Just when I thought I would never finish… I did! I have had this picture saved to the desktop of my computer for almost three years. Now that my graduation is only 2 weeks away, I feel so sappy and reminiscent, much like the end of a Hallmark movie. Ya know, when the music is playing and the couple is kissing. Oh yeah! Full on sappy moment!
My senior year of high school people asked me, what do you want to be when you grow up, my response was, “I am going to school to be a choir teacher, but I really want to be a MOM.” I’ll admit, I was much more confident in that statement before the sleepless nights, potty training, spilt milk, and cranky teenagers. However, although I knew more about raising kids before I had kids than I did after, I wouldn’t change a thing. After I graduated high school I spent a year in college living on compass. Had to cross dorm life off my bucket list, and then married my high school sweet heart. Five months after the wedding bells, I got the flu that lasted 3 months! I still remember throwing up in the woman’s bathroom right before I took my conducting exam. Walked out of school that day and for the next 9 months I enjoyed the greatest restaurant service ever (When you are pregnant they get ya whatever you want… and fast).
The last 19 years of motherhood have been the best thing that ever happened to me. I do find it interesting to look at the twist and turns life has taken. Although eight years ago it was more important to me to complete my Life Coaching certification, I always knew that someday I wanted to finish college…and I did. Throughout these past 2½ years, there were definitely moments I was sure my brain was going to turn into soup and drip right out of my ears. And as the grueling work comes to an end I could walk the red carpet and give a thank you speech to so many that I am sure the music would start playing before I was through.
A letter my kids wrote to me after I passed a clep test I had been studying for all day for 2 weeks straight. I about lost my mind.
Now that I am finished I have been taking some time to soak up my kids! I look forward to more Life Coaching and am excited to get back to blogging. I have been working on a few, getting them ready to post! I find it especially exciting to write for pleasure again, rather than for a report!
Many adventures to come, I will write about them in future blogs. Also, if you have any subjects you would like to see what falls out of my brain and onto the page, feel free to send me ideas…it could be fun!!!
Super Z update
It’s been a long time since I have posted. It’s been an amazing year though! My facebook timeline popped up the other day and said it has been 2 years since Zayne had his last brain surgery. Pictures of him in a wheelchair and seeing his paralysis have flooded my phone. I can’t help but look at those pictures and be so amazed at how far he’s come!! I read a post that he had taken 5 steps in the hospital and I look at him now running around and doing great!! The past couple MRI’s have come back showing this tumor to be getting smaller and smaller!! And on top of that we just went to his Neuro-opthamologist on Monday and got the most amazing report. And here how that goes…
Zayne and I took off for Grand Rapids blaring our music as always! The drive was quick and we were both excited about this visit. I had been hearing from the people that work with Zayne that they felt his eye sight was improving, so I was excited to see the results! He hopped up in the chair and waited for the exam to begin. The assistant took him through the same series of tests we’ve been through so many times and wrote down his numbers in the computer. The Doctor came in and tested him as well. He asked Zayne how he felt his vision was. Zayne, so matter of factly said, “It’s better.” He said with a confident nod. The doctor said “Why do you think that?” Zayne looked at him and plainly said “Uh….because I can see better.” Saying it as though the doctor didn’t hear him the first time. I had to put my hand over my mouth and stifle a laugh. Zayne just sat there a little confused. The doctor turned around and looked at me and said “Well, he is absolutely right. His color has improved in his right eye (which is the one that sees 400). The reason we test color every time is because it’s directly related to the optic nerve. So because he is seeing color in his eye that has struggled the most, tells me there has been a release in pressure. Meaning the tumor isn’t as tight around that optic nerve. I’m really looking forward to his upcoming MRI.” I sat there still processing what he said. He basically said the tumor isn’t as strong as it was and it’s not strangling my kids optic nerve…the nerve that allows him to see. I blinked a couple times and talked more with the doctor. We said our goodbyes and headed out the door and by the time we got to the car I was jumping out of my skin. I was so excited I couldn’t stand it! We made so many phone calls! I looked over at Zayne and said “Do you know what this means buddy?” He smiled and shook his head “Yea…it means I can see better!” I laughed and said “Yea and it means this tumor is shrinking!” He nodded his head and said “Yea… I know.” And he really did 🙂 That’s the crazy part, he knows what’s happening. He knows the tumor is going away and he is excited with us, but not surprised. He’s such an amazing kid! So smart, not only intelligent but just smart about life!!
And this Wednesday we got an MRI which he did without sedation!!!! He was so brave…going back to the MRI knowing I wouldn’t be with him and it would be the doctors and nurses talking to him. He is basically put in the MRI machine and a cage is put over his head…then it’s a normal MRI. But no one, as most of you know, is allowed in there with him. Everyone else is behind the window of glass. And for a kid that deals with anxiety because of his sight issues I was BEYOND proud that he opted to try it. He asked great questions before hand including whether the doctors would have to start all over if he changed his mind in the middle of it and wanted to go to sleep. He was just so calm. It was absolutely watching him transform in front of my eyes. The last MRI we were talking about it and he freaked out when I mentioned it on the day of. But Wednesday he seemed super nervous at first and then after he was finished asking all of his questions he seemed…good. In fact when I kissed him and said I would see him when he got out (I expected him to panic) he looked at me and said in his big man voice “Ok, Bye….Love ya” He came through with flying colors. And the results came back as well!! This tumor is shrinking bit by bit!! I’m just so excited that LIFE is changing for my boy!! Life is slowly taking steps toward allowing him to be a child. Not only is the tumor shrinking but we are also able to move to 4 month MRI’s. I know that is only 1 month longer than what they have been but that means 1 more month of getting to be a kid!!! I’m BEYOND happy for him to slowly but surely step out of this journey we have been on.
We are so thankful for this news!!! And couldn’t wait to share it with everyone!! As always thankyou for all your prayers and support!!
“Bo. Go grab your jersey for tonight.” I said as I got myself together to walk out the door. I had some evening clients and I was doing my best to make my reflection in the mirror not look as though I had already put in an 8 hour day. Bo was ready for basketball in seconds… he loves it, and never lolligags when it’s time for practice or a game…too bad I can’t get the same enthusiasm for cleaning his room.
Ten minutes later, I dropped Bo to practice and off to work I went.
After work I caught up on the group texts for the basketball team. They were sharing the team picture and the line under the last set of pictures read…
“The last four are the team with Bo ‘not’ in an Olivet Jersey.”
Oh as soon as I saw it I laughed right out loud. You see, at the beginning of the season there was a misprint. Needless to say all the boys have jerseys that say Olivet. So when Bo grabbed his Jersey in a rush he ran out with the wrong one.
This part of the story alone, I am sure comes as no surprise to anyone who knows my family. I will openly admit, my kids get it from me. However, the story doesn’t end there. When the coach snagged a jersey from one of the boys on the other Springport team so they could get the picture with the right name on ALL the jerseys, Bo looked up at the coach, and with all sincerity said… “But coach, that is not my number…. How can I where that?” hahahaha Seriously, he was concerned!!!
I have been laughing about this for days. That kid cracks me up. As I put this blog together I found myself remembering, my very first blog was about this kid, and here he is still supplying me with entertainment. I sure do love the smile he puts on my face. And I especially love the way her marches to the beat of his own drum. He will make an amazing impression on this world someday… I am quite sure of it.
Well as most of you have heard the chemo is working! Jake and I are beyond blessed!! The week of an MRI is never any fun. However, they may become a little more fun if we keep getting news like this 😀 Here’s the story from that day.
We made our way over the familiar bridge at Devos hospital. It’s an enclosed bridge that connects the parking garage to the hospital. Zayne has always loved seeing the cars pass below his feet. I had this feeling of disbelief when thinking we used to have to come for IV chemo once a week a couple years ago. The first year ran through my mind after finding out he had a tumor. Diagnosis, put in the port, IV chemo, tumor starts to shrink, 9 months later the tumor starts to grow and a cyst had doubled in size, headaches were non-stop. At that point my little boy still had curls and a bink in his mouth. He still flew to Neverland with his cousin Wendy (Kate) whenever they were together. Today, as I looked down at him walking beside me, I see what a little man he has grown into. No more curls, no more bink, his toddler grin has turned into a boyish grin. However, he is still Peter and she is still Wendy. Sometimes I still see small flecks of pixie dust on his cheeks when he smiles and the same little light in his eyes that makes him who he is. We made it to the elevator and before I could tell Zayne which number to push, he pushed the number 10. Apparently after 4 years of coming here he doesn’t need me to tell him what floor we are going to. I smiled as I put my arm around his shoulder. I again went back in time remembering the first port access. Remembering how horrific it was. I remember when the tears had stopped I stepped out of the room leaving Z with Jake. I went out to the lobby and stepped out onto the “quiet area” that was all windows that looked over Grand Rapids. I dialed Gina and the only words I was able to get out were “I can’t breathe.” I kept reliving the moment of watching him lay there not able to understand what was about to happen, he looked so calm as the nurse prepped him for the port access. Then as she pushed the needle in watching his lips turn blue as he screamed in pain. And all Gina did was say “It’s ok, just breathe Jess…that’s the only thing you have to do right now….just breathe.” I was finally able to tell her in pieces of the horror. “He’s 3…..he’s only 3….so much pain…nothing I can do.” I said between sobs. I remember feeling so out of control to the point of insanity. I remember how heavy my chest felt. “It’s over now…Just breathe Jess.” Gina kept saying. “I have to….do it….again next week.” I said between sobs again. “Don’t think about that….it’s done TODAY…get through TODAY. He’s fine now. Just breathe and get through today.” I came back to the present as we were in the elevator riding up to the chemo floor and all quickly I found myself going back to the past to when my husband sent out Zayne’s MRI scans to 11 different hospitals. Texas was the first to call us. I remember walking into MD Anderson texting my sister at every turn. I remember the smell of the toy room on the pediatric floor. And then meeting Dr. Sandburg, the neuro-surgeon. I remember the confidence in his eyes as he looked at me and said “I saw Zayne’s scans and immediately knew I could help him.” And before we knew it we were looking at short term apartments and headed down to brain surgery so many miles from home. I think of the small yet monumental moment of being able to breathe after the first surgery. Zayne had come through it like a champ. He was off pain meds by the end of the first day, and was discharged on day 2. And for a good 6 weeks my family was whole again. No headaches, no moods, just my little family as it should be. “Mom?” My thoughts were interrupted by Zayne looking at me telling me it was time to get off the elevator. We made our way up to the front desk and got his medical bracelet. We barely sat down when Rich, the tech who always took Zayne’s vitals for all his appointments, called Zayne’s name. We walked through the familiar double doors and proceeded to the room. “Do I have to get a poke mom?” I looked at Zayne as I tilted my head to one side. “Why are you afraid of these pokes? You have your magic cream on, and it’s over in 2 seconds. Not to mention you’ve been through, not one but TWO brain surgeries.” I said this trying to encourage him to be OK with this process. Drawing his blood and having MRI’s will always be a part of his life. The doctors have said this type of tumor never really goes away and that people just keep it at bay. I just wish I could teach him to take the small things in stride. He quit listening to me and distracted himself with washing his hands and playing in the sink. Sitting in the room waiting for the doctor to come in and give us MRI results gave my mind time again to trail off to the past. This time I remembered a time 2 months after his first brain surgery. He walked through the kitchen and I saw the all too familiar look on his face. “You feeling ok buddy?” I believe he dealt with pain so much that he wouldn’t know to tell me when his head hurt a little and instead would wait until it was unbearable. “Yes Mom.” He said rather annoyed. Another classic sign he was in pain. He was only 4. So young to deal with so much, and this was already with 2 years of symptoms and the diagnosis of a tumor under his belt. I watched him slowly walk to his bedroom. I told myself it was nothing, even though I knew. My mom gut hadn’t failed me yet and it was telling me loud and clear. 10 minutes later Zayne walked back into the kitchen telling me his head hurt. After another couple weeks and a lot more headaches we scheduled an MRI. Sure enough the cyst had re-inflated almost too its original size. But it was so soon after surgery that we couldn’t go back in and deflate it so we decided to try another chemo instead. Everything was stable for a while and then, not but a year later we were headed to TX for another brain surgery. I was yanked out of my reminiscing when I felt a splash of water on my face. I looked up to see Zayne mischievously standing there with wet hands. He started laughing as I gave him a look of revenge. All the sudden his eyes got big and he said “Mom…I have to go to the bathroom.” As if he waited too long to tell me. I rolled my eyes and said “Ok…let’s go!” I took his hand and as we were walking down the familiar corridor of exam rooms on our way to the restroom, we passed the room I got the worst news of my life in. And as I stood by the bathroom door waiting on Zayne I couldn’t help but go back to that dreadful day. I remembered the oncologist going over MRI scans and I’ve seen enough of them to know what I was looking at. And I saw it. It felt like the oxygen was suctioned from the room. But again I tried to convince myself that maybe I was wrong…I mean I’m no doctor, I could absolutely have it wrong. The oncologist asked me to step into the hall with her so the kids wouldn’t hear. Both my boys were sitting on the exam table watching a show on my phone. We stepped out and I felt the hallway begin to shrink. She started to tell me of a brand new tumor that was enhancing on his brain stem. Everything I had feared seconds before had just become my reality. Tears welled. Her voice became muffled. I remember her saying she was going to consult with Texas and also a friend of hers in Boston. She also told me to keep a good eye on his motor skills as this new tumor was hovering right over the area of motor control. I had an hour and a half drive home that day with both my boys in the car. There would be no breaking down for me in that moment. And when we finally arrived home I was relieved when I heard Zayne ask Ayden if he wanted to go “mining for gems”. They grabbed their shovels and helmets and jumped on the 4-wheeler. And they were off…off to Neverland looking for buried treasure. As soon as they stepped out of the house I let the tears fall and true emotion take over. I remember trying to wipe the tears out of my eyes enough to see them driving around the pasture. Watching their smiles and seeing their boyish personalities, I found myself wishing for more time with them. Their being here with me is why I love living life. I lost my breath for a moment and when it came back to me I was asking, begging, pleading to God that He would just protect them. I knew I had no control. I had no options. I had NO WAYof fixing this. I didn’t know how to stop that tumor from growing. And I am not the mom to watch her little boy slowly go downhill from a brain stem tumor. I had nothing. I needed God to step in. I needed Him to show up. I remember looking out the window at my boys and saying out-loud “I need You to take the angel you have given me and send him with my boys from here on out. They need him…Please. If I can’t protect them from these things in life show me YOU will. ” I cried hard for a moment and when I looked up at my boys again… I saw him. My angel, who had walked me through each brain surgery, walked me through every road block and every trip to Texas, and simply showed up whenever I asked. His wings were so vast and they so easily encircled my beautiful boys. He hovered over them so protective and yet so graceful. I remember seeing their smiles, they had no idea, but I did. I just kept repeating the words thank you. I watched him for a bit and when I went to grab a Kleenex and came back he was no longer visible to my eyes. I knew God was answering my prayer. I came back to the present moment when I heard the door open and out walked Zayne. “All better?” I asked with a grin. “Yup” he said matter of factually. We walked back to our room just in time to see the oncologist walking in as well. “I’m so excited to show you these scans!!!” She said. I was slightly confused….”They are good?” I asked. “Good? They are GREAT!” She exclaimed. Her energy was palpable! All though, I found myself putting my guard up. I didn’t want to get my hopes up just to be let down once again 3 months later. It’s been a while since we’ve had good news that actually stuck. And as parents in these situations you find yourself preparing for a fall rather than stepping into Neverland believing the impossible. She pulled up the scans and I saw everything before she pointed anything out to me. The tumor on the brain stem had shrunk a CONSIDERABLE amount and one of the 3 cysts was completely gone. I hesitated to jump for joy. I warred with getting too excited. I wasn’t sure if the chemo would keep working. What if it doesn’t? What if I get excited and 3 months later the tumor is bigger than it was when we first found it? I was struggling with mixed emotions. She noticed and softly took me by the shoulders and said “This is Great news Jessica!! It’s working!!” I vacantly shook my head and put on a smile. “Yes!! Yes it’s great, sorry…I’m just….. this is awesome!!” I stammered. She pulled me in for a hug and I could tell I didn’t give her the reaction she hoped for. And I started thinking of all the bad news she’s had to give me over the past couple years. And I realized that these doctors live for days like these, just like we do. I can’t imagine working in her area. The days she gets to say ‘The chemo is working’ are probably the best days of her job. As we left I found myself on a tight rope. I could truly get excited and this as a true break in our journey…recharge so to speak…rejoice in the good news! Or I could play it safe as I always do. Not get over excited so when the other shoe drops I’m not caught off guard. I called Jake and texted my sister the news. Everyone was in shock.
“Mom, can we get Chick-fil-A on the way home?” Zayne asked “Um….Maybe.” I answered as we made our way out to the parking garage. I pulled out my phone and called my dad. My dad is a dreamer. A positive dreamer. Only a handful of times can I remember feeling him get frustrated with everything going on with my son. Otherwise it is always with such sincerity that he will say “It’s all gonna work out Jessie, it just has to. He’s too strong NOT to beat this.” And to a mom who’s been EXHAUSTED for 4 years…this is hope. He answered my call like this “Tell me some good news.”
“It’s working…the chemo is working!! The tumor is shrinking!!” I exclaimed. Zayne looked up at me puzzled. I realized at that very moment he didn’t understand what was going on. And I also realized I’ve never actually involved him in the news before. We haven’t gotten good news in a while and he’s always been so young. But he’s 7 now. I got off the phone and knelt down in front of Zayne. I held both his hands and asked “Do you know what’s going on with your tumor?” His eyebrows lowered…”No.” he said perplexed. “It’s shrinking!! God showed the doctors what medicine would help you and now that pill you take every morning and every night is making that tumor disappear.” I explained to him with a hope in my voice he probably hasn’t heard in a while. He let it register for a moment and then with such sincerity said “WHOA….” with eyes as bright and big as the sun!! And something happened to me while I watched him enter a whole new world. The belief I saw in his eyes just spoke hope to me. A different kind of hope. I watched him get excited. “That’s really good news Mom!” I saw him begin questioning things, wondering how long before it’s completely gone. It was astounding. And I found myself question my own beliefs about this tumor. Why would I want to believe anything different? Why would I want to waste one more second trying to prepare myself for bad news next? It was in that moment I decided that even if bad news is around the bend I would rather be in Neverland with him rejoicing, than in Hell waiting for the worst. I was blessed to watch the bright colors behind his eyes grow stronger. His cheeks glowed! He KNOWS, without a doubt that this tumor is shrinking. I can’t imagine what will happen next! Belief is an incredible thing!! I feel when we embrace belief we achieve the impossible God intended us too. And I found myself watching his bright eyes enter into an undiscovered part of Neverland, the part where maybe he doesn’t have to live with this tumor…at all. And on the ride home we both felt lighter. We were sprinkled with a little bit of pixie dust today at the hospital! And there is no doubt in my mind he will spread his pixie dust to everyone he meets!! Later that day I was also able to tell my other son Ayden of the amazing news! And you know what I saw? The same questions, the same excitement and then…the same belief! And I realized, this was more than Hope…this was Victory.
“All it takes is faith and trust…and a little bit of pixie dust
I first off want to apologize for how LONG it has been since I last wrote. He has been doing great on the chemo pills!! He takes one morning and night and no nausea as of now and its been 3 months!! In fact, no side effects as of now except for the multiplying of warts. OYE….as if those things weren’t hard enough to get rid of in general. But I’ll take warts over sickness ANYDAY!! Of course he is a champ!! He has been juggling school, therapy, doctors appointments, chiropractor appointments. I gotta say for being as young as he is I’m just super proud of the fact that he LOVES therapy, LOVES school and only complains now days when an MRI is coming or when he has to get a poke. And for this Mama, I can handle that. We do go back for an MRI today October 2nd and get results on the 5th. I do feel differently handling it this time around. I don’t feel as crazy and I find myself making moments count. Playing games, digging in the sand, counting his post it’s, reading books, crafting more and just having those quality moments together. Sometimes I do find myself thinking of the tumor being on his brain stem and the what if’s invade the quiet peaceful places in my mind. And when they do I feel like I need someone to rush in with the paddles and revive me back to this reality, but… I work through them as best I can and move on. I wouldn’t be able to enjoy these moments very well breathing into a paper bag 😉 He’s such a neat kid, his imagination is awe inspiring. And his personality is just adorable to watch unfold. And concentrating on that sounds a lot better than trying to figure out if the chemo is going to work or what the plan of action will be if it doesn’t or all the other haunting what if’s.
He LOVES his teacher Mrs. Halstead and LOVES his aid Mrs. Kenton! I feel they are so good at working together and understanding of what Zayne needs!! And some of the stories I hear…my boy gets so spoiled by such amazing people!! I really couldn’t ask for more support up at the school for my boys!! There are so many loving and watchful eyes on them J Makes it that much easier letting them branch out.
Ayden is doing great as well!! He is rocking out school and playing football. Never thought I would say I’m a football mom 😀 But low and behold he likes it. Jake is actually helping coach and seeing them out there together on Saturday mornings has been a blessing. There is something magical about watching my husband teach our boys!! Nothing like it!!
And on top of all that we have started the process of building our house!! Our basement is in and framing will start soon!! AHHHHH!!!!! I still can’t believe it! The ways we have been blessed by people is just unending. Blessed so much that thank you doesn’t seem to cover it. Jake and I plan to pay it forward and hopefully bless others as we have been!!
So my last post, “A Conversation Between Me and God“, was a bit on the dark side. I painted the picture of what happens when I let my fear and my imagination play together. It’s certainly not pretty. In the Four Steps to Confidence coaching series, one of the pieces I on work with clients, is putting boundaries on their thoughts and imagination. Well, just like anyone else, I have to constantly practice enforcing the boundaries on my thoughts too. Lately it has been more of a challenge than usual. After Zayne’s last brain surgery I found myself allowing my fear to run rampant and my last blog was a snip it of what that looks like at times.
However, today, I am writing about some new employment for my imagination. Rather than allowing my fear to continue to call the shots, I am learning to power my imagination with hope and faith. Shortly after that conversation I had with God in my last blog, I found myself asking the question, why not send my kids some angels? And seeing that I couldn’t find a reason not to, I put my imagination to work with my faith, even though sometimes it is only a mustard seed. Fortunatly, I heard a story once that said that is enough 😉
So I sent 2 angels to accompany my kids through life. These angels walk just a step behind each of my kids, one at their right and one at their left. Even though their wings are not outstretched, I can tell they will be massive when needed. I can see their strength in their weight as they hang from each angel who still so effortlessly carries them. The very top crest of their wings towering just above my children’s heads. Each angel carries themselves differently based on each kid’s personality. Josh’s are each strong, wise and protective. They offer protection and guidance when he needs it. One of Kate’s is much like a body guard, tall and stoic, while the other is more like a sister. She is there for comradery. Her wings are ever so delicately shimmered in color reminding me much of Kate’s personality when she was four years old. I figured this would be good since she has all brothers. 😉 Timmy’s and Bo’s angels are protective as well, but they have a little bit of that childlike playfulness to them, giving them a bit of a skip in their step when they need it.
So now when fear’s boney grip tries to pry it’s way into the crevasses of my thoughts, well I take a moment to breath and imagine these protectors with each of my kids. I told my kids of their personal guards, so when times get tough and I am not right there, they know they have someone to lean on.
Now I am not writing this to say that I am right, or tell you how to have faith. Frankly your spiritual life is between you and your maker. I am just sharing with you a piece of my faith experience that has helped me, in hopes that you would be encouraged to enforce some boundaries on your own fear. And if you need any help you know where to find me. (just to let a little secret out, the 4 steps to confidence be at a special sale price this fall, watch for more info on my Facebook Page.) Till then…imagine great things for the remainder of the summer!
My imagination runs. And not down the “how cool it would be path”. Not the path of, wonder and awe. Not the path full of light and adventure. Not down the path where I conquer my uncertainty, pushing to impossible heights. Nope, not today. Today my imagination runs down a different path, almost as if I am being drug against my will. As soon as I take the slightest peek down this dark, foggy almost swampy path, peering with slight hesitation, I feel something clutch my wrist and I am pulled along this rocky, yet muddy, cold wet road. The grip on my wrist is tight and at first I fight it hoping to run back to a different path, but it drags me further and further, gaining speed till my legs struggle to keep pace of whatever is dragging me. I reach to pry its cold boney clutch, when I see something that catches my eye. I stop resisting and I take a closer look. It is my failures. Failures from my past all piled up and yet I can see them individually. Moments later my attention is pulled to the right of the path where there is a different pile of failures, it is those I might end up making in the future. Not wanting to stay there I follow, almost willingly, this icy pull again on my wrist. Moments later I see so much sadness, it is heart wrenching. But what is it. I indulge my imagination and realize my family is in pain, crying, I am not even sure what they are crying about, so to help me out my imagination comes up with all the possibilities it could be to fill in the blanks. Someone could be hurt physically or emotionally, perhaps a car accident, a divorce or a terminal illness. The grip pulls at my wrist again, as I look down at my wrist I realize it is fear. Fear has a tight grip and is pulling me further down this path and my imagination keeps allowing it to pull me deeper until we reach my deepest fear. I almost can’t bear to see the scene, but I glance and in just one moment is it too late. My fear and imagination have become extremely powerful as a duo. The tragedies I witness bring me to my knees and I wonder just how long I will be able to stay conscious before my body shuts down in overwhelming emotion. I have experienced this before. When my fear joins forces with my imagination, when I let it run long enough I am incapacitated, a total slave to the fear and “what if’s” swirling around me. As the darkness comes, worry and despair seep over this road I have wandered way too far down. It is a thick sludgy substance engulfs me on my knees. As this worry and despair begin to flood my body I can feel myself fading. And in that moment I reach up, pleading to heavens that this insanity would not overtake me. Somewhere in the far of distance I hear a quite urging. Let them go. Why? Why would I let them go? I knew he was talking about my children.
“I don’t know that you will protect them.” I yelled into the middle of these woods. “In fact it has become quite clear to me that you will allow them to endure more than I would ever be willing to let happen.” I almost sneered. “So Why? Tell me, tell me why? I would love to trust you, but honestly I don’t.” I said with less resentment, just matter of fact.
“Because if you don’t this fear will consume you and you will die before your time.” The small urging, almost voice pressed on my heart.
“Seriously! Is that all you have for me! Come on! Give me something good.” I cried in desperation.
There the small presence was again, only its presence seemed a little stronger this time. This time sending me the message, “Although you can’t see, I can. My heart aches for your pain, but I can see victory in the end, however, there is yet a victory now, and that is you.”
“Your heart aches for me. Ha! I doubt it. If it did you would do something for me.” My voice riddled with pain and bitterness.
“There is a treasure. A treasure you can’t yet comprehend, but if you trust me it will keep unfolding to you. There is a rainbow at the end of this flood. And though your seas are rough, I have made you to walk on water, you know this. I told you this years ago, and in that moment so long ago, you believed me. It is ok that you don’t believe be now. I can understand what it must look like from your perspective, but from mine…well you will see. But right now I need you to see something.
“See what?” I questioned this voice, wondering what it would possibly show me that would help right now.
“You need to realize that fear is not gripping your wrist Jamie. You are gripping the wrist of fear. If you let go of fear. I can show you things.” This voice was now almost audible adorned with peace and strength both at the same time.
“I am not really sure I want you to show me. I don’t like your plan! I told you this, your plan SUCKS!” As soon as I utter the words, I realize, I really do think his plan sucks at the moment, but I still believe in him. So for a moment I am tempted to relinquish my grip on fear. For a moment I am contemplating letting go and trusting his words are true. Ya know, about the rainbow and me walking on water.
“Before I let go I need you to promise me one thing!” I pleaded.
“Because I can’t bear it any other way, and I don’t feel it is too much to ask. Please, just as you have shown up for me in my darkest of places and made yourself so real to me, please show up for my kids. I don’t know what adversities lie ahead of them, so please, get in their ear. When they are clutching to fear and experiencing this insanity I never want them to know, please promise me, you will make yourself real to them. I can only teach them so much, but I know if they can feel you and hear you, then they can walk though their own trials. I can’t be right there for them all the time, and I know sometimes you have had to show yourself to me in a way I could see you and hear you. Please, do this one thing for me. Do whatever it takes to show them you are there in the midst of everything. And then, I feel I can begin to release my grip on this fear.
To my readers: I hope you hear the message of hope. My fear can be scary, but I do my best to latch on to my faith to carry me through. Here is a song that I have been clinging to lately, hope it will help others.
This MRI was not what we had hoped for. Unfortunately the cyst we did surgery on for a second time has started to re-inflate, slowly, but still inflating. Also there are 3 new cysts on the other side of his brain. And lastly there is a brain tumor forming on his brain stem. I know that is a lot to take in and I’m very sorry for having to give this ROTTEN update. I’d much rather post the fun ones. However, I’d like to start off by saying how BLESSED we are. Zayne as of right now is completely symptom free!! I didn’t think this MRI would come back with any bad news and things don’t always go as planned. But this Mama is happy that her boy doesn’t have headaches and is LIVING LIFE!!!! We are not telling Zayne, Ayden or Bo of this news so those of you that involve your kids in praying for our family just let them know that Zayne will be going back on chemo to help kick this tumors butt. We want to keep energy positive and uplifting!!! Don’t get me wrong I had my time to scream, shout profanities, to write God off just to say I’m sorry to Him a little bit later 😉 As a mother I don’t understand, and I’m NOT happy or by any means OK with this news, but I do know the POWER God has placed within us all. God has always guided us, even when I am mad and yelling at Him, He always has a plan. So when you see us give us a big hug and let us know you’re going to stay positive with us and that you’ve got our back. I found myself struggling to post this because I want all the uplifting, positivity I can get going toward my kid. And when you get news like this it’s hard to stay positive: / But then I felt God urging me to “Rally The Troops” again. You all have been such an amazing support while we have been going through this 4 year journey and I know how much each and every one of you have been there for us to lean on. Seeing people post they are praying for us or getting a text telling us something funny or to stay strong. Or sharing an encouraging scripture!! All of it serves a purpose and we notice!!! We appreciate all of it!! And a special thanks to our close family. We have all been through it with this journey and we have cried, screamed, and told them the what if’s no one should know. So I just want to say thankyou to my close group that has been there for me even when I’m not so fun to be around. You guys are the best!!!
W e do have a plan; he will be going on oral chemo again. Our oncologist in TX has actually been testing the pieces of tumor they took out from both brain surgeries against these 2 chemotherapies and they seem to be attacking the tumor. We head out to Devoss this Monday for blood-work and to pick up the first round of Chemo. So we are very hopeful that we can start hitting this tumor on his brain stem quickly and forcefully. I can’t stress enough that we are going to stand strong and stay POSITIVE about this. I know we will have our moments and I’m not saying I won’t have a weak moment and post a horrible blog, but overall I will CHOOSE to have joy in this trial, WE WILL run the race and WE WILL defeat this. I hope every one of you will be able to join our family in choosing the same. Thank you again in advance for joining us in this fight!! I cannot tell you how random it is that I feel strength or comfort throughout the day and I know someone is praying for us. I will try my hardest to keep everyone updated, however my main goal for the next 2 months is to soak up both my boys and watch and learn from them ENJOYING life and soaking up summer!!!
I know It’s been a while since I’ve posted and my life has somewhat of a natural rhythm back, I think I’ll dive back in!
Zayne started Physical and Occupational therapy , lots of issues trying to get in but finally after the evaluations, we were able to start!! And as much as we STILL miss Jody from ALIVE I am confident we are in good hands. Particularly the occupational therapist. She said some very interesting things during our evaluation. One of the things she said was “Don’t ever let the doctors get in your head about what he can and cannot do. I have been studying the brain and if a normal pathway is damaged the brain will literally create a new one, not only with his left hand but with his eye sight. I am a true believer in miracles and I believe what you put your mind to, you will accomplish! The brain is a magical thing!” I sat there staring at her. I could almost see specks of pixie dust light up her cheeks and her smile was real and sincere. She was super comfortable with Zayne and seemed excited to be working with him. I felt more hope coming out of her than I had felt in anyone. She was confident and seemed to radiate light as she worked with him. I felt we had found the Tinker Bell of the therapists J And the more we work with her the more I am convinced she is!! She’s tough but fun! She pushes him not only physically but mentally. If his hand won’t respond to letting go of a toy she will rub down his arm and say “Just think RELAX….I just want you to tell your brain to relax that hand” in a soft voice. She is teaching him not only to be a go getter but also to take a breath when it’s needed. When he gets frustrated she makes him do 1 more to PROVE to him he can and then she moves onto something fun! She was also very aware of his eye sight issues. My son is so amazing at compensating that a lot of times people will forget he really can’t see much. I never once had to remind her that he needed things blown up or need to be up close!! I truly felt blessed sitting there watching her push him and encourage him all at the same time. She believes in my son. You could feel it oozing off of her!! And everything she said about miracles and KNOWING the brain is more powerful than we give it credit for…do I want someone like that working with my son? Yes!!! YES I DO!!!! I don’t think there is enough of that in this world. And I am excited to see what he can do under her care! She has us going out there 3 times a week and I am excited about that!! We are also taking him to a special Chiropractor in Ann Arbor that helps re-align the c-spine to open up pinched nerves!! And we have already seen AMAZING results in his hand!!! Slow but capable!! And his Braille is going phenomenal!!! Laura (His Braille teacher) tells me often how ahead he is for his age!! She said he is a very quick learner and is excited for how far he’s come! I feel like things are coming together! Ayden is simply doing awesome in school and LOVING it!!! When your kid comes home from a long day at school and says “BEST…DAY…EVER mom!” I’m pretty sure Mrs. Halstead is doing some pretty amazing things!!! We are also looking to dig a hole next month for our house!!! Our family could not be more blessed!! Don’t get me wrong we all have our days of looking up and screaming WHY but every time I feel life is crazy or I get down because Zayne has a whole new path to learn, I remember how amazing my life really is!! I have 2 beautiful boys that are good kids and are learning so much about themselves!! Not to mention I have amazing friends and family that when I do break down and lose my mind they are there to pick me up or DEMAND I get dressed and go to lunch 😀
Life really is good! And there are blessings all around us every day!! I find when I’m having a bad day it helps to look at the super small things and just say thankyou for them. The other day I smelled the dirt coming off the field the farmer was plowing and I had to smile. I’m thankful for the smell of dirt!! It means warm days ahead, beautiful sunshine, vibrant flowers and yummy veggies!!! And tomorrow I may wake up and not want to get out from under the covers and I may want to puke at the blog I just posted, but today….today is a good day 🙂
My sister and I were shopping the other day and she found me a white jean jacket that I must say is ADORBS!!! The best shopping days for me are simply following Jess around with my cart sipping my coffee as she pulls things of the rack for me to try on, yeah, it’s the life. Anyway, back to the ADORBS white jean jacket. As she handed me the jacket, I said with a crinkly face, “It’s white. When would I where it?”
“This Jacket will match tons of stuff, you will love it.” She replied
I went on to explain, “It’s white, I will just end up getting it dirty. You know that white skirt that I wanted sooooooo bad and I searched high and low for it?” She nodded, so I went on. “Well, I never wear it because I am afraid I will get it dirty and it won’t last as long.”
As I explained myself to her, I couldn’t help but think it just didn’t make any sense. I mean yeah, the skirt was lasting beautifully, but I only wore it once a year. Hmmmmm. Doesn’t seem like I am enjoying that skirt that I literally searched for months to find. I finally found it and now I admire it as it hangs in my closet. As I think about brushing the dust off it and wearing it, I ask myself, are you going to do anything today that would cause you to get that skirt dirty. Hahahahahahahaha! I know! I could barely finish typing the sentence before I was bent over in laughter. All my friends who know me personally are doubled over as well. “Duh Jamie, this is YOU we are talking about. Do you remember your white jeans and the ‘coffee incident’. Oh and your white coat and the other ‘coffee incident’.” Hmmmm. Maybe the theme isn’t “white” but rather “coffee”. Naaaaah.
So there I was, in the middle of TJ Maxx asking myself the question. “Do you want to by another closet ornament, or should you just spend your money elsewhere?” And just then I realized my frame of mind was STUPID. That’s right, just plain STUPID. There is no better way to put it. And this very instance can be a metaphor for those moments in my life when I don’t listen to Mrs. Frizzle’s(from the Magic School Bus) amazing advice, “Take chances, get messy and make mistakes.” Seriously let’s apply for that job, take that painting class, sign up for that committee, and let our kids drink out of the milk jug….ok, maybe that’s too far. But for real, wear the white skirt. Yup, someday I might grass stain it, get dirt on it, or maybe a kid will bump into me with chocolate on their hands. Let’s be honest, it will probably end up with coffee on it. But it doesn’t matter. I bought the skirt for a reason, it should go out with a bang! A shackled life in my closet is no way for such cuteness to remain. So this summer I vow to wear the heck out of it!! Maybe it will last the whole summer, maybe I will spill coffee on it next week… but it’s certainly better than hiding in my closet. So I tell ya, WEAR THE WHITE SKIRT. LIFE IS TOO SHORT NOT TO.
Oh and I did buy the white Jacket. 🙂 And she was right! I LOVE IT!!!