My Greatest Harvest

Harvest... reaping what you sow. Working on something and them being able to have it bear fruit and bring you joy. As a mother, I rejoice in my harvest. Raising two sons of God. Being a mother in Zion. Having a wonderful man as my husband. Knowing that I am a daughter of God, and that he loves me and is watchful over my every need. These are my greatest harvest.

I just love everything associated with this time of the year! I love the food... Cider, hot cocoa, warm baked goods.

I love the smells, everything with apples and spices and baking pies. (No, I have never in my entire life actually baked a pie... but I have candles that make it smell like I do bake pies regularly... and I love the smell it gives my house. Now that I think of it... I am going to bake a pie tonight. It's Sunday, and I don't have anything else I have to do... Brighton! Tonight we are baking an apple pie! hmmmm... I wonder how you bake an apple pie???)

I love the decorations. My friend Abby lives around the corner from me, and every person in our entire neighborhood sees her house first when they turn into our "Wisteria Lane". Abby is Amazing! She is fun, caring, sweet, cute and really talented. Her house has been decorated with fall deco for two weeks! It is like a big welcome sign to every person coming to visit our houses. It immediately makes you feel like you are entering a place where people live the happy life. Kids on bikes, dads playing with their kids, moms baking pies. (Seriously! I have got to try making a pie!!)

Here are a few of my favorite harvest pictures from the season so far.
Enjoy... and take the time to harvest.

Traditions... and hot cocoa

Being a mom is awesome. I love carrying on some of the neat things my mom did for me when I was little. I used to love coming home from school, because every day after school mom had snack time for us. Sometimes she would have hot cookies waiting. Sometimes she would make us Saimen. (top ramen for those non-Hawaiian readers.) I remember carrot sticks with ranch dip. Amy and Chuck, what else do you remember?

Anyway, I guess I always just thought that this was her way of getting us to eat enough. But now I realize that is totally not it. This was her way of bribing us to sit down as soon as we got home from school and tell her every detail of our day! It started a line of communication that we still have to this day!

As soon as Brighton gets home, I can hardly wait for him to tell me everything! But the first day he had nothing to say. NOTHING!! I wanted every detail, and he couldn't think of a thing to share. So I realized my mom's brilliance, and I quickly told him about snack talk time.We went into the kitchen and made cookies together, and as long as he talked, he got to help and eat. It was great!! We have been doing it for two weeks now. Sometimes we make stuff, and sometimes we just snuggle on the couch together. He doesn't seem to care, as long as there is food involved and he has my undivided attention. Yesterday was string cheese and a banana. Now he grabs my hand as soon as he gets off the bus and says, "Come on mom, let's see what we should eat." It is great!

Today we made cocoa. I had been to this awesome Chocolate Party and had gotten some really neat hot cocoa fixings that I was excited to use. So I told Brighton that we would do it after school. We had some much fun!

And yes, Cole poured hot cocoa on the floor not once, not twice, but THREE times! But it really didn't matter. He was trying, and it was fun, and memories were made. You just can't enjoy hot cocoa from a sippy cup.

Being a mom of boys totally rocks!!

Oncology

My heart is so full as I sit down to write my thoughts out today. Oncology. Wow. That is one of the scariest words to me.

Cole goes to CHOC (Children's Hospital of Orange County) every Monday and Thursday. They are the best hospital for children in all of this area. The toughest cases are all referred here. Down in the basement are the therapy rooms. They are like huge rooms with tons of fun equipment. Think sporting goods meets Toys R Us. Cole's favorite thing to do is climb up on a Tarzan rose swing and swing across the room and land in a big pit of balls. I'll try to video it next week.

This week we added a third and fourth hour to his normal weekly schedule. So we are at the hospital an our later then usual. We learned that this is when the Oncology kids get to come and play.

Oncology... I don't know how to express how amazing these kids are. They all wear masks, because any germ could literally destroy their frail systems and they would not survive it. Many of them wear full protective gear. Gloves, blankets, full covering. Some have beautiful hair, many do not. But everyone of them smiles. The entire time... smiles. How? I do not understand it. Smiles... These beautiful children are so happy. They love to get off their floor of the hospital and go play. Some come down to the therapy rooms, and some go out to the front lawns and playground. They are friendly, and kind, and full of questions. They love to talk to Cole. They want to know all about his backpack. They want to know if it is his chemotherapy bag. They ask him lots of questions and say things like, "awww poor little guy." These, the kids who have no hair and have to talk through masks... feel bad for my little boy who is healthy and thriving. They are not sitting up in their room full of self pity and despair. They are out playing, and from what I could tell, they live for these hours where they get to get out and play. One little boy about 8 years old was playing t-ball on the front lawn. Annaleese is 7, Latin American, and she loved playing with Cole, mothering him. I overheard a darling little Asian girl, maybe 6 years old asking if they could just sit outside. Just sit... and then I looked at the sky. And wow! It was so beautiful. And I wanted to just sit outside. These precious children of God are so happy to be able to play... to get a break and be away from their rooms. Some are accompanied by iv poles and lots of tubes. Cole and I are really familiar with that. All of them have a therapist or nurse with them. All walks of life, all nationalities, all languages...

I guess I just wanted to say thank you to my Heavenly Father. Thank you for the amazing health my children both have. And thank you for CHOC hospital having programs to help these children get better. But most of all, thank you for giving these children your joy, your love and your spirit. These children were happy. They were wonderful. They are my heroes.

Not one of those days...

Note: This happened 3 weeks ago... but it took me this long to have the energy to post it.

So you know how there are really great "mom days"? Those days that just seem magical? Like you know that you are training sons and daughters of tomorrow into strong, courageous leaders? Where you just know that you are making a difference and that you wouldn't trade your life for anything else in the world?

This is not one of those days.

Don't let the cute pictures fool you. Don't be taken in by their sweet smiles and sparkling eyes. Any time you come this close to ending the day behind bars is not a good day!

Again, this may be a long and boring post, so feel free to skip ahead if you want to.

It all started with me and 3 other girlfriends wanting to be great moms. We decided to meet at the fountains outside of Kohl's in Rancho Santa Margarita to let our kids play and splash in the water. Cute moms, doing fun things for their kids.

We have been really focused on potty training with Brighton this week. Yes he is 5 years old and still in a pull up. Don't judge me. Wait until you have a child with autistic sensory issues and then talk to me about it. Anyway, we had been shopping at Costco, where Brighton and Cole fought over everything either of them touched. It was not fun. In all fairness, they are usually great. This was just not one of those days. We got home and as we were getting ready to leave for the fountains, Cole was poopie, so I changed his diaper. We load into the car and WHEW! It be stinkin!! "Brighton, is that you? Did you have an accident?" No. "Are you sure?" No mom. Upon further checking, yes it was him. And he choose to scream and cry over the next 10 minutes while we cleaned everything up. Seriously... sooo yucky.... everywhere. But part of his sensory issue is not recognizing that feeling, and also transitioning... so I was a good sport, and just hugged him and never got mad. We get back in the car and again... IT BE STINKIN!!!! Seriously, I have just changed two of the WORST diapers in my life in the past 15 minutes, and now it smells like evil in my car. Cole... enough said. So we all go back in the house AGAIN! We take care of everything and then we load back into the car (the neighbors probably thought we were crazy people.)

As we are driving Brighton is having a melt down. Apparently Cole is touching Brighton's toys. grrr. Don't get me started.....

As we pull into the parking lot, I am in luck. The very closest space is open. Right there... not 30 feet from the fountain and chairs. Brighton is still wacko, so we sit in the car for 5 minutes while I "Happily" explain to him about privileges, and good behavior, and happy boys get to do fun things.... I think all he heard was "blah, blah, blah, blah." Finally he is cute and says, "Sorry mom, I will make really good choices now."

All right! We are ready for some fun! We walk over to the fountains and I tell Lisa, "Sorry we are late. It is being a really hard mom day." She laughs and says the exact same thing. A few minutes later Abby gets there with her 3 under the age of 3. Noah, her oldest goes straight to time out. She proceeds to tell us about her horrible mommy day. Lisa and I laugh and tell her we totally understand. Throughout the next 15 minutes, Brighton gets put in time out 3 times for being bratty and throwing water in the little guys faces. These 2 minute time outs don't seem to be doing anything to help the situation. I explain to him that the next one will be 5 minutes in the car.

We get a phone call from Karen telling us that she is on her way with her 3 under 3, but that she is running late because of a really day day. We all just laugh.

Karen gets there, and over the next 10 minutes kids are in and out of time out all over the place. Brighton is super bratty, and I tell him, "That's it! 5 minute time out in the car right now."

Complete wack out! Sanity is gone, literally kicking and screaming, I carry him to the car. (Remember, it is all of 30 feet from where we are all sitting.) I roll down the windows and tell him he will be there for 5 minutes so he needs to think about making better choices. He continues to scream like a banshee for 3 minutes. I am back at the tables and I holler over to him that he will not be able to play in the fountains anymore unless he can calm down. It works, and he settles down. I am holding my cell phone so that I can make certain that I don't leave him there for longer than 5 minutes.

I go over and get him. We hug and have a good moment of promises to make good choices. We walk back to the fountains and he plays with Cole and the other boys.

So about this time we hear a fire engine coming with sirens and lights flashing! It is going to drive right past us!! We get so excited!!! Wow!!! Boys!!!! Come and look at this!!! How amazing is this! We get to see the fire engine up close! We can watch them drive right past us! This is really cool. And wow, two police cars! AWESOME!

Then we realize that they are pulling up right in front of us. Then they park right behind our cars. Do you get where this is going???? Because... no, I didn't get it. I was hungry and said to my friend Lisa, "Hey, I'm going to grab a taco, can you watch my boys for a minute?" Sure... no problem...

You can see the restaurant in the pictures behind the boys. Seriously... everything is so close right there.

So next thing is I am ordering my taco and Lisa comes in... "Um Charise, I think you might want to come out here. I think we have a situation. The firemen and police are all circling your car."

Oh Crap.
Seriously, Oh Crap.

At first I think, "what is there a bomb or something hidden behind my car?" And then immediately it hits me... Brighton, the screaming banshee, the wacko insane crazy kid that was have the mother of all tantrums in the car 10 minutes earlier.

So I walk over to the car, and the circle of firemen, paramedics and police officers. "Is everything all right sir?" I ask. "It's okay mam, we have everything under control."

"Okay, but you are all standing in a circle around my car."

"This is your car mam?"

gulp, "ummm, yes?"

Is there someone locked in your car?

And then I actually looked! Like for a split second I thought... IS THERE SOMEBODY locked in my car? And I desperately thought, please yes, let there be somebody locked in my car so that will explain why there are 7 firefighters and 4 police officers standing in a circle around my car and now all 11 of them are staring at me. (That is a lot of men with weapons staring daggers at a person!)

But sadly, no. There was not anyone in my car.

So I explained that I have a 5 year old that was having a meltdown, and after 3 time outs in a chair by mom, he had a five minute time out in the car. It was at this point that total panic sets in! I realize that one firefighter and one police officer have both begun writing in their little pads. I realize in that instant that Bill and I have to adopt our children. We can't have them biologically. And if there is ANY kind of an abuse record, unsubstantiated or not, we can't get any more babies! My heart plummets. I am praying in my head with every emotion I have that these men will not fill out a report!

Luckily, after a few minutes of explaining, the main police officer stops me and says, "Mam, I'd like to talk to your son. I have a 7 year old at home and I understand what happened."

After talking with Brighton, (who thought he was going to go to jail for being a brat!!) the officers and firefighters left us.

At this point my three friends all look at me and say, "How are you not crying????" And then I started bawling! I was so terrified!!!

Lisa says to me, "Do you think they could come and talk to Gavin next? That was great!" She is hilarious!

Seriously, It was not one of those days!

A day in the life of Cole.

A day in the life of Cole has lots of good and lots of opportunities to grow. He is such an amazing little guy. His body is so little, but his spirit is so huge!

I have wanted to write this post for a year, but it seems more like little details that I just want to keep track of. It's not necessarily fun and entertaining reading. But since I want to use this blog as my journal, here goes.

He is always a great sport about wearing his backpack. It weighs 10 pounds. He weighs 24 pounds. It's almost half his body weight. And yet he never complains. The first time we put it on him, it flipped him on his back like a overturned turtle. He looked up at me with sad eyes that clearly said, "Why did you do that to me mom?" I started sobbing. It was horrible. It reminded me of that youth speaker John Bytheway's talk about having unrepented of sins in your backpack, like bricks weighing you down. But I knew that Cole couldn't just go repent and take of his backpack. Instead, he was just going to wear it for the first 5 or 10 years of his life. No... we have no idea how long... but it will be a while.

Two of his weekly therapies are vital stimulation. They are the electrodes that are taped to his throat in the pictures above. It is basically electric shock therapy for an hour twice a week. He hates it. It is really painful. That is where I finally called my mom and told her I needed help. I couldn't stand to do it all. So she has been wonderful and she takes him once a week, and I take him once a week. It all got really overwhelming for a while. Spring was hard. Summer was much better. Fall is going great. Every month it seems like our lives get better and easier. I think we just learn to deal with whatever we need to, and by making the best of it, we end up enjoys it so much more. Life really is what you make it. Yeah... tough, hard, horrible stuff happens. Now make it better, and have a great life anyway.

Cole's Schedule:
Monday
8:45 - 9:45am CHOC Hospital for Vital Stim and eating therapy with Melissa (Grammy takes him to this one!)
10:00 - 11:00 CHOC Speech (Beginning next week.)
11:00 - 12:00 Rainbow Kids Acheivement Center with Cami for Physical Therapy
12:30 - 1:00 Hang out with Mom while Brighton is at Talk Therapy
1:30 - 2:30 Speech Rainbow Kids Acheivement Center with Kelly

Tuesday 12:00 - 1:00 OT Charlotte Pacific Pediatric

Wednesday 8:00am - 9:00 OT (Breathing and Vocal) Charlotte Pacific Pediatric

Thursday
9:00 - 10:00 CHOC Hospital for Vital Stim and Eating with Jamie
10:00 - 11:00 CHOC Speech (beginning next week.)

Thursday afternoons are spent at different specialists. Every month Cole sees these five specialists: I try to get them all on Thursdays, but sometimes it does not work out.

GI - Failure to Thrive. G-tube.

Pulmonary clinic - Chronic Lung Disease. This is the major cause of almost every problem Cole has today. In one way or another... it is directly related to almost everything wrong with Cole. Seriously, take care of your lungs. Don't smoke. Exercise.

ENT - Paralyzed left vocal chord, right chord severely damaged. This causes Cole to #1, not be able to talk, but #2, whenever he drinks, his vocal chords can't close off completely, so he chokes as water or fluids go into his lungs. This is causing him to get sick a lot. Often with pneumonia, which is what we have been to the hospital for 3 times last year.

Dermatology - Severe skin problems caused by chronic lung disease. Cole is "allergic" to water. We are only supposed to bath him once a week. That makes for a very dirty 2 year old! Last winter his skin was horrible. He had scabs everywhere, even in his hair! But we have learned how to control it much better.

RSV clinic - 2 horribly painful shots in his legs every month. But they keep him alive. However, because the nurses who give the shots always wear gloves... he is now terrified of anyone wearing latex gloves. We were at the mall, and a lady was cleaning the carpet, and he FREAKED OUT! He start throwing such a fit that he threw up all over! It is so sad. But seriously, he is terrified of rubber gloves. If I even say the word while we are in the doctor's office, he will throw up, so I have to spell it to them and ask them not to wear them. Luckily, so far, everyone has been great about not wearing them with him.

He also sees the eye doctor every 6 months, and goes to the EDAC (Early Developmental Assessment Clinic) every six months.

His area of our room is like his own little hospital room. We are thrilled to have gotten rid of the oxygen tanks and the iv pole. They took up so much space! All of his supplies are in the clear drawers you see in the picture below. It all fits perfectly.

Here is Cole's daily medicine schedule.

AM
Formula	Each morning we make a fresh bag for the Zvex Pump.
	2 cans Peptimen Jr
	Continuous 24 hour feed at 40 cc's per hour.
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
	Ranitidine 75 mg/5m	1.5 ml	GI Younes/Robinson
	Prevacid Solutab 15mg	1 tablet	GI Younes/Robinson
	Dissolve with water in small cup and put through g-tube.
Inhaler	Qvar 80mcg	2 puffs	Pulminary CHOC
	2 puffs, 6 breaths each, together is fine
Skin	Pro Topic .1%	cover area	Dermatology Baugh
	Protopic Not on Weekends!
	Betameth Dip .5%	cover area	Dermatology Baugh
	Weekends Only
Inhaler	ProAir HFA	2 puffs	Pulminary CHOC
	Only if needed. 2 puffs, 6 breaths each, 1 minute a part.
noon
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
Skin	Mimyx cream	cover area	Dermatology Baugh
	Only if needed.
PM
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
	Ranitidine 75 mg/5m	1.5 ml	GI Younes/Robinson
	Hydroxyz Hcl 10mg/	1/2 t.	Dermatology Baugh
	Cyproheptad 2mg/5ml	1 t.	GI Younes/Robinson
	Cyproheptad Not on Weekends!
	Singulair 4 mg	1 packet	Pulminary CHOC
	Mix with 1 tblsp. Peptamin jr and put through g-tube.
Skin	Pro Topic .1%	cover area	Dermatology Baugh
	Protopic Not on Weekends!
	Betameth Dip .5%	cover area	Dermatology Baugh
	Weekends Only
Formula	Before bed add 2 cans Peptimen Jr to the bag for the Zvex Pump.
	Continuous 24 hour feed at 40 cc's per hour.

Cole is an amazing miracle in our family's life. He has brought the spirit into our home with such a beautiful strength. Every day of my life is better because Cole is a part of it. It is an honor and a joy to be him mom. I have learned more about having my priorities in place over the past 3 years then I ever dreamed possible.

September 11th

It's the time to show the world we're strong, we won't be terrorized.
Evil's not allowed to win when you've got Heaven on your side.
It's for the ones we've lost that we stand up strong today,
Our flag still stands for Freedom, and they can't take that away!

I am proud to be an American where at least I know I'm free.
I won't forget the ones that died on that Tuesday morning.
And we're going to stand up and see it through and defend her still today.
'Cause we'll never fall when we all stand... Gob Bless the USA!

Grandpa and grandma were married on a three day leave because they just couldn't bear not knowing that they would be together if something were to happen while he was at war.
A gunner in an airplane over Japan in World War 2.

To this day he aches to go back over there and "make sure they are all right." He hated what he had to do, because even then he saw the bigger picture and knew that these were his brothers and sisters. But he was called to protect, and he is a hero.

My dad and mom got married on an army leave also. Something about not knowing if they would come back all right makes for an ever lasting love. The strength of their commitment is amazing. I am lucky to have them as my own examples.

It isn't so different today. Soldiers called to protect, to defend. I am so grateful to them in seeing the bigger picture. Keeping my little family safe. Free to believe as we choose. I pray for their safety, their courage and their honor. Brighton says he wants to be an army guy when he grows up. Whatever branch he chooses, I would be honored to be a mother of a soldier. Terrified, of course, but then there is always a bigger picture, and Heavenly Father needs strong armies to do his work. One of Brighton's favorite shows to watch is the Living Scriptures Armies of Helaman story. It shows such courage and strength in defending what you believe true.

Seven years ago planes flew into buildings, and I was forever changed. It was no longer about history, and stories from long ago. This was my life, and my country. Those were my buildings. I had just been there a few years earlier. I am so thankful for a government that chose to protect us. That continues to take a stand to keep us safe. Safer than it would be. I am proud to be an American.

We are safe and free and happy. Thank you to every person today who has fought to defend our freedom and liberties. I promise to teach my children of your sacrifice.