day Dr. Reza Sheybani, the Pulmonary Specialist, told us P.J. had pneumonia (only a day after we learned that he was in a coma), A.J. immediately looked it up on the internet trying to find the chance for someone who is in a coma surviving pneumonia.  He didn’t like what he read, especially considering all of the other things P.J. was dealing with at the moment.  But the internet would also tell you that the way to calculate a person’s chance of survival who has been burned to the extent P.J. was, is to add their age (19 in this case) to the percentage of body burned (70%), subtract from 100%, and you have their chance of survival.  Now, you don’t have to be a Mu Alpha Theta to figure out that what that meant was that the odds were not in P.J.’s favor at all.  But what you won’t always get from reading the TMI on the internet, is that new medicines, technology, and processes are developed and invented every day that can increase those odds.  You might also not get that the power of prayer, and a person’s strength and attitude play a big role in their recovery.

Our boy is strong; he is special; and he is kicking butt in the burn unit.  TMI or no TMI, it doesn’t matter.  He is AAK (alive and kicking) and that is just FWM (fine with me).  As always, we TYVM (thank you very much) for your prayers, notes of encouragement, cards, blood donations, etc.  We would not be able to do this without all of your support.  TAFN (That’s all for now)!

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P.J.’s Journey: The “H” Words

From the time P.J. was six months old until he was nearly two, he had one ear infection after another.    It was excruciating for A.J. and I to watch him suffer through these things, one after another.  We felt so helpless.  After almost 18 months, we were referred to an ear, nose, and throat doctor to determine whether or not he needed tubes inserted.  Instead of scheduling P.J. for that surgery, though, he immediately contacted our dermatologist who had diagnosed P.J. a year earlier with a nevus sebaceous on his scalp (he had been born with this condition).  Since sebaceous nevi can give rise to sebaceous carcinoma (malignancy), and the ENT did not like the appearance of it at that time, the attention quickly shifted from his ears to his head.  Surgery to remove the nevus sebaceous was scheduled just prior to his second birthday.  A biopsy was done and the results were clear.  We were so relieved.

In 2005, on our first night back at home following Hurricane Katrina, P.J. suffered an appendicitis and once again our child was in surgery.  Less than a year later, he was “under the knife” again to repair a broken nose.  That was three surgeries for him by the age of 14.  Josh, our youngest son, is now 12 and has had three surgeries as well.  You’d think that by the time P.J. arrived at the burn center, we’d be pros at this!  Here we are 37 days and six surgeries later and it hasn’t gotten any easier.  It is HARD.  It is HORRIBLE.  It is HELLACIOUS.  In fact, there are a lot of “H” words that describe what it’s like and how we feel… HELPLESS definitely comes to mind.

When you’re waiting for your child (or any loved one for that matter) to recover from an illness or incident, HELPLESSNESS becomes a way of life.  When our kids were babies, it was especially trying because there were often times when we didn’t know what to do to make things better.  Nothing we tried worked.  I’m sure P.J. has been frustrated somewhat over his own helplessness right now.  There are so many things he can’t do on his own and he can’t always communicate what he wants.  Talking (even getting out just a few words) is very difficult for him and there are times when asking “yes” and “no” questions just doesn’t cut it.  With his hands being bandaged, writing on a board is not much easier.

As each day passes, things get a little better.  We are pleased with his progress and with his patience, although he has mentioned another “H” word a few times…  HOME.  It HURTS to have to tell him that home is a long way off, but we are HOPEFUL that he will continue to be strong and courageous, and we are HAPPY that God is answering so many of our prayers.

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P.J.’s Journey: My Copilot

When A.J. and I had only been married for about a year, he went to work in California for about six weeks.  In our 28 years of marriage, that was the most we have ever been separated and it was quite a trial for both of us.  I lost 20 pounds and he lost 30 (okay, so maybe that wasn’t such a bad thing).  At any rate, it was tough.  I remember telling my mom that I was surprised by the little things that I missed… his habit of patting me on my head whenever we were watching TV together and he’d get up to go to the kitchen for something, his singing in the shower, and even his teasing me about my driving.

This has been an exceptionally difficult week for me.  While P.J. still has a very long and rough road ahead of him with his recovery, it was time for me to return to work.  I am very blessed that I have an understanding boss who is willing to allow me to get hours in whenever I can and I am thankful that some of my work can be done remotely, but this week, I was needed in the office, so A.J. spent the week at the hospital with P.J. and Joshua and I stayed in Braithwaite.  The goodbyes on Monday morning were hard.  When A.J. drove away, I cried.  I was sad because I knew it would be rough without him and I felt terribly guilty that I wouldn’t be with P.J. this week.  I didn’t want my child to wake up and not see me, and think I had abandoned him when he needed me the most.

Thanks to the help of my good friend, Nell, who has been doing housework for us and picking up Joshua from school, I managed to work a full week, but it reminded me of those six weeks back in 1984.  As is typical in most marriages, we tend to take each other for granted.  A.J.’s morning routine became mine… walking the dog, getting Josh up and ready for school, making his lunch, loading the car, dropping him off.  Little things frustrated me, like when I was walking Molly and the neighbor’s dog was loose and caused her to halfway drag me down the block.  I ran behind her and cried (yes, I really did… been doing a lot of that lately) and begged her to please hurry and tinkle so I could get to work at a reasonable time.  Every step of the way, I was thanking God that I am not a single mom and that A.J. would eventually be coming home.

This week gave me a lot of time to reflect on how much of a servant my husband is to me and to our children.  I had experienced this on a different level this past October when I had ankle surgery, but I must admit I was a bit distracted with my own pain and frustration during my recovery and didn’t fully grasp the level of his sacrifice.  But this time, I see it.  I see the commitment and dedication, and I see how he puts the needs of his family ahead of his own.

Nell, who cared for her sweet husband James for 14 years following his stroke, shared with me the other night that A.J. had once told her how much he respected her and how he could never be a caregiver.  Isn’t that ironic when that’s exactly what he is… a caregiver?  One of the things I have always admired about A.J. is his love for his children — all of them — and so I know how terribly difficult this tragedy has been for him; yet he has been the sane one, the strong one, the stable one.  He has been here for P.J., has reassured Josh, and has comforted me and helped me get through these past 24 days without losing my mind.  He has helped us all focus on God and keep our faith.

This morning, when I walked into P.J.’s room for the first time in 5 days, he grabbed my gloved hand and kissed it.  His healing is evident.  Each day shows us a new miracle.  In writing this series, my desire is to share those miracles with you, but to also give you some insight as to the overall journey we are all taking together.  This journey would be so much harder if we didn’t have A.J.  I saw a bumper sticker the other day that said “God is my copilot.”  It made me smile, but I thought to myself, “A.J. is my copilot… God is our GPS.”

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P.J.’s Journey: Roller Coaster of Love

The last time we went to Disney World, in 2005, P.J. was 12.  We hadn’t been to any amusement parks in years, so this was the first time that he was old enough to really enjoy the “fun” rides.  Josh was only 5 at the time, so he couldn’t go on any of the big rides, and A.J. is not real fond of some types of roller coasters, so I was drafted to be P.J.’s riding partner.  I drew the line at going on the Tower of Terror more than once, but there were several rides, like the “Rock ‘n’ Roller Coaster” that we rode over and over again.  To be totally honest, by the 3rd time, I was ready to barf, but P.J. was having such a good time I couldn’t deny him the enjoyment.

Right now, we are riding a roller coaster together.  Unfortunately, A.J. and Josh and the rest our family and friends are forced to ride it with us, whether they like it or not.  Every day seems to bring different news.  First it looked really bad, then things got better, then he was in a coma, then he was awake, then he was off the ventilator, then he was back on it.  It has been one or two steps forward and one or two steps back from day to day, and sometimes from hour to hour.  Quite frankly, it stinks.  I am hating this ride, wishing I could take P.J.’s place in that bed.  I’m sure A.J. feels the same way, but we know that God has a plan for all of this and are anxious to see what that will be.

A.J., who has never really cared for roller coasters and never even tolerated them as much as I, has been doing a better job of coping these last few days.  It’s no coincidence that he and I are married… I am certain that God put us together because we complement each other so well.  He is strong when I am weak and I am strong when he is weak.  These last few days, he’s been the strong one and I am so thankful to have him.

After the 3rd time on the “Rock ‘n’ Roller Coaster” at Disney, I was ready to throw up.  These last 16 days have had me to that point on more than one occasion.  A friend told me today that she doesn’t know how I just don’t crawl in in hole and hide.  I am sick of this roller coaster… I think we all are.  But, as I did when P.J. was 12, I will continue to ride as long as I have to because I love P.J. so much and I want to be by his side for this journey.   Thank you and God bless you all for taking the ride with us.

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P.J.’s Journey: Speed Relationships

One of my favorite movies of all times is “Speed” with Keanu Reeves and Sandra Bullock.  They discover love and passion in the midst of lots of drama.  At the end of the movie, Keanu’s character, Jack, tells Sandra’s character, Annie, “I have to warn you, I’ve heard relationships based on intense experiences never work.”  Of course they hook up anyway and you assume they’ll live happily ever after until Speed 2 comes out and Jack is nowhere in sight.  I have to wonder why any woman in her right mind would give up Keanu Reeves!  But that’s beside the point…  Do relationships based on intense experiences work?  Do they last?

When we arrived at the Burn Center for the first time, we were still in shock.  The nurse assigned to P.J. for the morning, Liz, quickly took us on the side to explain what had been done already and what to expect when we walked into the room.  That was the most terrifying part — seeing him for the first time.  What made it unusual (not sure if it helped or hurt) was that P.J.’s face was so swollen, it didn’t look like him.  We saw tubes coming from everywhere and Liz quickly explained what job each was doing.  Liz is a special lady, but she is not the only wonderful nurse in the Burn Center.  There are many.  I would start to name them all, but I know I would miss some.  Every single person (doctors, nurses, technicians, staff, etc.) that we have encountered has been kind and caring and attentive.  I quickly began interviewing the staff to ensure that they had my child’s best interests in mind.  A.J. found this embarrassing, but I had to do whatever it would take to reassure myself that he was in good hands.  I’ve stopped those interviews now because it is so evident that God chose this team of caregivers especially for our child.

As the days passed and we received the news that P.J. was in a coma and then the next day that he had pneumonia, we were comforted immediately by Cheryl and Leona, two ladies who were in the same position as us, waiting for their loved ones to heal from burns.  They quickly shared their own stories with us and we became great friends.  It has been wonderful to get their reassurance as we go through something they’ve already experienced.  As new patients arrive, I expect we will pass on the benefit of our experiences as well.  Everyone seems to “pay it forward” in the Burn Center, praying for each other and offering encouragement.

We’ve only been here for two short weeks, but already we are feeling such a connection to all of these people — staff, other patients, and their families — that I know we will miss them terribly when we eventually take P.J. home.  We understand that there is a big reunion for all of the patients once a year, so I guess other families feel the same way.  Will these relationships based on this intense experience last?  I think they will.   In fact, experts believe that when people support each other through tragedies or “intense experiences,” their relationships are typically stronger than those formed casually.  Trust me, I read it on the internet, so it must be true.  ; -)

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P.J.’s Journey: His Joy Comes in the Morning

We’ve learned that it is a common thing for families in the burn center to count the days.  At first, the days all seemed to run together and if it weren’t for the fact that life goes on and we have another child at home in school, I think we would truly lose track.  Today is day 11 for us, and after the better part of two weeks, the stress has begun taking its toll.  I never thought it was possible to be so tired while at the same time being unable to sleep.  And even after we do sleep, the fatigue is still there — a type of fatigue that is indescribable.

For days now we have been praying that P.J. would wake up from his coma.  I’ve heard of families going through this sort of thing, but had never really understood all they were experiencing.  Did you know that sometimes insurance will refuse to pay for surgeries and treatments for patients who are considered brain dead?  So then the next of kin has to make the decision as to whether or not it is “worth” paying for additional surgeries and procedures that the patient needs.  Some of the surgeries that P.J. is facing still are ones that are critical to his survival.    It sounds ludicrous to expect someone to make a decision as to whether their child’s life is worth any amount of money.  For us, this was not even open to discussion.

The drive from Braithwaite to Baton Rouge takes a little over two hours if we avoid traffic.  We’ve made this trip many times over the last couple of weeks and usually we talk the whole way.  This morning, our car was like a tomb.  My husband was quiet.  I was quiet.  Neither one of us said anything for the first half hour and then I finally admitted to A.J.:  “I am so sad.”  Other than the obvious, I didn’t know why it was hitting me so hard at the moment.  I couldn’t explain it, but he understood.  He seemed to feel the same way, although he reminded me that we had to stay positive.  I called the hospital at that point and P.J.’s nurse, Shannon, said “Ms. Tina, he’s awake!”  My immediate reaction was disbelief.  I asked her “What do you mean by that?”  We’d seen him with his eyes open, but there was no recognition, little response, etc.  She said “He’s awake.  He’s nodding his head, blinking his eyes, and responding to other commands.”  She went on to tell us that she had to restrain and sedate him due to his anxiety and agitation.  We understand that this is typical of people who have been in a coma.  They are confused and disoriented when they wake up, not knowing where they are or how long they’ve been there, feeling pain and having many tubes connected to them.

When we arrived at the hospital for the first visit, P.J. was sleeping and then got a little overly anxious when he heard our voices, but we quickly softened our tones and calmed him down.  We left a short time later (we’re only allowed 20 minutes at a time), and went to church.  We were so overjoyed to be able to report to everyone at St. Paul Lutheran here in Baton Rouge that their prayers and the prayers of countless others, are being answered and that P.J. was awake.  This afternoon, we returned for the 1:00 visit and our joy quickly turned to sadness as the sedation was wearing off and we were seeing the signs of anxiety, confusion, and excruciating pain on his face.  It is agonizing for us.  When I shared the experience with Danielle, P.J.’s older sister, she said it made her think of God, the Father, watching the crucifixion of his only Son.  We’ve had many struggles over the years, and some have suggested that it was to strengthen us for this difficult journey.  As I mentioned in my previous post, we believe God has been speaking to P.J. during his sleep, and I am comforted today by the feeling that God is still talking to and strengthening him, and maybe using us to help with that.

God’s word has always been a source of great comfort for us, but never so much as it has over these past 11 days.  We’ve read scriptures to P.J. during many of our visits and repeated over and over again that God is faithful and true, and his mercy endures forever.  We needed to hear these things as much as we needed to say them to him.  As we continue this most difficult journey of our lifetime, we are trusting in Psalm 30, and are continually reminding ourselves that “His joy will come in the morning.”

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P.J.’s Journey: The Early Days

We sit and we wait.  We have been doing an awful lot of that lately.  Today we are waiting for our son, P.J.,  to come out of surgery.  For the past five days, we’ve been waiting for him to come out of a coma.  For the past nine days, we have been waiting to see if he would live or die.  For the past 19 years, we have been waiting to see what God would have in store for him someday.

On the evening of January 11th, P.J. suffered 2nd and 3rd degree burns over 70% of his body.  I hope to share with you through my blog, the details of his journey… the things I might not provide in a quick update… the emotions that our family members and close friends have been experiencing over these past 9 days and will experience over the next however many days, months, or years there will be on his road to recovery.

Before I tell you about the last nine days, here are some things you might like to know about the first 19 years of his life.  In the spring of 1992, I met a lady at my company picnic.  She was dating one of my coworkers and had joined him for the event and shared with me that she worked for an attorney who handled adoptions.  One thing led to another, and less than a week later, we were making arrangements to adopt a baby… a baby boy who was due in 3 short months.  WOW!

In August of that year, we became the proud parents of Philip James… Philip, meaning “lover of horses” and James, meaning “supplanter” – P.J. for short.  P.J. quickly became our world.  For the first seven years of his life, he was an only child.  In 1999, when his baby brother Joshua came along, lots of things changed, but our love for this child grew stronger and stronger.  Even at such a young age, he was a good big brother with a huge heart.  Josh was a preemie and had to have many blood tests during the first couple of weeks of his life to monitor his bilirubin levels, and P.J. hated being there when Josh had to get “stuck.”

We had a perfect family unit — two beautiful boys and lots of love to go around.  P.J. had a great childhood, playing T-ball, softball, soccer, and all the things boys like to do.  When he reached his teens, he shot up over night and his physical appearance drastically changed.  He became quite the looker (even if I do say so myself) and has always known how to use his charms to his advantage.  He quickly learned that his sparkling eyes were a very effective way to manipulate me, and he’s used that against me ever since!

The last few years have been a struggle for P.J. to find his purpose and love himself.  It baffles me sometimes how a boy that has so much going for him and is loved by so many people, could doubt himself so much.  But I believe the enemy knows the threat P.J. imposes and has been trying to defeat him all this time.  The good news is that God is on his side.

For the past nine days as we have waited for answers, our emotions have been up and down and all over the place.  We’ve mostly received discouraging news… more damage than was originally thought, slow and little brain activity, lack of response, pneumonia, elevated heart rate, and body temperature issues (too low sometimes, too high other times).  As we begin to get some encouragement from the neurological improvements over the last two days, we are cautiously optimistic as to what the future holds.

They say burns are the most excruciating of all injuries.  They say losing your child is the worst pain a parent could ever experience.  Here’s the conflict… What could be worse?  Knowing your child is alive but in excruciating pain, or knowing that he’d be at peace with his heavenly father who loves him more than even you if you were willing to give him up.  We are overwhelmed… overwhelmed with the current issues, overwhelmed with what the future holds, and overwhelmed with the number of people who have stepped up to help us in so many ways, offering childcare, help at home, financial support, blood donations, prayers, and more.  We are blessed by the stories that family and friends are sharing about the amazing ways this child has helped them over the years… we had no idea.

These are the early days of P.J.’s journey to recovery, and yet the lives that have been touched and the hearts that have been opened are countless.  Philip… lover of horses.  James… supplanter.  A supplanter is one who follows.  The bible tells us in the book of John, that Philip, who later became an apostle, was skeptical at first.  On the other hand, James, one of the sons of Zebedee, was one of the first to be called to follow Jesus.  We believe that as P.J. sleeps right now, Jesus is saying “Come and follow me.”  We look forward to learning in what direction the Lord will take him, and just how many more lives he will touch as his journey continues.

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