Monday, December 12, 2011

Ramblings From A Broken Heart

Our first Christmas without Caleb is approaching and I'm struggling more as the day draws near. I feel so conflicted with the myriad of emotions twisting and turning inside me. I am joyful that he is spending his first Christmas in Heaven. I am grieved because I selfishly want him here with me. I'm angry that cancer stole his life from us so quickly. I feel guilty because I keep wondering if I hadn't blown off some of the things I'd noticed earlier in the year, would he have had a better chance of survival or at least of living a few more months. I struggle with our decision to even treat the tumor because the steroids changed him from my sweet, loving, happy boy into a sullen, angry, hateful, "starving" boy I didn't even recognize. Could he have had a happier final 5 1/2 months if he weren't on so many drugs and going through so many procedures? How many things would I have said, "Yes" to instead of "No" if I'd known it would be his last chance? Why did we even bother with the two surgeries in January when he was gone two short months later? Of course, no matter how many questions I have, I will never know the answers.

I wonder sometimes how I am able to have so many days where I hardly think of him at all. Then there are days when I am crushed with grief and can barely breathe.

Every Christmas since Richard & I got married, we've purchased a new ornament for our tree with the year on it and most of the time a significant event commemorating that year. Several years in a row we bought the Make-A-Wish ornament, never realizing that one day we would be a family receiving from that organization. Last year's ornament was a heart with a snowflake on it that we had engraved with "Faith, Hope & Love." Since we never put up a tree last year due to travel, this is it's first year on the tree. Even though about 1/4 of the ornaments on our tree were made by Caleb, those weren't the ornaments that made me cry. The one that got me was the 2009 ornament we got that had a space to put a family picture in it. I realized at that moment that we'd procrastinated too long on getting a family picture done and any future family pictures would always be without Caleb. This year's ornament is a remembrance ornament that has his name, date of birth, date of death & "Loved to Infinity & Beyond" engraved on it. There is a place for his picture in that one, but it just isn't the same.

We never lose the ones we love - they live on in our hearts.



Caden just turned 3 and has recently begun telling us at least once a day that he misses his brother. He's started having night terrors and is acting out. I just don't know how to handle his grief on top of my own other than to say it's okay to be sad and we can also be happy when we remember fun things we did with Caleb.

And, if it wasn't bad enough that we've lost Caleb this year (with all the things that come with that), Richard's dad passed away 2 months after Caleb (unexpected trip from Dallas to south Florida), our A/C went out, the hot water heater broke & had to be replaced, 2 major water leaks, over $5k in vehicle repairs since both of our vehicles are over 10 years old - the truck looks like it may have to be replaced soon, Richard's job ends Dec 31, and my BFF's husband died the week before Thanksgiving from colon cancer (just a few months after diagnosis). So, Merry Christmas to us, right? When is it going to stop? I've had enough already.

I really just want to bury my head under the covers with some sleeping pills and not wake up until January. Notice I said "I want to" and not "I'm going to." I will keep going and will make it through each day just as I have for the past 14 months -- with the help of Jesus. Just to reassure everyone, I'm NOT going to do anything stupid. I have too much to live for and too many things left to accomplish.

I've kept up with the blog since Caleb was diagnosed. In the beginning, there were lots of comments from people all over the world and it was comforting to know people were praying for us. When he died, the outpouring of love was tremendous. But as the months have passed, the notes drop off, the comments stop, all is quiet. Life goes on around us and we are being pulled along for the ride. Babies are born, friends move on, people change. I'm slowly adjusting to life without Caleb, but it would be nice to hear that people are still thinking of us once in a while -- to know we are not alone. I know we're not alone, but sometimes it sure can feel like it. It's hard for others to understand what we're going through because they haven't been there. They can't see that not only is my heart broken over Caleb's death, but there is also a piece of my heart that will forever be gone & will never totally heal. They don't understand the fear I battle every time Caden says his head hurts or a new bruise shows up & I don't know how it got there.

Okay, I've had my "David" moment of totally exposing my pain for all to see, now it's time for the up side. I know that God is holding me close or there is no way I would be in as good a shape as I am. I continue to lean on His strength, grace, comfort & mercy to uphold me. I long to be in the physical presence of my Lord to celebrate His birth with him and Caleb gets to do that now!

I know that God is still in control, still on the throne, and still worthy of all my praise, adoration & worship. He can handle my ramblings. He can heal my heart. He has not abandoned me in my time of grief. He guides my path.  And I love Him more with each day that passes.

Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden

Monday, November 28, 2011

The Holidays Have Begun

Wow! It's so hard to believe that Thanksgiving has come and gone already. There are days that seem to drag by in extreme slow motion, like I'm trapped in a time dilation field. Other days fly by so quickly, I wonder what happened.

This past couple of weeks has seemed to fly by. We took a mini-vacation from Nov. 16 - 20. We drove down to Florida to visit my Nana, who turned 90 on the 19th. It was our first major road trip without Caleb. It was so strange not hearing him in the back seat. He would make funny faces and send Caden into fits of laughter, which, of course, caused us to laugh as well.  This time, we used a DVD player to keep Caden occupied. We also drove at night as much as we could, so he would sleep through most of the drive time. What was originally planned as a 20 hour trip down turned into 29 hours from the time we left the house until we checked in at the hotel. That wasn't all driving time, thank goodness. We stopped at Mom & Dad's house to pick them up and stayed there for about an hour. We had several gas and bathroom breaks and stopped for a couple hours in Wildwood, Florida.

Dad wanted to go to 75 Chrome Shop in Wildwood to pick up something for his truck. While we were there, I noticed several custom mirrored tags. I got to wondering if they could make a Team Caleb tag for me. I borrowed Mom's Team Caleb tote bag & headed to the back of the shop to talk to Mike. After looking at the tote bag, it was determined that a Team Caleb tag could be made, but it wouldn't look exactly like the original logo. Mike made up a draft for us & it looked fantastic! As soon as Mom found out what we were doing, she decided she wanted one for herself. Mike told us it would take about 30 minutes for each tag, so we went to breakfast. When we got back to the shop, Mike was almost done with the tags. We asked if he could save the template, because we figured that some of our friends and family might want one once they saw it. He gave us a few business cards and said to have them ask for the "Team Caleb" custom mirrored tag. It cost about $35 and was well worth every penny!

I have yet to be able to take a picture that does this justice!
After we left 75 Chrome Shop, we headed down to Vero Beach, FL. Caden couldn't wait to go to the beach, but it was dark when we arrived. On Friday morning, we got dressed to go to the beach. It was Caden's first time seeing the ocean and playing on a REAL beach. (Sorry, Little Elm, but I don't consider the man-made beach on the lake at the park to be a real beach.) We drove down to Jensen Beach so I could meet a friend (Misty) from near West Palm Beach. When we got out of the van in Jensen Beach, it was sprinkling, very windy & did NOT feel like the 74 degrees the weather channel said it was supposed to be!!!!!

We ate lunch at Subway, then headed across the street to the park & beach. As we walked toward the water, we already knew we would not let Caden in the water because of how cold it was, and the red flag on the lifeguard station confirmed our decision. Standing at the top of the sand dune, we watched 8 - 10 foot swells roaring towards the shore. The wind was blowing so fiercely that sand hitting our bare legs felt like tiny needles piercing our skin. Caden immediately hid behind me. There was no way he was sitting on the beach to play there, so we headed to the other side of the sand dune and let it block the wind for us. He sat and happily played on the beach for almost an hour.

We got back home around 2am on the 21st. We washed everything and repacked in anticipation of heading to Gma's house for Thanksgiving weekend. We drove down Wednesday night, had a wonderful Thanksgiving lunch with family and enjoyed watching all the cousins interacting with each other.

Black Friday brought a wide range of emotions. I wasn't really into all the shopping and would much rather have not gone out at all. However, we decided to have an impromptu birthday party for Caden (11/27) and Emmanuel (12/10) that day. I think the plan was to help keep my mind off the fact that Friday, November 25, 2011, marked exactly 8 months that Caleb's been gone. It helped a little, but I couldn't help thinking about it. Especially since Caden has discovered Toy Story and the whole Buzz Lightyear "To Infinity & Beyond" phrase. When Caden first started repeating it, he'd say, "Buzz Lightyear, 1, 2, 3 & beyond!" He didn't quite understand the words until I told him. Of course, each time he said, "1, 2, 3 & beyond" he was leaping onto or off of something. I caught him standing on a bar stool and leaping OVER the couch one time. My heart jumped right into my throat!!! As soon as he safely landed, I informed him of the negative consequences of doing that again.

We decided on a Toy Story theme for the boys and off we went to brave the crowds at Wal-Mart. I managed to snag the last Buzz Lightyear they had on the shelf for Caden & picked up a mini-RC with Woody for Emman. They LOVED their gifts. Caden has barely set Buzz down since he got it. He wants Buzz to sleep with him, go to the bathroom with him, go in the van with us every time we leave, etc. If he only knew how much I want to cry every time I hear him say "To infinity and beyond."  I'm getting better because I know it's not fair to deny him something he likes just because it's hard for me. I laugh and smile with him as he plays.

We had a very quiet celebration after church on Sunday for Caden's 3rd birthday -- just Richard, Caden and me. We watched some football, took naps, played with toys and went to bed. Today was Caden's well-child visit. He's right on target for both height & weight (50th percentile). Doc seems impressed with Caden's vocabulary and the number of words he knows. Our only concerns are Caden's allergies (which we knew he would probably have based on family history), he's still banging his head when tired and we're now dealing with night terrors again. He had them as an infant and they had gone away. We think they are back because of grief. Caden mentions at least once a day how much he misses his brother & that he's sad. The good news is that Caden doesn't even remember them. The bad news is the night terrors really freak Mommy out when there's nothing I can do to keep it from happening or to stop them. All I can do is try to keep him from hurting himself during it.

I've decided to try my hand at blogging in a different direction thanks to my friend, Staci. I'll keep this blog for updates on family stuff and have started a new blog for my new blogging venture. Check it out --  Always In His Heart



Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.
Angel, Richard & Caden

Tuesday, October 25, 2011

Peace in the midst of the tempest...

I was talking to Richard the other day and mentioned how amazed I am at the sense of peace that we have had these past few months. I've been following several other DIPG families as they fight for their childrens' lives. Some are still fighting and some have passed into eternity. It somehow seems strange to me that we don't seem to be struggling with the depth of grief that some of them are. Some are lashing out at God and those around them. Some are struggling with guilt over things they said and did. A few are almost paralyzed with grief and fear that the same thing may happen to their other children. I have only seen or read about a couple whose experience seems to mirror our own and it is very evident in their writings that they (like us) have a very deep, abiding, loving relationship with Jesus Christ.

One of the mom's (Bonny Dales) wrote:
The gap that Roan has left behind is sometimes too hard to bridge, all we can do is pray for healing, strength and a continued faith that God has not let us fall and will continue to hold us in the years to come. This is a life sentence, although I could understand how some parents may see it as a death sentence. It is a choice we make - to get up everyday, to choose to see the world in a good way, to choose gratefulness over bitterness or jealously.
Now, I'm not implying that any of the others do not have a relationship with Christ or even knocking the stage or level of grief they are experiencing. I know that everyone grieves in different ways, at different stages & at different times. I would never dare presume that I am doing anything any better or worse than another grieving parent. However, I am humbled and amazed at the strength we have been given through Christ.
Philippians 4:13 (Amplified)
I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency].
I draw on that strength on a moment by moment basis. There are times that I feel overwhelmed and wonder how I can face the day. Then I think about what Caleb endured during those long 5 1/2 months of treatment (and even the few months before diagnosis) and realize that I have to shake off the despair that seems to overshadow me because he would not want to see me like that. Every time he saw me cry, he would reach over, give me a hug, wipe the tears from my eyes and say, "It's okay, Mommy. I'm here. You're going to be okay." His love was apparent in everything he said and did, but was still just a shadow of the love of Christ. I know that Christ holds me in His arms and whispers, "It's okay, Angel. I'm here. You're going to be okay."

When Caleb was first diagnosed, Richard and I determined that no matter what happened, we wanted God to be glorified in all of it. We made a conscious decision that we would not walk in guilt or regret over things we did or said before his diagnosis or even things we didn't do. We chose to rejoice in the Lord and turn our cares over to Him. We praised Him for the small and the large things. I can honestly say that we were even able to praise Him when Caleb passed away, because we know that Caleb is in the presence of God and is no longer in pain. We thanked Him for everything -- the staff we interacted with, the other families we met, for Caleb's complete and total healing. We sought after God with our entire being because we couldn't imagine going through that storm without Him.
Philippians 4:4-8 (Amplified)
4 Rejoice in the Lord always [delight, gladden yourselves in Him]; again I say, Rejoice!
5 Let all men know and perceive and recognize your unselfishness (your considerateness, your forbearing spirit). The Lord is near [He is coming soon].
6 Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God.
7 And God's peace [shall be yours, that tranquil state of a soul assured of its salvation through Christ, and so fearing nothing from God and being content with its earthly lot of whatever sort that is, that peace] which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus.
8 For the rest, brethren, whatever is true, whatever is worthy of reverence and is honorable and seemly, whatever is just, whatever is pure, whatever is lovely and lovable, whatever is kind and winsome and gracious, if there is any virtue and excellence, if there is anything worthy of praise, think on and weigh and take account of these things [fix your minds on them].
We have come to more fully understand the peace Paul talks about in his letter to the Philippians. It's so very hard to describe it, but very tangible to us. We choose daily to think on positive things to keep us close to the presence of Jesus.

That doesn't mean that we don't have times where we totally lose it. For instance, today marks exactly 7 months since Caleb passed, so it's a bit of an emotional day already and I've been trying to keep myself occupied. In today's mail was a letter addressed to Caleb from the dentist reminding him that his dental check-up is "now several months overdue." I started to cry and then got angry at the dental office for sending that stupid letter. I thought to myself, "That's because he's been dead for 7 months as of today. I've told you several times that he's dead and asked that he be removed from your system. What more do you want -- a copy of his death certificate?" I allowed myself to rage for a couple of minutes then turned it over to God. I sought refuge in my Savior's arms. I told Him how much it hurts to receive mail for Caleb from people who already know he's gone. It's difficult enough from people who don't know, but it's a little worse from people who do. I took the letter to their office, spoke gently to the office manager and again requested that we not receive any more mail for Caleb. I teared up again, but remained calm. She apologized, took care of the situation, and I left. 

There have been times when I'm alone that I cry out to God.  "I don't understand why this had to happen. I want my baby back. What is Your plan to make something good from this?" I'm not mad at God, but the situation and still I yell. I cry. I scream. I know God can handle it. He knows my pain better than I do. He has experienced loss on a much greater scale than I can ever imagine. I let Him calm me down and give me peace in the midst of the tempest. And I know that whenever I need Him to do so, He always will.



Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Monday, October 10, 2011

Our first "One Year Mark" -- Diagnosis

The day started off normally enough. We woke up a little late and were running around trying to get ready for church. We had to be there early because Richard was ushering that morning, but I was not scheduled to sing. I had already pulled Caleb's clothes out for him and told him to get dressed. I was getting Caden dressed and fussing at Caleb for taking his time getting dressed. He had been taking a long time to get dressed for a couple of weeks and we would fight about it every single morning. He kept saying, "I can't do it." I knew that he knew how to get dressed and thought he was just being difficult. I hollered at him from the other room, "Get dressed NOW! You know how to do this."

"But, Mommy, I can't," he whined. That blasted whining was getting on my last nerve.

We finally got everyone ready to go and headed off to church. By the time we got there, I was already feeling frazzled and needed to calm down. One of the ladies there could tell I needed a little time and offered to take the boys to another room and play with them for a while. I welcomed the offer.

Around 9:45am, I went to get Caleb to take him to his classroom. Berry asked, "Caleb's right-handed, isn't he?"

"Yes."

"Well, he hasn't been using his right hand all morning. He's been using his left hand to do everything and his right hand is just hanging limp at his side."

I said I'd check into it and helped him up. When I touched his right hand, it felt like ice. I reached over to check his left hand and it was warm to touch. I led him towards his classroom and noticed he was having extreme difficulty walking. It was as if he was using pure momentum to propel his right leg forward. It swung awkwardly around as he walked. He was slurring his words when talking and had this glazed look in his eyes. The right side of his mouth was hanging down somewhat and he was drooling a little. I started getting very concerned that something serious was wrong.

I went over to Richard and said, "Honey, I don't think we can wait until tomorrow to take him to the doctor. I'm calling the pediatrician now."

I stepped outside with Caleb & called our pediatrician. After the answering service connected us, I began telling Dr. P. what was going on with Caleb. After I described his symptoms, Dr. P. said, "Stop what you're doing right now and take him to Children's in Plano immediately. I want him there because if they need any scans, Children's is equipped to handle it."

I knew at that point that something was truly wrong. My heart started pounding wildly inside my chest and my stomach constricted. I began to cry, rushed inside to Richard, told him what the doctor said and that we needed to leave immediately for the emergency room. I got Caden from his classroom while Richard slipped inside the sanctuary to tell Pastor where we were going & why.

As we drove to the ER, Caleb was getting very upset in the backseat. He started yelling, "I hate you. You're the meanest parents EVER! I want out of this seat NOW!!!" He wasn't acting normally at all. Our sweet little boy had turned into this raging, screaming, angry child that we didn't recognize. Richard and I started guessing what could be wrong with him. We guessed several things, but weren't even close.

When we got to the ER, we took him inside and began the check-in process. As I was explaining his symptoms, a nurse was walking by the door. She backed up and said, "Say that again." I did and she said, "Come with me right now."

We walked through a full waiting room and went straight back to a room. I know that they take cases out of order based on the seriousness of the condition and I tried desperately not to panic. Within two minutes there was a doctor in the room with us and it was all I could do not to cry in front of Caleb. I didn't want to frighten him, but I knew having a doctor with us that quickly was not a good sign. She asked him his name and he slurred out, "Caleb." She then said, "Hi, Caleb. We're going to play a game now. Can you hold your arms out in front of you like this and pretend to fly like Superman?" He held his arms out and the right one was slightly lower than the left. She then said, "That's great. Now close your eyes." The moment his eyes closed, his right arm fell. She next had him stand up and try to walk along a line on the floor. He couldn't do it. She turned to the nurse and ordered an immediate CT scan.

Caden began fussing so I took him out to the waiting area to feed him. Caleb was already hungry, but they wouldn't let him eat and I didn't want to make it worse by feeding Caden in front of him. Caleb was taken for his scan and shortly thereafter Richard came to get me from the waiting area.

As I walked back down the hallway with Caden, I noticed an ambulance crew hanging out near Caleb's room. I remember saying a quick prayer for the child they were there for. When we went inside, the doctor asked us to sit down. She said, "The CT scan shows a mass near the base of his brain stem. We don't know what it is."

"Is it cancer?" we asked.

"I don't know. All I can tell you with certainty is that something is there. They'll run more detailed scans downtown. We don't have the people on hand right now to do an MRI. We're going to transfer you downtown. The ambulance crew is already getting things set up. One of you can ride with him."

I knew I wouldn't be able to drive downtown and asked if I could ride with him. Richard said okay, grabbed Caden and told us he'd meet us there. He called his mom again to update her and she said they were already on their way towards Dallas.

Then the ambulance crew I had seen outside Caleb's room brought the gurney into our room. I managed to hold it together until Caleb was settled in the ambulance. As he watched Teenage Mutant Ninja Turtles on the ride downtown, I broke down in the front seat.

I thought we would be going to the ER downtown and was surprised when they took us straight upstairs to the Neurosurgery floor. I could barely breathe at this point and was numb. I'm pretty sure Richard was feeling the same way.

Not long after we were admitted to the hospital, one of the neurosurgeons walked in. He told us that because of the location of the mass, there was no way he could operate on it. It was located inside Caleb's brain stem and to even attempt to operate could kill Caleb outright. I tried to comprehend what was going on and felt like the world was spinning around me. I couldn't stand up. He then told us that after the MRI, we would be transferred to the oncology floor and the oncology team would meet with us to determine next steps.

Our nightmare began that day and hasn't stopped yet. It's been exactly one year since Caleb was diagnosed and 6 months/15 days since he died from DIPG. Those two dates -- 10.10.10 and 03.25.11 -- will forever be etched in my mind as the days my world crumbled. I still miss him every day.



Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


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Another DIPG angel's mom wrote this on her blog recently & I thought it very poignant & true:

Tragedy does not wait for permission to enter our lives, it's an unwanted guest and you never know when it may arrive - So appreciate all the moments that are devoid of tragedy- cherish them, capture them and hold them close. My prayer for today is that tragedy stays at bay, that you all have a blessed and happy day and that you take a moment to look up.

Friday, October 7, 2011

A Lasting Impact

Our friends' 11 year old daughter, Enya, had a school assignment to write a paper on a real event in life that made a lasting impact on her and she wrote about Caleb. With their permission, here is her paper.

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Caleb's Last Christmas
by: Enya McDonald


Have you ever heard one of those heart-breaking stories of a young child dying of cancer? Well, I've lived one of those stories, his name was Caleb.

Caleb was a normal boy, adopted as a baby, played football, had a little brother. That all ended when he was diagnosed with a brain tumor. Caleb was a lucky boy, in a way, he had a family that never gave up on his fight for life. His last Christmas was spent with family and close friends. I saw him last at the Scherer's annual Christmas Party.

It was Christmas Eve, as it is every year, I was feeling excited for it was sure to be a wonderful party. The excitement of my birthday (which was only the previous day) had me in an especially festive spirit. My mom sat my brother and me down and told us, "Do you kids remember Caleb?" We both nodded, I felt a knot of concern growing in my stomach. "Well," she continued, "he was diagnosed with a brain tumor..." I thought I was going to puke, Caleb was only five. "The tumor is messing up his body, so he's gonna look...different, so don't stare or anything." At this point my mom and I were both tearing up. We grabbed the presents and got into the van.

I was numb with worry, if it was getting my Mom worked up like this, Caleb wasn't doing well. When we got out of the van, a wave of terror hit my stomach and threatened to spill over in the form of puke. I put on a fake, excited smile and opened the door.

I heard yells of greetings and hugged Mr. Andy, my adopted Grandpa (he's not actually related to me). Then, I saw Caleb and the brief moment of relief I had in Mr. Andy's embrace vanished; I almost broke down crying right on the spot. My heart skipped a beat, my hands got clammy, but I kept a smile plastered on my face. I remember my mother's words and looked away from him, but that image lingered in my mind. He was sitting on the floor playing with a toy fire truck. He was HUGE and couldn't move his mouth well, so he just moaned and yelled the whole time. He was like a swollen one year old. When he saw me, he said my name and reached his arms out towards me; my heart shattered like glass when I saw the look of joy in his face. I set the presents down and gave him a bear hug. I played with him for awhile, but then he started playing with his cousin, Bella. When I got up I felt like a wind-up toy, moving and functioning systematically until I could wind myself up again.

Even now, most of the night after that is a blur. I don't remember who I talked to, or what presents I got. I distinctly remember the look of wonderment on Caleb's face when we turned on all the yard decorations. I remember swelling like a balloon with happiness, pride, hope and sorrow when I saw him trying to walk and get a closer look at the decorations. I felt such pride when he took a liking to the reindeer Christen, Cody and I had taken two days to string. We left shortly after that.

I remember falling asleep that night thinking to myself, "Life is a precious gift and I never want to take it for granted ever again."

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Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden

Saturday, September 3, 2011

2011 Football Season Starts in Little Elm

Caleb,

Today is the first day of football season for LEAYSA. We received word that your football jersey number (89) was retired for this year in your memory. We also found out that Coach Matt's initials and your number are also being placed on the helmets of the team this year.

We decided we wanted to go out to the field for the opening ceremony. Daddy and I wore our Team Caleb shirts and we dressed Caden in your football jersey. It was quite a bittersweet moment to see him in it, but I think you would have wanted him to wear it. Almost every time he sees or hears about football, he hollers, "LOBO BLUE!" He wanted to make sure his outfit was complete so he put on his blue sunglasses and his black and blue hat. He looked like a little rapper. Especially, when Daddy took a picture of him.



When we got out to the field, we saw so many of your teammates and their parents there.  I got a chance to talk to Coach Matt's wife, Jodi. They are coping with his loss as best they can, and, like us, have their moments. We are comforted to know that you and Coach are together. One of your teammates told his mom that the reason Coach went to Heaven was so he could coach your football team there with all your new friends. It brought a smile to my face and a tear to my eye when I heard it.

We were asked if we would join Jodi and her son on the field with the team for the National Anthem and a moment of silence to honor both of you.  I was actually doing okay until we started to walk onto the field and Jodi reached for my hand. We both started crying at that moment. I leaned over to her and whispered, "We will get through this together."

After the National Anthem and moment of silence, we were given a jersey for this year with your number on it. The team also gave Jodi a coach's shirt in honor of Coach Matt.


It is amazing how our community continues to pour into our lives and are now showing that same support to Coach's family.

We love you so very much, Caleb, and miss you more than words can begin to express. Remember, you are always in our hearts and we love you to infinity and beyond.

Mommy, Daddy & Caden

P.S. Honey, please be watching for a few more DIPG warriors who may become angels very soon. Gabby is being admitted to the hospital again and is not doing well. Stella's parents have been told she only has a few weeks left. Oliver's tumor has started to grow again. A little boy from South Africa named Roan will be joining you very soon - maybe even today. Make sure to welcome him and show him around.

Friday, September 2, 2011

Childhood Cancer Awareness Month 2011 - Day 2

My sweet Caleb,

Wow! This is harder than I thought it was going to be and it's only Day 2 of the month. I'm reading stories of other children who are fighting cancer and it breaks my heart daily, especially the DIPG kids. As I read about where they are in their journey, I remember us going through the same things with you. It still hurts to remember, but I have to do it. If there is ANYTHING I can do to keep another family from going through this, I want to do it.

On that note, here's today's PSA...

STOP CHILDHOOD CANCER!




Are you aware? Please help spread the word. Would you do it if it were YOUR child that had cancer? Each year around 13,500 children are diagnosed with cancer in the US. Approximately EVERY 3.5 MINUTES, a child is diagnosed with some form of cancer WORLDWIDE and the unfortunate news is -- it could be your child. Just saying "it won't happen" won't keep it from happening. We never thought it could happen to us, but it did.

Wondering how you can help?
If you use some type of social media, use it to get the word out. Tell a friend or family member (or both). Change your profile pic for the month of September to a gold ribbon or a picture of a child with cancer. Operation Gold 4 Kids on Facebook has an entire album with over 170 pictures that parents have submitted to be used by the public to raise awareness. Donate some money to an organization that supports research and funding. Here are a few...

Wipe Out Kids' Cancer - Dedicated to raising awareness and funding for pediatric cancer research on a national basis. They have raised over $4 million in the crusade against pediatric cancer and spent over 30 years developing programs to not only fight childhood cancer, but to also provide hope and support to kids and families dealing with cancer. WOKC provided us with a small suitcase (free of charge) full of hospital necessities when Caleb was first diagnosed and admitted to the hospital on October 10, 2010.

CureSearch for Children's Cancer - Believes that only research can cure children's cancer. Your support helps fund lifesaving, collaborative research at children's hospitals across the nation, providing patients with global expertise at their local hospital.

My friend, Staci, has set up a fundraising page in Caleb's memory with Alex's Lemonade Stand. ALS says, "Our mission is simple: to raise money for and awareness of childhood cancer causes—especially research into new treatments and cures—and to encourage and empower others, especially children, to get involved and make a difference for children with cancer."  Your donation of $50 will fund one hour of research. They've made donations so simple that you can also text “LEMONADE E76598” to 85944 to make a $10 donation!

And as I mentioned yesterday, Caleb's memorial fund is set up at Children's Hospital of Dallas.



Thank you.
Richard, Angela & Caden


Caleb, you are always in our hearts and loved to infinity and beyond!

Thursday, September 1, 2011

Childhood Cancer Awareness Month 2011 - Day 1

Caleb,

It's time for me to do my part to spread the word. Funding is desperately needed to keep other families from going through the heartache and heartbreak we have. So, it's time for my big month of "Awareness" plugs to my followers. Hopefully, they will pass it on and help spread the word, too. Together, we can make a difference and maybe even save a life!

******
And now, for our scheduled Public Service Announcement:

  • Each school day, 46 children are diagnosed with cancer
  • Each day, 7 children DIE from cancer (Caleb was one of them)
  • One in 320 children will develop cancer by age 20
  • Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
  • The overall incidence rate for childhood cancers has increased significantly by almost 33% during the period 1975 to 2001
  • Cancer treatment can cause serious side effects that may last a lifetime
  • DIPG, an aggressive brain-stem tumor seen in children, has NO known cure. It is 100% fatal. (This is the type of tumor Caleb had.)
  • Neuroblastoma is the most comon solid tumor in children, there is no known cure for relapsed neuroblastoma, cure rates for children over the age of 1 at diagnosis are less than 50%.
  • Relapsed Acute Lymphoblastic Leukemia carries a poor prognosis, 10%-50% survival
  • Leukemia is the most common form of cancer in children
  • Every year since 2003 federal funding for childhood cancer research has been CUT.

STOP CHILDHOOD CANCER!

The gold ribbon is the symbol for childhood cancer awareness, September is Childhood Cancer Awareness Month.

These are just a few of the children who have been diagnosed with cancer. Some have just started their fight, some are in the midst of the battle, and some have finished their journey.




Please help make a difference in the life of a child. For more information on how YOU can help, go to Cure Search.

Also, Caleb's memorial fund is still set up at Children's Hospital in Dallas. All donations made to his fund are being directed to the Center for Cancer and Blood Disorders (CCBD) where Caleb was treated. The wonderful CCBD staff is helping to save lives every day. I applaud their efforts and say, "Thank You!"

Please make checks payable to: Children's Medical Center
(in the memo space put: "in memory of Caleb Huffines")

You can send donations to:
Children's Medical Center
Attn: Kathy Friend
2777 Stemmons Frwy Suite 700
Dallas, TX 75207


Thank you!
Angela, Richard & Caden

Caleb, you are always in our hearts and loved to infinity and beyond!

Tuesday, August 23, 2011

Thinking of you...

Caleb,

I was listening to a song today that has really helped me during the past few months. I finally took the time to look it up on YouTube to see if there was a video with lyrics for it so I could share it on Facebook. The one that I found is beautiful and there is a section in the song (2:28) where it shows a little boy with his hands in the air, head tossed back and mouth wide open.

It reminded me so much of you. Even as young as you were, you loved God with your whole heart. I remember watching you run laps around the sanctuary during our rehearsals. You ran and praised with wild abandon and didn't care who was watching.

When you sang worship songs, you sang with your entire being. I can just picture you on the front row in Heaven praising Jesus at the top of your lungs. I bet it's a beautiful, rich sound. I can't wait to hear you sing again.

Until that time, I will continue to rejoice here on Earth. I know my Savior reigns and I rejoice for He lives in me. He truly is "Always Enough."

I've decided to share the video in the blog for those who are still following. I hope it brings comfort to those who need it.



Remember, Caleb, you are always in my heart and I love you to infinity and beyond!

Mommy

Saturday, August 20, 2011

Happy Birthday, Caleb!

My sweet, sweet Caleb,

Daddy, Caden and I want to wish you Happy Birthday, darling. Today, you would have been six years old. But, I really don't feel like celebrating today. It's your first birthday away from us and we all miss you terribly. Honestly, I'm really having difficulty just writing to you today.

This seems to be an extremely emotional week for me. We found out at the end of last week that one of your football coaches (Coach Matt) had been killed by a drunk driver. That was difficult to handle. I guess if there is anything that can be said about a terminal illness is that you have the time to say goodbye to your loved ones. I feel so bad for his family. They didn't get that opportunity like we did.

I have also read about several children with DIPG that earned their angel wings this week. It is so heartbreaking for everyone involved. It seems Heaven is filling up with little children who have fought this horrible disease. I hope you are doing your part to welcome these little ones into Heaven. You always made friends so very easily. I desperately wish we could find a cure so no more families have to suffer.

On that note, September is Childhood Cancer Awareness month. On of the people on the Facebook DIPG site helped edit a picture of you to help spread the word. I agonized over what picture to use. It seems a lot of pictures used for childhood cancer awareness show bald, smiling children. I wanted people to see that it has a very real downside as well. I chose a picture I took of you just hours before you died. I'm not even sure if you were aware of what was going on around you that day, but that picture shows the reality of childhood cancer.


Thursday night was "meet the teacher" night at the schools. I kept seeing all the updates on Facebook and thought, "We should be there, too." You should have been starting school next week with the other kids. Of course, with as much as you missed last year, we probably would have had you repeat kindergarten. Then again, if that stupid tumor hadn't been there, you'd be entering first grade on Monday. I think I'm going to stay off Facebook for the first couple days of next week. I'm not sure I can handle reading all the fun posts of the first day of school. The world around us goes on while our lives are torn to pieces. It's difficult to be happy for others at the moment, but I keep trying.

It was right around this time last year that we started noticing things were a bit off with you. But they were so subtle that it was easy to just dismiss it as normal reactions to all the changes going on at the time. I honestly thought your headaches were no big deal. Since I have had so many migraines over the years, I really believed you were just copying me because you heard me talk about headaches so much, or you were just trying to get a little more attention (that whole "jealous of my little brother" thing). I'm sorry I didn't believe you were really hurting. When I realized how serious the headaches were, I'm ashamed of how I acted. But you always forgave me. Even as the tumor progressed, you never really complained about your head hurting. I remember asking you if it hurt. You would tell me no, but later in the day it would get really bad and you would say it had been hurting all day. It was just finally at a point that you couldn't stand the pain any longer. I wonder if you told me no because you didn't think I would believe you. If that was the case, I am so sorry. I never meant to cause you any additional pain. I'm sorry you had to go through that.

I'm making a pineapple upside down cake (your favorite) to honor you. We're also sending you some balloons for your birthday. I hope you like them. We chose every color of the rainbow and 5 gold balloons. I know it's "technically" your 6th birthday, but you are forever 5, so that is how many we'll send you every year.

I hope you know how very much we love you. You were truly our miracle child and we are so blessed to have gotten the time we had with you. I am comforted to know that we will see each other again. I wish it could be now, but I know that it is in God's perfect will and timing.

You are always in my heart and I love you to infinity and beyond.

Mommy

Wednesday, August 10, 2011

Always in my heart

Caleb,

I was cleaning some things up today and found the small pewter heart I bought for you last year. You were having such a hard time adjusting to school and didn't want to be away from me. (Of course, we know the reason for that now, but didn't at the time.) I bought the heart for you so you could keep it in your pocket. That way, whenever you started to miss me, you could reach in your pocket and hold the heart. It was to remind you that you are "always in my heart."


I remember one morning we left the house without it and you didn't even want to go in the building without it. I had to promise to go right home, get it, and bring it right back to you before you would even attempt to go to class. I don't know if you knew this, but instead of going home, I actually went back to the store I'd gotten it from and bought 5 more of them. I kept two in the van so if I ever forgot it again, I could just grab one of the extras. I also gave one to Mrs. Wilson to keep in her desk for you.

We visited the school during your treatment one day, and she told me that every time she opened her desk drawer and saw that heart it reminded her to say a little prayer for you.

Somehow, all the hearts managed to become misplaced. When I found this one today, I actually smiled. It didn't make me sad to remember. This is the first post I've written in months where I wasn't crying.

Now, this heart represents something more than just me reminding you that you are always in my heart. Now, it reminds me that I am always in your heart as well. I can hear you and Jesus saying, "You are ALWAYS in my heart." Thank you for the reminder.

I love you.
Mommy

Tuesday, August 9, 2011

August Is Different This Year

My beautiful Caleb,

August is very different this year without you. I remember going school supply shopping for you for the very first time last August. You were so excited about everything -- football practice, your 5th birthday, starting kindergarten, and even riding the bus. None of those things matter this year.

School starts on August 22nd and I have a hard time going grocery shopping right now because of all the school supplies. It's kinda silly crying over not buying school supplies, isn't it. I think most parents look forward to the day they no longer have to buy school supplies. But it's just a reminder of something else I'll never get to do with or for you again.

Another difficult thing to face right now is your upcoming birthday. I've thought about all the different things we would have done to celebrate you turning 6 on August 20th. All I know at this point is that we will be sending you a rainbow made of balloons.

Recently, I've spent a lot of time looking at pictures of you from this time last year. Now that I know what to look for, I can see the changes in you so clearly in the pictures, some as early as June. I sometimes wonder if it would have made any difference at all if we'd noticed it sooner and taken you to the doctor earlier. Then I remind myself that I can't allow myself to play the "what if" game. If I did allow it, I think I would probably fall apart.

Of course, the downside of that is that I am more hyper-vigilant with Caden now. I worry more every time he says his head or stomach hurts. I wonder if something is seriously wrong with him and I want to rush him to the doctor and beg for scans to be done. I'm so afraid that I will "blow-off" something that ends up being serious like I did with you. Usually, I manage to step back and look objectively at the situation.

The upside is that I am praying more than ever before. I trust and rely on God's word hourly. I seek His wisdom and guidance whenever I sense myself about to enter "super worry wart" mode. I know He will guide my steps and let me know what needs to be done. I have to stop second-guessing that still, small voice and know He is leading me in everything I do.

Though I cry frequently still thinking more of things that will never be, the time will come when I remember with a smile the things we did together. God's word is true. And, God has gently reminded me time and time again of His everlasting truth:

...Weeping may endure for a night, but joy comes in the morning. (Ps 30.5 NKJ)

And my God will liberally supply (fill to the full) your every need according to His riches in glory in Christ Jesus. (Phil 4.19 AMP)

The amazing part of these verses is that it gives me comfort on two levels.
  1. I know that He is taking care of everything you could possibly need in Heaven. You are loved, cared for and happy. You have no more tears of pain or discomfort. Your life is eternally joyful.
  2. I also know that this applies to me here. God comforts me and holds me close as I mourn the loss of your physical presence. And, He sends the right people to me at just the right time with just the right thing to say or to give me a huge hug just when I need it most.

Though there are things on Earth I will never get to experience with you, I look forward to the day you can share all your experiences in Heaven with me. Earthly experiences pale in comparison to what we will have together in Heaven one day.



I miss you so very much, Caleb.You are always loved -- to infinity and beyond.
Mommy

Tuesday, July 26, 2011

Loved to Infinity and Beyond

Caleb,
As I was drifting off to sleep last night, thoughts of you filled my mind. I was remembering you and it seemed as though your entire life flashed before my eyes. When I awoke this morning, I wrote down these words.

************************
Loved to Infinity and Beyond

I was in the room as you came out of her womb and breathed for the first time
I severed the cord between you and her; then knew that you were mine
You were handed to me and as I held you tightly in my grasp
The love inside began to grow as I thought, "My child, at last."

I watched you grow, I helped you play, I taught you how to speak
Each day with you was a miracle as was the love that we would keep.

You were told of God's great love for you and how Jesus gave His life
You accepted Him within your heart and gave to Him your life
You loved to laugh, you loved to smile, you even loved to sing
Your favorite songs were worship songs and you gladly praised our King.

When you turned five, things started to change; something was not right
You were hurting, your smile was off, and you were not sleeping tight.

It all changed in an instant, we couldn't believe the things that we had heard
In the blink of an eye, our lives turned upside down based on a single word
You were so quiet, so very still as you lay sleeping on the bed
The doctors confirmed it was a tumor that was inside your head.

We started a journey we didn't want and thought we'd never have to take
"My child is sick, may even die" and my heart began to break.

Doctors, hospitals, and MRIs -- those became our "new norm"
This wasn't what I pictured on the day that you were born
You hurt so much and I couldn't imagine being in such pain
Yet you bore it all, you were so brave, and you would not complain.

Just five short months from diagnosis, you grew so very weak
You couldn't walk, you barely ate, you couldn't even speak.

The night before you passed away, you looked into my eyes
You told me that you loved me and I think you realized
You'd never speak to us again, you'd never even wake
Then you drifted off to sleep with a smile upon your face.

Your breathing became labored, it would soon be time for death
I held you closely in my arms as you breathed your final breath.

I miss you more than ever, but rejoice because I know
We'll meet again in Heaven, God said it would be so
Oh, the joys and wonders and the things there'll be to see
When together again in Heaven, we finally will be.

I love you, dearest Caleb, you are always in my heart
Loved to infinity and beyond just like in the start.

Angela Huffines
July 26, 2011
************************

Caleb, I will love and miss you as long as I draw breath within me -- until we are reunited in Heaven. Continue to praise our Lord and King. Sing so loud that I can hear you from here, sweet boy.



I love you to infinity and beyond,
Mommy

Tuesday, July 19, 2011

"Mommy, I miss Bubba so much..."

Dearest Caleb,

Caden has really been missing you these past few weeks. At least once a day, he gets this really sad look on his face and says, "Mommy, I miss Bubba so much."

We went to McD's recently and actually ate inside instead of just going through the drive thru. I'd been avoiding the play area because I'm still not up to handling that yet. However, Caden wanted to play. So, your dad took him to the play area and I stayed in the other section of the restaurant. Caden is finally big enough to climb in the play area by himself. He made it all the way to the top and never got scared. Daddy said Caden had a good time.

Sunday, we went to Little Elm Park as a family for the first time in a few months. CrossRidge was having an ice cream social. As I watched Caden play, all I could think of was how much fun you had the last time you were there. It was one of the few days you were feeling really well. I can still see your smiling face on the equipment as Daddy took your picture. Thankfully, there were a lot of people there and I managed to make it through without breaking down. I met a lady there who was a sub at ELC last year. She told me that the blog really helped her get through her father's death recently. I'm so grateful that God is still using you, me and the blog to help others.

We were listening to the radio today and your favorite Matthew West song (The Motions) came on. Caden came running into the office where I was and hollered, "That's Bubba's song!" He's watched your celebration video so many times that he can just about sing it now, too.

Tonight as we were finishing dinner, he looked at your picture on the fridge and said, "That's MY Caleb." I think it's the first time I've heard him actually say your name instead of just saying, "Bubba."

I just wanted to let you know that you are still missed daily by so many people. You have impacted the lives of people that we may never meet until we join you in Heaven. Thank you, for letting your love for God shine so brightly while you were here.



Always and forever loved,
Mommy

Wednesday, July 6, 2011

Baby Mine

My Beautiful Caleb,

Tonight, I went to change your brother before I went to bed, and discovered he had soaked through his diaper already. With Daddy's help, we got him and his bedding changed. When we put him back in the bed, he started crying. I figured he would calm down fairly quickly so I left the room. He went from crying to screaming and crying. I decided I didn't want him to get more worked up, so I carried him into the living room to hold and rock him for a bit. I automatically began singing "Baby Mine" to calm him down. I didn't even make past the first line before I started crying. Since it seemed to be working to calm him down, I kept going. It's the first time I've sung that song since I sang it to you the day you died. I began to picture all the times I sang it to you over the years and how much you loved it. I could hear you saying, "Mommy, sing Baby Mine" when you were upset or hurting. I could almost hear your sweet voice singing it with me.

I struggled through the rest of the song, but I finished it. By the time I did, tears were freely flowing down my face. Caden looked up at me with innocence on his face and asked, "Mommy, are you okay?" I didn't quite know what to say. I told him I was okay and that I loved him very, very much. He then glanced over at the digital frame and said, "Mommy, look! It's Bubba." I just held him tighter and cried some more while kissing his little forehead. We miss you so much.

The last line of Baby Mine says, "But you're so precious to me, sweet as can be, baby of mine." that is exactly how I feel about both of you boys. I can't imagine how different my life would have been if you had never been a part of it.



I love you, baby mine,
Mommy

Monday, July 4, 2011

Happy 4th of July, Caleb!

Dearest Caleb,

It's hard to believe it's been over 3 months since you left us. I find myself doing whatever I can to stay busy so I don't have much time to dwell on the lack of your presence.

We've made it through another holiday without you. Easter, Mother's Day, Memorial Day, Father's Day, and now Independence Day are just not the same this year. Your dad and I will have our annual viewing of Independence Day this evening after Caden goes to bed. We would have waited that late if you were here since it the aliens kinda scared you last year. I don't think I'm up to watching the fireworks this year. You enjoyed them so much and that's all I would think about this time. I hope you enjoy all the fireworks tonight. I'm sure you'll have the best seat in the house!

Caden and I went to Sea World in San Antonio a few weeks ago. He got to have breakfast with Elmo and the other Sesame Street characters. I wish you could have seen the sheer joy on his face as he ran around the room to hug them all. He also loved watching the Shamu show. We fed the dolphins and enjoyed the rest of the shows and exhibits. The only time I had any trouble was going into the penguin house. Knowing how much you loved penguins and wishing you could see them was a little more than I could handle and I walked out.

Grandma and Grandpop were here last weekend. Grandpop wanted to take Caden to see Cars 2. It was Caden's first time at a movie theater. He did so well. It was amazing watching his eyes as big as saucers and his mouth dropped open in wonder at the size of the screen. He thoroughly enjoyed the movie. Now that I know he can handle it, we'll probably go see some during the day when it's not crowded.



I love you to infinity and beyond,
Mommy

Friday, June 10, 2011

Gone, but NEVER forgotten

Caleb,

Things are going okay here. Each day gets a little easier than the day before. I still miss you like crazy, but I'm coping with it better. And then something will happen that gets me crying again.

Monday morning it was the flyer left on our door about the upcoming vacation Bible school at CrossRidge. This was the first year  you were old enough to attend. I just knew that you would love it because of how much you love Jesus. After I had a good cry for about 15 minutes, I realized that you are in Eternal Heaven School, which is soooo much better because you are learning directly from the Master Himself! Your knowledge increased exponentially overnight! You know more than I do now. Praise God for His faithfulness and everlasting love!!!

Then on Wednesday, your monthly Highlights magazine came in the mail. And the tears started again. I realized that every month I got that silly magazine was another month you were gone, and I just couldn't bear the thought. I almost tore it into pieces. Instead, I calmed myself down then called the magazine to have it cancelled. As much as I love that magazine too, I just can't handle having the physical monthly reminder right now.

Caden's been asking about you more lately. He went to Gma's & Pawpaw Ron's a couple weeks ago for the weekend. We got there Wednesday night. First thing Thursday morning, he started asking where you were and got quite upset when he couldn't find you. I guess he thought you've been there all this time since he'd been spending so much time there when you were sick. It took a while to get him calmed down and reminded that you live with Jesus in Heaven now and are always in our hearts.

As I'm writing this, I'm crying again. Caden just came in and asked if I'm okay. I told him how much I miss you and he says he misses you too. Then he grabbed a tissue and wiped the tears from my eyes and kissed my cheeks. I couldn't help but smile as I hear him say, "It's okay, Momma." I remember you saying the same thing every time you saw me cry.

I don't want you to think that all I do is sit around and cry all the time, because I don't. I laugh when I see certain pictures. I hear songs you used to sing and in my mind I hear the words you would make up when you couldn't remember what the words were supposed to be.  There are even times that I am so wrapped up in something that's going on that I don't think about you at all.  I'm not saying that I've forgotten you, because that will never happen. I'm just saying that it gets easier to go on without you here.

I know I don't have to worry about you any longer. You are in the hands of the greatest Father ever! As much as I would like to think you are worrying about me, I know you aren't. We taught you about God's love for us and you have first-hand knowledge of it now. You know that He is holding onto us as we hold onto Him during this time. We are not suffering. We are saddened that you are not here with us. We had great hopes for your future here on earth, but our greatest hope for you has already been realized -- that you would love God with all your heart for all the days of your life.

Thank you for teaching us that it can be done. That, even in times of adversity, God is still with us. We love you so very much. You may be gone from our physical presence, but you are NEVER forgotten!



I love you to infinity and beyond,
Mommy

Friday, June 3, 2011

Gone from us for 10 weeks today

My sweet, sweet Caleb,

I know it's been a couple weeks since I've written, but it's just so hard to put into words what I'm thinking and feeling.  I do okay most days and then I sit down to write to you and the tears flow freely. I can't seem to control them. I'm not sure I really want to control them yet.

At 11:15 p.m. tonight, you will have been gone from us for exactly 10 weeks. It's hard to believe it's been only 10 weeks. It seems like so much longer. Then again, it seems like just yesterday I was holding you in my arms when you breathed your last breath. My arms ache when I think of the times I held you. They feel so empty. Your memory surrounds my every waking moment. You are constantly in my dreams. I long to see your beautiful face and hear you say you love me just one more time. I keep thinking that will be enough, but somehow I know it won't.

I still wonder frequently what you are experiencing now. What joys are you beholding in the presence of pure love? What is it like to walk and talk with Jesus face-to-face? To never be in pain again? Do you think of us often or are the wonders of Heaven more than enough?

I love you so very much and I know that my love doesn't even begin to compare to the love you now know. I believe your dad and I did the best we could to raise you the best way we knew how. I know there are times that I blew it, but I hope you know how much you mean to us and how very special you were and still are.



I love you to infinity and beyond,
Mommy

Saturday, May 14, 2011

Emotional Week 7

Caleb,

This has been a bit of an emotional week for us. We worked on packing up your bedroom on Monday. It was very difficult to go through your things. Part of me wants to keep everything just the way it is. Another part wants to get rid of everything. Right now, the reminders are hard to bear. Almost every book we read to Caden was yours. Most of the toys he plays with were yours. Even the majority of his clothes are yours. I see you everywhere. It was really hard on your dad to go through the toys. We had to decide what to keep, what to give to your brother and what to get rid of. We filled a hope chest full of things and still have a couple things that won't quite fit. I told your dad that I couldn't handle seeing Caden in your clothes, especially the 4t and 5t things, so we are planning to get rid of them.

Tuesday, I went to see Mrs. Wilson at your school. The school yearbook was in already. They made sure to find pictures to include in the yearbook that had you in them. They also put together a special memorial page to you near the back. That made me cry. Then, they handed me a package of pictures of you. Apparently, when the yearbook coordinator spoke with the group that took the school pictures, the photography studio decided to send what they call a "sympathy package" of pictures to us to help keep your memory alive. It was the biggest package that could have been purchased when the pictures were taken, plus the CD with permission to print more as needed. That started me crying again. One of the things I remember saying to people was that I wished we'd gotten more of your school pictures. We had no idea when those school pictures were taken that they would be the only school pictures you would ever get to take.



Wednesday, I had a couple of appointments. Unfortunately, I didn't have anyone to watch Caden and had to take him with me. The only way I knew to keep him occupied and out of trouble was to take your DS with us. He's learning how to play Go, Diego, Go on the DS. It was difficult watching him play with it, but I guess since you're in Heaven, it's his now anyway.

Today was the Inaugural Head for the Cure 5k - North Texas. The turnout was exceptional. The organizers were originally expecting between 200 - 500 participants. Actual registration was 2,219 people!!! We also raised over $100,000 through registrations, donations, and sponsorships. Jenny ran today in your memory and placed 3rd in her age group. I can't wait until next year. I'm already working on putting together "Team Caleb" for next year's run.

We also got a new air conditioning system installed today. I'm so grateful that we won't have to worry about the air conditioner not working once the temps start getting higher.

Monday is our final MOPs meeting for this school year. I'm going to be speaking on the importance of support during times of adversity. I'm actually looking forward to it.

Honey, I want you to know that I love you so very much. You were my miracle child. I will NEVER forget you. The pain lessens a little every day, but it's still here. Thanks to a loving Savior, and a wonderful network of family and friends I'm making it through. I continue to hold onto Jesus through this time. He is my Rock, Refuge, Fortress, and Shield. He is my strength when I am weak. He is my all-in-all. I am so very thankful that we told you about Him from birth. You were raised to know who He is and how much He loves you. And now, you are experiencing that love first-hand. I stand in awe that you are in His presence and will never hurt again.

I love you,
Mommy

Sunday, May 8, 2011

My first Mother's Day without you

My sweet, sweet Caleb,

I love you so very much. It's been an emotional couple of days for a number of reasons. On Friday, I was interviewed by a local TV station about the blog & why I've kept it going even after you died. (here's the story)  Basically, it's good therapy for me. I get a chance to tell you how I'm feeling and doing, in words. Everyone else is just along for the ride. Hopefully, what I speak will help them. If not, that's okay too. I just want to be able to share with you what's going on with us in a way that I feel comfortable. Writing is comfortable for me.

Friday was also your biological mom's birthday. I'm grateful that we got a chance to tell you about D. and your half-siblings. I'm even more grateful that you were able to spend some time with her and one of your half-siblings before you died. I can't imagine what she must be feeling right now. I've lost you, but she's lost you twice. She is an incredible woman and I'm honored to have her as a part of my life.

Saturday, I took Caden out to Founder's Park by the airport as we waited for your dad to get back from Grandpa Bob's funeral in Florida. Caden was awed by the planes, just as you were when we waiting for Dawn & Connor in 2009. A plane would come in to land & Caden would holler, "Again, again!" I can still picture you saying the same thing. You'd run around with your arms spread wide pretending to be an airplane. We didn't get to stay long this time so I'm going to make plans to go out just for plane watching (and maybe a picnic lunch). I bet Braeden, Gillian & Garrison would love it too, so I'm going to ask Ms. Gwen to go with me.

The Saturday before Mother's Day is also becoming more widely known as Birth Mother's Day. It is to honor those women who chose life for their child, but, for whatever reason (by choice or not), placed that child in the arms of another woman to raise. I choose to honor publicly the two women who blessed me with you & Caden. After I posted a note about it on Facebook, I got the following message from S. & share it with her permission:

Angela, on this Mothers Day I have so many mixed emotions as im sure u do as well. There is one thing im sure of and one thing im able to find happiness from. Thats knowing that i chose the right family for the precious son i could not have raised. I know in my heart that there is no other family that could have loved Caden the way you do. Im so honered that he is your son and so greatful for you and richard. I pray for you all daily and hope that God continues to hold you strong. Your faith is unmeasurable and shows to all. I love you angela and from one mom to another...... Happy Mothers Day!

Thank you, D. & S. for allowing me the honor and privilege of loving & caring for Caleb & Caden.

Which leads me to today -- Mother's Day. My first Mother's Day without you by my side. It was definitely a bittersweet day. Your dad truly outdid himself this year. He made me cry first thing this morning before breakfast! But, it was in a good way. Remember when we had the pictures done back in August with your brother & I said I wished that daddy could have been with us? Well, he took one of those pictures &(with Ms. Gwen's help) had himself put into it so now it is a family portrait! It turned out great & I absolutely love it.


He also got me a Food Saver, which I've wanted for years. Your brother decorated a tote bag for me at ELC that says, "Hands down best mom in town." It has his little handprints on it. It reminded me of the one you did a couple years ago when you were still at ELC. I bought myself a small gift from you. It's a butterfly necklace. I think it is something you would have picked out if you'd had the chance.


After church this morning, Ms. Cosette came up to me with a gift bag. Inside was a picture she had taken of you & me about 3 years ago. She'd had it enlarged & framed it with a little plaque that says, "My Little Angel" on it. That had me crying again.


We went to Taco Bell for lunch. I know it's not the typical Mother's Day restaurant, but your dad first proposed to me at a Taco Bell, so it's one of those sentimental things. Besides, there wasn't a line out the door there like most other places. Also, Daddy promised to grill me a steak for dinner & I'd rather have one of his grilled steaks than eat out anywhere else. So, when we left Taco Bell, we went to Albertson's to pick up the steaks. While there, I saw the most scrumptious looking white-chocolate covered strawberries. We picked those up for dessert.

After we got home, Caden & I both took naps while Daddy watched the Mavs game. Go Mavericks! One step closer to the championship round. When Caden woke up from his nap, he started playing with Daddy's iPad (or as Caden says, "my hipad") while we finished watching the game. After a few minutes playing games, he found his way to YouTube & pulled up the video from your Celebration Service. The tears started again. I just couldn't handle watching or listening to it today, so I left the room.  It's not that I don't want to see it. It's just that I hurt so badly from missing you & I didn't want to spend all evening weeping. Besides, when Caden watches it, he tends to watch it over & over & over. I'd bet that over 100 of the views on YouTube are just from your brother! He misses you so much. We all do.

Caleb, you are loved more than we could ever express. You are missed that much & more. I never stop thinking about you & wonder what you're experiencing now. I know that Jesus is holding me close to help me through this. Would you please give Him a hug from me since I can't physically do it right now?

I love you,
Mommy

Friday, May 6, 2011

Television Interview? Really???

Caleb,

I got a call on Thursday from Dawn Tongish at KDAF-33. She'd heard about our journey with you and the blog. She came out this morning to do an interview to get more information on how things are going. Right now, it looks like the interview will air tonight. She's going to get back with me to let me know for sure when it will air.

We couldn't have done this on our own. God's love and strength sustains us through the most difficult time in our lives. We've opened ourselves up for the world to see. What a humbling experience. It's been a comfort knowing that what we're doing is helping others in some way. That's one of the things we wanted to be able to do through this blog -- help others. Even if it's just providing words of comfort when they are having trouble, or lifting them up in prayer as they go through a difficult trial, or giving them strength because of the strength we have been given through God -- it's all so very worth it.

I pray that this interview will impart strength to others. I want to let people see God's light shining inside of us and always know that God is in control. No matter the circumstances people may be facing, God is still on the throne. He knows what He's doing. He has a purpose and a plan that will benefit them.

I'm so thankful that you found God's purpose and plan for your life at such a young age. Your love for God was apparent in everything you did. From your earliest moments, you loved to listen to worship music and hear God's word read to you. We didn't get to have you around as much as we wanted, but we truly loved every minute we got to have with you.

Caleb, you were such an inspiration to us. Your light, love, courage, and giving nature are the things I continue to hold onto during my darkest moments. When I am weak, hurting and in pain, I think of your strength. You rarely complained about the debilitating pain you were in, so why should I complain about my pain. It is nothing compared to what you endured. You still encourage me on a daily basis. You were truly my miracle child. I'll never forget you and will love you to infinity and beyond.

When I think of you, I smile. I remember so many of the fun things we did together. Trips to Going Bonkers were a blast. Sliding down those huge slides and hearing you scream in delight still make me smile. I remember you asking so many times to go back, but you weren't physically capable of handling the trip or the play equipment. I wish we could have taken you one last time.

I wish we'd taken more family pictures. I have so many memories of you that are captured on camera forever. Watching you eat your first waffle, that was bigger than your head, was so funny. The first time you got to play in the snow. Your first amusement park ride with Kendra. Your dedication at church. Your finalization day when you were less than 6 months old. Holding & rocking you to sleep. Singing to you. The memories never stop. I am flooded with thoughts of you. You truly are my hero. There is no one I could have imagined loving more. I am so thankful that you were a part of our lives for the time we had you.



I was so looking forward to having pictures done in the bluebonnets again this year. We had so much fun when Dawn & Connor were here for it. It was so windy that day. Do you remember? I'll miss our trips to the Zoo. It just won't be the same without you.

I love you so very much and always will. I wanted you to know love like you'd never known before. But my love pales in comparison to the love of God. Now, you know love more fully than I could imagine.

I miss you. I miss you. I miss you. I long for the day when we see each other again, but know that I must keep living my life here. Keep watching over us and loving us. I hope you are having a wonderful time learning all about the things of Heaven. You make sure you tell Jesus that I want a purple mansion. Help decorate it if you can.



I love you, sweet Caleb.
Mommy

Thursday, May 5, 2011

Week 6

My darling Caleb,

Tomorrow marks 6 weeks since you entered the presence of Jesus and the glory of Heaven. Everyone keeps asking how we're doing. I think we're all doing okay overall.  We have our rough moments, but they're not all the time. However, I miss you so very much. I miss hearing you laugh, seeing you smile and watching you play. I miss you coming into our bedroom EVERY morning before 7 a.m. saying, "I'm hungry." I miss telling you to go back to bed. I miss reading bedtime stories and singing songs. I miss you singing along with my phone every time it rings. I can still hear your voice singing, "I don't want to go through the motions. I don't want to go one more day, without Your 'welcome-suming' passion inside of me." You never could get the "all consuming" part down quite right. I miss laughing as you mispronounce it, but rejoicing because you knew what it meant.

A lot has happened in the past few weeks as we continue to adjust to you being gone. Your dad's gone back to work. Some things there are still in a state of fluctuation, but we know that it will all work out.

Caden's back at ELC and loving every day he goes. He's learning so much, so very fast. He's recognizing colors, shapes and much of the alphabet already. And, he's talking so much clearer now. I'm relieved at that. I felt so bad at having to kinda push him to the back burner for a few months while we were almost over our heads with taking care of you. I don't regret it because I think I knew that I would have the time to "retrain" him and help him catch up. I also think that a lot of his progress is because we had to send him to stay with so many people during those 5 months. They all loved him as their own child and kept him learning every day. I didn't have to worry if he was being taken care of because I could tell when he came home -- happy and safe.

Do you remember telling us that you wanted to teach Caden how to say "elephant?" Well... he knows how to say it now. I was so amused the first time you tried to get him to say elephant. He was only 3 months old! But you kept trying. "Caden, can you say el-e-phant?" You'd sound it out nice and slow so he could hear each syllable. He had absolutely no clue what you were saying, but you never let it stop you. Brilliance in action.

Since Caden's at ELC twice a week, that leaves me with some alone time. It hasn't been as bad as I thought it would be. I think that's mostly because I keep myself as occupied as I can. Thankfully, my mind turns to worship more and more now. It seems I pray and sing almost all the time now. I also keep reminding myself that you are happier than you could ever be on Earth. You are pain-free and enjoying the presence of God.

I've also finally started playing the Wii again. It was really difficult for the first few weeks because that was how we spent a lot of our time together. I'm sure you remember that, somehow, all our progress on Super Mario Brothers got wiped out and we had to start all over again just a couple weeks before you died. We had just gotten to World 2 again. Well, I'm back up to World 6 and moving right along when I do play. I've gotten really into Mario Kart recently. I loved watching you play that in the playroom and in your room at the hospital.

Aunt Jennifer said the pancake breakfast fundraiser they had turned out really well. They didn't have as many people show up as they anticipated, but it all worked out since they pre-sold the tickets.

We received word late Tuesday night that your Grandpa Bob passed away unexpectedly. As I lay awake that night, I thought about our trip to Florida when you were about 9 months old. We planned the trip just so you could meed Grandpa Bob and Grandma Nancy. We stayed with them for a couple of days then headed across the state to introduce you to my grandparents, Nana and Pop. You had the wonderful opportunity of swimming in the Gulf of Mexico one day & the Atlantic Ocean the next. We had so much fun on that trip. You were just learning how to pull yourself up and "cruise" around the coffee tables everywhere we were. If I remember correctly, that was your first time in a swimming pool as well. You loved the water so much that we kept calling you "Our Little Fish."

Your dad is going to his dad's memorial service. We had to send your brother to Ms. Gwen's to spend the night last night so we didn't have to drive to Uncle Terry's with him in the middle of the night. It was Caden's first night away from us since you passed. He had a really tough time getting back to sleep. He stills asks about you frequently. Since he's only 2 1/2, he doesn't really understand yet. When he asks where you are, we just remind him that you've gone to live with Jesus. He says, "up in the sky?" I reply, "yes, sweetheart, up in the sky." He then says, "And in my heart, Mommy." And through my tears, I say, "yes, Caden. He's always in our hearts." Then he'll follow up by saying that you're in Mommy's heart, Daddy's heart, doggie's heart and kitty's heart, too.

Oh! I almost forgot. We finally got your headstone placed yesterday. It's absolutely beautiful. I believe you'd like it a lot. We took several pictures of it last night (actually it was around 1:30 a.m) when we got to Elkhart. I went back out there on my way back out of town and took a few more in the daylight. It looks like G-ma Kay put up some butterfly windchimes for you as well.

 

 

 

I had to take Caden to the doctor the other day. Somehow, he developed a boil on his buttocks. I know how painful a boil can be, so I took him right in.  While we were there, Dr. P. mentioned that he'd missed the memorial service and apologized. I told him no apology was necessary. Then he explained why he missed it. His wife has recently been diagnosed with a brain tumor and the doctors are not giving very good news about it. I am devastated to know that someone else we care about is going through this. I was so blessed to be able to minister to him for a while during our visit. If what we went through with you was only so I could bring him comfort during their journey, then it was worth it. I am praying for them daily as so many prayed for us.

I also recently discovered that there is a 5k run/walk taking place in Frisco called Head for the Cure 5K - North Texas. It's on Saturday, May 14th, at Frisco Square in downtown Frisco and starts at 8 a.m.  I wish we'd found out early enough to put together a team to participate in your memory. I posted it on Facebook to help spread the word. This is the first year for this race in north Texas and there are already over 1,400 participants registered! I got a message from Jenny M. saying that she is going to run in the race this year in your memory and that if we put together a team for next year that we can count her in. I am so touched and honored that she would do this. Well, since I can't physically handle the 5k this year, I'm looking into volunteering during it so I can participate somehow. It's important to me to do this.

Well, that's about it for now.  You are missed more than you can imagine.

I love you to infinity and beyond!
Mommy

Friday, April 15, 2011

Week 3

Caleb,
It's been 3 weeks since you went to Heaven. I try to imagine what you're seeing, hearing, saying and doing. Somehow, I know my wildest imaginations don't even touch the surface of what's going on in Heaven. The only things I know for certain are that you are healed, pain-free & happy. I wonder what your reaction was the first time you saw Jesus face-to-face.  I imagine you being surrounded by people you never met on earth, but somehow you still know who they are.

I remember seeing your body deteriorate over the past three months and know how frustrated you were because you couldn't do the things you used to be able to do. Right until the last, your mind was as sharp as ever and brighter than a 5-yr old should have anyway.

 It's been difficult without you. Every day something will remind me of you -- the clothes Caden is now wearing that used to be yours, the empty seat at the dinner table, Caden seeing a picture of you and saying, "look, it's Bubba!" Just walking past your bedroom is hard, and trying to keep your brother out of there until I have the strength to finish going through your things is almost more than I can bear. I lay awake at night and ask God to help ease the pain of losing you. As much as I would love to still have you here with us, I would never wish such pain on anyone.

On April 2nd, we had a celebration of your life. I had Gwen share the song I wrote for you after you were born that I sang to you every morning for almost 2 years along with a poem I wrote after you died.


Heaven Sent

Good morning little man, how are you?
Good morning little man, I love you.
You are beautiful, Heaven knows.
And I love you from your head down to your toes.

You were Heaven sent, can’t you see.
And you mean the whole wide world to me.
A precious gift sent from God above.
And you know that I will shower you with love.

How I love to hold you in my arms.
You’ll grow up with grace and full of charm.
All the things this life has planned for you…
I pray you’ll look to God for what to do.

September 4, 2005


Heaven sent, you came to us
And though we know not why
Heaven sent you were returned
When you were only five.

We taught you all about the Lord
And what it meant to love
Now we know you know it well
As you watch us from above.

Caterpillars, rainbows, gold
Those were your favorite things.
Each memory of you we have
We share what joy it brings.

We love you, our sweet Caleb,
We’ll miss your loving heart.
God had a special plan for you
And it’s time to do your part.

March 27, 2011



I love you, Caleb.
Mommy