How Are We? Its been a long time since Ive done a pretty transparent post on how we each are doing and people have been asking recently, so here goes! I always worry with these posts, being so transparent its hard but at the same time I know it gives each of you specific ways to pray for each of us and transparency has proven so rewarding in that way. We will start with Grayson. He is doing so good. His hair is growing very rapidly and to those people who dont know our story, he looks like a perfectly healthy two-year-old. He steals the show everywhere we go with his charming personality and always acting like such a ham! He has certainly hit the terrible twos. And he is all boy! Climbing, running, and doing daredevil ask all the time! It is so good to see him be a normal kid! Although, Grayson sitting down in the middle of the parking lot because he didnt want to get in the car was frustrating, he still managed to make the cars waiting on him smile and rolled down their window to tell me how cute he is! One lady said its a good reminder to slow down in the busyness of life. I needed to hear that, that day! Health wise, hes perfectly on target with expectations. October and November was full of hiccups and although the ER trips, admissions and doctors visits throw us for a loop, truthfully they are totally to be expected while Graysons still undergoing treatment. Kids get sick and unfortunately in our situation, we have to jump at the slightest fever or illness. Grayson receives IV chemo once every four weeks, one week of steroids, followed by three weeks of every day chemo medications as well as an additional chemo on Fridays. We compound these and give them to him through a syringe at home. He tolerates them well although he is still on around-the-clock Zofran to combat the nausea and vomiting. His counts remain on the lower end but high enough that we can be fairly functioning members of society! Its nice to be out in the world again, but after being on isolation for nearly a year, I often find myself and Grayson seeming overwhelmed with the running around and social aspect. Its a transition, for sure! You all know how to pray for G-man: Continued health, resilience, and no broken bones being a crazy boy! :) Kaitlyn is doing great! She is thriving in the PK with a new teacher this year. She rates meets to Exceeds standards in every category! She just finished her semester of gymnastics and has chosen to just do you dance from here on out. She loves her dance class and her friends! we have begun to see intermittently personality traits and fears that the last year has placed on her. One day I was outside during naptime and she couldnt find me. She was hysterical and crying that she couldnt find me and she thought I left. It took nearly 30 minutes to get her calm down. Its moments like that as a mother that break your heart! She also was very anxious at a field trip to the fire station and verbalized afterwords, she thought they were going to take her Bubba away. we simply continue to love on her and cannot say thank you enough to those that have also joined us and loving on her. She needs to feel special and valued and sometimes thats hard when so much attention goes to her brother. She is compassionate, loving, and very sensitive to Graysons needs. She will check with us to see if weve given him his medications so he doesnt puke and loves on him during the days he doesnt feel good. She is going to have a servant hearted attitude for the rest of her life! I cant wait to see what profession she will choose. Period. Her independent, strong, and compassionate heart will take her so far in life! Pray for her continued success in school and as she deals with some of her raw emotions. Pray that she continues to create good personality traits as a result. Brady is a fighter! He fights every day for our family and manages to stay on top of his three businesses at the same time! In the 16 months since Grayson was diagnosed, he is only had to take off a total of eight days due to Graysons medical issues. That is dedication! His hard work over the past 3 1/2 years at sunshine cycles is paying off. His business partner and Brady just completely renovated the store and are in the process of rebranding! Its been stressful and extremely busy but it is so worth it to see how a strong work ethic pays you back in the long run. The store has been renamed bird legs bicycles which for those of you who know my husband and his legs (and his nickname since college), youll get it! ;). Brady finds himself tired often, but who wouldnt when you work from 5 AM to 11 PM almost every day with breaks in there to eat dinner with us, play with the kids and help with bedtime! He truly is an unsung hero in this battle. The respect I have for him and his care of our family, is more than I can put in words. He tends to wake up in the middle of the night and cannot go back to sleep due to all the things on his brain. Pray for his strength, ability to deal with stress, and that he can rest well and find rejuvenation. (Praying that he can find some time to get on a bike and pedal out some stress would be a good thing, too!) Me? Well, I am constantly on what feels like a rollercoaster. Highs and lows. Ive been in a funk for awhile now. Im tired. October and November were rough and they proved a lot for my brain and heart to handle. I feel like Im out of body half the time. Running from one thing to the next without having time to think. I have missed paying bills, paid them to the wrong provider, accomplished very little on things I need to. Totally out of character for me. Its driving me nuts. I just cant seem to get my head screwed on straight. I am just plum tuckered out and overspent. In great news, things with the Hang Tough Foundation are rocking and rolling! Our board is formed and we are in the beginning stages of filing our 501(c)3. Thankfully, a friend, Brian has stepped up to the plate as the President of the Board and is taking the lead on this project allowing me to be Vice and not have as much responsibility in our current situation. Glory be!! It is SO exciting to see the pieces begin to start falling into place and actually happening! Couldnt possible be happier with the Hang Tough Foundation and the Board that weve brought together. Big things are going to happen! This past week, as I was driving to Gainesville, it was my dear friends daughters first birthday. She was sick with a viral bug and feeling really crummy. A completely innocent comment of Poor Baby! I hate that she is sick on her first birthday! riled up some unwanted feelings within me. Lets be honest...I often feel some of these emotions and they arent pretty. It was anger and bitterness. Sweet Kennedy was sick with cough, fever, and feeling crummy. Yet, all I could think about was my son on his first birthday. He was REALLY sick. He was fighting for his life with every fiber of his being. I was wallowing in self pity...angry about how Grayson spent his birthday. I find myself comparing our situation to others. And that is NOT fair. I get so angry with myself every time I do it. It is not worth comparing and being angry or bitter doesnt solve anything. Yet, I am human and these feelings well up at unexpected times and situations where it truthfully doesnt matter. Then, as soon as the feelings come...they go. And they are replaced with guilt. Guilt that I am so angry and bitter about stupid things when there are other people who dont have their child with them anymore. Why do I have Grayson still in my grasp when other families are grieving the loss of their child? Its a very common feeling among parents who have a child that survive. It is just part of the reality we live in. This is just a small sample of the daily emotions and thoughts in my head. I tell you this not to depress you or have you worry about me, I only say this so you know I am human and I am not always SuperWoman. And I am totally okay with that. However, I was needing something to pop me out of my funk where these types of emotions seem to creep in more often. Tonight, Brady and I attended CityChurchs Christmas on the Moon. It was incredible. The music was amazing, as always and Pastor Deans message was spot on. It was what my heart needed. As Dean preached, he referred to John 3:16 and I was instantly reminded of this post that I made last Christmas. At this time, Grayson was suffering from his worst round of mucousitis, a side effect from chemo. Essentially, he had what appear to be canker sores lining his entire mouth, down through his throat, stomach, and intestinal tract and many more visual canker-like sores on his bottom and privates. It was AWFUL. He was so swollen, his mouth and bottom were constantly bloody and he couldnt eat or drink. We were admitted for a week simply for a morphine pain pump to control the pain. AWFUL. Anyways, I needed to be reminded of this post. I needed to hear the music tonight (similar to when I made this post) and of that exact scripture that I referred to last year. The service did something for my heart. I needed tonight to help me snap out of my self pity party. I needed to be reminded that I am loved. Loved in all my imperfections. Loved, even though my heart can be ugly sometimes. Loved so much that God gave his only son to this world on Christmas to suffer for ME to live. JOY TO THE WORLD! I have copied the post below for new followers. I hope reading it or re-reading it, like I did, reminds you, as it has me, how incredible the Fathers love for each of us is and that this is why we celebrate Christmas. **Last year, many of you chose to share this post and if it touches your heart, as always, you have my permission to share any portion or post as you see fit.** Thank you for all the prayers and following Graysons journey. Our marathon is pretty relentless and we are in it for the long haul because that means Grayson is still here with us. We have been blessed in 2014 in so many ways and each of you are counted in that. Thank you for your support and love! Merry Christmas!! For God So Loved the World... By Janelle Irwin — Dec 16, 2013 10:20pm During my drives to Gainesville and back to Tallahassee, I have a lot of time to myself to think. Sometimes its good to be in silence enveloped in my own thoughts processing our new life and other times it isnt so pleasant and is filled with tears of grief. Many times I spend the hours listening to music and I find myself deep in worship, rejoicing over our blessings. Today, however, I managed to squeeze all of the above into our two hour and 15 min journey. It was a profound roadtrip that more than likely will forever change how I view the Christmas season. Let me explain, if I can even form the words to try to explain... Christmas music was filling my car...Oh Holy Night, Sing Noel, Joy to the World, Silent Night, Away in a Manger, Hark the Herald Angels Sing...You name it, I probably listened to it today. So many songs of celebration! The birth of our Savior, Gods promises fulfilled, Angels singing highest praise...good stuff, I tell you!! In between and during songs, Grayson would wince and cry in pain...mouthsores. Painful sores caused by the medicines that could very well save his life. When I would turn to look at him and whisper, Im so sorry sweet boy. How I wish I could take it all away. I would fight this for you if I could. I hate seeing you in pain. I want to fix it...I want to make you all better...Oh, how I wish I could. My words might as well have been on repeat the number of times I said these things. Tears would fall as I felt my heart burdened for my son wishing I could protect him from the cruel realities of his cancer and of this world. It is a terrible thing watching your child suffer and not being able to do much of anything to help. And then it struck me............ As the world was celebrating the birth of Jesus...can you imagine what his Father was feeling? Full well knowing that he sent his one and only son to save all of us? Knowing this sweet baby would do nothing wrong, completely innocent and suffer horrifically. Knowing he would have to watch as his kid took on the burdens of the entire world and look to his Daddy and ask, Why have you forsaken me? And do nothing in response when he did have the power to save his son because For God SO loved the WORLD that he gave his only begotten son that whosoever believes in him will not perish but have eternal life. WHOA. Heres where my brain went....A doctor looks at me as I am holding my newborn, beautiful, perfect baby boy and says, Heres the deal....You have a choice to make. Either Grayson can live a healthy, long, wonderful life with no pain OR Grayson could have cancer....I would turn him over to another family, he suffer in horrible ways that are hard to even imagine as you stand by, watch, and do nothing to help him BUT through his suffering, the cure for all the disease in the world would be found and he would save millions of lives. What do you choose? Seriously?!?! Should any parent have to make that choice?? And would it take an incredible self-less person to choose the suffering of your child while you idly watch knowing the end result is worth it?? Oh. My. Word. Wrapping my brain around it is virtually IMPOSSIBLE. When we try to imagine Gods love for us, we often think of Easter and the crucifixion, but I can honestly say that I have never thought of how God felt on the night of his Sons birth. Usually the birth of a baby is such a joyous occasion. Did he feel joy knowing this was how he was going to save the world while at the same time intense grief knowing the pain Jesus was going to have to suffer to do it knowing that was the ONLY way? As a parent, it is incredibly hard to fathom. As a parent that has had to watch their child suffer and hurt, it is even more difficult for me to imagine. Yet at the same time, it gives me such peace that when I pray to my heavenly Father and pour my heart and my grief out to Him, he KNOWS exactly how it feels from firsthand experience. And he loved ME so much that he CHOSE to feel that pain as a parent in order to save me. My eyes have been opened...such a common verse that I have known and recited since I probably knew my own name has a brand new meaning to me. John 3:16 For God so loved the world, that he gave his only begotten son that whosoever believes in him will not perish, but have eternal life. So, as we fully embrace the Christmas season and with great rejoicing and celebration of the birth of Jesus, I just encourage you to stop and think of what God must have felt at the birth of his Son. And truly how much he loves you and I to give such an incredible gift. One that I now clearly know that I would be far too selfish to give....because I love my son...and I hate to see him go through any pain...and I wish with all my heart and soul that I could take it away from him and do it myself. God had that choice. And he chose us, you and I. I look at Christmas in a new light tonight and my prayer is that I will forever view it in this way.
Posted on: Mon, 08 Dec 2014 03:47:36 +0000
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