The first Christmas.  The two hardest days of my life since his death.  I almost can’t type or say his name.  Actually, we haven’t done that in the last two days very much.  I think I’ve cried more in these last two days than I have in the last five months.  My boss, Joe Duncan, warned me that it would be the hardest of days and he was right.  Trey absolutely loved Christmastime and everything that embodied its meaning.

We usually make candy a week before Christmas.  We would make peanut butter balls, coconut balls, fudge, all kinds of candy in preparation for the holidays.  On Sunday, we went to my sister’s and it was Collin’s turn to learn to make fudge.  He did such a good job and I got the annual picture from behind at the stove.  Trey’s was posted on Facebook this year as a memory.  I sat in the kitchen and cried as I watched Collin step into Trey’s position of making the candy.  There were no peanut butter balls made and no other candy.  But the fudge Bobby and Collin made was delish!

Christmas eve is the time that most people go to Christmas eve services.  It has been our tradition for years that is when all our family gets together (nieces, nephews) to eat finger food, fellowship, exchange presents from the Grandmother, etc.  I began Christmas eve receiving text after text of love and support from friends who were thinking about our family.  Many brought tears to my eyes as I was so touched at their remembrance of our family.  Trey loved the party atmosphere on Christmas eve.  We always read the story of Christ’s birth from Luke.  We started years ago letting the youngest child that could read be able to read the story.  Last year, we changed and let my 82-year-old mother read the story.  If it was read this year, I wasn’t in the room.  I stayed at the kitchen table looking at the vacation guide for our trip for next year.  There was laughter though as Julianne came in and screamed – you mean there’s no peanut butter balls!?  We decided to watch Elf when we realized so many had not seen it.  We couldn’t believe it.  And laughter began as those of us who had memorized the movie spoke every line. SANTA!  I KNOW HIM! I KNOW HIM!  Oh Trey was there.

Jay and I came home to put out presents for Collin for Christmas.  Jay had gone that day to get the stocking stuffer candy.  I had held it together so well all day until I was putting the candy in his stocking and I realized Jay bought a bag of York Peppermint Patties and I lost it.  Jay could not even understand what I was saying.  That was Trey’s favorite candy I bought him every year.  He didn’t know.  Honestly, I think it was just time for me to fall apart since I had held it together and had just been teary.

I am so glad that we decided to not do the early breakfast like we traditionally do.  It proved exactly what I thought.  Trey was the one that could never sleep the night of Christmas eve.  He would be the one up at 6 a.m. on the stairs and waking Collin up.  I slept on the couch last night because my head had been hurting and by 9 a.m., Collin still had not stirred.  I finally fed the dogs and began making noise to get him out of bed.  It was a nice morning just me, Jay, and Collin.  My phone was blowing up with texts and I would hear Jay’s ding at the same time.  We would just look at each other and know.  Don’t get me wrong.  We could not have made it through the day without the love and support.

I don’t think some people realize how many people really have been affected by Trey’s passing.  Some don’t know just how much he was loved.  You didn’t have to know Trey to love him.  I guess in the grieving stage, this might be where my anger, or maybe frustration is a better word might come in and CERTAINLY not at my Lord. I am sitting here watching Christmas vacation where he is stuck in the attack and he is watching the old reel to reel movies and I’m just bawling.  There are so many people who I would like to ask, by choice, put your son in front of a bus and step away.  THEN be expected to accept it in love and grace without anger.  That’s why the other day I said on twitter, I think some people just don’t understand.  I pray you never feel the depth of pain and loss we feel.  There are friends that feel the same depth of this grief that our family feels or they would not step out and do so many random acts of kindness to ease our grief and their own.  Like put Christmas lights on our house as a surprise, stop by with food on Christmas eve out of the blue (we sure didn’t have any – I was eating candy), take Collin Christmas shopping for his mom and dad, and so many other things.  These are the people who think of others.  I mentioned the texts.  Today, I got a special text from Cade Peeper.  Cade is the son of Cade and Tara Peeper and Corbin and Quinn’s older brother.  Corbin was one of Trey’s pallbearers.  Cade plays basketball for Ole Miss and is in Hawaii in a basketball tournament.  He sent me a text just to tell me he was thinking about me and that he loves us.  In the paradise that Trey loved, he stopped to think of us and text me.  I fell apart.  His grandfather, Jim Siegfried baptized Trey and was with us all during our West Clinic visits.

This leads me back to the parents.  What I pray for the parents is that they learn to be better parents to their children.  Love your children.  Know that some things just don’t matter.  It just doesn’t matter if the bed isn’t made.  What matters is that you know what your child is doing when you are not around.  Be willing to accept that not all children are perfect.  Trey certainly was not.  Do you know their character?  What does their character say about them?  Are they really who they portray to be – like Jesus – the Christ-child?

On June 29, 2012, a little more than a week before he died, this was Trey’s devotion that I found.  He wrote:

We must:

• Pray in line with God’s will – 1 John 5:14-15
• With the right motives – James 4:3
• With persistence Luke 11:8-10
• With a spirit of humility – Luke 18:14

He wrote – Sometimes we do not need to be reminded of these guidelines.  Sometimes it just takes an increase of faith.  Mark 9:24    THIS IS THE PRECIOUS WISE SON WE LOST.

It has not only been hard on us, but very difficult on Julianne.  Love just doesn’t stop when someone dies.  In some instances, it just grows stronger.  Our heart aches for her.  But she is surrounded by her family and our family with lots of love.

Surrounded by family with lots of love. . .we are.  And some of them are friends that I feel have been part family for years.  I am very thankful this season for these friends.  Proverbs 18:24b “But there is a friend that sticks closer than a brother.”

Thank you to all of you who helped us through this difficult couple of days and who will continue to hold us close in your prayers.  It will not get easier any time soon.  Sometimes is just takes an increase in faith.  Thank you Trey.  I miss you buddy.

I had the opportunity to go on an official visit to Le Bonheur today and take the “Le Bonheur 101 Tour”.  I went as a part of the John Dustin Buckman Charitable Trust and was surrounded by many friends; one, my boss, Joe Duncan, and two, my pastor, Charles Fowler.  Even the LeBonheur officials knew of my situation and when we would go from floor to floor, doctors would console me about my loss.

The first area we went through was the ER.  I looked directly at the seats where the Newman family had been sitting when I came out to tell them that Trey had cancer.  A memory that was so vivid.  My knees just gave way.  I guess someone saw that and Joe asked me if I was okay.  I said I was fine, just fine.

You see, St. Jude wasn’t actually the first to tell us about the cancer.  We knew it was a mass.  We just didn’t know what type.  It was when we got to St. Jude that we regained our hope.  Not that you don’t have hope at Le Bonheur!

We went through surgery and I saw a mother standing next to her child and I heard Dr. Eubanks explain to everyone else how it has been such a big change to let parents now stay with their children until they are fully asleep before their surgery.  I thought back to our time with Trey in the Le Bonheur ER and how we told Trey we would never leave him.  I was with him through every procedure when they put him to sleep.  I even stayed in an entire procedure at West Clinic and never left the room.  That was his last procedure about two weeks before he died.  That is so important to the child.  I’m so glad the physicians realize that.

We went through the neuroscience department and they were testing epileptic children by EEG.  I smelled that glue a mile away.  I’ve had so many EEGs I cannot count.  That’s the first thing they slap on a migraine sufferer are the EEG leads.  I did ask if the glue was still hard to remove from the head when I was a Le Bonheur patient and they told me things had not changed.

At the end of our tour we were able to eat lunch and talk about what we had experienced.  I didn’t really say what I wanted to say as the mother of a former patient, even if Trey was only a patient for a couple of days.  Someone did touch on the fact that when we were walking down the halls you forgot you were on a tour and you realized the families were experiencing real life trauma.  My thought was, and yes, some child will not go home.  Or, a family will go home tonight without their child and they will feel the emptiness and loss of a lifetime.

It doesn’t matter how you decorate a hospital, guide a tour, or have the bigger rooms than the next hospital, if you do not have the latest in patient care and research, it really does not matter.  If I knew of a hospital today doing research on the P16 gene, other than research facilities, I would be in touch with them asking them about their clinical trials.  There is just so much out there that people need to be educated about.  And yes, even patient care services is part of it.  That means knowing how to take care of the sibling once the other sibling has passed.  We have not tapped into that service at St. Jude but I believe it is time to utilize that service with Collin.

Collin is suffering internally.  His grades are suffering.  He does not talk about Trey.  He has a new diagnosis to deal with regarding food allergies and two new medications.  It just boils down to a lot to deal with for a 13 year old.  Why some people aren’t reaching out is beyond me.  I’ll say it again.  I’m 47 years old and this is the most difficult time of my life.  I don’t know how Collin is even functioning.  Basketball season starts soon and we pray that will begin a revival in all things new.

We know that God has a purpose for every child in Le Bonheur.  I just walked down the halls and prayed for the children as I felt like weeping.  I hope during this holiday season you will remember those who are ill and hospitalized.  All it takes is one visit to make someone feel special.

For these children I pray:  “God declares with confidence that things can change— “See, I am doing a new thing!” Isa. 43:19

I can’t find the words to pray
I’m a little down today
Can you help me?
Can you hold me?
I feel a million miles away
And I don’t know what to say
Can ya here me anyway?
What I need is for you to reach out your hand
You have taught me
No matter what you’d understand

Lord move in the way, that I’ve never seen before
Cause there’s a mountain in the way and I’ll knock on the door
I’m drifting away, waves are crashing on the shore
So Lord move (move), or move me.

I’ve look every where to find
A simple peace of mind
I can’t find nothing on my own
So I got to leave myself behind
Take up this cross of mine
Give away everything I hold onto

Lord I know the only way is through this
Lord I know I need you to help me do this

Lord move in the way, that I’ve never seen before
Cause there’s a mountain in the way and I’ll knock on the door
I’m drifting away, waves are crashing on the shore
So Lord move (move), or move me.

Out of this place of complacency
To a place of fellowship with thee
Cause I am weak but Lord you are so strong
And you know it’s been way too long (been way too long)

Lord move in the way, that I’ve never seen before
Cause there’s a mountain in the way and I’ll knock on the door
I’m drifting away, waves are crashing on the shore
So Lord move (move)…

Collin and I were on the way home from church today and the song 10,000 Reasons came on the radio.  Most of the time, I hold it together, sing along, and that’s it.  Today, I decided to just cry and let it go in front of Collin.  I mean heaving crying.  I saw Collin turn to the window and he stopped singing.  At the end of the song, I said out loud, Oh, I miss your brother so much my heart hurts.  I asked Collin, do you miss him sometimes?  He said, yes.  Then, without a word, he helped me get everything out of the car that was mine.  That’s not normal.  Ha ha.  I guess the point to that story is that I feel it is healthy to show emotion and cry in front of Collin.  How else are we going to let him know it’s okay to grieve?

That brings me to yesterday.  Collin has been on the couch all morning and Jay and I got home in the afternoon and I was ready to crash on the couch.  I asked Collin to move from the couch several times and he did not move.  Finally, I got an “ALRIGHT” out of him. Parents, you know how that makes your skin crawl.  I reached to pop that little mouth out of reaction and he got up real fast.  I said, give me your phone and he kept walking.  I said give me your phone and he threw it at me (well, tossed it behind him).  I told him to not plan on asking for his phone anytime soon.  He said he didn’t care.  I walked off fuming.  Little smartie.  He won’t get away with THAT again.  I went to Jay ranting!  Later that evening as we were leaving, Collin said he was sorry and that he had a bad day.  It made me think.  He can have a bad day.  He hasn’t been crying or expressing anything like I have.  I think he is entitled to a bad day.  It reminded me of the scripture.  Ps. 145:8  “The Lord is gracious and merciful; slow to anger and great in lovingkindness.”  SLOW TO ANGER…humm.  That’s a novel concept.  I have my precious Collin who is dealing with so much, so as he walks down a path that none of us have ever walked, slow to anger is the very least he deserves.

Jay and our family cheered at the St. Jude marathon yesterday.  I think there were more people crying that were running that those that were cheering.  It was so very special.  It was the day that Chris Camp, a firefighter, was to push Trey in a wheelchair during the race, but Trey was not there.  Tonight, Chris and his family came over and in a very emotional moment, presented us with his medal that he received from running the marathon in memory of Trey.  He asked if we minded that the firefighters run in memory of Trey from now on.  We said we are honored.  I’ve said it before and I’ll say it again, the firefighters are so special.

Collin has had all of his tests and they are normal. No signs of cancer.  But as I have mentioned before, they found Eosinophilic Esophagitis.  This is a disease that the esophagus inflames due to the reaction of allergies to foods.  We had allergy testing done on Thursday and he is allergic to every kind of food you can imagine – milk, egg yolk, soy, wheat, rice, peanut, you name it.  He can have water, beef, and chicken!  The doctor wanted him to go on a diet and Jay and I both said there is no way, so we are going the pill route.  We hope this will help with many things.

So our just a few reasons boil down to one reason this season, Collin.  What are we going to do during Christmas? We don’t know.  Will it be hard the next few weeks? Absolutely.  Am I looking forward to it? Of course not.  I can’t even listen to Christmas music.  But Collin did say he was excited about Christmas.  I wish I had time off to spend with him at Christmas.  Please pray that I can approach work and ask for a day to extend our Christmas together while Jay is off work.

Jay and I might be grieving about one son we have in heaven, but we know we have another son here with us that needs more attention than any one child can be given.  This time is also hard on Trey’s friends.  Our family recognizes that.  We are praying for you.  We all will be together closer to Christmas as I plan a party for our high school youth.  I don’t care what the house looks like, we just need to be together.

There are days when I feel my strength failing and I wish the end would draw near.  That means I would be near to Trey.  But God is not finished with our family yet.  And he’s not finished with Trey.  There are still seeds to plant and gardens to water with God’s word.  That does not change that I miss my buddy more than words can express and just getting out of bed each day is the hardest thing I do.  Once you’ve experienced a loss like this, you will find that sharing God’s word comes very easy.  I am just praying for more opportunities to use Trey’s story for God’s glory.

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore. . .