Mirror Mysteries

Living With Mosaic Downs Syndrome [ M.D.S. ] & Heart.

Music: Memory “ Susan Boyle” Mood: ”  Proud”

Now, I do have e-mail work to do today. I need to talk about a few things, and cover a story I fully love; about having dreams realized, and having complete heart. This is a story about a woman from scotland named Susan boyle, who has done more than become now a singer we should all know about, but who we need to know about. The Full Video is below, and I can’t listen nor watch anything else.  Look at that confidence; I extend my heart to this woman In ending statements In the Show Britian Got Talent. Pierce “when the world was going through a pretty tough time, and looking for a bit of hope and inspiration along came Susan Boyle” Then the nail bitting Amanda with the woman to woman respresentation and comforting words comparing. Then lest we not forget about simon; that does represent an American Mainstream Television show comes in and apologises for his own comments!!

Now, it is becuase of certain reasons why I dont watch television consistantly, nor do I agree with a quarter of any commercialism of it; reality, or regular shows. I was personally looking for something bigger than her perfect Voice. Better than her now iconic Face [she is now a bit of an Icon], it is of something even greater that she possess… it is her HEART!!

And I relate in complete parallel to her; and when you watch her in this performance you can visually see and feel the confidence in her face and in that god-given talent in her voice. Then when you pin-point and fast-forward before that golden pitch close your eyes feel the cresendo, inching to the bridge in this classic piece of music and listen to her belt out in  absolute perfection in these moments to the arch of the song, in the 2 simple words “touch me” a song written by Trever Nunn from a Andrew Lloyd Webers timless classic Broadway Dance, and Opera: “Cats” a that was based after T.S Eliot’s story called ”the old Possums Book for Practical Cats” in initially what is sized to be for me Sarah Brightman’s consistant and classic preformance of her own career to now Susan Boyles choice to singing a very memorable version of ”Memory”.  She sung this with real and genuine heart and did it the only way Sarah Brightman can do for me!! Open your eyes and look upon the face of what a beautiful voice should look like in  the eyes of a optimitic dream in Miss Boyle.  

Now, the only one thing and personality or advertisment that kept me interested in American Idol, is infact simon. It is how critical he is, and at times how bitter he can infact be is finally humbled by a person who knows when they have talent, presence, and a genuine dream in her heart! Here’s what I defend in this entire story “The Integrity of Dreaming” and what the vanity, and fallow-through of that should, and needs to look like introverted, and extrovertedly.  Inbetween 0:09 - 0:11 in his face and that realization of being pleasently wrong, and then starting at 3:05 with that build-up to that pitch that leveled a not only studio but becuase of simon an american audience aswell. That representation is why I do what I do with the IMDSA right there. And she plants herself in a not only a chance for her dream to be realized, but for me to continue to do and help. Susan Boyle has been heard, and has by her talent shown; it doesn’t matter who you are, if you know you can do something…. YOU CAN this is something know one can take from you!! And susan Boyle is a great example of that definition. And I thank Susan Boyle for both defyng, and defining the odds from the bottum of my heart.  

Living With Mosaic Downs Syndrome [ M.D.S. ] & children

Music: Within Temptation “ Forgiven ” Mood: ”  Content, and Complacent”

Things dont always go as we planned. When, you are a parent you want to plan as much as you can. I believe that what you reflect directly, and indirectly to children is something not everyone can do. I’m not entirely graceful, but over the years I’m been confronted with harsh truths, and realities. about people, and life in general I have been completely cornered by honesty, by so many people family, and old friends, and the realities that comes with all of them.

I did a video on how important supporting children is, even when it’s something small the acknowledgment, for them, the emotional healthy is just as important as the physical health. No matter the person may be, or child!!  Remember this kids, ALL OF THEM are our future. And [personally] Every father, and mother has every single god given right to defend how they raise, care, and love their children!!! I was a child, you were a child; we were all children at one time. And it’s up to us, the parents, and those who really care and love children. To stand up for them. And those goes for all the generation, and the generations to come! If there’s something I would love to leave behind before I die…

“know one deserves to be left out everyone deserves to have a choice on what is right;  no matter the race/ creed / age / belief / or gender”

 

I was told, I have a huge heart but I have a full on belief that know one is my enemy! [and that is extreme positive thinking] because know one has a disability, only an ability to see the world in a different way. And we have to teach this to our children, Now I’m not perfect, not graceful, I have definitely made MISTAKES. Yes, I have. And I acknowledge, and put myself accountable from them in my own way. Everyone does this!I just wish more people, would support, and care more. And that is why I am helping the IMDSA. to raise awareness, and education.

Living With Mosaic Downs Syndrome [ M.D.S. ] & Support

Music: Within Tempation  “ Memories ” Mood: ”  Calm”

I know I’m not going to fully get this blog done right now, have a phone meeting soon, but what I want to address before time runs out to base what I’m blogging about is thew subject of “support”.  I’ve talked about trust, communication, love, respect, and now support comes to mind. 

–I’m back– 

Within my time helping, advocating, and extending my hands for all those who needed it, and knew I could help. Something has been resinating in my head. And this is how people support. Putting my situations out, is always easy to do …  talking about oneself is something people do to support themselves. As a parent you have to step out of yourself, in a relationship know matter what kind you do this on a regular basis. I’m not a angel, I have my faults I’ll fully admit to this. One of the things I do infact pride myself on, is I’ve always known how to help. This is why I know I’m a great father, and good advocate to who I directly love. I’ve learned through-out the years. advocating for yourself, and others is a real balance that takes years to posses. I fully believe in balance, I pride my own father on this belief, and fully intend to not try,but do this. balance all aspects of my life. In this, balance it is how [this is how it is for me, but might be different for others] to be both selfless, and selfish.  And everyone needs a great balance of both. I keep myself in check, yet I have someone who’s very much next to me that does it even better, becuase as much as I do myself the favor of stepping outside of myself, she has a form of honesty know one I’ve ever known posses. I love her honesty!! Every relationship should be this way in full on honesty without the lack of love fallowed by thought and emotions of the being acknowledge.

As a baby, to a toddler, child into teenager teenager to a man — the biggest thing I’ve always struggled with is finding peace on who I am, and supporting myself in what I believe in. I’ve stated I believe in love, trust, respect, accountability and pride. And inside support, I believe in without bounds protection so that the accountability is set in-place for a future that is in-front of you, and me. One foot in-front of the other, I’m not entirely graceful on this, I’m a man. What do you expect? This; me supporting others in the IMDSA, and the family I know that is mine [I choose this family], along with my biological family that I love and respect This isn’t about me fully, No not for a second, but to anyone’s life there always a point to put a foot down, and say something and know you’re being listened to, no matter. And this just goes back to why I entitled my blog “ stand with pride” along side “know one wondering” to continue with help reflecting not just me, but all.

Support I believe has several levels, but to yourself. it should be definitive in what shapes you. And it does take time. In this, mine is to be selfish., and selfless. And connecting the two by humbling myself and stepping outside of my own cave to see others better.

This is to have understanding in advocating for my own emotions so that I can advocate better for all who would like the help. And saying simply “I’m just want to help” humbling myself all at the same time. I feel solid in this support for all, and myself. I’ve always appreciated help [always], now I can help others who I know need it more. This is as honest, as I can be in my level of commitment to all.  

Living With Mosaic Downs Syndrome [ M.D.S. ] & Trust

Music: T.I.  “ Live Your Life ” Mood: ” Calm ”

I didn’t have to stop myself, or completely censor I guess. Take a step back, and realize again my painting that I’m apart of. My people, The IMDSA, the ones I completely love, and trust… TRUST ?!?

Trust is so very big! I had me and awesome day thus far, and the morning was even better. Yesterday was a very much a full day with ideas, people I work with, and networking, resourcing, connecting and making things solid. For everyone I guess I have three levels only for my personal reasons the ones who I love, and trust equally who I work on trusting, then who I just dont know. And I dont know if I have a wall when ever something sparks to get me knowing, working with anyone I have a slight or a tangible reason; I question it more so than ever. I dont like to hurt, I deal with what my arms, hands, and heart opens to. And I love it when it does happen!

To be honest with myself, and to all. I have honestly say there’s are only a real few I fully on a equal scale love, and trust.  These people are the ones I can fully rely on. And has a solid equal amount on both myself, and them of genuine respect. I loathe liars, Manipulative people, and ulterior motives. Not to many people can play head-games with me. Because I always find out the truth! Always, and I do it for myself, and the ones who would like to be apart of my life, and love, care, and be with me for who I am. And I’m all about accountability, maturity, responsibility, growth, and self awareness all at the same time. In one big bag of my belief, this helps me get solid.

And the point of this, is simple really. When ever any one has a second of opposition of trust; information gets hazy, and perpetual even for that second if you dont catch it, you’ll never know the real truth!  Truth can sting, but should never be used as a weapon, only a emotional tool. I’ve been solid for awhile, yet the last month I’ve been solid everyone deserves to have this feeling. The one thing I wish, I could posses is being able to read minds for the people of my choice. I’m trying to to be fully defensive, and tend to have a hand in a very big way at times on being defensive.  For the ones I love/inlove with/care/respect, and will protect until the last of me. I suppose this is to solidify the real part of me.  that will back down to a challenge, nor a channeling a few things so they dont become a over-whelming bottle about to bust or shatter.

Plus, I dont like things out in the air without talking about it at all. I had to write.

I love, and respect all those who have stood by me, through thick, and thin. And I’ll always defend these people. This is just who I am, I can’t help that! And I wont. And this is how I sleep very well, at night.

 

Thank you for reading.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandt’s.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Living With Mosaic Downs Syndrome [ M.D.S. ] & Depression -Facing myself -

Music: Psyclon 9 “Rather not say title to this track” Mood: ” Undecided ”

Yes, there are definite times for this to happen… I’m not saying this is a day for it to happen to me. I’ve gotten to the point where I’ve controlled this part of my life. Because at one point it over-ruled every part/aspect/mood about me.  I’ve learned to be okay with the fact that I, and others gets sad, mad, frustrated, agitated, and well every one does in fact get depressed. 

And today, I’m not really facing it, I’m talking about it. Because it should be important to all, who have a child with MDS, or have MDS, or something that would be considered a “disability”.   I feel the biggest disability I’ve ever had was my depression! I come out with a few things, 2 lists of two very different extremes that can cater to being negative person, and a positive person: 

I was titled a disabled baby because of my Mosaicism 

[true fact here] I have had 6 people die in my life, and I am 29 -2 family members, and the rest friends-

I’ve gone through 2 divorces one of them my own.

one very long friendship left me for money, and the other for god.  

And I have survived my own suicide

Okay, 5 I wont let this entry get out of hand become heavy and do the “ooh woe is me, I paint my nails, and hate everything that crawls inside a emotional cliche I must be Gothic pity party ” instead I list the opposite in my life. the better part.

1. I have a son
   

2. I’m still alive, and very healthy

3. I am apart of the IMDSA and all that it entitles

4. I’ve forgiven everyone 

5. I fight for my right, for love/peace self acceptance, and to breathe

And I am still working on myself, this is not  to say I am fully out above anyone, or below. I make fun of certain emotions, never people or myself really. The attachments that are their are very real that can come with sadness, and depression. And I would rather go through it with all the emotions attached, and write it out than have it resonate in my head. I admit I have triggers, and underlines emotions that do in-fact get to me. I believe depravity is very real and a dangerous emotion. I have my down days as I know you do as-well. It’s what you do that defines who you really are in to shield you from definitive emotions that could be very detrimental to your spirit. And the best you can do is “try” because you just never know, and I not a good or bad example of that. Again, I’m not above or below — Because I am only human.

*** I look at the first list quickly and feel serrated, cold, very numb, and lethargic

*** I look at the second list quickly and feel warm, clean, accepted and full of energy

Here’s my personal cycle, and I’m okay with it because I need that balance in-between both for me to be held accountable for it all. And I will not let one side consume over the other, I really do need both sides for me to feel everything and still accept myself for who I am!

Living With Mosaic Downs Syndrome [ M.D.S. ] Seeing How The Past Shaped My Future

Music: Peter Murphy “Strange Kind Of Love” Mood: ” content”

People are funny, they make me think, laugh, smile, frustrated, and all in all help make me who I am! And yes, I’m a little strange — I’m okay with it! Putting it in metaphor when you open your box of past memories how does the future look in shades, and shapes to you ?? I can’t fully tell you about mine, I know that I’m not done I have a lot to offer, and have gone through so much drama it’s sick!!!! If there’s anyone that would think, I was sheltered, or coddled/taken care of, or protected. I always laugh to myself, considering how I pushed people in general by being me. And how I walked into the space of what could seem like a very bad situation to others. I have a time when people worried a lot, didn’t know what I was doing, or just let me do what I was doing at the time. And I lived it to it’s fullest at that point no matter what it was. I remember hanging out, with a very good-friend of mine in Salem Oregon, a very Gothic guy, and piercings everywhere yet he was one of the best-friends at the time for me, and was also a very big kind of “teddy bear” to the girls.  And me, with my [at the time] blond hair, looking a little yuppieish, and good-clothing on. I met one of his friends, that worked a double shift and literally hated me on not only the way I looked, but what the statement it stood for.

I remember what she told me: “I bet you mommy, and daddy pays for everything, I worked none-stop to pay my bills, rent and I take care of my family” I’ll never forget that as long as I live!! And I really took it to heart. I never knew her name she didn’t care for mine, and I was an example for her to get the point: “people can work so hard and still not have enough to live, and struggle everyday to keep them selves happy” across. It got me to really think, and resonated in my head for years. I didn’t depress me, or made me feel bad for her. I honestly I was very proud to have that moment!!  She went off on how I looked, and what it meant to her, by me looking that way looking like all I got was hand downs, that looked like were bought specifically for me. In high-school, I got my self into a situation where someone made fun of my friends  and got into a fight over what they said to my friend. It was a very stupid thing to saying as it usually is, but at the time is was so important to me to stand up for a friend that meant the world to me and later on I learned a teacher statement “I wish I had a friend like Casey in high-school”. I got myself into into a very literal old all-time favorite of mine Peter Murphy that gets me to realize things just by his voice.  I send myself back in time often, and see what I’ve been through, and others in my family, and old friends now with new friends.

Now, how I was raised is never by any means a bad thing, I love it! in all it’s forms. One of the biggest things I want teach my son, is plainly “stereo types are just twisted words that make judgments”  And not by any means, am I an angel, but I have gone through a lot. So much drama — you can’t live a natural life without it actually. I listen to this song “Strange Kind of Love” And I think of Ronins’ mother. And you know, her and I have gone through so much together within the short time we’ve known each-other. And that track just signifies all of it!!  It fits so very well. Yes, I have have me a very hard year for this last year a lot of confusion, frustration, agitation I wondered how certain people protected me in very interesting ways. I wont name names, for the grief part but, I love them all. I also know his mother had a hard time as-well. I wasn’t alone, neither was my family! And that is called: “maturing”. And I just went through it differently and I always knew my son was with me, and his mother and I. Will always have a future together. I’m not confused, very clear actually all the pane of glass looks like a scratched, weathered, and a little faded in some corners, but it’s still there I can still see through it [I love my metaphors]. Not everyone can fully understand them though.

My past shaped a person, that can be frustrated, sad, mad, with strong beliefs, and instincts of a fighter to live a struggle for love & peace.  In a solid window that can only be broken by me alone.

And I’ve realized not every one is different, just the decisions. And what they do after-wards — that is what makes you solid as a person above all!! And From all the titles, stereotypes, cliche’s, commercialized way of living… know one helps you more than yourself in the end. Just dont forget those who helped you, and ronins’ mother and I have had a connection that know one will ever understand, and quite frankly I’m so very happy about that.  I was made to change, and challenge people. But, I an make them fully understand, at least you are listening, and that’s what counts. I just hope everyone is listening… yet, I wont loose sleep is all. I might not agree, people might not agree — that is life. I’ve known that for a long time, but when I went outside earlier with Peter Murphy in my ears, Verona Starbucks Coffee in my taste-buds, and my camel cigarettes parching my throat a little; that time right there, has been the best part of my day and it put me in anticipation for the rest of my day and her. And right now, in this moment my life is awesome. I’ve learned so much, I just want people to be aware that even a man as a baby was very much titled, and stereotype since birth has stepped out of his cave. And life is beautiful out of it, it took me a long time to step out of my cave, and I am very proud of myself so it! I fight for it, and I can breathe so much easier outside. 

I’ll bruise, bleed, cry, get frustrated, and mad at times…. I will not go back into that cave again. It’s to depressing, sad, and very dreary in side there.  Like, I said, I was made to challenge.