Mom who wants to help her son, Ryan, go to College


I am a Mom. I am a Mom that has three great, no….make that awesome kids! I am a Mom that always intended to help her children achieve their dreams as much as possible. I am just like many other Moms. Actually, I am not just like many other Moms. Let me tell you why….

Currently I am 45 years old and I hope to see 50, but there is not a guarantee. Reason being, almost two years ago, I was diagnosed with Corticobasal Ganglionic Degeneration. It is an uncommon degenerative neurological disorder that is not curable and most people live only 5-10 years from onset of symptoms. CBGD is not a fun disease and symptoms include numerous horrible things such as alien limb syndrome, dystonia, walking and balance difficulties, muscle pain, speech issues……and more.

Since I was 17, working has been my middle name. At times, I even worked 1 ½ jobs to make ends meet. College was important to me and I made sure to put myself through school. While I went to College full-time, I also worked full-time to help pay my tuition. I worked long hours and always gave 150%, until April of 2014. My doctors wanted me to stop working prior to then, but I wanted to work as long as possible especially since I knew my son, Ryan Price, was going to start College in August, 2015. At the time, sacrificing myself was worth it if it meant financially helping my family as long as possible. Ultimately, I worked myself way too hard and all I managed to do was speed up my illness and end up in the ER with my doctors, husband and kids telling me that I was decreasing my time with my family by pushing my body beyond breaking. I stopped working which was so hard to do and I still have trouble to this day with coming to terms of not being able to have a job and feel like I am contributing.

Enough about me. This fundraiser is for my son, Ryan, not myself. The reason I have told you about my situation is so you can better understand when I admit I have failed. Failed as a Mother. I know that many would tell me that is not the case since my kids are truly great, very compassionate, caring, smart and talented, especially Ryan. The reason I feel that I have failed, I cannot financially help him achieve his life’s ambition to attend College this Fall. Perhaps, my last big achievement. I did not want him to struggle and stress to find ways on how to pay for College or if he can even afford to go. I failed to make this simple and fun for him. I failed by making him not only wonder if he will ever go to the College of his dreams or at all, but also the unnerving question of how long I will be around for him. I have failed to be his safety net.

Ryan Price is graduating High School in June, 2015. There are so many great qualities that I could recite, like most Moms, but he really is a good kid. Don’t get me wrong, he is not perfect and I have the typical battles regarding cleaning his room and taking out the trash. Regardless, Ryan is a loving son, awesome big brother, loyal friend, smart, funny with his dry sense of humor and quick wit, compassionate with animals (especially dogs and has even volunteered with animal groups) and very talented when it comes to computers. In fact, he wants to attend College to become a computer programmer and he has already proven himself highly skilled and capable by taking courses over the past couple of years while doing very well academically with programming classes. He lives for computers. Programming is his passion and his ambition. It is his goal. His, as I say, “computer, math and science brain” just clicks with it all and coding completely makes sense to him while I go cross-eyed as he attempts to explain it to me even in the simplest of terms. Plus, let’s face it, his handwriting is atrocious, so he needs to work in computers.

Financially, our life has completely turned upside down. Don’t get me wrong, we are making ends meet, but no extras. We have cut every possible corner, save as we can and creatively as trimmed down our bills while supporting a family of 5. It is still nowhere near enough to send him to College. Since our income has been drastically cut due to my inability to work and continual medical expenses, I felt the need to start thinking outside the box in order to right my wrong. It is now time to swallow my pride and humbly admit we need help (and you have no idea how hard it is for me to ever ask for help, seriously) with finding ways to raise the funds Ryan needs in order to be able to fulfill his dreams of attending the College he so desperately wants to attend and has already been accepted to start this Fall. Above all, I want him to be able to enjoy it. I want it to be his safe haven where he can focus on the beginning of the rest of his life while having fun. My illness will eventually punish him enough by losing me, but he should not be punished in the meantime by not being able to go to the College that he has worked so hard the past few years to attend.

He has been trying to raise money already. Ryan has applied for many scholarships, but none have been granted. Because of our predicament, he is having trouble getting student loans and has been denied which has done nothing but increase the desperation. Unfortunately, Pell Grants are not an option for him and he was turned down. Options are dwindling quickly.

Ryan’s dream has now become my dream, for him to attend College and hopefully, I will be able to watch him graduate. Even if I am not able to see him graduate, it would make me so proud and rest peacefully to know he was well on the road to success and beginning the career he has fought for and more than deserves.

ALL funds will be strictly used for his College tuition, campus living expenses, books and school supplies. Every penny will be for College. The initial $35,000 is what he still needs for his first year in order to attend. Ultimately, he needs approximately $120,000 to complete his degree. Any amount will be very much appreciated and help a deserving young man smile a little bigger.

If you are willing to donate, please visit: http://www.youcaring.com/ryan-price-359993

Thank you.

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My Take On DIY Projects


I am the first to admit, I was not a DIYselfer. Heck, I didn’t even know what the letters stood for, I swear! But, since I am no longer working due to my CBGD illness and I have always considered myself a ‘independent workaholic,’ I refocused my energies on how to save money for me and my family. I figured it was a twofer, saving money and also keeping me moving at my own pace while using my brain cells for more than just remembering my meds. You know what they say, use it or lose it.

First Step~ I googled the heck out of the subject “what is cheaper to make than buy.’ It got to the point I think Google even irritatedly groaned out of boredom whenever I logged into my laptop. What I found though was an untapped source of mass knowledge (ok, obviously many other people knew about this and I admit, I felt a little more than fashionably late to the party) regarding DIY, how to save money, etc. Of course, all of it was true because it wouldn’t be on the internet if it wasn’t.

Second Step~ Accepting the fact that all of the information was not true. I could elaborate, but I assume it is not necessary.

Third Step~ Reigning in the excitement. You know what I mean, find something new and you get the adrenaline pumping and suddenly you think there is nothing you cannot do or handle! You are INVINCIBLE! So, after you compose your list of all the new and wondrous ways regarding how you are going to save tons of money, become so self sufficient that you never have to enter a grocery store ever again…like, ever, while providing healthier alternatives for your life and family, reality suddenly snaps you back in place and you ask yourself, “Self, as cool as it would be, does my family really need a solar powered hot dog cooker?” While I admit, my family still cooks our wienies the old fashioned way of my ancestors, in the microwave, some of the ideas were legitimately good and full of common sense. Hence the list was cut down….dramatically. You have no idea. Goodbye homemade submarine, it would have been fun (could you imagine the money saved on family vacations?!).

Fourth Step~ Taking the revised list, seeing what you already have around the house for the needed ingredients, then making your shopping list. This step should be self explanatory, well to most people. What I found out though, I have a lot of crap shoved in many places around the house. It was almost like Christmas Morning and Nesting While Pregnant had a love child. Assume there will be nausea and vomiting involved. Not a pretty site. So, my glorious anticipation regarding immediately starting DIY projects was viciously attacked by the Clean out the Crap monster. Well, that’s no fun at all. Once I finished acting like a 2 year-old in a toy store after not getting the latest Barney toy (did Barney finally die? I admit I am aging myself, have not dealt with a 2 year-old in a while. Oh well, no important)), I begrudgingly got started.

Fifth Step~ Now buying what you need and listening to your spouse constantly ask while looking at receipts, “How is this supposed to save us money?” Best we just skip this step, if you don’t mind.

Sixth Step~ Euphoria! Sound the harps! Cue the Angels! AWWWHHHHHH…… The moment we have been waiting for! The time that all of our training, blood, sweat and tears has earned and will now pay off! The moment you realize that some people on the internet are totally full of *#$%.

Seventh Step~ Weeding out the good, the bad and the ugly. Yes, some DIY projects will fail so miserably to the point we will not even discuss those. Either they just do not work, the ingredients they used must have been bought in the 1950’s which is how they saved money (If only grandma would have left me her flour), or I apparently no longer remember physics and cannot decipher the instructions to begin with. Stay calm though, there is some good that will come out of it. There are DIY ideas that actually work! Shocking, I know. I was more relieved, a basic, “OH THANK GOD,” moment once I found one.

Eighth Step~ Pace yourself. You do not need to do all the projects in one day. I like to start one or two a week. Much easier to point fingers are the loser that way rather than blame a poor innocent DIY who is still trying and does not deserve improper judgment…….at least not yet. MUUUAAWWWHAHAHA……

Ninth Step~ I really don’t have much to put here, I just wanted 10 steps. Call me selfish.

Tenth Step~ You now know what works, what doesn’t, which ones to keep and which ones to bury in the backyard (I swear no DIY leftovers where harmed in the making of this post and nothing is actually buried in my backyard. OK, you got me, quit pressuring me! I will crack, I think there are a couple frogs and possibly a guinea pig. Whew. Unless their tiny little bones would have totally disintegrated and turned to dust by now. In that case, nothing is buried in our backyard). Bottom line, if it is not family approved and save us money (or at least break even), it is voted off the Island (There is a whole ceremony and everything. It’s awesome).

I am happy to report, there are quite a few DIY staples in our house now:

Laundry Detergent

Toothpaste

Granola bars

Bread

Peanut Butter (any kind of nut butter)

Chili

Mac and Cheese

Vanilla

Greenhouse (misc herbs, fruits and veggies)

Trail mix

Some cleaners

Pizza

Some other food items, but you get the idea

Soon-to-be or at least try:

Bagels

Gluten/dairy free breads

English muffins

Mayonnaise

Hummus

Salad dressings

Sun screen

I do have a list of other projects, but as I said, it is all about pacing myself. What I am surprised about is how much fun I am having and that it does help not only our pocketbook, but also to get me up and moving. Bottom line, I recommend DIY projects, honest. I swear on my bread machine! I would say on my children’s lives, but let’s face it, they’ve never made me homemade bread. Nuff said.

There once was a person………


In memory of my husband Jim who passed from this disease 12/12/13. Miss him every day!

In loving memory of my Mother.

My Mom had this horrific disease. She passed in January of this year.

I lost my dad to this horrific disease.

My husband passed away from this illness after a 6 year battle with the disease.

My mom was diagnosed with CBGD in September 2013. This is a horrific disease and needs more awareness, research and knowledge.

My 71 year old mom is suffering with CBD. It has taken away so much from the mom I once knew. I miss the old her terribly. Very few people have ever heard of this rare disease, and I would love more public awareness.

My significant other was diagnosed with CBD in 2012 after several years of misdiagnosis. We’ve been together 6-1/2 years and I’ve watched him deteriorate from a strong athletic man to someone who requires assistance in all physical aspects.

Determined to raise awareness and research funding. My father has CBD.

We believe that CBGD is a debilitating illness for both patients and family. Guy was diagnosed in 2012.

My mom has CBGD and we need a treatment/cure!

**The above are all real excerpts from the fundraiser page and I know of many more losses and suffering from support pages. This is real. This is the path that my family and I are heading down. Please help find a way to change my future and so the people who wrote those heartfelt lines can possibly get their suffering loved one cured or the ones who have already lost someone, a sense of comfort knowing others will not have to endure their hardship.

Update:
65 shirts sold and $1035 (combining both links) raised so far! Still 9 days to go, so PRETTY PLEASE either purchase a shirt, perhaps make an extra donation or just donate only. If all else, please just share this post.

I really am hoping to sell at least 100 shirts and also raise $2000 minimum! Even just a few dollars on the donation only page would immensely help increase awareness and get us one step closer to finding a cure for CBGD. Remember, funds raised will go directly to CurePSP.

How about a simple challenge…….I know you do not know me. Probably do not know anyone with CBGD, do you? Have you ever even heard of it before this post? If you answered ‘No’ to any of these questions, then donate at least $5.00. That’s it, just $5.00. The price of one foofy coffee. Cheaper than fast food. Less than 2 bags of chips. But can you just picture everyone giving $5.00 and what that could accomplish!? Don’t even donate for me. Donate so you can hopefully go through the rest of your life and be able to happily say that you do not know anyone with CBGD.

Go to https://www.booster.com/cbgdawareness You can access the donation only page from the link I posted. Once you go onto the site, click on the “To make a donation only” link on the right hand side of the page. The fundraiser ends September 24th.

There once was a person…….who was cured of CBGD and lived happily ever after. This is my fairytale, help me make it come true.

Thanks!!

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P.S. For those that want the sarcastic humor back, don’t worry it will be. Sometimes, a touch of serious in your face reality is necessary.