Don't fight the change, be the change

I know it's not over yet, but this has been a hell of a year, it's gone by fast and hard. I am left still with so much unfinished business and I need to close this shit.

I have friends again, something I totally took a break from and it feels good. Ppl I talk to daily and share with and love, most of them are forever far away, but I fucking love them and appreciate them. I lost a lot of people when Mike got sick, cool, I get it, to much, than when Aunt Janet died depression finished off the rest. I just quit wanting to be close to people because it fucking hurts. I learned after loosing PA, the only dad I could ever count on and loved me unconditionally that it doesn't matter how hard you try, you can't protect yourself from that kind of hurt and decided to try opening back up. I started being myself again and ppl like me, not all of them but the ones that count. I just thought I was a bad friend for a long time, but maybe I am not, maybe I just quit being me and loving me and as my girl RU says "If you can't love yourself, how the hell you gonna love anybody else" Rupaul is the shiz those are the deepest words right there.

Shine was a turning point for me on this one, I got as much out of that trip as Meredith did, I had fun with the kids and the adults, I let my hair down and let ppl get to know me again and it paid off. It was scary and I went back to the hotel and cried a lot, but not because I was upset, but because I missed just being myself, not a cancer wife, a mother, a daughter, a sister, an aunt, but Stefanie the person. I have reached out to a few old friends who I lost because of me not because they weren't there and Lilia, Mo, Tracy, the original Stephanie Thomas we are going to start hanging out again, you are my girls. Life gets busy but dammit we need time for being women, individuals.

Also with growth comes letting go of negative ppl and things in life and that has been a big growth for me this year, I have cut a lot of crap out of my life and that has made room for me to find myself again, sorry but if you just drain me and add nothing than I can't. If I can't be happy with you in my life than I choose me. This has been the hardest for me personally because I want to be there and help and support and love, social worker mentality dies hard. My kids need those parts of me so buh bye. Even though it still hurts sometimes, I am a better mother, wife, friend, individual for it. These people never put me ahead of their baggage even when I needed it most. I only took 2 kids to raise, the rest are bonus.

There are some ppl I have built healthier relationships with like my brother, my grandma, my Aunt, my mother, being happy with me helps me not to feel undeserving and less than so I can appreciate our differences and love them as me instead of who I think they want or need me to be.

My husband, he will forever be my best friend, I got stuck for a long while in being a cancer wife and not a wife, things were not bad, but not fulfilling either, we were just going through the motions so I did what I do when I don't know how to express my feelings and picked a fight. It was not a normal fight though, I in his words, went crazy, yes his dumbass called a woman crazy when she was angry lol but I didn't just fight with him, I made him hear me and I vented out my frustrations, not with him but what cancer took from him and I as husband and wife, I for the first time put it all out there and fully expecting it to end bad, it instead changed things, we were able to realized we were both feeling and needing the same things just both to afraid to lay them out there because there is that fear of loosing that comfort or finding out you aren't in love anymore. We found that we are still very much in love and just needed to cut the BS and say what we needed and how we felt. The tension is gone, the comfort is gone but in a good way, we are us again, silly, passionate and carry the stress together again.

My church family and God, I got lost for a while, in my faith and in feeling deserving of their love. I was angry at God, I was angry at things at church, but instead of facing it just isolated, I am good at that, but then God kicked me in the ass and reminded me what that family means to me. I love you all, I can always count on you all, when I fall there is always one of you there to catch me even when I don't let it be known that I need you. God kicked me in my ass through my Pastor, who is by far the best person I know in this world. She didn't get on me, she didn't push me, she just kept up with me, a card in the mail, constantly commenting on my post "I miss you" "We missed you today" with out fail on almost everything I said on FB, not with judgment or condemnation but with love, finally hit me that it wasn't just words, she did miss me and so did God. See Sherry Roby and God were both gently reminding me of my worthiness and Gods forgiving love. One day I heard them and started working on fixing that relationship. Now you all know I am not s perfect Christian, I don't fit in a religious box, but my God, My Pastor, My church isn't about being Christian, they are about being God like and meeting and loving you where you are at. For this I am thankful. I smoke, I cuss, I get angry with God often, but that is where I am growing from, I went backwards after Mike got sick again. I allowed some people who were not God like to hurt me and I accepted that for gospel. Once I got it together though my church family and my God was there. Our first lady too, I can't forget her, she made a constant presence on social media because that is where I was at. I am good being a work in progress, when we stop being in progress we just stop.

So what got me to these bad places, mostly my unwillingness to see my own worth. I was thinking in terms of not having enough money, my health not allowing me to be as involved as I want, being convinced that I was just not able to offer anything to others and not wanting to be a drain on others, a burden, feeling unequal while fighting for equality. The devil telling me I was not good enough. I am not sure how my changes came to be exactly, I see a lot of post saying things like "be the change you want to see" and "you have to make changes to be change" ect, but I didn't set out to change, I just did, I started making changes out of necessity, not necessarily conscious on many of them, some very precise and necessary. The more I started taking care of me and seeking happiness, the more things started to change. I didn't just change me, I just quit fighting myself and allowed myself to be again.

Not that I write much anymore, but why do I share these personal things, simply because they are part of me and I am not ashamed and maybe I will one day help someone else be ok with who they are. Stop fighting your changes and embrace them loves, but ppl out, be open to new ppl, let God lead the dance.

 

Ponder This🤔

This will be a whole lot of crazy, I will warn you now, so buckle up, because it’s the law, but if you are driving a motorcycle no need for a helmet because that is not! This is pondering of the great questions of the world or at least my world. The big questions that keep me thinking and praying like why do people assume we are all on equal footing, the mentality of, if I can than you can all the way to the seemingly menial stuff such as how would anyone know how many licks it takes to get to the center of a tootsie pop, can anyone actually, lick, count and not end up biting the dang thing on purpose or accident. Just saying, I know you can find the answer to this on the internet, but seriously, it must have been a mathematical conclusion because I just don’t think it is really humanly possible. I write this while biting into a lemon head, just saying.  

I will start off with some light stuff such as, how does a “keep off the grass” sign get on the grass? I mean obviously someone put it there I would assume, but from the start the rule is being broken and a bad example set. I don’t know how light this one is because it really gets me in a frenzy, but when you’re at the movies, which arm rest is yours? Is there a right answer and does that answer change if you are left handed? Here is one I face almost every day! Why do people push the elevator button more than once, do they think it will speed up the elevator or perhaps they think the light indicates that your message was not received and it is merely a request to try again? While on the topic of elevators WHY WHY WHY when the thing is almost empty do you not hold the elevator for the person who is just barely behind you, ever think the difference that can be made in a person’s day just by getting on the first elevator and maybe throw in a “have a good day” while you’re at it? Changing the world, changing people, making things better for the ones we leave behind can be obtained or at least helped along by pondering the little things. Changing the way we think, for instance, when driving, I am guilty too, if someone speeds up, passes me, keeps me from merging they are an asshole and are holding me up, if they are slower than you, follow traffic rules they are a moron and holding you up also. So is there really a winner in this situation if you don’t change your mindset. Again just me pondering some of the life questions that keep me up thinking at times, you will get no answers from me or judgment. If I had the answers this would be a much different entry.

Now Nature vs. Nurture? This one drives me nuts, having a son who was raised by a man that didn’t contribute to his DNA, I see so much of both men in him though he has only been raised by one. I don’t know which one has the most baring on a child, shapes who there are, plays the biggest part. What I do know is that STARWARS, YES STARWARS is nature, it is embed, it is born, my son is living proof of this so I can’t tell you nature vs. nurture but I can tell you that if you make a child with a STARWARS loving parent, that child will also like, love STARWARS, no matter how much you nurture them not to!!!

 Another one that keeps me thinking in my bed or recliner instead of sleeping is “what am I the most grateful for”? Goodness, my kids, but which one if it is only one thing, Mike’s health? Well that would mean that I am grateful for some part of cancer because if I had not almost lost him would this even be in the running? My grandparents because they shaped who I am, who I am made all these other things possible, but without being created and birthed so my parents but then again my mom wouldn’t be here without being created and born so that brings me back to my grandparents?!? I don’t know, just thinking out loud, ok that was on purpose, is it thinking out loud if I am doing it in written word? Also coming back to parents, my bio dad, ugh, just NO, he doesn’t love me, it hurts me, it hurts my kids, but there was a time when he was a good dad, brief but it is in my memory and at times makes me think fondly, which always brings me back to hurt so my next question is, is it better to have love and lost than to never have loved at all or to put it better,  know someone and lose them or never know them at all? Does it depend on the person in question and the person asking or is there a general answer and how can you know if you never knew them and by then it is too late because you know them so there is no unknowing them. See this is hard stuff.

Now to lighten it up again because I don’t want anyone’s mind to explode or implode or for them to bang said head on a wall because of this entry so my next one is kinda strange, but it really could be important one day to someone, how do you handcuff a one armed man? Do you cuff him to something or to his leg or what if he was a she, it doesn’t change the answer but we often use HE instead of SHE when talking in general or hypothetic terms because MAN good, Woman less good. This one though, this one “If you could start over, what would you change” I hear this asked all the time and all I can think is WHO has the energy to start over and do this again, not me, if I had the option to start over I would probably pass unless I could know then what I know now, then maybe I could make some changes, but seriously, no, no energy to even think about this question, even think of a redo, so how could I redo and make changes so just ignore that previous statement, the answer is NO. Then there is the question of “if you had one wish” ok, now we all say something noble, but who would really use it for world peace because likely the world peace would not last, I think I would be selfish and go with money, why? because we have all heard money can’t buy happiness, that may be true but I know I could help so many people with that money that would not be helped by me using it to fix problems that will become problems again.

 A few more for fun, I could do this all day, I really could. Is it easier to be loved or love? Dang now that is a hard one. I think to be loved, but that is just one old ladies opinion, it’s not fact or an answer, just my opinion. Loving comes easy to me, but being loved is hard for me, I tend to skate around it and hardly ever let anyone see me, my raw self, I struggle after 15 years to even lay my head upon my husband’s shoulder and cry or express vulnerability and isn’t love a lot about vulnerability? Speaking of love, What terrifies you the most? Not about love, but life in general, is it possible to answer? I would imagine that even if I said, then something worse could still happen, something scarier and then I would think I conjured it up because I am nuts, honestly you must have at least figured that out by now lol.

This will be my last paragraph, I know you all have better things to do than follow me on this tangent. So a fun one maybe is what you would title your life if it was a movie, not really asking, just asking. (Again I am nuts remember) Then this one that I thought of after watching 13 reasons, if you did a wrong act and no one was there to see it, is it still a wrong act? Now we are getting to the point of this rambling, the one with no point. Well is it? In order to fix this world folks we have to think, we have make choices and we MUST change how we think, how we think about the simplest things to the most though provoking like, is a terrorist just a terrorist or a freedom fighter, does it matter if we don’t agree? I don’t know all these answers and as I said most of them don’t even have a correct answer, this post was just to get you thinking, I think all the time. Talk less listen more from Hamilton, Talk less think more from Stefanie.

I am adding a paragraph because after rereading this entry I am not sure my vision for this entry was clear enough. Pondering? Thinking about situations, questions, people and life in general at times. Think of Christian, Muslim, LGBT, Straight, Race, Atheist, Democrat, Republican and on and on, there is no correct  or wrong answers to any of these categories either, just our perception and how we choose to react to our opinions and feelings that are charged just like some of my other examples above. How can a single one of us KNOW if something is right or wrong, we can only judge based on our own thought processes and prejudices so we do, but if you stopped to think, stopped to put yourself on the other side for a moment, stopped to think of the person behind the label does that, can that change your reaction, your hate, your anger. I think it can, we have become reactors instead of thinkers. Yes I said WE, I can tell you after the Orlando Massacre, and then the shootings by and of police all around and the kid and the alligator, my brain and heart exploded and I started ranting and cutting people away. I may not be able to understand all the hate, but I have to stop and look at the people behind it and see them as people just as I ask you to do. Stop and see those you hate or are against and see the person, if you are against a person than I guess you are something to ponder on your own.

 

<3

Caregivers Journey

I think about that day when cancer took away, our security, happiness all the things we had before. The fear inside my soul, the anger in my heart,  the things the kids would have to endure. I flashed regret for all our stupid fights, the times I said to go away while now I begged God to let him stay. Sitting by his bed wondering if he knew all the love I have for him even when we disagree, if he had to go would he ever know all that he means to me. Scared to ask the questions, maybe didn't want to know, the answers a heavy mystery. Living with uncertainty would soon become normal for this family.

I cry myself to sleep thinking about life with just me, I could never measure up to us. Two best friends, lovers, two people meant to be. I lay in our bed snuggled up with our kids feeling incomplete. Trying to hide the tears and my pounding heart beat. Never wanting to look weak. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Sunrise, sunset, even when only the stars are awake he needs me. The hospital is where we live, we trade in the sound of kids playing and comedy on the TV for the deafening of the beeping IV. People come and people go forgetting this is the only life we now know. Kids look forward to weekends only for visits and hospital food. Wash your hands, don't be to loud, the medicine makes him sick. I know it's hard to comprehend he has to have it to feel well again. I know you understand, it's still not fair I miss our family all together too. We will see you soon, never forget Daddy and Mommy love from the earth to the moon.

I cry myself to sleep there is only one of me and I need two. One for him and one for them. I try so hard to be it all, do it all,  can't let even one of them fall. I lay awake and weep for the memories I want to make instead of the struggles and the smile I fake. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Happiness now is the days he gets to spend at home. Excited and afraid, the family is together, I wouldn't call it bliss, no nurses or doctors a button a way, what if there is something I miss. Appointments, treatment, tests, out of the hospital and still no rest. Kids sleep at times in an emergency room chair, another transfusion, blood or platelets, oh look babe your getting some hair. Medicine refills, no money for bills. Yes my loves I can come to your festival at school, I promise I will try to take you to the swimming pool, I didn't forget I am just unorganized, no dad can't go his immune system is still compromised. All the fighting to live for his kids and his wife, then he breaks me by trying to take his own life.

I cry myself to sleep, I am not as strong as they think at all. If I was, why do I lay here at night and bawl.  Would they all still love me if they knew my wonder woman act was not real. A mom, a wife, a caregiver, stress is what I feel. I can't think only act and nothing I do is based on fact. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

It's been 2 years now living in heartbreaking cancer hell. We get good news they don't see one active cancer cell. Doc says treatment has to stop, another year of maintenance chemo was planned. The benefits however don't out weigh the risk at hand. Remission, a loaded word but we know the definition. He is better, only they say his health will stay in bad condition. We know it's a blessing, a real life miracle before our eyes. We are expected to be happy the cancer it was defeated. It's hard for people to understand that we still feel cheated. There is no going back to the way things were, life after cancer can never be like it was before.

I cry myself to sleep, even now no sobbing to sleep transition. I should be felling better the cancer is in remission. You can't understand the heaviness of my heart. This journey is more like a raging storm that tore our world apart. Rebuild after this, I don't know where to start. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

It's been 3 Novembers now, living paralyzed with fears. We will make that giant milestone in just two more years. Monthly doctors visits, scans have been all great. We had a margarita party we were ready to celebrate. Having that party to soon was a big mistake. That year was filled with gut wrenching heartache. It broke his spirit when we lost mamaw, saying good by was so hard. We also lost 3 beautiful friends, all this loss caught us off guard. Why does god take the good people my daughter asked leaving hospice care, I didn't know how to answer why god took Aunt Janet instead of answering my prayer. Losing her, a piece of my broken heart did wilt, at that moment in the hall is when he and I discovered survivors guilt.

I cry myself to sleep, Will this unrest end before my heart stops beating? This monster in my life is so defeating. Cancer took all these angels away, from their loved ones who watched them fight for life every day. I have prayed, pleaded and tried to understand what the purpose of all this in my life. When I was a little girl I didn't dream of being a cancer wife. Mornings come, the evidence is gone, another night with tears instead of sleep but show the must go on.

Last year was impossible how much more could we take? There was no more pieces big enough to brake. Our heart had been broken, then shattered, We looked to God again to be the glue as the pieces we gathered. It took some time for God to heal our hearts amen, but just like before we found our happy again. After all until now all his blood counts were stable. Yes until now, to tell my kids again, would I be able? This time chemo won't help him get well, the only thing that could save him was donor stem cells. We fought blood cancer, we walked with LLS only to find out that the treatment caused him to have MDS. What in the world was this he had wrong, a bone marrow disorder and this new journey would be long.

I cry myself to sleep, I can't go another round. I pray to God above on my knees on the ground. I told him, Lord Jesus I am so angry with you, I don't understand your plan, I don't understand how strong you think I am, I can't do this again, you can't think that I can. I am not as strong as thee, you are Mighty God and I am just me. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Bone marrow biopsies, weekly blood test, he gets sicker and sicker, no time for rest. More time away from the kids they are devastated, but we are all happy that he has had healthy stem cells donated. We pack our bags while talking about funeral arrangements and what I will do if he don't make it home. I have not fought with him this long and hard, to lose the love of my life to myelodysplastic syndrome. Five long weeks at Markey, chemo, throwing up, diarrhea, swelling, dementia, no smoking and then he tried to die in front of my eyes. It's not the first time he tried to leave me, he previously had 6 other tries. Now I know he didn't try to leave I just speak how I feel, If he ever left me unwillingly how would I deal.

I cry myself to sleep, I want to go home with my kids I can't take it here I am spent. I am here in a room, no Aunt Janet to vent. She was my rock and solo cheerleader, now she is gone and I really need her. With her I was me, didn't feel I had to pretend to be strong. I didn't even have to speak and she knew what was wrong. I don't take for granted there were many who care, Lisa and Karen I know god sent you there. Mom did her best at home to fill my place, it was hard on her keeping up my pace. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Finally we make it back safe and sound, after miscommunication and the correct blood counts were found. So far he's alive and doing okay, we are finding a routine, living day to day. Ups and downs are part of the path, so many pills, finally got rid of the tricath. Many days he is sick  as hell and others he is doing well. I must go to work because we need to survive, the kids need to eat so even though he shouldn't he has to drive. I will never not think about the mess cancer has made, I will never feel secure or not be afraid. I don't want him or any one at all to think I wrote this to complain. I love him forever and having him here is worth all the pain.

I cry myself to sleep, it has become a routine, the kids are now twelve and fifteen. When he got sick they were seven and ten, but this is now and that was then. So much energy and time has been used, while cancer made me hurt and feel abused. I have withdrawn from some of life and people I love a bunch, because I wanted to just stop losing those I people to cancer so much. I hoped it would work, no I couldn't keep it at bay , because now despite my efforts it's trying to take my grandpa away. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Strength and Faith

Not a day has gone by since we found out that Mike has secondary MDS that I have not cried. I have cried tears of fear, tears of happiness at a remembered memory, tears of confusion and tears of sadness. I have cried because of a song that played and because I lay next to him in bed knowing that there may be a day in the nearer future than I am prepared for that I don’t get that privilege.  I cry so my kids don’t have to and so they can, so they can feel secure. They have to know they are not alone, if they see nothing but strength how will they know it is ok to be scared, confused, sad, and even happy. Some people see this as weakness or a lack of faith. Since this show of emotion is out of my control I don’t believe that. It is just how my spirit is processing and preparing for the fight ahead, my tears cleanse my spirit so that I have the strength to get him through the fight we are getting ready for; I will need to be his rock, his cheerleader and his shoulder so I need to deal with my feelings now. So this does not make me weak it is the process of making me stronger. I also don’t see this as a lack of faith, I trust my God, I lean on my God, my God is who I cry too, but to trust God is also to trust his will and to know that his will may not be the same as mine, he may need my best friends for something that I don’t understand leaving me here to grieve his loss and to pick the pieces up and put them back together so rather I see my tears as a confirmation of faith. God’s will is not always answered prayers. If I told you that I trust God will save Michael’s earthly life I would be lying to you, I do believe that his will is going to be done and that he will make the best decision for the love of my life and that gives me some peace, but it still causes human and spiritual emotions that I cannot just turn off.

                I also want to say something about marrying your best friend, when you marry your best friend you have something precious it is a different love but also deep friendship, intimacy, a level of knowing each other that is hard to describe, honesty, vulnerability, trust. Michael is truly the only person in this world who knows me inside and out and me him, he is the only person I fully trust on this earth and there is no one else I can be myself around like I can him. He knows all my funny secrets and all my serious ones. He could ruin my street cred with one Facebook post lol I have been told by other friends or just people I have come in contact with that it is weird that I always “got” to have Mike with me or that I don’t like to do things without him. First I don’t “got” to have him with me, I enjoy having him with me no matter what I am doing and have since our first date.  Don’t get me wrong, I have my girl time, but I don’t need to go without him to enjoy myself, whenever I have gone out without him I feel the absence and usually call him anyway lol. We disagree, and often, because we are both hard headed, but I can count on one hand the number of times we have fought, or really gotten mad at each other. People sometimes think we are upset at each other or in a fight because of how we talk to each other but it is just us, I am his bitch and he is my asshole. His oldest sister once said that I was a female Michael, I didn’t appreciate that at the time lol but I do now. I have spent 13 years with my best friend, my soul mate and the love of my life, we have had downs don’t get me wrong, there was one time in our marriage that we were at a cross roads, however we decided we were worth fighting for and we just needed to be reminded of who we were together and eliminate the people in our life that were trying to tear us down as a family. I know some can relate to this as they are also married to their best friend, and others cannot relate. Let me tell you it is amazing to build a life with your best friend, I would not trade it for anything in the world and I feel so lucky. I, however also have a lot to lose if God’s will is to not my will, I will lose a big piece of my heart and myself that can never be replaced a one of a kind love.

These are things that have been on my mind the last few days and I will likely be blogging more as we go through this journey, even though I want to blog all the time I am usually more driven when something big is going on in my life. I share my journey as a caregiver a wife and a mother because I know that others go through some of the things I do. Maybe someone will read one of my posts and not feel so alone. Also I hope that some of my posts make others think and maybe be able to relate more and possibly know better how to respond, or at least understand those in their life that may be facing something. Everything is not as simple as “have faith” or “be strong”, just because someone may not fit into a box of what one thinks faith and strength look like doesn’t mean they are not strong or trusting God.

Grief and growth

This has been a very long and difficult year. I have had many sleepless nights much like this one. This has been a year of loss, depression and even growth. We lost Mamaw, Aunt Janet, Sandra and Eric this year and our friend Ralph in Germany is not doing so well and we may never get to see him again. I call that a bad year and I have said so many times I just want to put this year behind me and start the new year. What really does that mean though, when the new year is here that won't give back the ones we lost and it won't magically make things feel better or normal. What I really wish is that we could go back some years, there are some things I would change, I would tell people I loved them more often, I would be there more often and I would know what to do instead of being shocked in fear watching a train slowly derail so many lives. Then again it would not change things and I would have to relive it all over again. I suppose only time and faith is going to heal the wounds that are left from a year like this. Maybe that is what I mean when I say I am ready for a new year.

I have battled depression in a pretty serious way this year and it has torn me down and over the last couple months I have started to rebuild, God and I that is, I can't do it alone. I have made a point while rebuilding to make sure those in my life know I love them more often and do things differently. I have taken more time to do things with love and purpose instead of trying to do so many things at once that I am just going through the motions. I want to be a better me through all this. I used to think that wearing myself out and staying so busy that I didn't have time for meaning and purpose was my meaning and purpose, but I know better now. I will take on what I can do, where God leads me and do it so that it not just enhances my quality of life, but others as well. I sent out Christmas cards this year for the first time in a very long time and I didn't do it because it was something that people do this time of year, I did it because my pastor spoke of getting ready for Christmas and not your tree and gifts but your Spirit, I took my time and wrote something in each card for the person I gave it to, in order to lift them up and it lifted me up as well, that is doing something with meaning and purpose, did I get a card to everyone I know, nope and I still have some to pass out, but I put myself in to the cards I could give out. May seem meaningless to some but to me it was something I did to get my Spirit ready for the season.

This has also been a year of growth and rebuilding some relationships. Aunt Susie, Tracy and her family, Uncle Jimmy, David and Mary, Tisha and her kids are people that have come back into our lives through the loss and those are new relationships to cherish and grow in and I am so thankful for that. Uncle Jimmy has been there a lot for Mike and I but our closest relationship was with Aunt Janet, she was the talker and easy to know and that is why I put his name in that list, learning and getting to know him and talk to him has been a new relationship, learning to have a relationship with Uncle Jimmy instead of Aunt Janet and Uncle Jimmy has been an adjustment and one of the hardest ones. Aunt Susie has been a god send, she has filled a little piece of the holes left this year and that is a big deal. Getting to spend a whole week with her even though Mike was sick, it was still a memory that will be with me forever. I got to know her and we got to drink lots of coffee while we spent time together. Ball games and time at the park, our first time ever picking someone up from the airport. All memories. Tracy, well I don't know what I would do with out having her back in my life, she is my cousin, but also my friend, we can talk and get it because we have both been through so much. She is an amazing soul. I have enjoyed not just getting her back but becoming part of her family, watching her kids play ball, seeing my kids with their cousins playing and laughing. Tish, I have not go to know her much even though we have lived next door for over a year but I hope that changes even though she is moving, hope we get to be part of this new chapter in her life. I have gotten to know her kids well however and they are amazing and have helped to heal my kids. being so close with their cousins and having that bond, that now unbreakable bond was also sent from God, he knew what this family needed. When Elizabeth, bubbers, Trenton and Alyssa come over it fills the house with noise and love and laughter and I have so enjoyed the evenings with these kids. Again these are all memories and nothing can take those away, they can't be bought or sold. David and Mary came over when Susie was in town and we had a cook out, there was only a few of but we had fun, talked, laughed and got to know these 2 amazing people as more than just Michael's cousins and I look forward to getting to know them better.

Old relationships are something else I am looking forward to this year coming up, the past year I have lived in my own world in many ways but as I rebuild who I am and want to be this is also an area I am working on. Staring with my mom, I can say now that I have the relationship with her that I always wanted and that is amazing, I know she is there for me and my kids on all levels. She never lets a day go by that she don't check on us or send me a text telling me she loves me and she may not think I notice or care because I don't always respond but it means the world to me to have her in my life in such a positive way. My mother and I have been through a lot of ups and downs, but part of growth is seeing people for who they have became and who they are instead of holding on to the past. I love you mom! My friend Lilia, she must really love me, I have not been the best friend I want to be to her but she is my best friend and is always there for me, sometimes we don't talk for months and then it is like we. never missed a beat. She always knows when I need a pick up or help or a smile. I hope she knows I am here for her also, she is such a strong loving kind soul, she knows how to make a person feel special. We always laugh, cry and laugh some more. Well I cry, she listens. I love you Lilia! My sister, even our relationship has grown and now I know she knows that I love her and am here to help her through life not to judge her even if she makes it hard sometimes lol. This has been a big year for her in her life and I hope I have done a good job as a sister and she now knows and sees I love her and her kids and I always want the best for them. We are both a work in progress and we will reach our goals together. My friend April, I love you and we are going to get together and catch up. I miss our time together. My brother, we have always had a good relationship I think, we don't talk much but when we boy we talk and I hope he knows I am always here for him and his family also. I love him so much and I am proud of the man he has became. His daughter is a spit fire and I love spending time with her and I hope to be a bigger part of her life as she grows.

These are people I left out but know that I love you all too, it is getting late and I have to be at work early. I will end by saying, again this is just my ramblings and I guess me working out and processing this year and the one to come as it grows near. My husband Michael is the love of my life and our kids complete me. Nothing has ever changed there or will and as long as I have them, I can get through anything and everything. This year I also have God, he was always there but I didn't always care like I do now. So I guess what I hope someone may get out of this is stop to smell the roses, years come and go just as people do, you never know who you will lose in the journey of life so don't have regrets and don't take people or memories for granted. Take time to make the memories and allow people to enhance your quality of life as you enhance theirs.

Peace and Love,
Stefanie

Follow the yellow brick road

So I woke up around 5am after a restless sleep, but I didn't wake up like I usually do, which is thinking. I usually wake up already in thought and lay here thinking about any random thing that pops in my head, good, bad, funny, sad, there really is no specific thing that keeps me awake most nights. This morning was different, I woke up crying, now I am human, I do cry, I tear occasionally, mostly in the shower so no one really knows. At church I used to cry a lot until God took away those tears and put his arms around me. When I cry it could just be a flow of tears, a few tears or a mild emotional cry and complain to Michael about what ever is "making" me cry. This was different though, this was, as my friend Mo would put it "a snot cry" this was truly an emotional burst of feeling, stress, fear and sadness that my inner self could no longer carry, It lasted for over an hour, my crying usually last a couple minutes or at worst a full shower.

I have not blogged in some time because I usually make someone mad or hurt their feelings even though it really isn't about them it is about me having an outlet for my feelings, I am writer that is how we process feelings. I share them because my life has to mean something, the things I have been through has to mean something to someone other than me, I fantasize about my experiences helping someone else cope, learn or simply not feel as alone as I often do. So in short, who ever takes this personal, IT IS NOT ABOUT YOU! I am going to get personal as usual, I am not asking for anyone to DO anything, I don't want people to FEEL bad for me. As for what I do want out of this is to feel a little better and maybe have a few people UNDERSTAND me.

Not sure where to start and get this out as quick as possible because I must get ready to take the kids to the "How to festival" at the Library, going to be good fun even if it is raining and I can't feed them lunch lol.

Most of you know things have been hard since Mike got sick, not just financially but emotionally. The family has come out ok, the kids are better adjusted then they should be in my opinion because they didn't only have to deal with cancer but crazy selfish people who made a choice to make our lives more stressful and difficult, but that is a few blogs back, back to present day  ;)

We have made it out alive so to speak, but there has been an OZ here, a person behind the curtain sacrificing and struggling, being afraid all the time and knowing how importation her job is, someone who gets things done, bills paid, kids listened to and emotionally taken care of, husband medicated, doctored up and kept healthy. There is a person who makes it all seem easy, that person I am sure you know is me. I am again not wanting pity or it to sound like I am complaining, just simply admitting it because this plays a role in  why I woke up "snot crying" this morning.

Lately things have seemed extra difficult, I have learned to trust god, for the most part, we struggle but we seem to get by, but some weeks, months, days I guess I kinda of wait for God to run out, now wait, don't take that wrong, I know my God won't give up on me or abandon me, but in my life experience before I found my relationship with god has been that you can't trust things or people because they typically don't care as much as you need them to, sometime this is because they just don't care and sometimes it is because they don't know how. Again not talking about anyone specific so please don't freak out and start sending me messages saying I was being mean to you or someone else when I said that, if you feel guilty or some kind of way, well that is not me talking but I will help you work it out if you need an ear. Point being is I guess I am still learning to trust GOD fully and sometimes that makes me feel like a bad person or not a true believer.

Recently someone else that I care deeply about has gotten sick, cancer has struck again, I am not going to blog about that, but that again left me feeling helpless and scared in many ways. Also this year my family lost my husbands grandmother to cancer and a friend of mine recently lost her battle with cancer. These are all difficult and added to my feelings and fears I think, even though I don't really talk about it.

Ok, so to the point because I must go shower and get ready to take these kids to learn how to do stuff. Well I have been dealing with some things myself but only because I have too, I prefer the ignore it, it will go away method when it comes to myself. I can't ignore this.

Some know the extent of the pain I have been dealing with for the last few years, but most don't, most know I have had some pain but most don't realize it has become such a large part of my life as well as other symptoms. Due to necessity, necessity being it affecting my job, I have had to start to seek answers to the multitude of symptoms I have been having. I was thinking they were all separate issues that I needed to address. Surprise I was wrong! During this need to get better journey I started with the pain because it was affecting my everyday life and ability to work. After an exam by a couple doctors and and MRI I have been diagnosed with Cervical spinal stenosis which was explained to me as a narrowing of the spinal canal, not operable and I will need pain management to help me and I don't know what that will consist of at this time because I have rescheduled the appointment twice due to being broke. It is what it is folks, having to choose between going to the doctor or buying food sucks, especially when you work 10 to 12 hours a day and pay 650 dollars a month for health insurance, but hey that is life. I thought ok, I will do some physical therapy and maybe take some meds and it will be ok. Well I decided to call and talk to the doctor because I still have all these other symptoms and I honestly wanted to find out if pain management was really necessary as my doctor is willing to write my pain meds every month (should have been my first clue these days) and I still don't know how I will afford the visits or what ever therapy they will do. Yep this is when it got real, the talk with the doctor and google of course.

Yes I have cervical spinal stenosis, something that you typically don't get until after the age of 50 and my symptoms started over 2 years before I seeked help because I was taking care of Mike, this meant I didn't have time for me and I thought my discomfort in my body was because I was pushing my self so hard to care for him and I was pushing my body so hard to care for the family. I figured I hurt because I lifted him, helped him and I was doing everything alone such as going to the store, cleaning, working, and cleaning was no easy task with a neutropedic husband in the house that could not tolerate germs because it could kill him. Ok so back to the point, I don't JUST have cervical spinal stenosis, I have Cervical spinal stenois and it is bad, it has already gotten to the point where my spinal cord is being compromised and thus causing the pain, it is bad guys. All of my current problems, well except my anxiety lol seem to be related to this one issue. I have been having trouble controlling my bladder, I have been running in to things a lot, even got my eyes rechecked, I trip over my own feet all the time, not just sometimes, I do it many times a day. I bump in to cubicles at work with my right arm, I am off balance a lot. I have extreme pain when I stand or walk for very long at all, I had passed this off solely to my weight. I have major muscle weakness in my arms and legs, it is very bad in my right arm, doctor said that that the reason my right arm is the worst is because I had injured it when we were moving from Raven to Shasta and it caused the symptoms to progress quicker on that arm. I could in reality with out help or maybe with, lose the use of my arms or even my legs. I working hard to do my part, trying to increase my exercise and movement and lose weight, but the rest is in the hands of doctors that I can't afford. The pain and muscle weakness scare me the most, some of the other stuff is embarrassing but not as scary to me. All of these things from my bladder to my balance are because of the spinal cord being compromised.

So why did I wake up snot crying, well because I feel alone, that is part of it, but mostly because I am scared, not for my health but for my family, I am the she-ra of this operation, if I fall we all do. Though we struggle often to buy healthy food (meaning food that is healthy for our bodies like not from a box) we eat, though we don't usually have money fun, we find ways to play, free events like the one I am running a risk of being late for today eeek, or we splurge and sacrifice food or gas to do something fun. We always pay our rent and car payment, though some months I wonder how. The point is we do it, BY THE GRACE OF GOD AND I KNOW THAT IS NO ONE BUT HIM, WE MAKE IT! However how do I chose between making it and taking care of me, because this is like the chicken and egg! If I don't take care of me I can't take care of us, but if I take care of me I can't take care of us. I am not asking for money or sympathy, there are people who need those things more than me, but I do need you all PRAY that I figure it out, but more IMPORTANTLY  PRAY that I can learn how to trust, trust my GOD to take care of me and the people that need me.

If I was a WIZARD

Eyes filled with tears, sitting across the kitchen table in his striped button up shirt and trademark fedora "I wish I had magic powers and could shoot magic in to daddy and make him all better, but I know that can't happen" these were the words of my 12 year old son as he starts to talk to me about his dads illness this evening. He tells me how he don't understand how the medications are making his dad so sick and that he thought medicine was supposed to make you better. He goes on to tell me that he had a bad dream and is afraid that it will be real "I dreamed that dad was getting chemo and he just passed out on the floor and died". His eyes welled up with tears as he expressed to me the weight of the fears he is carrying. "I see dad so sick a lot and I am afraid he will die, I don't want my dad to die" He tells me that he is scared his dad will get hurt because he needs a wheel chair. "I have seen dad fall down". He expresses that he loves his daddy and he don't want to go have fun if his dad can't fun with him. He misses the days when they could wrestle and go bowling. This just turned 12 year old little man who has had to endure more than most adults asks me if he can get a job and help me take care of dad, he tells me that he is afraid that if President Obama don't get re-elected that his dad won't have the insurance he needs and he wants to help me pay for his dads medications. I am heart broken that they will not have a good Christmas this year because I can not give them what I would like and he is worried about his dad not having medication and dying. Talk about perspective!

Below are pictures that Ethan drew for me in his new picture journal one is of how he see's cancer, it is the awareness ribbon draw as a devil and the second is of his dream that he had.

WHAT CANCER LOOKS LIKE TO ETHAN

ETHAN'S DREAM

Meredith sits puffed up at the table, joining the conversation nearing the end, I asked her if she had anything she would like to talk to about. She tells me NO! in a very stern manor, but with hurt behind it. I didn't want to push her, but I did tell her that it was ok if she wanted to talk and tell us how she was feeling or if she was carrying any fears. As she fights back fears she crosses her arms as to get her point across and tells me that she does not want to talk about it.

Once the conversation is over, hugs have been given, tears have been wiped and explanations to questions have been answered to try and ease the minds of the little people who know and carry so much despite the efforts to try to keep the fears and worry from them. I have them go take their showers and prepare for bed, this is when Ethan drew his pictures when he was in bed. Meredith comes in here and says "mom I need to tell you something, but I don't want Ethan to hear me" We secure the perimeter and assure he can't hear and she says to me "I have known since you told me that dad cancer that he could get another cancer and he could die" I just looked at her, not sure what answer she was wanting from me and waiting to see if there was more she needed to add. she then prompting me to confirm her statement said "well I am right aren't I" I explained to her that yes it could happen but if we spent our days worrying about all the things that could happen then we would miss all the good things that are happening. She told me that she guessed I was right, but how can she be happy when things are so scary. I told her that we just have to work at it together every day and make lots of good memories to last us a life time and that I believed that we would have a life time to make those memories. She gave me a big hug and went to bed.

I am not sure why these conversations came up this evening, I think maybe because we went to Gilda's and some emotions came up and also Michael was gone to the movies tonight instead of with us at Gilda's and when we got home all those emotions were there in a house with out dad and they felt like it was a good time to talk to me and for dad not to hear them. It is hard for the kids to open up for the same reasons it is for us adults to open up. If we speak it than it may just be real, if we admit our fears they could come true.

It has been a hard week, I won't deny that, but we have tried to carry that burden ourselves, the kids even spent the weekend with my mother so we could have the time we needed to get the emotions of the new worries we have. By the time we got home from Gilda's tonight I felt drained, not from Gilda's but the from the accumulation of the week, then talking about it, knowing I have to go back to work tomorrow when I am not sure I am want to face people or answer any more questions, Meredith throwing a fit in the car and acting out or reacting to feelings. I didn't think I had anything left in me to give until my kids needed me and at that moment I could have went all night comforting them, listening to them and doing everything in my power to make it better.

As I finish this entry Michael is in Ethan's room talking to him, When Michael got home I didn't tell Michael the conversation that I had with Ethan, I just told him that he needed to put on the dad hat and go give his son hug, I hear tears and I love you coming from both of my men and I hear comfort and encouragement from dad for Ethan not to hold in his feelings. I hear him explaining why his body is weak and hear a dad telling his son that he is not leaving him willingly, not in those words, but the point was there.

Now he is off to Meredith's room to tuck her in and tell her good night! She is already asleep!

No matter my fears or my struggles the most unfair is those of my babies who just want to feel safe again. 

Back in a flash: The stories go on



Making Memories at home <3

It is almost 3 in the morning and I should be in bed next Michael sleeping, but I am not evidently so here we go. I am not even sure what I am writing about or what I want to say. I know I missed my blog, I have missed having this therapy for me and should have not let the fear of others interpretation or their issues deter me from what I love and what helps me so I have decided to start again. This blog was started when Michael got sick, but I had been wanting to do it long before and just never did. With that being said this blog is not just about cancer though most of the entries are about that very subject. Most of all I love to write and it does me good emotionally and mentally and that in turn helps me physically, so it is kinds like going to the doctor only I don't get a bill!          

 

One thing that is on my mind lately is my mother and no grandma you don't have stop reading at this point or call me to tell me I was mean! My mom and I have had a rocky relationship to say to the least, I had a lot of hurt from growing up and I struggled with wanting a relationship with her that just was not there and I was angry!!! At 31, I mean 26 ;) years old I can finally say I am no longer angry at her or hurt. I love my mom so much and I wasted so many years guarding my self from her that I didn't allow our relationship to grow, I can now take that blame on my self when I could not before. I was unable to leave the past behind where it should have stayed, I am a mom of 2 amazing children and I know that I am not perfect, I hope that I am better than my mother and I don't say that to hurt her, but that is the purpose right, for us to be better parents then ours and I hope that my kids are better parents than I am (though that is a tall glass to fill) HA! Just kidding about that last part. In a family where there are unhealthy cycles the only way to change the generations to come is to break the cycles and I feel like I have put a good dent in that, but there is still work to be done and I have faith that my kids will continue the healing and change of our family cycle. Over the last 2 years that Michael has been sick, I have been dealing with a lot and one of those things was trying to figure out my relationship with my mom, I have blogged about it before and got a lot of heat for it, nothing I said was untrue and it was how I feel so I am not sorry for it, but I am sorry if it hurt her, when I started that entry I was angry at her, but I was also trying to work through the things that I was angry at so I could move past them, some people don't get that because they are not me and don't process and heal like I do. I have arrived though and I can say that my mom is more valuable to me then I ever knew. She has done so much for me and my family in last 2 years, I can't even put in to words, she has helped me financially, she was the first one to get a prescription I couldn't afford or put gas in my car even though she struggles so much her self. She has helped out with my kids, been there when I needed a sitter, when I needed a break and when I wanted to choke them lol. My mom was the best mom she knew how to be and I can not only accept that, but appreciate it. I don't tell her enough how much having her means to me, I want to, but I am not good at telling, I am better at writing so I hope she reads this!! Mom thank you for everything! I realized last week when some major issues with Michael's health came up because I was able to accept my part in our broken relationship in turn our relationship has changed and grew. I have never been one to go either of my parents to talk about serious things like fear or life or asked for advice. There are reasons for that, but they are no longer important. When Michal's medical issues came up last week I did something I have never done, I drove to my moms house and I talked to her, I cried, asked her for advice. Now she is still mom so some of it was frustrating lol, but it was good. I felt like I had a mom which is something I always had, but wasn't able to accept. I never thought the first place I would go with something that heavy was my mom, but it was not a choice or even a thought of who do I talk to I just drove there and sat down and started talking. My mom and I think this is natural for a parent and I can appreciate this now because I am one, but she wants to fix things. I sometimes struggle talking to her now not because of anger and hurt but because I don't want to Burden her and I don't want her to think she needs to fix things or I want something from her just because I talk to her. I am still working on that with her, but since she is my mom I don't think that will change and that is ok. I think I am and will be the same with my kids, when they have a need or a hurt or a fear I will always want to fix it. Anyways I hope this came across the way I wanted it to, positive and an expression of my appreciation for the growth in my relationship with my mother and also me taking responsibility for my part of the break in our relationship. We call her the crazy lady, because she is crazy, but in a good way! I love ya Mommy Dearest!

 

I know some of you are wondering about what it was I talked to my mom about, well none ya business! Ok that was harsh and said out the selfish kindness of my heart. When we have the answers and we are ready to share and know what to share we will. There is unknowns and will be for always, but the tests will determine how we move forward, some decisions have been made some still have to be made and I have said it in Michael's group. I am hoping for the best and preparing for the worst and I know that most of the stress will be for no good reason other than life sucks that way sometimes. I will leave that issue there for know and hope the 3 of you who actually read this blog understand lol.

 

There is some other things I would like to share if you have not quit reading yet, I often go on and on and lose 2 out of 3 of my readers before I get to an end, but this is for me and I share it because I like to share my writing and I hope that it may benefit someone some day who struggles with life, let me be the lab rat of life and how not to do things, I am honored to be a tab bit nuts in order to improve your lives, umm yeah not really but why not!

 

The last year man, it has been a ride, so many changes, but good changes for the most part. Even though they have been good changes don't mean they have been easy. We have grown so much as a family and are really becoming an amazing family, there was time that I thought things were just going to fall apart and it was going to be all my fault. Some days I still feel that way, but that is natural being the control freak of a anxiety ridden insomniac that is me! Much to my surprise however we have not fallen apart. My kids are in a better place emotionally then they have been in years, there is still work to be done but the difference is amazing to me. They are in regular consistent therapy that works good because it is family therapy, but in a unique way, the kids have their therapy, Mike and I have ours and it all works out together, some times we work together as a family, sometimes Mike and I work on things, most of the time the kids work on things and it all intertwines and is working well. Therapy has helped a lot, but the bond we have is where it all really comes from. We have bent, but not broken!!! There is people who have tried to break us and lord know cancer has tried but we are unbreakable, I have said before that we are unbreakable but I am not sure I believed it. I do now, I have seen it unfold over the last few years in to something amazing and I know as we continue to grow and bend we will get stronger. I enjoy my family so much, even the cleaning up after them, running around, back talking, duct tape and Velcro part of them, all of them Michael included. Well maybe not the cleaning up part because I think now that he has settled nicely in to his house wife role he picks up after me more than I pick up after him lol. I mean I do the cleaning because no one can clean to calm my insane anxiety, but he does a good job at keeping things up around here, I don't think he does it because wants to, but because he is afraid of the anxiety beast, I need to give her a name, I am open to suggestions! We rock harder then Mick Jagger in leather pants and often smell like Jagger in leather pants. 

 

The move was hard at first on the kids and I, Michael, I don't think that part was ever hard for him except the packing and unpacking, he does not feel the emotional ties to the old house as the kids and I did. I am not sure why, I can only speculate, but I think leaving there made him feel more in control of his own life and when he left he was not leaving good memories because they had been tainted with some harsh reality that he had to face. Meredith and Ethan adjusted well and fast, there was still some sentimental moments when it was hard for them to accept leaving the memories, but once they realized the memories was in them it was easier, they had a lot of fear there and the last year we were there was not filled with good memories. It has gotten to a point now where they have asked us not take them to the old house, we still have to check mail and check on the place since the bank is taking their sweet time taking the damn thing, but we honor their wishes and don't go when they are with us. I am not elaborating on a lot of things on this topic because it is just not worth the stress to elaborate if you are close to us then you know, if you are not then well you don't really need to. The kids have made a lot of friends at their new home and enjoy playing and making memories. Meredith will tell me all the time about the memories she is making, Ethan he just loves having boys to play with who accept him. They both have a best friend in the neighborhood and ironically enough it is the same kid, he has become part of our family is many ways. We have neighbors we like that are friendly and good to our kids, we lived in Lynnview for like 8 years and never had that. The peeps next to us are wonderful and caring and fun! For me, it was hard at first, I didn't want to move, I had to hide that from the kids and even Michael. I expressed to Michael how hard it was for me and he never really got it, but I couldn't be emotional about it I had to just be a solider. For me though it was where I had raised my kids to this point, where Meredith learned to walk and talk and color on the walls, where Ethan learned to ride a bike and broke the window after sneaking the baseball out of his closet. It was where we had colored all our Easter eggs and built jabba the snow blob. It was where stories were read and movies were watched, it was where pumpkins were carved and firsts happened. It was where they both started their first day of school, all of this was true, but I truly feel more at home here in our little rental. I feel safer and happier and more secure. Michael and I have a heavy weight lifted off of us and that has made a difference. And just as I taught the kids, all those memories are in me not at that house and now that it has been almost a year we have made some new amazing memories and we have laughed a lot more. And having a hallway that is tile instead of carpet, ha! even the cat has made some new memories there, drop a Q tip and watch her go! She will take of running after god knows what some times and just crash in to Meredith's room lol.

 

Meredith really likes her new school, she has really grown in to her own person there, she is on student council, just last week she won the story book pumpkin decorating contest and an essay contest. She has made new friends and has said that going to school where people didn't know her history with cancer has helped her be more than cancer, she shares when she wants, but it is no longer her whole identity at school like it was last year. She is in the advanced program and is on honor roll for the first report card, umm and I still owe her the 20 bucks for that lol. Meredith has always struggled with self confidence, but we can see her growing in to her own skin, she is more confident and out going and doesn't any longer feel like she has to be in a box that someone put her in or has to be who someone else expects her to be. We are still working on body image issues from years of being made to feel that she was to fat or not the beautiful girl she is, but we are making progress on that and it will come in time.  Michael and I never put her in that box and now that we are allowed to be her parents she is able to grow in to herself and I love who she is and who she is becoming, she told me in therapy a couple months ago that she wishes she could be more like me because she loves how accepting and tolerant I am. She don't have pressure or feel like she needs to be like me, but she has taken some of my views and passions on as her own and I love that she has. She is her own little advocate for equality even if she pronounces it as equal tea lol. She is a passionate little girl and I know she will do great things in this world and I think that the changes we have made in our lives and the obstacles we have over come have given her the freedom to own that person she is becoming!

 

Ethan, my little dancing man, he likes parts of his new school but is not sold on middle school! This change was going to happen if we moved or not, but he is adjusting! I don't care for his teacher and am going to look in to getting him moved on Monday, but besides that he is also making friends at school, he has had to contend with some assholes being in the ece class and being different but dad and I have got his back, Michael even went to the school and bullied some kids for him lol. We have got that under control now and that has helped his adjustment a lot. I am also working with the school psychologist to help find ways to help him learn and I think we are making some strides in that department. When I refer to Ethan as different I don't want that to sound negative, I mean that in a good way, he is different, he is awesome and I love that he is not like anyone else or feels like he has to be like anyone else to fit in. He is one of the coolest kids I have ever met!!! Different is not a bad thing, I am different, Michael is and Meredith is. We are all different in our own way and that is what makes us work so well. My little Buddha man always puts a smile on my face when it has been a hard day, he is getting that teenage mouth and attitude about him, but he is still the funny, caring, lovable little guy that used sleep with me every night and pinch my lips until I looked like Cindy Crawford lol. He has made A LOT of friends, just today while he has been at moms I though I was going to have to hang a sign on the door that read "Ethan is at his grandmas please try again tomorrow" It was a different kid knocking on the door every 5 minutes! "Can Ethan play" no "Is Ethan's sister home" lmao, he is the cool kid and Meredith is merely his sister and will do if he is not here to play. She has her friends also, but mostly she hangs out with her brother and shares his friends. He is outgoing and willing to put himself out there and that draws people to him. He has grown a lot since we moved, there is more kids in this neighborhood for him to play with and he is the boss hog! They all gather on the porch and he calls the shots lol. He gets out and dances and draws fans off the streets lol, he will come in all the time with a dollar because someone gave it to him for dancing. There was a party down the street one night and they had the music loud and he was out on the side walk dancing and the party came to him and was watching him and invited him to come and "perform" at there family talent show, he got candy for his performance lol.

 

So as you can see we bent and didn't break, something hard turned into something great! It is scary as parents to make decisions that impact the family in such drastic ways and the fear of making the wrong decision is heavy. I was worried, Michael and I had to really do some soul searching and put a lot of our heart in to making decisions and figuring out how to make this family whole again. We were in crisis mode and that is no way to live. I am not going to pretend that everything is sunshine and rainbow, you ALL know me better than that, but we are getting through each obstacle, I just wish we could get to a point where there were no more big obstacles. I envy those who have the normal things to over come, because we have those and so much more! I think we are stronger because of what we are going through despite the great sacrifices the 4 of us have had to make. We have some wonderful people in our lives that we may not have met if we were not dealt this hand, but I can't say that it has been worth it because we have given up so much. I would like to think that we would have got here with out these hardships, fears and struggles but I don't know. I like who we are better, but I liked us before so I would trade all the growth for Michael's health and I don't think that cancer is a blessing and I could live not knowing what I do know if it meant having my husband back and healthy. However we can't change those things so I am grateful for what we have gotten out of this "journey" for lack of a better term. I love you Michael Thomas and though we are scared and struggled to find a balance with our new fear, look back at where we have been and where we have gotten and know that WE will get through anything that comes our way as a team and still be whole! You may think that we are your reason and that may be true, but my love you are our reason and I know that is true!

 

 

Day to Day

Let me try this again! Michael didn't want anything posted in the group about how he has been feeling until after his party, he wanted to have fun and enjoy the day with out a cloud hanging over his head or people "worrying" about him and he didn't want anyone not to come because of "cancer". Though yesterday was a day of recovery for him as the days after any big event or activity is, he was still very happy with how his party went, despite how he felt he said several times "I have a lot of good people in my life" , "I had a lot of fun" and "Thank you for doing that for me". For that I want to thank everyone who took time out to come and celebrate and laugh with us, it means more to him then just a ball game or birthday party!  He has been struggling emotionally and physically the last few weeks. He has been processing and coming to terms with his limitation both physically and mentally, he has kind or withdrew in order to process this new stage in his our life. The appointment with the quaky neurologist really knocked him down, but we do have a new appointment, they called this morning with a new doctor who actually has requested we bring the mri with us, so that is a positive sign, the other doctor didn't even look at it! Friday I left work a little early in order to take him in to Dr. Hadley's office to get an iv of nausea meds and nerve meds, as we know that our mind can greatly effect our body and we have been unsure of what has been causing his sickness the last few weeks. He has not been able to eat with out getting sick, he has been drinking a lot of Gatorade and eating a lot of crackers. He has been dealing with an immense amount of nausea and upset stomach, he has been dizzy quite often, which could be from not being able to eat much, his legs have been weakening even though he is doing well at staying as active as he can. When we were in wal-mart on Thursday buying the food for the party his knees buckled and the only that saved him from hitting the floor was the cart. On Saturday he refused to eat anything until the party as he was afraid he would get sick or start feeling bad and be unable to enjoy himself and he wanted to enjoy the day to fullest. He did eat at the party, he snacked and ate 3 wings, he didn't try any of his cake until Sunday afternoon. Because he waiting to eat until the party he also had to wait until the party to take his chemo pills. This made him a little anxious as he does not know from one day to the next how his body is going to react to them, there are days that they don't bother him at all and days that he is in bed all day. This is usually his good week, the last week of the cycle when he is feeling his best before it all starts over again, he has iv chemo Friday and then will spend the next week taking his biggest doses of chemo pills. This sends him in to about 20 days of feeling really bad, then the last 8 days he is usually adjusted and feeling good before starting again, he lives for that one week, but since I am writing this you know I am home and he this is not the case, he is feeling very bad, dizzy, weak and sick to his stomach something awful, we know it will pass but it is frustrating as hell! It has been many days recently that he has been in bed a lot or on the couch laying down and watching tv. The biggest frustration for him however over the last few weeks has been his feet, they are numb all the time and hurt, he has been having trouble driving because he can not feel pedals and even walking a lot. This I feel is adding to his other symptoms because he is not able to be as active as he has been and I believe this is effecting his over all health. The frustrating thing for me in all of this is it is not the "cancer" per say making him have all these frustrating problems is the poison, the medications that he takes to keep the cancer from killing him. Until the last few weeks the lowered doses of chemo he has been on since his thanksgiving hospitalization have been doing better for him. His blood counts are still responding well to the new doses which is a blessing. His body was doing a lot better also until recently. His body is tired and though he is doing better in many aspects with the new chemo doses which we are so thankful for, his body is nonetheless tired and tired of being abused by all these drugs. We are confident there will be a day when many of problems he faces day to day will be a distant memory and we know that the realization that some of them will be a constant reminder of what he has been though is. We were told many months ago that the problems with his legs and feet and even hands (though his hands luckily are not giving him trouble thankfully) were a possibility and irreversible we hoped that he would have to deal with it. Our options are to stop chemo to avoid further damage to his legs and feet or continue and possibly have worse effects. These effects are life long effects, not just "while in treatment" effects. We have talked about these options for the last few weeks and HE has decided, because ultimately these are his decisions, I am just a support, to continue with treatment. If we are to stop treatment at this time we don't know what may happen, his cancer may stay inactive or it may not, we do know the chances of it becoming active and even growing or spreading are much greater if he don't finish treatment. He feels and I agree that quitting is not an option, he is responding well to treatment, the treatment it's self is reeking havoc on his body, but it appears to be doing it's job on the cancer. We are still unsure if the issues with his memory and cognitive abilities are long term or short term and hope to get answers on that soon. His fear is that he will not be able to work again and he worries that kids and I will suffer, we will not, we are doing well and will continue to do well. He also knows that if he is not here we will be doing worse in many ways. He is going to be here and we are going to get through each obstacle that is put in front of us. He is good at pretending everything is fine even when it is not and those of us who are very close to him know this, @janet and I are good at calling his bullshit and will continue to do so and make sure he is taken care of and everyone else can help by not doing so and letting him feel normal and seen as more than cancer and in turn helping him overcome these obstacles. Why is this update important if I don't want you to do anything, the answer is because this our journey and we want the truth of this disease out there, it may help someone else or it may help awareness. The life of a cancer patient and the people who love them is much more complicated then meets the eye and takes a lot more planning, a party is not just a party, a symptom is not just a symptom, normal is different every day, but surviving is the goal for each person I know that is having this same struggle. I have a friend and her daughter that I love dearly and I know they are struggling with some of these same issues, and I know that they look at Michael and wonder how he looks so good and how he is doing so well, I want you know my friend you are not alone, what you are going through is normal and he goes through it as well. Anyone else who may read this, you are not alone! Life is hard, but not impossible, don't give up! You are either fighting or your dying! Love all of you, you each are a part of this journey and each of you make it possible!!!

If it is what it is then make it good!

Several times over the last few months I have wanted to blog, I just don't anymore because I get to much back lash for sharing my feelings and life experience. I was thinking about this today and don't understand why it was OK for me live some of the things I have in my life, but not OK for me to talk about them or to have the people who contributed or watch read them. I mean if I can survive it then you can own it and love me for being able to talk about it and move past it. The past is not the present or future it is simply the things that allow us become the present and the future, good or bad!

I love my mom dearly and anyone who knows me knows that, but I can't deny my childhood and I will leave it at that.

Nothing I particularly want to blog about early this am, I am just unable to sleep and tired of being afraid of my own blog, life is about choices and I will not be offended if anyone chooses  not to read my random spouts of self therapy.

Michael is doing OK, not horrible, not great, but OK. We are still waiting for some test to be done at the end of the month or beginning of next. The cancer seems to still be behaving however it seems there may be come serious effects going on from the treatment to get and keep him there and those effects are really taking a toll on him mentally and my myself as well. It is hard to see someone you love so much struggle, it is equally hard to not be able to help or offer a solution. There is more I could say about cancer, medications and health over all, but if you are someone we want to share that with and are on facebook then you know where to find that information, if you are not on facebook and fit in to that category you can send me an email at sthomas4803@gmail.com and I can email you those updates.

We both have a lot to celebrate in our lives as well and have gotten to a point that we are more able to focus on moving forward and putting our energy in on things and people who deserve that energy and are positive in our lives.

Since we have decided to live our life and go on as we know everything will be OK instead of focusing on what could go wrong or might happen or the people who wanted to pull us down, well our lives have greatly improved. The quality of life for my family as whole is much better, we have a car we can depend on, a house to rent that we feel good about and our landlord is wonderful and a saint compared to what we were dealing with.

We are rebuilding and living in the moment at the same time, we enjoy life a lot more in the last few months, we no longer feel judged and less then other people. We are no longer allowing people to make us feel like we are not deserving or smart or capable because we are and the best way to give those people the finger is to show the world that we can and will get through this intact despite efforts to keep us down. The best way to fight the ignorance and drama is to eliminate it and it only took us 31 years to figure that out.

In that process we have reestablished relationships that we lost and made new wonderful ones and that is joyous!

We have found our laughter again, the kind of joyful loving laughter, not sleep deprived just getting through laughter.

With 2 funerals and reflection this week Mike and I have both had our moments, but we are working though them. I am glad I got to spend some quality time with my Uncle Ray before he passed on Sunday, but I am regretting all the time I didn't get to spend with him. Losing him has made me relive the feelings and fears I had and have about losing Michael. They have also made me want to spend more time my grandpa, Ralph means the world to me and not sure that he knows just what he means to me. He has been my father, my grandpa, my male role model and was the only man in my life that ever made me feel wanted and loved besides my husband. I enjoyed greatly having breakfast with him and laughing before Uncle Ray's funeral that morning has replayed over and over in my head since. I am not good at being there when I know I should be because I don't know what to do. My aunt Lisa is so good at taking care of Ma and Pa and I am so thankful they have her, I want to be there also, but I just don't feel I fit in to that role and I want to, if you read this Aunt Lisa and Grandma I love you all and I would be honored if you would give me some direction is what I can do to help out.



I think we have settled in to our new lives well, the kids are doing great and seem so much happier and less stressed out! I love seeing them settle back in to life and not worrying so much. Michael and the kids are closer then they ever have been before or after cancer, they spend a lot of time together and even tonight, Meredith was feeling bad and she wanted daddy to take her to immediate care, it made me sad and glad at the same time. She has strep throat but she is fine, been sleeping since she got back, took her anti biotic's and Tylenol. I am sure she will be feeling better tomorrow.

There are things I could complain about tonight, but I chose to live for the things that make me happy! I have always taught the kids that life is about choices so it is time that I take my own advice. I have been doing that and I am much better for it! Also things seem to be just working better this way.

Cherish what you have no matter how hard things get!

A poem I wrote a while back

I want to fly high above, above the sadness, violence, sickness and conditional love. Truly free, no more trials to test my time.

 Joy to feel never having to say good bye, to be a vision of a song that is sang,

A tune of sweet untarnished melody flowing along the waves to drown out the yin and enhance our inner yang.

Notes of solace spread to my inner destiny, if this could be reality instead of a far fetched fantasy

I want to soar the open mind, the sky of true, experience the spirit of peace defined.

Seeing the loss of sadness in my loved one’s eyes, feel a touch deeper than skin a touch that never has to end.

 Forever blue doesn’t flatter my soul, I prefer a sunny yellow shade of me, one that can shine through to absorb the tears of sorrow and never ending pain I see.

 Imagine a day, just one that despair had no gain. Insane the thought of a joyous rain

I want to glide through the one day at a time to zen that is not only mine.

A calm to be experienced, felt, instead of talked about.

The storms not even a memory, able to trust and not doubt.

The emotional tornado never happened, never to see the whirling roles I now play;

My air is free from all unbalanced misery if just for one day.

 I close my eyes to feel, enjoy the warmth of senses not the darkness for where to hide.

If it was only possible to really get off this, long treacherous ride!