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?