Sunday, December 2, 2012

November 2012 Update

Well, after a bit of a disappointing October, I was looking forward to a month of "Thankfulness" for November. I was finally migraine free after 7 straight days. That was plenty to be thankful about.

We made plans to travel to East Texas to say a final "goodbye" to Richard's grandfather (Papa). His health had been declining and we figured we probably wouldn't have much time left with him. There was a carnival in town the same weekend so we also got to take Caden there.

Since it was the first time in over a week that I was feeling well, I took full advantage of it. I talked my father-in-law's sister into riding the rides with me. The first one we chose was the type of ride that swings from side-to-side going higher each time until eventually you spin all the way around but not upside-down. We were locked in place by an over-the-head harness. Once it got going, Donna was so freaked out by it that she was screaming, "Sweet, Jesus, save me! Get me down from here! We're gonna die! Oh, Lord, help meeeeeee!" I couldn't help myself - I laughed. And the more she screamed, the more I laughed. She had me laughing so hard I had tears running down my face and my sides hurt. Man, did I need that.

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While we were there, Caden and I both had the opportunity to learn how to shoot a gun. Caden was excited; I was petrified. I don't like guns. I'm not against them, I just don't like them. An untrained (or unstable) person has the potential to cause great harm with a gun (or any weapon for that matter).


I also managed to catch some great shots of Caden rolling down a hill that I used to make a scrapbook page.

We still had not figured out what was going on with Caden's tummy, so by November 7th, we were taking more x-rays and seeing the gastroenterologist again. I'm thankful for caring doctors. After all we went through with Caleb, I have a tendency to go a little over-cautious when it comes to Caden. The doctors we have seen all understand my fears and concerns, are helping to calm me down, and are not blowing me off as a paranoid mom. They are working with me to find out what's wrong with Caden's tummy issues. I love them all the more because of it. We had to do another weekend "cleanse" on him starting on the 9th. He handled it all so very well.

On November 12th, Richard's Papa joined Caleb in Heaven. Because of the salvation of Jesus Christ, we are assured that one day we will see him again. Until then, I know Caleb has one more loving relative to take care of him until we can get there, too.

We went to Louisiana to spend time with family & friends for Thanksgiving and Caden's birthday. We opted for a Star Wars theme for Caden since he's into it just as much as Caleb was (if not more so). My SIL was in charger of the cake since we were driving in. I LOVE how she used a picture of us and her family from pics we took prior to Caleb's fight with Darth Vader as the picture on the cake. It helped us all to remember him during a joyous occasion. After opening all his gifts, he and several of the kids (including the grown kind) had a massive Light Saber battle in the front yard. When all was said and done, only 1 of the 6+ swords was damaged in the melee & no injuries were reported!

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My favorite part of the month was having a short family photo session. Our nephew's girlfriend is a budding photographer & agreed to take some shots for us while we were in Louisiana. I love the shots she got of us & can't wait to have her take more the next time we are down there (or if I can convince her to come to us)!

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Stay tuned for more updates...

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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Monday, November 5, 2012

October 2012 Update

October just did not seem to be a good month for us this year.

Caden started having tummy troubles over the summer. It was kinda sporadic so we didn't think too much about it. Well, in October the tummy troubles were on a daily basis. He would say his stomach hurt and always point to the same spot. Every few days, he would throw up while eating. I took him to the doctor, x-rays were taken, poop was revealed on x-rays. Started adding 1/2 capful Miralax to daily medicine regimen to help move things along. Dr. P. also referred us to a gastroenterologist since this had been going on for a couple months. (More on that as we go along.)

He had also started complaining about his eyes hurting & headaches again. So we took him to ophthalmologist again. His astigmatism had rotated by 90 degrees. A new prescription for lenses was written and we were back out the door. We knew the insurance wouldn't cover another set of lenses in the same year, so we were expecting to pay it all out of pocket. However, when we went to get his new lenses, we found out that we were allowed one change of prescription on the lenses within 6 months of getting the original prescription. Praise the Lord, we made that date by less than 5 days!! So, we didn't have to pay anything for the new lenses. When we picked up the new lenses, Caden put on the glasses and said, "Wow, Mom! I can see perfectly now!"

We saw the gastroenterologist (Dr. D.) for the first time on October 17th. We absolutely LOVE her! After she reviewed the x-ray & checked him over, she said he definitely had a lot of poop still there & had a lot of gas as well. She asked us to do a "cleanse" over the weekend then increase the Miralax to 1 cap per day to see if that would help keep him from throwing up & get things moving. The cleanse would involve him drinking 64 ounces of liquid with 18 caps of Miralax. She wanted us to call her on the 22nd to let her know how he was doing. We started his cleanse the morning of the 19th.
"Poor Caden has been having some tummy issues lately, so I took him to a specialist on Wednesday. She gave us instructions to "clean him out." We won't be going anywhere today or tomorrow. The poo-nami has arrived! Hoping this helps with the issues and we don't have to do anything additional. Proposed next steps don't sound pleasant."
That night he threw up again.
"It's very frustrating (and frightening) when you know that something is wrong with your child, you have no idea what, and you have to wait until Monday to talk to the doctor. Makes for a very long weekend. Trying not to let myself imagine the worst. Leaning on my Savior for peace, strength and comfort."
I called her on the 22nd during a break from jury duty (see details below). She said he had probably thrown up from the sheer volume of liquid consumed that day. We were advised to continue the 1 capful of Miralax per day and follow-up with her in 2 weeks. (To be continued in November.)

I also had my first jury duty summons in 10 years! I was so excited and hopeful that I would get picked to serve that I pre-arranged a sub for my class & arranged for my mom to come visit for the entire week so I wouldn't have any reason not to be able to serve. I have always been fascinated with our legal system and would embrace the opportunity to perform my civic duty. I made it through the initial selection phase and discovered it would be an Aggravated Assault with a Deadly Weapon case. Excitement continued to build. However, I was not chosen for the final selection. I was bummed I wouldn't be able to serve, yet happy that I could focus on Caden and enjoy my time with my pre-schoolers that week after all (yeah, right!).

Thursday afternoon (Oct. 25th) I came home from work with a headache. I'm so glad that Mom had decided to stay until Halloween was over. I was able to lay down in bed for a couple hours while she watched Caden and fixed dinner. Woke up feeling better on Friday morning, but by that afternoon a migraine hit. Again, I took some medicine and went to bed. I woke up feeling a bit better on Saturday morning so we left the house for breakfast at I-Hop & a trip to the Ft. Worth Zoo. That migraine came back with a vengeance over breakfast. I kept thinking that it would pass & we wouldn't have to cancel our trip to the zoo. Within 15 minutes of it starting, I thought I was going to pass out from the pain. We left breakfast and headed to the emergency room instead of the Zoo. Because this one was so much more severe than my normal migraines they ordered a CT scan. I vaguely remember putting my jacket over my head as I was wheeled to Radiology and wondering when I would be able to get some medicine that would actually make the pain stop. They had given me a bunch of stuff, but nothing was working yet. After a couple hours, they finally got enough meds in me to take the pain level down to a 3 then sent me home. I slept most of the day.

Sunday, 10/28 - still had it. Had to leave church early.
Monday, 10/29 - still had it and went back to the ER.
Tuesday, 10/30 - still had it. Missed work. Managed to get an appointment with neurologist on 10/31
Wednesday, 10/31 - still had it. ("Migraine, migraine, kindly remove the stabbing pain from my eye, then go away and take all of your icky friends like nausea, dizziness, photo-sensitivity, loud noises, tinnitus, auras, etc., with you. You have out-stayed your welcome. Isn't 6 days in a row enough already?!?!?!?! You are not any fun, and I want you gone!!! Oh, and don't ever come back either!") Went to neurologist. Diagnosis: Rebound Headaches. Treatment: Told to rest with minimal activity, preventive medicine prescribed and no more pain meds. (WHAT?!?!) Missed going to the CRC annual Trunk or Treat.
Thursday, 11/1 - late in the afternoon, FINALLY GONE!!!

I know it seems that October was just a jumble of bad health, but there were many good moments as well.

We were able to make it to the Little Elm Fire Department's annual Open House. It was our first time being at the new station since it was built. My BIL, David, and his two kids went with us and we had a good time. It was cold, and windy, but it was dry! We made sure Caden wore his firefighter outfit & got some great shots of him. Caden LOVED sitting behind the wheel of the firetruck and putting out a "fire."





In the post I made about More Than I Can Handle, I quoted from two different books. The author of one of the books actually commented on the blog the next day! That was pretty cool, but I'm still kinda wondering how he found my little blog.

Late in the afternoon on the 27th, we went to a local pumpkin patch. You can definitely tell I was not feeling well in the pics we took. Well, at least I can tell. I was still feeling the effects of the migraine and all the pain meds they had given me at the ER that morning.




The best moment of my month came on a day that I didn't expect would be very happy - October 10th. The 2-yr anniversary of diagnosis. Caden and I were so blessed to be able to spend a few hours with D & her daughter. The kids had a blast playing together while D and I had a chance to catch up. We hadn't seen each other in person since Caleb's Celebration of Life service. Social media is great for being updated on life, but there is something about a face-to-face conversation that is so much more worthwhile. And, of course, virtual hugs just don't cut it most of the time, so there's always the joy of a hug with skin on.

That's enough "fun and excitement" for the month. Stay tuned for more in November.

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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Sunday, October 21, 2012

The REAL MIRACLE

Richard posted the following on Facebook earlier today and I thought I would add it here.

What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him?

Just read a friends post which mentioned Caleb and started me thinking about him. Now I know this friend won't do this, but don't ever say to me "I'm sorry I made you hurt... Or think about him and cry....."

You see, to me the pain I feel is the love I have for Caleb. I am better to have loved and still love him than to have not ever known that feeling.

Which brings me back to my question. What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him?

Most of you have known Angela and/or I for over 7years. Which BTW will be before Caleb was born. We've prayed for 5-7 years for the chance to have a child.

We finally decided to adopt and by such miracle we met Caleb's birth mother. Of whom were still friends with today. Due to some medical condition with Angela. Shortly before Caleb was born she had to have a procedure which prohibited us from ever birthing a child. A few years down the road, we adopted again. Welcome to our world Caden.

So, I know I'm leaving a big portion of the story untold. But what if Caleb was never born? Or something happened during the pregnancy? Or? Or? Or? Or?

You see, when Caleb passed away we decided not to live the rest of OUR lives asking... WHY? But giving God the glory for providing us strength, courage, a great church & great friends. All of which helped us get through a very tuff battle.

Which reminds me of a great song we use to sing a Grace Church USA. "The Battle is not Mine, God Said it's His" Sure wish I had a copy of that song to listen to every once and a while.

What if the REAL MIRACLE was that Caleb was my son and I got to spend 5 1/2 years with him? Thank you Jesus.

The song Richard is talking about is called "The Battle Is Not Yours" by Clint Brown and is available on iTunes as part of the "It's Time to Dance" CD.

"The Battle Is Not Yours"
Clint Brown

The battle is not yours, God said it's mine
The battle is not yours, God said it's mine
If you'll set stand and see
He'll show up on time
The battle is not yours, God said it's mine.



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We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Wednesday, October 17, 2012

More Than I Can Handle?

Recently, several friends and family members have encountered tragedy of one kind or another -- death of a child/parent/spouse, a relationship ripped apart, loss of a job and/or home, etc.  One of the first things I typically see is someone telling them something we were repeatedly told throughout our journey, "Remember, God will never give you more than you can handle" (or some variation of it). And, lest anyone think otherwise, I've been guilty of saying it to others in the past. Until we went through the most severe trial/tragedy of our lives with Caleb's diagnosis, battle, and death. When I felt I had nothing to hold onto, I began scouring the Scriptures for God's promises to help. I couldn't find anywhere in Scripture where God promised never to give me more than I can handle. I found promises that I would have trials and tribulations. And I found promises that God would be with me in those trials. I think the verse people are actually trying to use is:
 "No temptation has overtaken you except what is common to humanity. God is faithful, and He will not allow you to be tempted beyond what you are able, but with the temptation He will also provide a way of escape so that you are able to bear it.
1 Corinthians 10:13
The problem with using this scripture for a reference during times of hardship is that it is not accurate. This scripture is referencing a temptation. Dictionary.com defines "tempt" as:
verb (used with object)
1. to entice or allure to do something often regarded as unwise, wrong, or immoral.
2. to attract, appeal strongly to, or invite: The offer tempts me.
3. to render strongly disposed to do something: The book tempted me to read more on the subject.
4. to put (someone) to the test in a venturesome way; provoke: to tempt one's fate.
We weren't being tempted when Caleb was diagnosed with a brain tumor. We were in complete turmoil and at the end of our strength. Our entire world was crumbling around us. Actually, the apostle Paul said very accurately what we were feeling in 2 Corinthians 1:8-9 (emphasis is mine):
We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.
Paul clearly states that what he was going through was more than he could handle. So much so, that he wanted to die. But he also knew why it was happening -- so he would rely on God and not himself! Eric J. Bargerhuff wrote in The Most Misused Verses in the Bible,Surprising Ways God's Word Is Misunderstood [Kindle Edition]:
So the popular notion that "God will never give us more than we can handle" is in reality a blatant falsehood - a lie. He will give us more than we can handle, and this for the express purpose of bringing us to the end of ourselves so that we realize our very life, breath, and sustaining power comes only from God all the time. Jesus clearly said, "Apart from me you can do nothing" (John 15:5).
He's absolutely right! The entire time we battled that tumor, we prayed for God's will to be done and for Him to be glorified, no matter the outcome. We fully relied on God. We had to. There really was no other choice for us. Our reliance on His strength and power is the only thing that sustained us through that time and still does today as we continue to mourn Caleb's loss.

Now, were there times during that battle that I wanted to give up, just walk away from everyone and everything? Yes. I was able to bear the temptation of giving up because Jesus sustained me with the ability to overcome with me continuing to rely on Him for comfort instead of shutting myself off from the world.

I read this introduction to a book I got today called, Hope in the Midst of Tragedy, by Shelley Hitz.
Have you been through difficult times in your life? If so, you are not alone. Jesus says in John 16:33, "In this world you will have trouble. But take heart! I have overcome the world." Notice that He doesn't say that we might have trouble or that if we have enough faith we will escape it. He clearly states that on this side of heaven we will walk through difficult times in our lives. 
And yet we have reason to hope.

This book is my own personal journey to finding hope after a tragedy hit our family. However, I did not want this book to be my story alone. Instead, I want it to be a resource for you to find hope in the midst of your own difficulties. That is why I have added the sections that you will see through the book called, "From My Life to Yours," where I add journaling prompts and reflection questions for you to apply what you are learning to your life. I pray that God leads you to find His hope no matter what you are currently walking through.

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
I can't wait to get into this book! And, I think I have found a new scripture to use for anyone in the midst of a trial or tragedy - Romans 15:13. To me, it expresses the need to continue trusting in God in the midst of the circumstance while maintaining hope in Christ. It made me think about all the times during Caleb's battle that we had nothing but hope. We were at the end of our own abilities and knew that the only way we would survive was by desperately clinging to our Lord and Savior for hope, strength, comfort and mercy.

So, will God give me more than I can handle? Absolutely! And I know that He will be right there with me in the midst of it as I continue to worship and glorify Him. To Him be the glory, honor, power and dominion forever and ever!



We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


Sunday, October 7, 2012

The Miracle That Wasn't, Or Was It?


I heard a new song a couple weeks ago that Taylor Swift performed during the recent Stand Up To Cancer event. Now, I am not a Taylor Swift fan and couldn't tell you any song she has ever performed. Not because I don't like her, but just because I don't know her. It's not the genre of music I listen to on a normal basis. However, this particular song grabbed me from the very beginning. By the time she got to the third line of the song, I was already in tears and continued to cry for the remainder of the song. It is such a poignant and moving song that I listened to it over and over for about 2 hours.

This song could have easily been something I wrote myself. From what I've been able to gather, Taylor wrote this song after reading the blog of a little boy named Ronan. She also gives co-writing credits to Ronan's mom. Ronan died from neuroblastoma just 4 days before his 4th birthday & 46 days after Caleb died of DIPG. It is such a fitting song. I understand the depth of emotion in it and feel the pain of loss in every single word.

"Ronan" by Taylor Swift

I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back

I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bed time and jumping on me waking me up
I can still feel you hold my hand, little man,
And even from the moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you

Come on baby with me
We're gonna fly away from here
You were my best four years

I remember the drive home when the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died

And it's about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
And whispered in your ear

Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital grey
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years

What if I'm standing in your closet trying to talk to you?
And what if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But maybe the miracle was even getting one moment with you.

Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years

I remember your bare feet down the hallway
I love you to the moon and back
 When I heard the line "Race cars on the kitchen floor," I immediately remembered the picture of Caleb on the living room floor with all his cars lined up across the room. That was the line that got me started crying.

Taken March 22, 2009

But the part that really got to me was "And what if I really thought some miracle would see us through? But maybe the miracle was even getting one moment with you." We didn't get the miracle we thought we would get. We got one better than we could have ever imagined.

I have always considered Caleb to be my miracle child. I used to love messing with people's heads about it. I would say, "Caleb is my miracle baby. He was born just 5 weeks after I had a hysterectomy." Everyone would ask how that was possible and I'd say, "The miracle of adoption."

Even the way Caleb came to us was a miracle. Richard & I had tried for 7 years to get pregnant with no success. In January 2005, I finally saw a fertility specialist & had a laparoscopy done. I was told I had severe endometriosis and that my ovaries were already shutting down. My only chance of maybe getting pregnant was in vitro fertilization with donor eggs. Richard and I decided at that point we would try to adopt instead. We got so excited about the prospect of adopting that we went to a garage sale and started buying stuff for the nursery. We managed to score a crib with two mattresses, all kinds of bathing supplies, toys & filled the crib with baby clothes for $100. I should have known then that God had planned a little boy for us because the only baby clothes we got were boy clothes even though we had no idea at the time if we would adopt a boy or a girl.

In March 2005, I was speaking to the lady in charge of an outreach ministry about the preparations for the nursery. She asked if I was pregnant and I told her no and that we were planning to adopt. I asked her to let me know if she ran across a woman who was looking to make an adoption plan. She looked at me with surprise and said, "You are not going to believe this, but I have one right now!" She then said she was getting ready to go to Germany for a month, but would head straight over to see the woman and tell her about us. I knew right then that God was orchestrating something miraculous for us.

We got in touch with D and I finally met her in person on (get ready for this) March 25, 2005.  Needless to say, many more things occurred during the remaining process that confirmed what a miracle child he would be.

I firmly believe Caleb was my little miracle. The way he lived his life with such total dedication to God was absolutely amazing. The way he bravely fought the tumor that would eventually take his life was nothing less than miraculous. He taught me so much about living, laughing and loving. I am truly blessed to have been chosen to be his mom.

This Wednesday, October 10th, will mark 2 years since Caleb's diagnosis. Since this weekend has already been a bit emotional, I am asking for extra prayer to help us get through this week. I don't want to be home and I don't want to be alone. I still have occasional flashbacks of that day. 

We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


Monday, August 20, 2012

Happy 7th birthday, my sweet boy.

Caleb,
Today would have been your 7th birthday. I still vividly recall the day you were born. We picked up D and took her to the hospital early that morning for an induction. Everything seemed to be progressing so slowly. Your dad & I sat in the room with D & her sister-in-law playing cards & reading books, while Grandma Kitty worked on crocheting a blanket for you. We were all so exited that we would get to see you soon. You, however, didn't seem quite so eager to see us yet. Things seemed to be progressing so slowly through the afternoon. Then towards evening, D started getting violently ill & sent everyone out of the room.

As we sat in the waiting area, it finally hit me that I would never get to experience what she was going through myself. I cried for what I knew I would never have. Then I cried some more because I realized what a huge sacrifice she was making in trusting us with you. I would be the one to reap the benefits of the pain she was experiencing at that moment. I would be the one to comfort you in the middle of the night. I would be the one to hold you when you were afraid & tell you everything would be okay.
 
As I thought about those things, I was called back into the room with her because it was finally almost time for your arrival. Your dad waited with Grandma in the waiting room. I was so blessed to be at D's side as you made your grand entrance into the world at 9:21 p.m. The doctor let me cut your umbilical cord. I didn't realize how tough it would be to cut. I thought how significant it was that I was literally severing the bond between you and her. Just as I made the final cut, you decided to urinate all over all of us! You hit me, D, the doctor & the nurse in one shot!



They wrapped you up and started to hand you over to D. She stopped them and said, "No, hand him to Angela. SHE is his mommy." I was shocked. I couldn't believe that I would be the first one to hold you. I certainly didn't expect it. I started crying again as they placed you in my arms for the first time - all 6 pounds, 6 ounces. You were so beautiful.


I never dreamed that I would hold you in my arms for the final time a short 5 years, 7 months & 5 days later.




I wonder about so many things that could (and should) have happened today:
  • What theme would you have chosen this year? You'd already had Pooh Bear, Thomas the Tank Engine, and Transformers. I bet it would have been a Cars! or Star Wars theme.
  • What friends would you have invited? Would it have included friends from school?
  • Would we have had your party at home or somewhere else?
  • What gifts would you have received?
  • What would you look like today?
  • How much would you have grown since your 5th birthday?
Instead, we "celebrate" this day without you. That seems so strange. How is it possible to celebrate without you here? My heart seems to break a little more with each moment you are gone. We miss you so very much.

You dad & I went out for a bit last night and talked about how we're coping. I told him that you now have two birthdays to celebrate -- the day you were born to us on Earth (8.20.05) and the day you returned to Heaven (3.25.11). I thank God so very much for the time we had with you in between.

Your dad posted this note on Facebook last night & I thought I share it here as well:

Happy Birthday, Caleb!

Thoughts from your daddy.

I know you went home far earlier than I would have liked at 5, but tomorrow you would have turned 7 years old. We love you and miss you soooo much.

Your mom and I saw a movie last week that made us think so much about you and our life together. The Odd Life of Timothy Green. I remember your mom and I praying so long and going through so much for years to find you. Only to have you in our life for just 5 1/2 short years. In this movie too after trying so long, this couple finally had a son. Only to have him in their life for a season. The pain I have in my heart because you are gone is over shadowed by the joy I have that you are now healed and in the arms of Jesus.

Your brother, Caden misses you too. EVERYTHING he does is about "my brother liked this, saw this, loved this, etc...". It seems he speaks about you everyday now.

Tomorrow we will be celebrating by enjoying some of your favorite things you liked while you were here.

Looking forward to that day when I can once again hold you in my arms.

I love you to infinity and beyond. It's the beyond part that's the hardest.


We'll be sending you some gold balloons this afternoon at 4pm. Be watching for them. Then we'll come home and eat some of your favorite foods: steak, fried shrimp, macaroni & cheese with pineapple upside-down cake for dessert. It's not the same as having you here with us, but it will have to do until we are reunited once again. Have Jesus give you a huge hug from us. We love you.

We still miss you every moment of every day. You are always in our hearts, always in our thoughts, and are loved today, tomorrow, in ALL ways to infinity and beyond. And, Daddy is so right -- it's the beyond part that's the hardest.

All our love,
Mommy, Daddy & Caden

Tuesday, July 17, 2012

Too Late

I'm going to rant a bit right now, so please bear with me. I'm being open and honest with how I feel. I'm baring my heart for all to see. I'm hurting. I'm upset. I'm grieving.

I got a letter in the mail today from St. Jude Children's Research Hospital today. You know the one I'm talking about -- please send us a contribution/donation to help find ways to cure childhood cancer & accept these address labels with our thanks. It has a pic of a bald child who's fighting cancer on it. Well, not all children who have cancer are bald. Some of them aren't even able to have the chemo that causes them to lose their hair. And some of them are on low enough does of chemo that they don't lose their hair. I guess they figure that a pic of a bald child will have more impact than a child who still has hair. Try telling that to a mother who's child is fighting for his life and wishes beyond all reasoning that he could have chemo to try to save his life, but knowing it isn't possible.

It goes on to detail approximately how many patients they're treating each year & tell that thousands more will develop cancer. The inside shows a graph of average survival rates for several types of childhood cancer from 1962 to 2007.


But wait! I don't see DIPG on this list. Oh, yeah, I remember why now. That's because there have been NO significant strides in treatment or cure for DIPG in over 25 years. The mortality rate is still around 85% within 1 year of diagnosis. An article from St. Jude's own website says it quite clearly:
"High-grade gliomas are malignant tumors that arise from glial cells in the brain or spine. When a high-grade glioma originates in the brainstem, the tumor is known as DIPG. Fewer than 30 percent of children with high-grade gliomas survive the disease. For patients with DIPG, survival rates are even more dismal, hovering below 10 percent."
Great progress on that one, St. Jude. NOT!! And, I think the whole "hovering below 10 percent" bit is a little misleading. My guess is that it's closer to "less than 5%."

Notice that the section under the graph gives a list of warning signs. In my mind, they left off a few important ones: intense recurring headaches, slurred speech, loss of motor functions (worsening handwriting). Since Caleb died, I constantly monitor Caden for any sign out of the ordinary. It borders on paranoia at times. I'm much more likely to take him to the doctor for a simple headache now than I ever would have in the past. My greatest concern is that Caden will end up with cancer as well. My second greatest is that he turns into a hypochondriac because of my fears of cancer.

What upset me the most about this letter was the post-script. It says,
"I hope that your own family never suffers the tragedy of losing a child to an incurable disease. At St. Jude, we're fighting to conquer these killers, and one day someone in your own family may live because we succeeded."
When I read that, I felt as if I'd just been kicked in the stomach because, quite frankly, St. Jude, you're a little too late on that one. Our family HAS lost a child to an incurable disease, almost 17 months ago, in fact. St. Jude, do you really want a contribution from us? If you'd checked your files, you'd find you have an extremely significant contribution from us for your research -- our son's brain stem & tumor! We made that contribution to St. Jude for research in the hopes that no other family will have to go through what we did. It breaks my heart to think another mother will get your letter in the mail and cry like I did because she knows it's too late. Oh, and by the way, you can have your stickers back. I don't need them & I don't want them. It's too painful a reminder right now.


Now, don't get me wrong. I TOTALLY support what St. Jude is doing. It's just that the timing for it really sucks right now. I knew I shouldn't have even opened the envelope, but I did it anyway. I guess I was kinda hoping that it was a note saying they've made progress with treatment and/or cure for DIPG or even a "thank you" for the contribution we already made.

St. Jude hasn't done anything wrong and they are doing a tremendous amount to help stop childhood cancer. They have made significant strides in many types of childhood cancer. They depend on the contributions of others to help them continue developing treatments & searching for cures. Today was just one of those emotionally tough days and the wrong day for me to get that letter. I hope no one allows my little emotional tirade to dissuade them from supporting a wonderful place that is devoted to caring for children. Please remember that this is an emotional response from a grief-stricken mother & nothing against St. Jude or their mission.

We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


P.S. Although this letter from St. Jude came too late to help our son, it's not too late to help make a difference in the life of another child. Please consider a donation to St. Jude Children's Research Hospital.

Sunday, June 3, 2012

And the Scrapbooking Begins!

As I mentioned a couple weeks ago, I wanted to start scrapbooking since I fell in love with it at Camp Sol. I even set up a temporary station in the closet of the guest bedroom. Well, that didn't last long. There just wasn't enough light in there to do anything. Once we got Richard's new shed for the back yard, we were able to move some file cabinets out of the office into the garage & make room in the office for my scrapbook stuff. I now have everything in the office again and finally gotten a chance to sit down and create my first (and second) scrapbook page.

Caleb is so excited about getting a baby brother. He desperately wants someone with whom he can play football. Caden Joshua Huffines has arrived! Born on November 27, 2008 (yes, Thanksgiving Day), at 2:16 p.m. He weighs in at 7 lbs, 7 oz (1 lb, 1 oz bigger than Caleb) and is 18 3/4 inches long. When Caleb finally got to see Caden and hold him in his arms, he looked up at Richard and said, "Daddy, why is he so small?" I think he expected to be able to play football with him right away, but Caden is only slightly bigger than the football right now!
From the moment we brought Caleb home from the hospital until the moment he left home for the last time, Samson was at his side. Caleb adored Samson and the feeling was definitely mutual. Caleb loved getting “kisses” from his best friend, kicking back with “biscuits” together, & playing chase in the yard. Samson just loved the attention. Thanks, Samson, for being a faithful companion & loyal protector for our little boy while he was with us. 


After I got these two pages finished,I realized I was going to need more room! Richard has been so supportive of this endeavor. He took me to Lowe's yesterday to find a shelving unit to put in my scrapping area to house more stuff. I wonder if he realized when I decided to do this just how much would be involved. But I am so thankful that he is on board with this. I have such an awesome man of God for a husband and I love and respect him so very much. My shelving unit is already assembled. Once I get my supplies organized on it, then I can get back to scrapping. I have the layout for my next page already in my mind and can't wait to see how it unfolds on paper. Well, actually I have the next several layouts planned out in my head, but I'll take it one page at a time.

 We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Wednesday, May 16, 2012

Time to Catch Up

I know it's been a while since I last updated. There have been many times that I sit down to write and all I do is cry. Maintaining this blog has been more difficult than I imagined it would be. I feel Caleb's absence more intensely when writing about how we are doing without him. It hurts so very much. I stay as busy as I can so I don't have time to think about how much I miss him. Then, all of a sudden, I'll break down and cry. About that time, Caden will walk in and say, "Mommy, it's okay to cry if you miss my brother. I miss him, too."  Such wisdom from one so young.

It's really hard to remember what's been happening the past few months. Still feeling like my head is in a fog. Richard's new job is going well. Caden's last day of pre-school is tomorrow. I'm still enjoying my job at Caden's pre-school and looking forward to the fall and a new batch of kiddos to love on.

We've made it through a few more "firsts": new year's, Richard's b-day, valentine's day, bereavement camp, anniversary of Caleb's death. We've now finished the first year without him. It's not been easy, but we have survived. I decided that it was time to redecorate Caleb's room (now the guest bedroom) in his memory. So, it's slowly becoming the "Butterfly Room." Tried really hard to get it done by his angelversary date, but that didn't happen. We still have a couple things to hang up on the walls & maybe a few more knick-knacks around the room.  Hopefully, I'll post some pics of the room soon. Kinda waiting til we get the rest of the stuff on the walls first.

The closet in that room is being temporarily converted to a scrapbook station. While at Camp Sol in March, I discovered how fun scrapbooking can be when I have more than 30 minutes to work on something. I've gotten a ton of supplies together and am just about ready to start putting together my first page for my first scrapbook.

We also bought a beautiful metal butterfly to put out at Caleb's burial site. I've even agreed to go with Richard when it's placed. Still not sure I'm ready, but I've given my word and I intend to keep it.  I've not been able to visit the site since the memorial stone was placed a couple weeks after burial. I've been to the property a few times, but haven't gone near his grave. When we're in the area & Richard wants to go, I stay in the vehicle and keep my eyes closed. It's kinda strange. I vacillate between knowing that it's only Caleb's shell there and thinking that my baby is in that cold ground. And it's the whole "my baby is there" thought that has kept me away. 

This weekend we will be taking our first family picture without Caleb. It's a bittersweet thing to think about. Part of me says we can never have a "family" picture done again because part of our family will always be missing. Another part acknowledges that this is part of our process and a step that needs to be taken to keep living instead of just existing. Honestly, if I hadn't found a really good Groupon for the pics, we probably still wouldn't be having them done yet. But, I did. It's scheduled. We're going to go. And by golly, we're going to enjoy it!

So, that's about it for now. I think I'm going to go color my hair so it's done before pics on Sunday.




We still miss Caleb every moment of every day. He is always in our hearts, always in our thoughts, and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Sunday, February 12, 2012

Prayers Needed ...

As we are nearing Caleb's one year "angelversary," things are getting tough for us. We are remembering more of the things we were going through at this time last year, the increased medical issues, the appointments with doctors & specialists, and the tough talks we had to have. I remember the frustration of not being able to stop what was happening to Caleb. But at least I KNEW what was wrong with him.

Can you imagine being in the hospital for 4 days with your precious child and having the doctors tell you that they don't know what's wrong with your child? Well, that's exactly what is happening to a co-worker of mine. So tonight, I am asking for prayers from all my friends, family and blog followers.

Nory Mae, a beautiful 2 1/2 year old classmate of Caden's, was admitted to the hospital on Thursday night with a high fever that has been going on for a couple of weeks. Doctors still have not been able to find the underlying issue causing the problems in her little body.

So, I am asking for prayers for guidance & wisdom for her medical team, a quick diagnosis, fast and easy treatment, and complete healing for Nory Mae.

Nory Mae and her family need our prayers right now. Please take a moment to intercede on their behalf.

Thank you.



We still miss Caleb every moment of every day. He is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Monday, January 16, 2012

God, You Are Faithful

Where do I start? We made it through our first Christmas and New Year without Caleb. It wasn't easy, but we did it. My mom and dad came up to spend Christmas with us. Dad had to head back right after Christmas, but Mom stayed until after my birthday, then headed home on Dec. 30th.

We drove down to my MIL's for Christmas Eve. It was hard being around so many people without Caleb there, but I felt him near. We were given a beautiful memorial book of Caleb made by my SIL with pictures she had taken from Caleb's last day through the Celebration of Life service the next weekend. It is proudly displayed over our fireplace. Thanks again, Pam, it is fabulous!

January 2012 has brought many changes to our family. Richard's job ended at the end of December, so he's job hunting now. I started working at the Early Learning Center that Caden goes to on Tuesdays & Thursdays teaching a room full of 3-year olds. What was I thinking!?!? Actually, I'm having a great time and I LOVE the people I work with and the kiddos in my class.

Since we changed churches back in November, I haven't really been singing. We've now officially joined our new church (CrossRidge Church) and I've decided to jump back into serving again. I auditioned for the praise team and have started attending rehearsals. I'm looking forward to being able to help draw people into God's presence.  The first rehearsal I attended, we were going over a song called "Never Once" by Matt Redman. I was really focused on learning the song at the time and didn't have a chance to really let the words sink in. As we sang the song on Sunday morning, I really took a look at the lyrics and realized the truth in it. Never once did we EVER walk alone during Caleb's battle. God was with us every step of the way. We can clearly see how much He's done for us during that battle. We know that every victory was His power in us. It's what allowed us to continue. We have scars, we still struggle, but we can truly say with joy in our hearts that God is Faithful!

I know that some of you reading the blog are going through intense times in your lives right now. Things around you seem to be spiraling out of control. I pray you are comforted by the knowledge that God is faithful and is right there with you. I've attached the song here.


Never Once - Matt Redman (Worship with Lyrics)


If you live in the Little Elm area and do not have a church home, I'd like to invite you to worship with us at CrossRidge Church. One of the many things that drew us to CRC was how much they reached out to us during the darkest time of our life without asking for anything in return. They loved on us, prayed for us, cooked for us, and stood beside us even though we didn't even attend their church! They LOVE to serve their community and it shows in everything they do. I am so pleased to be a part of CRC.

We miss Caleb every moment of every day. Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard and Caden