Sometimes you just have to enjoy the simple things in life.....

Eventually you just have to pick yourself back up off the floor.....

Its been six months since Dylan's diagnosis. The world seemed to stop for awhile. Or at least ours did. I saw others living their normal every day lives and wondered how they can just carry on when our world has just been turned upside down. Of course we do not even know most of them but to me it felt like the world had stopped.

Dylan has been made fully aware of his condition. I still know he does not completely understand it. Heck, neither do I most days. We have seen MANY doctors lately and are just trying to adjust to all the newness. He has more good days then bad which is obviously a great thing.

The kids are officially on Thanksgiving break today. Which leads us right into the holiday season. I woke up today and thought to myself. Its time to get back up. Its time to regain control of my life. Its time to get back up off the floor. Swallow our new reality and go forward.

The fact that we have three amazing boys did not change. The fact that we love them unconditionally did not change. The fact that we want them to have the best life possible did not change. So how can you make that happen from the floor?? YOU CAN'T.


So I am standing up today, I made pancakes and bacon for breakfast instead of toast and cereal. We are making cookies and getting into the holiday spirit. Now I will still have days where I ask WHY. I will still have days where my heart breaks for a boy who was dealt this hand. However I will still smile, love , and live with all I have. I will remind him and his brothers every day in some way that they are special. We will enjoy this holiday season.

Settling in..............or trying to.

This year has seemed by far the hardest year for all of to settle back into the "back to school routine" We have had many tired kids, grumpy parents, and chaos. I am not sure why. I think we were entirely unprepared for the return of school. We added a third child to the mix of things who only attends only two days. I think that throws of both the little two of what day they are suppose to be where. Dylan seems to be doing okay adjusting to junior high. I think he is being introduced to a lot of new struggles which is putting a damper on his new school year. I myself just do not seem to be settling in to have two days a week home alone. I am sure that sounds crazy. The house is almost an eerie quiet.
It has only been just under a month, so I am sure another month from now things will slowly start falling into place. The weather will keep the chill all day long that we are only feeling in the morning right now. Leaves will fall, days will be shorter, hopefully three certain boys will be settled in.

LIfe can change with the blink of an eye. .....

In this picture you see a boy. In this picture he is literally on top of the world. In this picture you see a care free child who appears not to have a care in the world. If you look closer that is still what you will see. However if you live under our roof you will see a much different picture. You will still see that young man who appears to be on the top of the world. Who appears to not have a care in the world. However if you lived in our house. If you lived our lives. If you lived HIS life you would get a much closer to glimpse of the personal struggles he is dealing with.

He leaving behind his child hood years and entering his teen years. These are suppose to be some of the toughest yet most fun days of his life. He is suppose to be hanging out with his friends. He is suppose to be loving life. Instead he is struggling with one of the biggest struggles he will encounter and will continue to encounter for the rest of his life. He has recently been diagnosed with muscular dystrophy. His world as he knows it or thought he knew it has changed forever.

It started with small struggles and grew bigger until the concern was so big it could not be ignored. The testing began. The endless testing, labs, doctors and finally diagnosis. His muscles are weak. They are trying to give up on him when he needs them the most. He wants to grow strong and be with his friends and not stand out. Yet he finds himself needing help with the little things. The things most of us take for granted. Opening a water bottle, squeezing something tightly, typing and writing. The things most of us do daily with out a second thought have now become the only things he thinks about. When will my hands fail me? Will I be in public? Will people notice? Will they laugh? Will they help me? will they stare? These concerns are all things he struggles with daily.

He has always been tiny and a bit weaker then those his age. I did my best to teach him that he will grow stronger with age and catch up. That it was what was on the inside that counts. That his day will come. Imagine my heart ache and tears when I myself learned that this was not true. HE WILL NOT CATCH UP. He will never be as strong as his friends. He will never be their size. As his friends grow stronger. He will grow weaker. Imagine my surprise when the doctor tried to tell me other ways for him to tie his shoes and button his pants eventually. I am still not sure I fully heard any of that appointment. It was like I was in a dream, watching from the outside. It was not a dream and we will not wake up okay. Things are different and I have tried to take the summer digesting this, accepting this, coping with this. Instead I have spent the Summer frustrated by this, sad by this, furious with this. Mad at the world, mad at myself. Feeling sorry for him and me.

I know this is NOT the way to move forward and as the summer days end and the school year begins I know its time to face our new reality. It was time to speak with the school and make more people aware of what is going on with him. It was time to try to make him aware of what is going on with him. I am not sure I have done a good job at this. I still find myself wallowing. I still find myself watching him sleep and praying to god to "fix this" I still find myself wondering how this happened to us and why us. Asking what I did wrong. He was just a kid, a happy kid who does not deserve to deal with this. A kid who has never wanted anything more then to just fit in. To just blend in. To be "normal"

Instead he has been dealt these cards. The cards of a body that is failing him. The cards of not knowing our future or what life will be like for him a year or ten years from now. Not knowing how fast his muscles will weaken. Only knowing there is NO cure and NO treatment at this time.

I am pretty sure he does not fully understand the seriousness of his condition. Why should I tell him? He knows enough for now in my opinion he knows this stinks and that his hands keep "freezing up" He knows its painful and embarrassing at times. Why does he need to know that maybe some day he will barely be able to use them at all. Maybe someday it will effect his legs, or worse off his heart. How do you ever tell your child something like this when the future is so unknown. How can I explain something to him that I myself do not understand and due to the fact that there is no cure clearly many others do not understand either.

It sure changes your perspective on life. It sure teaches you to cherish each day. To appreciate the small things. It teaches you to love your kids unconditionally and with everything you have. It teaches you that life can change with one phone call and one diagnosis. It teaches you that nothing is certain. It teaches you to appreciate life.

I am unsure where we are heading from here. I am unsure how we will be a year from now or what other functions may weaken for him. What I am sure about is that I will continue to love him with everything I have and support him. I will love him for the boy he is now and for the man we hope he will be some day. I will pray daily for a cure. I will teach him and remind him that he is special. I will laugh with him and cry with him. I will be his mom.

Summer is almost over.

The summer days have winded down. I feel myself filled with mixed emotions as the school year approaches. I always find the first day of school very overwhelming, This year I get to do it three times. All the boys have a different first day of school. So the sadness and anxiety will come in threes this year. YEP threes. My baby. My last child. My now 4 year old will go off to Pre K next week. He will go two FULL days a week this year. I have been doing the mom thing for so long I have no idea what I will do with 2 full days to myself. CRY? Maybe?? I just want the summer back. I want a redo. This summer has been bitter sweet it many ways.
Mason is starting second grade in two days. Dylan is starting 8th grade in three days and then Will is off to Pre K next week. Really? Is this it? Have my years of being a sahm come down to this? I will miss having someone home every day that depends on me and needs me. I will miss the five days a week where I am just home being a mom. I will miss the fun walks and talks. Most of all I will miss the pitter patter of little feet that filled my week days. It is a big change. Maybe more so for me then them . =(

Sometimes WHINE needs to be spelled with out an H

Tuesday?? Really? It's only Tuesday. Yet some how we have managed......

1. An emergency trip to the orthodontist.

2. A phone call to the triage nurse at the doctors office.

3. An over flowing bath tub.

4. Ten time outs.

5. Towels hung outside when it decided to pour.

6. Five arguments over the computer (refer to number 4)

7. Duct tape stuck in hair

8. Five fights over the remote. (again refer to number 4)


Now there is no partridge and I certainly do not see a pair tree here. However I could certainly end this with and a Frisbee in a pine tree...................


SO yes sometimes I hear the kids whine whine whine whine whine..................right up until bed time and then I drop the H and slowly it turns into Wine wine wine wine. JUDGE if you must..................I am not ashamed to admit it.

2013 I officially despise you...........................

This year has been filled with so much heartache sadness and stress. I so do not even know where to begin. One thing I know is that for the first time ever I will not be sad to see this year come to and end. We have struggled with loss, medical issues involving our child, and home improvement disasters that need to be redone and will cost a small fortune. Every couple of months life just knocks us back down again. I am unsure we have been standing straight up in a long time.

Lets face it.................we have all been there.

It always starts out as a semi normal car ride to run errands but their is just enough of a mixture of whining, crying, seat kicking, and fighting to tip you off that this trip to the grocery store will be one for the memory books. It begins with them begging to not have to sit in the cart, so you grab a basket clearly forgetting what happened last time you allowed this. Epic fail #1 first of all you need like 20 items one of those being a gallon of milk and second EPIC fail you just allowed the kids to roam free. It begins with can we get this asked over and over again over every item in the store even items they have no idea what they are. You try to speed up a little bit as they are almost an aisle ahead of you and by now your getting looks from the older ladies or the moms with the baby sleeping in her cart making a mental note that her kids will never be that loud in a store. You want to stare back at her disapproving face and let her know her time will come. Instead you give a polite smile while laughing on the inside.
Next you explain why we do not need to buy donuts or nutty bars and offer granola bars and yogurt instead. SUCCESS only the nutty bars ended up in the cart donuts back on the shelf after all nutty bars do have peanut butter right?
You move along feeling half accomplished when one of them try to be "helpful" and end up knocking over the display of paper towel that was on your list. You quickly try to restack it, give up and get out of aisle 4 fast before you hear the clean up in aisle 4 called over the loud speaker. At this point you are at the wine and beer aisle. You refrain from drinking it right then and there after the day you have had but make sure to add one.... okay two bottles to your cart. By the time you make it to the register the kids that were running ahead are now lingering behind complaining how tired they are and that they need a cart. That's okay though because the candy catches their eye in the check out line that is about 20 minutes long. This means for at least ten of those 20 minutes you are going to spend explaining to them why they can not have candy and telling them they will get cavities. Once you have finally paid there is that last hurdle to get by THE DREADED gumball machines. You look around for another escape root and then just try to distract them as you walk by. This never works and you end up .75 cents shorter in your wallet. By the time I get in the car an hour after beginning I have about 30 items and only about ten of them were off my list which means in the next few days I will end up back at the store again. This time lets hope daddy is home. =)

School is officially out for the year...............

Its def. bitter sweet. I did not realize I would shed as many tears on the last day as I did on the first. Mason is leaving behind one of the most caring, dedicated teachers I have ever met. Mason is moving on to second grade such a difference next year then this year. He moves upstairs, the bathrooms are not longer in the classrooms, they switch teachers for some of their classes. To us this may not sound big but to them its huge. When did second grade become middle school. What happened to staying all day with the same teacher and settling into a routine with them. They are seven years old. They are already growing up way too fast.

William is going to pre K 2 days a week in the fall. Pre K has become the new kindergarten. The expectations are no longer coloring and learning shapes and colors. They are learning letters, numbers, site words. They are expected to attend 2 full days a week. Taking care of most of their own needs while there. Again growing up too fast. As a parent that thinks the expectations are too high there is nothing I can do but buckle up for the ride. I can disagree with it but can not hold my child back from any of it or he will pay the price by being behind his peers.

Dylan is staying in the same school, with most of the same teachers and just moving up a grade. For him this is suppose to be an easy year when it comes to change not a crazy one like last year when he entered the junior high for his first year ever. Or as chaotic and scary as it will be next year when he enters the high school as a freshmen. However this could prove to be one of the more challenging year he is yet to endure. That is another blog post all together.

Where have the years gone? Where are the babies crying at night who needed me. Where are the little arms reaching up for me to hold them whenever I was trying to get something done. Where is the diaper that needed to be changed or the little nose that needing wiping or that baby that just wanted to be rocked???? You know all those tasks that we use to take for granted and even sometimes sigh about. Looking back I sure do miss that baby that just needed me at 3am.

I am hoping to enjoy the summer and try to think positive for thoughts for the rest of 2013 since the first part of it has certainly been a challenge.

The count down begins.........

I am always beyond excited when school lets out for the summer or when the official less then two week count down begins. This year I am filled with bitter sweet feelings. Excited to be schedule free, spend tons of time with the boys, and live into camp part time. Dreading leaving Mason's teacher. The school year just flew by. She is truly on of the most amazing teachers ever. She has helped him come so far this year. He really took to her and for Mason that says a lot. I know he will have a hard time moving on to the next grade. She was not just another teacher to him. She truly is a wonderful person.

The other bitter sweet moment is that William will be going to pre K in the fall. WOW. my baby will be gone 2 full days a week come fall... That is so sad...

Dylan will be ONE year away from highschool upon his return to school in the fall. where has the time gone?

IN search of ME

I am not sure when I became such a procrastinator? It is funny because it does not really fit in with my needing to have a plan and have everything ready way I normally am. The last few weeks I know what is upcoming and I know what needs to be done and I wait until the last minute when I ended up rushing and grumpy. Yard sale for instance. My idea. My plan. I picked the date. Yet here I am two days before and have not even pulled out a bin. Not only do I need to pull them out I need to transport them to my aunts house. YEP .... I have not done a thing. I think I liked the old me better. I def. plan on finding her soon and asking her to return. Although she may have annoyed others with her quirky ways and need for schedules she never missed a beat, always had a plan, and always had things in order. I pray for her safe return. =)

Daddy's boy

I may get mad, frustrated, annoyed, at my husband but whenever I look at him with our boys I fall in love with him all over again. He may not be perfect but he is an amazing daddy to our boys. I could not ask for a more loving, caring, and devoted father for my children. They are beyond blessed to have this man in their lives. I watch their little faces light up when he pulls in at night. I watch their sad little faces when he has to leave in the morning. Most of all I love to watch him watch them. He is not the most sensitive man by any means. He actually comes off as quiet and gruff. However these boys can melt his heart and bring out the soft side in him. Whether its a boo boo or a bad dream he is always there to pick them back up after they fall. With fathers day right around the corner I just wanted to take a moment and be thankful for the wonderful man in our lives.

Random Thoughts

This is what 2013 has taught me more than ever........Do not take anything or anyone for granted. What is yours to embrace today, perhaps may not be tomorrow. Laugh... laugh at the things that strike you funny and at the things that make you want to shake your head. BREATH... a few deep breaths can do wonders before any other action is taken. THINK. Do not make rash fast decisions. Those are the ones we usually look back and question. LOVE. love with your whole heart to those who deserve it and more so to those who do not. LIVE. Live every day as if it is your last day here on earth. Sadly it could be. SMILE it can make you feel better and perhaps that stranger at the grocery store who is having an off day. BE PATIENT. Take a minute and reflect, breath, think, love, smile and be patient.

But I get to come home to you .........................

THE POUT

Life is rough when you are four, and your mom tells you "no, we are not going to wal-mart today to buy angry birds for no reason at all"

Nerd up the nose........ really?

So as I was sitting folding laundry last night I hear a shriek of pure panic. I am met on my way into the living room by William, crying I have a nerd up my nose a real nerd up my nose. I am standing there prepared any minute for the "APRIL FOOLS" to be followed by this comment.
It never came. He did truly have a nerd stuffed up his nose... a pink one. I saw it for a brief moment and told him to blow. BAD BAD MOMMY choice blow hard means SNIFF to a 4 year old. Then the nerd was gone. No where to be scene. I contemplated a doctors visit. Then thought of sure we were headed to the ER. However after calming down for a few minutes, realizing he could breath easy. I realized it must of gotten sucked down into his throat and swallowed. He could no longer feel it in there and it was long gone. He has done this in the past with a small piece of plastic. He should of learned I know I know. =) However that one did warrant a doctor trip where they successfully removed it after 15 minutes of digging. This one however I was told was not as a big of a deal and would take care of itself. That boy. eeek.

However when asked what size it was he let me know that it was the smaller one because the larger one would not fit so he ate it........................ no comment.

HAPPY SPRING

Well April Fools day ended with a nerd up the nose of this cute little guy............. Of course who else would of done that.

Hard mommy moments

"I am not going to school today" Mason has casually said to me every day for the last week while eating his oatmeal.
"oh yeah?" I reply. Then it begins, the crying, whining, begging, pleading. Then Mason starts whining too. Then we start out battle of why he is going and all the reasons why he needs to which always ends in my having to break out the "It's the law Mase"
Putting your child on the bus while he is crying or if you can not succeed in the and have to drive them only to have the tears begin in the lobby and the clinging to your leg so tightly that you no longer have feeling in it. Its a very hard to thing to do. Leave your child crying and walk away. Mason has the best teacher ever and with out her I would not be able to get through what a hope is a phase.

words of wisdom found randomly.

"You never really get over a loss like that, you just get through it"


I wish I had heard these words years ago. For some reason they really mean something to me and really touch my heart. From our loss a few years ago to our most recent loss. These words now bring comfort to me. I guess I always was trying to figure out how to get over a hard loss and never seemed to be able to do that. However getting over it is not what is needed, getting through it and continuing to live is what you need do to. That is hard as well. Knowing that this will always sadden you when you think about the loss is okay. It's normal infact. Getting over it would be fake. Impossible to say the least. Instead continuing to live and try to make the best of things is better than trying to get over them. We do not want to "get over" a loss. We want to learn to cope with it, learn to function with it. Not get over it. Put one foot in front of the other, treasure the memories, try not to dwell in the sadness. Live but not forget. <3

March

To say this year has not been that great would be an understatment. We have had lots go wrong and every time I think I see the end of the tunnel the lights go out again.

I know its March in 2 days but man do I wish it was June in 2 days. I hate to wish time to go back quickly but I am more than ready for Summer. School to be out. Us to be moved in and out of the camper as we wish. Staying half the Summer at camp. Just the relaxation of being scheduless and care free for few months.

The kids had a snow day today which normally I love but at this point it only backs up what day they will get out of school for the year with each cancellation. When March is this near seeing signs of Spring would be great, however in MAINE that is not an option. However March does bring Spring to us. Well atleast according to the calender and I can only hope our Spring is much better then our winter has been.

I have not checked in often on here and have not updated because I felt like I had nothing positive to add and did not want to be a downer. However I am going to try to update weekly and find the postiive. There is positive in every day even if the negative seems to be over shadowing it at this time. So Friday will be March first and I am going to make it my personal goal to update weekly.

Heavy hearts

I told myself that we were going to have a great 2013 and everyone always likes to throw out there that "life is what we make of it" Well this is not always a true statement some curve balls life throws at us are so beyond our control that it send us spriraling down hill fast with nothing to hold on to. We had a curve ball thrown at us this past week. Our life time friend and my husbands best friend forever died. Very unexpectingly as you can imagine. Our world stopped last week. Time stood still. Nothing made sense. It took a day or so for it to even sink in that this was not some sick cruel joke that this was true. Our friend was gone. His family was suffering, our hearts were broken and there was nothing I could do to make it better right now. Nothing seemed right anymore. The world seemed like such a harsh unfair place to be. Someone we love dearly can be with us one day and gone the next with no warning and no goodbye. We went through the motions of living over the last week. We were there to support his family. Their hearts also very heavy and their grief sickened faces were heart wrenching. After the funeral I lay in bed thinking so this is it? Traditionally speaking we have said our goodbyes? NOW what?
I am now thinking about all our times together and all our little get togethers that were full of fun and teasing. The pranks, the jokes, the love. It's over?? Our little get togethers would never be the same. Their will always be sadness in the air. Always be a void that can never be filled. Their will always be that empty chair. Their will always be an empty place in our hearts.
So where to we go from I hear I ask myself? For someone that always likes to fix things and have all the answers right now I am at a loss for words. I have no idea where to go from here and I certainly know that this can not be "fixed"
As I watched the 4 year old son he left behind run around yesterday. Not fully understanding the situation. My heart ached that this little boy will never get to have his father in life again. I can only hope and pray that he will always be reminded of what a wondeful, loving, caring, and amazing father he had. I know a part of him will live in him forever. For a part of him will live in us all.

New Year............New Beginings?? I hope so...

I have seen tons of things today about people with goals for the new year. I myself have made lots of "resolutions" in the past only to fail and feel like a bigger failure then when I started the year.

This year I am going at it with a different approach. My thoughts for 2013. To live a happier life. To be happy one the inside and out. This can mean so many different things to me. However I am not even going there with myself. I am simply saying. I personally want to be a happier, healthier person. Worry less, laugh more, Worry less, be more paitent, Worry less, feel better about myself. worry less. Yeah we both get it. =)

I guess in a lot of ways a new year can be a new begining. A new way of life if that is what you choose. I can look back at 2012 with MIXED emotions. I learned some things about myself and others around me this year. 2012 brought me much laughter, and unfortunately brought me many tears as the realization of the world hit me. My safe bubble popped years ago and since then every year brings me new reminders that the world can be a as heart wrenching as it can wonderful. It just depends on the day and the situations.