Enough already about me... What about the kids?

My kids are amazing! Chaselyn is more brilliant and wonderful and beautiful and creative and just plain cute than I ever was or will be. And Jacob is more adventurous and crafty and smart and handsome and exciting and just plain cute than I ever was or will be. Both of them are learning so many new things everyday. I am really sad that I haven't blogged about their milestones over the past three months. So if you aren't into hearing about how wonderful my kids are, you should stop reading now.



Let's start with Jacob, since he is 1.25 years old today. The last post I wrote for him was his one year post. WoW! What a difference 3 months makes. He was just starting to put steps together and walk then. Now I can't keep up with him, literally. He's too fast for Mommy. He loves to run around and chase Chaselyn, Daddy, Holly or anything else that moves. He's a daredevil too. He likes to stand on the sit-n-spin and do a little dance. He climbs on everything. He's most entertained by playing with Chaselyn's toys when she's not around. A close second is anything electronic - phones, remotes, cords, computers, etc. And he's good at finding things too. Forgot where you put that gross/dangerous/poisonous someone should call CPS item? Jacob will find it. And the boy loves the water. The splash park is the latest big hit in Jacob's world. It took him a couple of trips to figure it out, but last time we went, he was running through all of the little squirters. And he still loves bath time. Ducky got a little spray mister too that he loves. And if it weren't 1000 degrees outside, we would let the little guy have more water fun.

Now, I don't want you to think that the boy is just "all boy" and nothing more, he's smart too. He knows how to say Daddy, Mommy, and Ducky. He can bark like a dog on command (Chaselyn taught him that) and he knows how to moo (we're currently trying to get him to connect that to a cow). Jacob is not easily fooled either. There is no out of sight out of mind with him. He knows where the food is supposed to be. He knows where his paci's are supposed to be (only in his bed). And he'll tell you all about it if they aren't there. He has taken to screaming when he's upset, which we aren't too fond of. The daycare said that there a couple of screamers in his class, so they figured he was mimicking them.

What would make Jacob upset you ask? Not eating. The boy is a bottomless pit. I am seriously concerned about the boy as a teenager. He can put away 3 hot dogs, a half can of veggies, some bread, and some fruit in one sitting. It is amazing and kind of scary all at the same time. But during the last 3 months, he's cut his molars, so it's no wonder the man child wants some steak. And you would think with all of that the boy would be a little tank toddling around with the chubby legs and squishy arms. But no, Jacob has never had the little baby fat rolls. He gets a little poochy belly after he eats, but it's gone within an hour. He is still  in size 3 diapers and size 12 month clothes. I don't know where all the food goes. Speaking of diapers, we have to keep pants on Jacob so that he keeps his diaper on. I don't think he is trying to take his diaper off he just likes to play with it and try to push it down. That's not clear, but I know what I mean. We've only had one incidence so far of finding a naked boy. And even then he was contained to his crib after a nap. (Side note upon entering the room Chaselyn at eye level with Jacob's boy parts asked "What's that kind of booty?" After containing the laughter we simply said it's the boy kind. She seemed to be appeased. They have taken countless baths together, so I was kind of taken off guard.)

So there you have it, that's my 15 month old boy. Like I said, he's doing new things everyday. And one of the things that has been a bother to me with my current condition is that I haven't been able to interact with the kids as much as I would like. I feel like I'm missing out with Jacob a lot because he is so busy and mobile. But, he still calls me Momma and smiles and bats his beautiful long eyelashes with his amazingly blue eyes and my heart still melts.

Oh, I almost forgot, last week we took him for his first haircut. That aged him by like 2 years in 2 seconds. Please see the photos below.

Now, for my precious daughter. Chaselyn is (almost) 2.75 years old going on 5 years old. She is growing and learning too fast. Let's start with the growing, she's recently needed a wardrobe change to upgrade to 3T (and sometimes 4T) clothes. I have stretched the 24m and 2T about as far as they can go. And remember  I mentioned those red shoes, those were size 5. She's now in size 7 shoes. She's just over 3 feet tall and she's loosing her baby fat. Chaselyn had the chubby little legs as a baby, but she's thinning out and looking more and more like a little kid every day.

But it has been so fun these past few months to have time to do special things with her and just to be around her as she's learning. She has really found a lot of joy in song. Between figuring out how to turn her cd's on for herself, vacation bible school at CABC and Ducky's encouragement to sing, the girl knows more songs than I do. We have now added singing songs as part of the bedtime ritual. Which was immediately followed by a 2 song limit on the singing at bedtime. One of her favorites is the friend song. I think that Ducky made it up, but the words are simple "I've got a friend named Chaselyn, Chaselyn, Chaselyn. I've got a friend named Chaselyn. She's my friend." We start with our best friend Jesus, then we go through the family - Chaselyn, Jacob, Mommy, Daddy. Then we sing for anyone else staying in the house which has ranged from 1 extra person up to 4 extra people. Then she picks "one" more friend to add. This "one" is often a lump of people, like "Caroline, Chris, and MaryAnn" or "Natalie and Isaac", or she'll pull out a family member that came to visit us, like "Aunt Charlik (Charlotte)" or "My Leslie". Another part of bedtime is prayers. The girl has learned to pray for others, she's learned to ask God to heal her, she's learned to pray for her "whole fampily". Nothing can replace those sweet moments.

Now it's not all about the bedtime in our house. Just stand back and watch Chaselyn go. She's a very loving sister, sometimes to a fault. She will sit and "read" a book by herself for 15 minutes. She loves to play with her kitchen and cook for people. She is so creative too. One day the same set of beads was a jump rope, a swing, a tail, and a big necklace. And don't even ask about the fun of a large cardboard box or the empty cabinets she and Jacob play in. She loves to play outside too. Again, with the heat this had been a little harder. But she still runs around the house. She also loves some down time too. She likes to be read to and to cuddle up and watch movies. Even in the extreme heat, she still wants to snuggle with blankets.

 

Here are some of the favorite quotes from our little girl:

Re: My baptism - "Did Pastor Jay help you put your hair in the water?" This was said obviously after my baptism and noticing my hair had fallen out.

Re: MaryAnn - "She's gonna call me Cake. I'm not Cake, I'm Chaselyn." This was said as a kind of thinking out loud situation on the way home from school.

Re: A name for her new Rocking Horse - "Fredit" and "Dugah"

Re: Going up a hill in AR - "We're leaning back!"

Re: playing a game of memory - "You don't have to be here." Said to Ducky to let her know that she could do it on her own.

Re: hearts - "It's a heart for loving you."

Re: Jacob - "JAAAAA-COOOOOOB!!!! Where are you?"



Oh, there is so much more. But I forget. You just all need to come spend a day with us to see how marvelous our kids are.

Something I need to share...

Matthew 9: 1-8 (ESV)

And getting into a boat he crossed over and came to his own city. And behold, some people brought to him a paralytic, lying on a bed. And when Jesus saw their faith, he said to the paralytic, "Take heart, my son; your sins are forgiven." And behold, some of the scribes said to themselves, "This man is blaspheming." But Jesus, knowing their thoughts, said, "Why do you think evil in your hearts? For which is easier, to say, 'Your sins are forgiven,' or to say, 'Rise and walk'? But that you may know that the Son of Man has authority on earth to forgive sins"—he then said to the paralytic—"Rise, pick up your bed and go home." And he rose and went home. When the crowds saw it, they were afraid, and they glorified God, who had given such authority to men.

 

I have been wanting to share this passage with all of you for a while. I gives me great hope, joy and peace to know that we serve a loving God who has already done so much for us. And yet he continues to pour out blessing upon blessing everyday. This little interaction between Jesus and the paralytic has given me a greater vision for what is really important.

Stanton and I weren't sure how much of my brain function I would have during all of this, so he started reading the bible to me when I couldn't really do so for myself. By the time we got home from the hospital, I could follow along in my Bible and start getting more out of it (I'm a visual learner). And by the next week I could read, understand, and felt more empowered to continue my walk with Jesus. All of that to say, Stanton just started in the New Testament with Matthew and so, that's where I have continued to stay.

Reading through Matthew is simply awe inspiring. Things take on a new meaning when you are hit with a life threatening cancer. I was amazed and a little embarrassed at how little I had appreciated these stories before. Jesus healed a lot of people! And with each story of healing, I became more and more assured of his grace and mercy for his children. Not only did he heal people, but he fed thousands, multiple times with only a few loaves of bread and a couple of straggly fish. That's right, God is the ultimate provider too. He cares for us on such a deep level, that he is even concerned for our most basic human need - food.

But, then amidst all of the miraculous healings, feedings, walking on water, etc. He reminds us of what He has already done. "Take heart, my son; your sins are forgiven." Amen! The paralytic does not need to be healed, his sins have been forgiven. He has a ticket to the kingdom of God! Any trials on this earth pale in comparison to the joy it will be when we reach heaven. Jesus has provided a way for us to enter into the holiest of places despite our wretched sin.

He goes on to say, "Why do you think evil in your hearts? For which is easier, to say, 'Your sins are forgiven,' or to say, 'Rise and walk'? But that you may know that the Son of Man has authority on earth to forgive sins"—he then said to the paralytic—"Rise, pick up your bed and go home." The words couldn't have hit me harder if the Bible literally smacked me in the face. Which is easier? Option A - forgive all of your sins so that you can one day enter heaven or Option B- heal a man of some piddly little paralyzation. In my desire for God to heal me and leave me on this earth for a few more years, I had lost sight of how much he has already done for me. God sent his son, Jesus, to die on the cross and bear the weight of our sin. So, that by believing in Him, our sins would be forgiven, and we can spend an eternity in the presence of the almighty God. WOW! And I was worried about some brain cancer. Even if God doesn't heal me, the end result is that I get to spend an eternity praising and worshiping the great I AM?! That's not a bad second option for me.

The extra good news is that Jesus does heal the paralyzed man. After forgiving him of his sins, he still performs another miracle and relieves the man from his earthly physical disability. Because Jesus was completely man and completely God, he knows both sides of the story. He knows the pains that this earth can bring. He knows the emotions of being human. And while on this earth, he felt the physical pains of beatings. His death was absolutely gruesome. So, he understands completely what it is to live on this earth. And, he continues to pour out his grace, peace, and mercy every day for those who believe in him.

As I have said, this passage has focused me in on what is really important. A miracle has already been performed in my life beyond any physical healing. I believe that Jesus Christ, the Son of God, born of the virgin Mary, was crucified, dead and buried. After 3 days he rose from his tomb and ascended into heaven. I believe that Jesus' blood shed at his "death" was payment in full for all of my sins. I believe that the only way to enter the kingdom of heaven is through a personal relationship with the one who took away my sins.

Lord Jesus,

       I pray that if there is anyone out there reading this who has not accepted You as their Lord and Savior that they would do so right now. That they would fall, broken and repenting of their sin, before Holy God, creator and sustainer of the universe, the author of life. That they would come to know you and the love that you have for them. Soften hearts this very day, this very moment. Continue to pour out your grace, peace, and mercy upon all of us. Let the Holy Spirit blow through the souls of everyone who reads this so that they may hear your words speaking to them.

Lord, I thank you for the many blessings that you have given me. I am thankful for this affliction because of the many blessings that have come out of it.  I thank you for each and every person who has prayed for my healing. I am so overwhelmed by your power and might. I am in awe of how vast your kingdom is on Earth. Lord God, I pray that you will hear the prayers on my behalf and just remove the tumor from my brain. I praise you Father for blessing each new day here on Earth with a new opportunity to live for you. Amen.

Thank you all for joining me on this journey. If there is anything I can do or pray for you, please don't hesitate to ask. Feel free to email me at TeamBASG@gmail.com.

Nothin' but the Blood of Jesus

So, a pretty big event in my life occurred this Sunday. I was baptized! I have been saved by grace for over 13 years, but I had never done the outward display for the world. It was in a word, AMAZING. Let me share with you a little about my journey.

I grew up in the Catholic church. We attended mass and Sunday school regularly. I was baptized, had my first communion, went to confession, and eventually I was confirmed. I also spent a fair amount of time on the weekend with my moms parents, Granny and Papa Wurst, who went to a Church of Christ. Growing up, it's all about learning about Jesus and the other Bible stories, so I didn't even really know the difference between the two, except for the styles in the service. I loved VBS at the CoC, because they picked us up from the house and we got to ride a bus and sing songs along the way. But I digress. Overall, I felt like I knew the story of Jesus, the miracles he performed, how he died on the cross, and all the typical people of the Bible stories. And I knew a lot of hymns. :)

Then I met a boy in the 9th grade who stole my heart. But more than that, he cared about me enough to ask questions about what exactly I believed and if that was different from what the Catholic church believed. We talked about everything the Catholic church believed. From the big issues to the little issues, he was curious and I didn't have the answers. More than finding the specific answers, I felt like I had been in a church for my entire life and realizing that I didn't even know what I supposedly believed was quite a shock.   As we started learning more I realized that I couldn't really say that I knew Jesus and that I believed that he was living in me. So, in February of '98 after many long conversations and a powerful revival at that boy's church I accepted Jesus in my heart.

Over the past 13+ years that boy became my husband and I am so very thankful for the man he is for my family. As my husband and as a friend, he told me on many occasions his opinion on baptism. He thought it was something I needed to do a long time ago, but I never felt like it was necessary to be baptized again. While I realized that the significance of the baptism was different between the Protestant church and the Catholic church, I wasn't convinced that it was right for me. Honestly, I think a lot of it was in the fact that the baptism would be the official last break from the Catholic church and I wasn't ready to let that go.  But, I wasn't afraid of the conversation when it came up. I came to the decision a long time ago that God would let me know if he wanted me to do it and that I was ok with waiting for a sign or a moving in my spirit. After all, God's timing is perfect.

Well, at 3:00 AM on July 5th, I woke up with a vision and a clear direction that it was time. I was in a white dress in a lake. And so, that's what I did. Pastor Jay was very accommodating. He was on vacation when I shared the news with him via email. And was excited to help me make plans just days after his return. He picked a beautiful spot on Lake Waco and we did the dunk at sunset. It was amazing!

I want to extend the same thanks to all of you who have been with me on my journey just as those who were able to physically be there.

I thank all you for joining me here (in blogland) and celebrating with me. I have grown more spiritually during my time at Grace than I had in the previous years combined. And I feel like over the past 2 months that growth has been accelerated beyond measure. I thank you for all your prayers. For the prayers for healing, for the prayers for my family, and just the constant outpouring of supplication. I have felt like God is carrying me in his hands every day. Thank you! I can't say it enough.

A family day

I had an amazing day today. It was practically perfect in every way. First thing this morning we went as a family of four to go have breakfast with some friends. This is a big deal all by itself. I haven't eaten breakfast since elementary school. Before I started on the steroids, the smell of food would sometimes make me nauseous. Not any more. I have to have breakfast in the morning. Aside from the fact that I can now enjoy breakfast food at a restaurant, it was simply amazing to just be out functioning as a family unit again. I felt more like a mom and a wife than I have in a long time. And to top it all off, the friends included my dear friend MA, her family, and another sweet friend from Baylor, Denka. The company was the best part of the morning. Well, the food was pretty good too. But, the people definitely made the meal.

After we finished breakfast, we came back home to play. I decide that today would be a day full of surprises, so I went to my room and got out the 4 pairs of shoes that I had stored in my closet for Chaselyn. The girl loves her some shoes so I stock up at the end of the season planning ahead for the next year. Chaselyn liked all the shoes, but she obviously picked the pink, sparkly Disney princess flip flops to wear right away. Unfortunately, her little feet are so chunky, I'm afraid that she'll only be able to wear them around the house for short periods of time. Because she got new shoes we had to say goodbye to some old shoes. One pair in particular I was a little emotionally distraught over getting rid of. Her little red sparkly shoes. These were worn so often they were like her trademark. I think I may have to do a post just about these shoes so that I can properly grieve them. On that note, they are Old Navy brand if you see them in any kind of resale shop in any size toddler 7 or above I will be at your mercy and pay whatever you want for them. So, anyway we cleaned out her shoe box. Out with the old, in with the new.

After that, it was time to go get zapped. Stanton and I left the kids with Ducky and Granny and made the trip to Temple. It was nice to get to have some alone time with him, although I must say that we have had plenty of private conversations and opportunities to pray together and grow together. But I still appreciate every single nugget of time I get to spend with anybody these days, so spending time with my best friend is pretty awesome. Stanton dropped me off at the door and I went ahead and got checked in while he parked the car. I didn't even have time to sit down before they called me back for treatment. When I came out Stanton was talking with Chris, a kind of gruff older gentleman that has struck up conversations with pretty much everyone who would listen. A very nice man indeed. Likes to give the nurses a hard time, but he's just messing with them. Today he mentioned something that absolutely broke my heart. His brother had just been diagnosed with lung cancer, but his brother lives 45 miles from the hospital. He may not get treatment because of the cost of gas to drive in every day. There's also a general distrust of doctors in the family too. Chris mentioned that the doctors will just keep finding things wrong to get your money. So I am not sure they are taking the diagnosis seriously, but to say that he shouldn't come because of the cost of gas. I was speechless. How blessed are we? Oh God, thank you. We are going to try to help the situation, and see if there is some kind of cancer society program to help get Chris' brother out.

Upon returning home, I got some of my moms leftover manicotti for lunch, took a nap, and woke up refreshed for the main event of the day - Chaselyn's first theater movie. We have been looking forward to this for months. We figured Cars 2 would be an appropriate movie to go see because she was already familiar with the characters and regularly asks to watch the first Cars movie. My friends it was amazing! I didn't watch much of the movie because I was watching her. She was so excited she was dancing to the music, she was smiling, she loved the special movie treats of Sprite and popcorn. The Sprite was an extra special treat and she couldn't get enough. I tried to regulate how much she was getting, but I'm pretty sure she got more out of the Large drink than Stanton and I combined. We were in the theater for over 2 hours. So obviously, with about 45 minutes left in the movie, she got ants in the pants. Fortunatley, ther wasn't anyone in front of us so she was satisfied to just stand and walk in between Stanton and me and dance with the chairs and play with the cup of ice and straw. She really did do great. And like I said, at the beginning she was just mesmerized and I pray that I can remember those faces.



After the movie, we took Chaselyn for another special treat. On Wednesday, Jacob accidentally broke one of her favorite headbands. She was very upset. We told her that we would take her to pick out a new headband at the store soon. So, off to Claire's we went. She picked out 2 headbands, because of a sale. The first one she picked has sparkly pink flowers. The second is rainbow colored with circles. They are very typical Chaselyn.

Upon returning we were greeted by MA and family, dinner served by a loving church family member, and we got to share the joys of the day with everyone. And then we got another surprise family of four moment. People just vanished for various reasons and we realized that it was the first time since about 6 am on May 24th that it had just been the four of us in the house together. I appreciate so much the job that our moms have been doing. And I don't want to sound like I am bothered at all by their presence, but there is just something about being just the four of us that made things seem normal. And I haven't had a whole lot of normal in a while. Stanton and I were able to play with the kids and put them to bed. And then Stanton finished a movie he had been watching, and I started blogging. Like I said, we have had enough alone time.

And that my friends is one of the greatest days I've ever had. Also the day was predisposed to be a good one because last night we had surprise dinner guests. My brother Josh and family are making a tour through TX tosee family, we didn't expect to see them until the 4th. But, it worked out that they got to come by and have dinner and some play time.

Worlds are collidng

One of the most amazing parts of having brain cancer is that all of the people who matter most are drawn together to come and see you. And they get to meet and it's like a big party where all of the people I know from all different points of time in my life are thrown together. It's fun to see my friends from Waco meet my family from Arkansas. I wish they could have met under different circumstances obviously, but I feel so blessed by the whole interaction, it's one of the many silver linings I cling to.

Most recently we had a house full of visitors including my dad, my sister, her boyfriend, my friend MA, as well as the usual family of four plus our two moms. We had fun playing Wii, watching movies, eating way too much food, and just hanging out. As I type, I imagine people are packing up their stuff for a family reunion of sorts involving Stanton's mom's side of the family. There are approximately 30-35 people coming to Waco for the weekend. It's amazing!

I have definitely been feeling the effects of all the drugs in my system. Some days are bad, some days are ok. I just reduced my steroids from 4 pills a day to 3 pills a day, I thought that would help me sleep better, but it didn't last night. I feel tired and weak all the time. I'm getting weaker too, which bothers me to no end. I was doing so good. I'm still able to function on my own, but I can't really get down on the floor any more to play with the kids. The doctors said that this would happen, as the radiation kills the tumor cells, they will swell. The swelling puts pressure on my brain, which turns off my right side. I still have complete control of all my limbs and can move them on demand, which is more than I could do in the hospital. But I am just worried that as I get weaker, I won't realize it and I'll try to do too much and not be safe. I know how stubborn I can be.

New experiences

Well, since we chatted last, I've had several new experiences. I've gone through 2 radiation treatments, a round of chemotherapy pills, I got a new fancy phone with a data plan and everything, and I am blogging from my very own IPad. Fancy, I know. :)

So let's start with the radiation. Essentially, I get my head locked to a table, by a mask that squishes my face so hard it leaves red marks for about 10 minutes after the treatment. Otherwise, the radiation is painless. Once locked in, I hold my cross that my family got me to hold, I close my eyes and try to pray. Try is a key word, because they have music playing in the room and I am easily distracted. I make three passes in the machine. The different arcs target the tumor from different angles. It only takes about 10 minutes start to finish. Which is good, because again the mask really squishes my face. I think that the radiation beams make my head feel hot, but it may just be my imaginatïon.

I am taking a pill form of chemotherapy called Temodar. I took 130mg last night and will take that amount every night at bedtime. I take an anti-nausea pill about 30 minutes before hand and it didn't seem to affect me at all on day one. Aside from nausea Temodar has been known to cause hairless in about 69% of patients. This is a little concerning to me. I am not a person obsessed with my appearance, but I don't want to appear sick. I know I'll adapt if I have to, but I'd rather just be part of the 31%. The other big side effect is fatigue. It will be hard to tell if the chemotherapy is causing it or if I am still a little tired from essentially not moving for weeks.

On that note, I am getting a PT and OT twice a week each for a few weeks. I am a little skeptical of the OT, because unlike a stroke victim, my muscles don't need to be taught how to do things again, I just need the strength back. But, I'll gladly take any and all help. With my moms around to do EVERYTHING for the kids and the house and Stanton doing everything for me, I don't get out of the recliner nearly enough. I need the PT to get me up and make me move.

Now, the fun stuff. My invasion of technology! I truly have joined the 'it' crowd with my new fancy tools. I just hope I can learn to appropriately use them to the fullest. It was the doing of some key people who love me dearly to make sure that no matter my physical condition, if I only had my left side to operate they wanted to be sure I could keep writing and get my thoughts out there. And for that I am truly grateful. Lucky for me, I can currently type with two hands and really enjoy my new toys. I was going to post a picture, so you could see the new me. But I can't get blogger to recognize the pic I took with my iPad. I'll learn soon.

Thanks for listening! And feel free to ask questions.

Steroids

steroids make you weird. I am on some considerable levels of decadron and although it has relieved the pressure in my brain to allow most of my mobility to come back, the side effects are weirding me out. my body shape has changed. my legs are skinnier, my belly is bigger. my face shape has changed too, so that i barely recognize myself in the mirror. of course there's the acne and shrinking boobs too. but above all of that the most annoying part is the steroids have made me start to dislike food. I am so hungry all the time. And people have been providing DELICIOUS meals for us. But I'm so hungry I feel like I can't savor the flavor I just need more to eat. I feel guilty for gorging on tasty treats not because of the calories, but because I don't feel like I give the food a good home. It's such a waste for me to just throw it down the hatch. On the calories though i'm apparently burning up all I eat because I'm not gaining weight.

We are getting ready for my first radiation treatment tomorrow at 4pm. I'm not real sure what to expect, but I have a peace that passes understanding. Literally. I mean can you imagine me not freaking out about a medical procedure? God has touched my brain in a profound way to protect me and I thank Him for it every day.

I'm feeling good today. I feel like I have complete mobility, but I'm still weak on my right side. But I'm able to shower on my own. It's the little things. Most of all, I miss my Jacob. He's a runner, not a sitter. So I don't get to squeeze him very much. I miss that.

Please pray for me tomorrow at 4pm the scheduled radiation appt. and at bedtime when I take my first round of chemo pills.