Just life

So I might just have been a little lazy lately on my postings but it's really not my fault.  Seriously, life makes me dense sometimes.  There are all of these funny things that happen throughout my day but by the time I get around to the computer, my mind is completely blank.  I'm not sure how that happens.  But we have had a lot of big things happen lately.  First, Chunks had her three month follow-up MRI at St. Jude's last week.  We weren't quite as nervous about this scan because the child is just thriving daily.  Usually if she doesn't give me a reason to worry, I try not to look for one.  So we were happy (and not surprised) to hear that her tumor is, once again, stable and has not grown or spread.  We also got some interesting news about her growth.  She may be growing "out" but she's not really growing "up".  She seems to only grow about a centimeter every 4 or 5 months which is much slower than an average toddler.  They did some blood work and tests while we were at St. Jude's this past visit and discovered that she has an almost non-existent level of growth hormone in her body.  Because her tumor is close to the pituitary gland in her brain, it is apparently blocking the release of some of her growth hormones.  So we were informed that she would most likely be a "little person".  That was a little shocking but I kind of figured it wasn't the worst thing in the world, either.  They also told us to be on the look out for puberty.  Puberty??  She is two!  But apparently it is very common for children with tumors in her location to experience an early onset of puberty.  We visited with an Endocrinologist about this issue and his exact words were, "Be on the look out for breast nubbins".  I am not sure that "breast nubbins" is a medical term in any way, shape or form but it at least brought some humor to the disappointing situation.  My husband was very disturbed by all of this talk and had some questions for me later.  My favorite was this, "How will we know if she has nubbins?  Do they look different than just chubbiness?".  I assured him we would "just know".  Even though some of this news was a little hard to swallow, we are just thankful that she is medically stable and is doing incredibly well at this time.

  Another milestone we experienced is our 8 year wedding anniversary.  It's still a little odd to me that we have been married for eight years.  There are days when it seems like we just got married a few months ago and there are other times where I'm sure we've been married at least 30 years.  We didn't plan much for our little day but we were sure to leave both kids with the grandparents.  In my opinion, when you've got children, the best "date" is just a day where you can have complete and utter uninterrupted conversations!  We had a great time and I am thankful that God has sustained our marriage for these past eight years.  I can guarantee you we would be nothing without Jesus Christ in our lives.

  Talks-a-lot has been doing great and is thriving in school.  He constantly battles with his urge to talk incessantly and has been burdened with man genes.  Bless his heart, he just has the hardest time focusing sometimes and it can really become a frustrating situation for both of us.  For instance, I can look him in the eye, tell him to take a shower and brush his teeth, get him to repeat it back to me and by the time he has reached the top of the stairs he cannot remember why he went up there.  It happens every night....no joke.  So I have been feeling the strain of trying to understand the mind of a boy, it can be a maze in there at times.  Fortunately, what he lacks in focus, he makes up for in personality.  He is quite possibly the funniest, most compassionate child I have ever been around.  

  We also did the Trunk or Treat thing at our church on Halloween and it was a blast.  Talks-a-lot wanted to be Obe-wan Kenobe so I decided that Chunks would be Princess Leia.  They didn't really have a costume in her girth and height combination so I just had to get creative.  I basically just made a belt out of a strap of leather and put it around an over-sized white shirt.  Because she doesn't have a ton of hair, the braids were also an issue.  After being creatively inspired by my own little Chunky Monkey, I made Princess Leia hair out of a headband and six pairs of knee-highs.  I feel like I got a little too obsessed with it as I found myself sewing and braiding panty hose at 9pm the night before Halloween.  Here they are posing for me:

  So all in all, I have no deep thoughts at this time and no heart-warming stories.  Life is just life sometimes and that's actually okay with me.  There's been so much drama encircling our lives the past two years that I am perfectly fine with the mundane.  But really, when you've got two of the most energetic, quick-witted, talkative children on the face of the planet, it's really anything but mundane.  I'm blessed to be so entertained in life!  

  

The knight in shining armor

I was reading an update earlier today about one of our fellow St. Jude friends who is also battling brain cancer. Unfortunately, at the end of his treatment, his "end of treatment MRI scans" showed that his tumor had grown and spread. The family was, understandably, devastated and have gone on to endure more radiation treatments in hopes of fighting this thing. Their son is actually doing extremely well and they are just leaving his future in God's hands. A similar story to our own, only we have not received any bad news on scans in a long time...for which we are undoubtedly thankful. But what got me about the story of this little boy is their most recent update. He just had his three-month scans and they came back "stable". Although this appears fantastic news to most people, in the world of cancer, it's really not. His mom voiced her frustration with the results and I completely understood her emotion. People often comment to me after we get stable results from Chunks' scans, "Well now you can celebrate and rest easy!". Um, no. Because who could ever really "rest easy" when they know their child has a monster in their brain just waiting to attack? It's this constant feeling of wanting something to change. Let it grow so we can try to kill it, let it shrink so we can believe in something concrete, let it just disappear so we can finally claim that miracle. But instead it just sits there, flirting with your fears, toying with your emotions, constantly forcing you to face the looming statistics. Sometimes this waiting game is almost worse than when you're just in the thick of it. I can vividly remember getting this huge adrenaline rush whenever we would get bad news. It wasn't that I thrived off of the horror of the situation, it was more like I got my game face on and I was ready for battle. We were going in to fight this cancer, we were going to give it all we had and God was going to sustain us through it all. And we did.....and He did. And as thankful as we are for the dormancy of those cancer cells, I'll just be honest, I won't ever rest easy until that tumor is defeated. I always picture a knight going into a castle to rescue his awaiting princess but first he has to get past this horrible dragon. Would he be satisfied to pass if the dragon had just fallen asleep for a bit? Would he be so brave to continue on knowing that the horrible monster could awaken at any moment? This is where my struggle lies.

As I have been mulling over this, it occurred to me that God already knew my internal battle. I have a feeling He has been trying to teach me a few things for awhile now, I've just been resistant to His lessons. I'll be honest for a minute, sometimes I tire of learning these lessons because it forces me to break through my skin and grow. And growth, as pleasant as the end result might be, is just not always a fun thing to experience. But I realized something about my story that has changed my perspective on all of this. As much as I envision myself as this knight coming into a castle to rescue my precious little Chunk, that's just not how the fairytale goes. I can put on all the armor I want but I will never succeed in getting past that sleeping dragon. For it was never my role to be the knight in shining armor, I'm trying to replace Someone who is waiting for me to step aside. Jesus Christ is her protector, the valiant One that will come to her rescue and save her. And what's more humbling is that I'm not even the soldier by his side in this story, I'm the maiden in the far away room, comforting the princess as she waits for her warrior. I'm not supposed to save her. That might be such an obvious thing for most people but it's been a huge discovery for me. The problem is, I just want to fight, I want to go into this battle running and in that effort I push aside the real hero. For if I am the lead then what does that leave Him? She is ultimately His child, more than she is mine, and it is simply my job to guide her, love her, care for her and stay by her side through all the ups and downs. I can fight for her in spirit, believing against all odds that her body will be healed, having faith in a miracle that most doctors do not believe exists. But I cannot defeat this cancer, I cannot rid her body of this tumor, I cannot fix her. And for some reason that fact sends me to my knees as I realize how powerless I really am in this situation. I somehow think God wants us to embrace our weakness so we can finally understand that this life is just impossible without Him. So, as hard as it is and as much as it hurts, I'll step aside. I will treasure the role God has given me as her mother and I intend to pour every ounce of myself into it. But I can step aside with peace knowing that we'll be waiting up here for Christ to come in and save us. Knowing that He will come in running to slay that awful dragon, sending it to the pit of hell where it belongs. Finding comfort in the fact that at the end of this story, either on earth or in heaven, He will rescue her.

What a difference a year can make

I was looking back at some pictures today on my computer and came across something that literally brought me to my knees. As much as I do remember from St. Jude's, as fresh as my memories still are about the daily battles we fought, somehow I had forgotten just how sick my little princess really was. And as sad as that memory is, it's also amazing. Amazing because to look at her just twelve months ago and compare it with today, you would have to conclude that her health and her life is an absolute miracle. I know I talk about this all the time but I'm still in awe over the journey Jesus walked with us and the light we have seen at the end of it all. For here we were a year ago at the end of September, in the midst of horrible chemotherapy, sometimes daily blood transfusions and constant sickness:



And here she is today, a year later, happy, healthy and thriving with every step.




How can you not believe in miracles after just simply looking at this picture. Look what God has done in just twelve months. The tumor might still be there, her future might still be unknown but for today, in my book anyways, she is healed!!

Running for a cause

Have you ever wanted to help support something that truly makes a difference in the world? Well, here's your chance. As you know, St. Jude's has played a huge part in our lives over the past year that our little Chunk has been a patient there. I know a lot of people have seen their commercials or telethons, radio-thons, etc., but I am not sure most people realize how amazing this place really is. Let me just tell you. They provide families with free housing in a place called the Target House, which is just 7-8 minutes from the hospital. The Target House is, by far, the most amazing place I have ever been to. They have a decked out playroom for the little kids, an amazing outside playground, a music room that is complete with every different video game system you can possibly imagine, a state of the art workout room, a pool table, dining hall, a constant stream of celebrity guests and individual apartment-like rooms for the families. They provide free shuttle service to all sorts of different places for those who do not have their own form of transportation. They give you a Kroger grocery card worth 100$ each week or a meal card if you are inpatient at the hospital. Their food court is amazing and includes but is not limited to a fish bar, mexican bar, gelato station and weight watchers selections. They provide any and all prescription medications at no cost to the patient as well as complete medical care at no cost. And, well, that's really just the beginning. I mean, I could go on and on about this place, it is simply amazing. And here's the thing, in the midst of all of this they have the top researchers desperately trying to find a cure for childhood cancer. They are constantly making huge advances in the world of medicine and their passion for these kids is astounding. Because they provide all of their services free, fundraising is their main avenue for income. Here is where you can make a difference. There is a marathon coming up in December called the Memphis Marathon. It is a fundraising effort for St. Jude's and goes right to the research that is needed to find a cure for these children that are battling through cancer. I signed up for the half-marathon, which is 13 miles, and have been training for about six months now. I have a fundraising page and you can donate to St. Jude's with just the click of a button. It is fully tax deductible and you also have the privilege of knowing that you are helping children just like our little Chunks-a-lot. So, whether it's just a couple of dollars or 50 dollars, it doesn't matter....every penny helps. Please check out our fundraising page and help make a difference! McKaylee's Miracle

The mosquito

Sometimes God works in small ways, not always the big, obvious, in your face kind of thing....no, sometimes it's something so simple and subtle you can just about miss it.

Throughout this journey through sickness with my little Chunks-a-lot, God has shown Himself to me in enormous ways. The fall off the bed that led to the discovery of her tumor which, in turn, actually saved her life. Yeah, that's pretty big and obvious and humbled me to my core. And there were countless things, too many to list, that happened while we were at St. Jude's that were undeniably the Hand of God intervening on behalf of our little girl. But as I get lost in the everyday ho-hum of this new "normal" life that I have come to know, sometimes I forget to notice the little ways that show me how very present Jesus Christ still is in our lives.

My little Chunks-a-lot has a problem. Well, she has many but this particular problem involves a particular annoying parasite. The dreaded mosquito. She seems to have some sort of over-reaction to the bite of a mosquito; I have been told this is called "Skeeter Syndrome" but I'm not sure how accurate that really is. Well, skeeter syndrome or not, when she gets bitten, an enormous welt appears and can grow to be as big as her little hand. The bite actually bubbles up so big that it eventually pops and leaves a scar behind. The itching she experiences is extremely intense and actually brings her to tears. A mosquito bite is, therefore, a big deal in our family. Being unusually attracted to her, if I see a mosquito around, I go nuts slapping my hands together, trying to kill and destroy. Yes, I can get quite intense when someone or something tries to mess with my children.

Last week, my husband noticed a small mosquito that had somehow made its way into our home. We spent a ridiculous amount of time "hunting" this tiny insect, but to no avail. I actually got angry about the situation knowing that it would find its way up to her room and attack her while she slept. I am not just imagining the worst case scenario, this has actually happened before....just so you don't think I am totally nuts (debatable). We finally gave up trying to win this battle against the sneaky mosquito, put the children to bed and plopped on the couch for a movie. As ten o'clock rounded the corner, we decided to clean up and call it a night. As I was going around picking up left-behind toys and library books, I noticed my husband's ice cream bowl still sitting on the floor by the couch. He had devoured it, so nothing was left but the sticky residue that now lined the bowl. I reached down to pick it up and a smile crept upon my face when I looked inside. That pesky little mosquito in all his greediness had gotten himself stuck in the ice cream residue inside the bowl and had died there. And it was kind of one of those moments where you don't say anything out loud because you really can't put into words what it is you're feeling.....but it's something. And for me it was this odd feeling of knowing that God was still protecting her. And maybe that sounds silly, I mean it was something as simple as a mosquito, but to me it was just a reminder. We might be far removed from the battles we fought at St. Jude's and we might not fight through every day the way we used to but that doesn't mean that He's not still there---watching.... guiding....protecting. And it made me realize how often little things like this probably happen all the time and I just don't even notice them. My life is too normal, she is so healthy, things are so simple now and I don't look for the presence of God the way that I used to. But He is still there and I felt like He wanted me to know that. For in the hard days, He came to our aide in the form of peace, healing, comfort and mercy and those moments in my spiritual walk have changed my life forever. I mean, He was there, He was with us, He was holding our hand each step of the way and we knew it. But now as we settle back into our routines, as life becomes busy and our biggest fear is potty-training, we might not feel that overwhelming presence; but only because we sub-consciously think we don't need it as much anymore. And I think it's just awesome that even in our every day lives, He's still there watching over us. Sometimes giving us little reminders that He is not just watching over us during the darkness, but He's protecting us in the light, as well.
" Because you have made the LORD, who is my refuge, Even the Most High, your dwelling place, No evil shall befall you, Nor shall any plague come near your dwelling; For He shall give His angels charge over you, To keep you in all your ways. In their hands they shall bear you up, Lest you dash your foot against a stone. You shall tread upon the lion and the cobra, The young lion and the serpent you shall trample underfoot. Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, And show him My salvation.” Psalms 91:9-16

The power of pain

As much as you would think this wonderful normalcy of life would help me forget the tragedy of cancer that still surrounds me, I just can't seem to let go of my memories, my fears and my pain. There is not one day that passes that I do not consider the sobering reality that I might lose my precious little girl one day. I know that sounds pessimistic and probably a little depressing, but it's true. I look at her, at her smile, her beautiful blue eyes, her chunky little rolls and it just hurts my heart. I often think, "How long do we get to keep her like this?", so happy, so healthy so amazingly "normal". The other day while Talks-a-lot was at school, I dropped Chunks-a-lot off at her grandma's house so she could play. I had some errands to run and was a little excited at the prospect of actually having some alone time. But for some reason, as I sat in my car, the silence overwhelmed me. All I could think about was, "this is what it would be like to not have her". No laughter coming from the backseat, no imaginary princesses, no made-up stories about butterflies....just utter silence. I got really choked up and a little irritated that I was experiencing this rush of emotions. It was my time and I thought that meant escaping reality for a moment and refilling my "mommy patience meter". Instead, I found myself face to face with the reality that I often deathly fear. The pain was overwhelming, the lump that formed in my throat seemed to almost burn a hole in my breath, tears streamed down my face as I quietly questioned God's timing on allowing me to feel this pain. I guess there's a part of me that thinks I should get to control when I feel things. I often think, "We've been through enough, we need a break.", and as true as that might be, God's intentions for allowing pain in our lives is for our good.....and ultimately for His glory. This is a concept I have wrestled with a lot lately. How can something be for God's glory if it physically and emotionally hurts so badly? How can this glorify Him? And the answer to this question came to me in a way I would have never seen coming.

Talks and Chunks-a-lot had been playing on an indoor playground at Chick-fil-a the other day and after making many climbs up the plastic slide, Talks-a-lot had quite an impressive raw spot on both of his knees. Later that evening, as he got in the shower, I heard a yelp followed by loud crying coming from our upstairs bathroom. I ran up to see if he was okay and realized that when the water from the shower hit those raw spots on his knees, it burned and he was not too happy about it. With much whining and moaning, Talks-a-lot made it through his painful shower and had a bone to pick with me afterwards. He told me that he wished he didn't have to feel physical pain. I understood this remark but reminded him that pain helps to alert us that there is something we need to pay attention to. A strained muscle alerts you to take a break from exercising, the pain from breaking a bone helps you to make the decision to go to the hospital, and on and on the examples go. Talks-a-lot did not seem satisfied with this response and kept pushing the fantasy of not having to feel anything. The conversation went back and forth for awhile and finally I said, "God created us this way for a reason. He knew that we needed to feel pain to help us......" my voice trailed off. Have you ever seen someone throw a brick into somebody else's face? Neither have I, but that is exactly how I felt at that moment. Boom....thud. It just hit me like a ton of bricks. All of this pain and trauma that God has allowed in our lives is for our own good. To shape us, to change us, to bring us into a closer communion with Him. And maybe that all sounds like a "sunday school answer" but it's not. I can look at my life before all of this happened and compare it with life as I know it today and there is a stark contrast. God has managed to gain my vulnerability, my trust, my faith and my conscience. And I believe that the tragedy we are going through right now is the only way any of this could have been accomplished. And as much as it hurts, as much pain as it brings to my heart, I know that one day I will look back and see how God used this pain to forever change our lives. Sure, it has broken us down, made our hearts grow weary, created a raw spot, but this pain makes us keep fighting. It reminds us of the battle we are in, it keeps us from growing too content in our everyday lives, it always leaves us hungry for a deeper walk with Christ. We are weak with this pain, we are fatigued from this fight and that is just how He wants us. For in our weakness, He is strong. It's like I finally understood what that means and it sent chills down my spine. He allows this pain to bring us to Him so we can share in the beautiful eternity He has created for us. And in that reality, there is love in the pain He allows and something about that comforts me.
As I sat back with this brick of knowledge that God had so creatively placed in my lap, I felt so thankful for this journey. The tears and pain it has brought will never compare to the lives it has changed, mine included. What's a little raw spot if it means you get to follow your Savior home?
This pain has created weakness in my once-thought ability to be self-sufficient and so I turn to Him. Knowing that there is no way I could ever do this on my own, finally realizing that His strength, His grace, His mercy are made perfect in my pain.
"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." II Corinthians 12:9

Earrings and a new puppy

So two big things have happened in the past few weeks. First, Chunks-a-lot got her ears pierced!! Although she had absolutely no idea what it meant to have her ears pierced, she just beamed at the idea of having "earrings just like mommy's"! I was a little apprehensive as I held her in my lap in the "ear-piercing chair" at a Claire's store in our local mall, but I knew she would be delighted at the final product. We picked out some cute pink, flowered earrings and away the lady went with her ear-piercing gun. The whole situation lasted less than a minute and Chunks started crying immediately, but the moment we handed her a mirror and she saw those sparkling earrings in her ears, the tears just melted. She was so proud of herself and showed off her new earrings to anyone that looked her way!

Although it was exciting just for the fact that it was a little milestone in her life as a girl, it was also exciting for a different reason. Just the fact that her immune system was strong enough for us to even consider this was enough to delight my soul. A few months ago, ear piercing would have been out of the question as it would have put her at risk for developing an infection which could have landed her in the hospital. Unfortunately, when you are on chemotherapy, life just doesn't get to be normal. And as silly as it might seem to be overjoyed at something as simple as pierced ears, it's just another wonderful thing she gets to experience in her newly-normal childhood!

Our second big thing that has happened recently is we got a brand new, baby puppy. My mom and I have been tossing around the idea of getting a puppy for awhile, but never seriously pursued it. I mean, you've got the potty training, the crying at night, the chewing on everything, all of the stuff that can drive you crazy with a new little pup. Not to mention that I am currently "life-training" a toddler which entails many of the same lessons, potty training, crying at night.... maybe not so much the chewing thing. Well, blame it on puppy-fever but at some point we changed our minds and just randomly decided that we were ready. My husband didn't really seem too bothered by our decision because my mom and I had already decided that we would share the responsibility of the dog. That way, neither one of us would get too overwhelmed with the day-to-day care of a new puppy. So last week we got a 6 week old little girl and named her Bella. She only weighs a pound and a half and is probably the smallest dog I have ever laid hands on. Talks-a-lot loves her because she will snuggle up in his lap but also loves to pounce on her toys which absolutely brings him to tears with laughter. Chunks-a-lot, on the other hand, started off adoring her but has now decided that she is scared. It all started the first time tiny little Bella discovered Chunks-a-lot's tiny little toes. Then she discovered that biting them was just as enjoyable as looking at them. This led Chunks to believe that Bella, her adored puppy-friend, was going to actually eat her. So constantly throughout the day I am having to remind my little Chunk that she will not get eaten by a one pound puppy.....I've yet to convince her.

But again, as exciting as it is to have a little puppy in our house again, I'm just overjoyed that we are at a place in our lives where this can be possible. No fear of germs, no fear of sickness, just enjoying the simplest things that I used to so often take for granted. And at the end of the day as I look at my beautiful daughter, earrings in her ears, running from her toe-eating puppy, it brings tears to my eyes as I watch her finally enjoying her childhood for what it is....for what it always should have been. They might just be earrings and a new puppy, but they're such a reminder of the beautiful miracle of life that God has blessed us with.