Dear Deanna: Loving Me Still

Me & Deanna, Camp Greentop, 2000

My Dearest Dee,

As always thank you for your warm thoughts & needed prayers.  I'm doing alright.  Some days are better than others, but even through this, I can still see how truly blessed I am.

Our Christmas was emotional but very blessed. More emotional on my part than Jake's, but he has his own process too. We were lucky to have these amazing friends to spend Christmas Eve with which made the holiday easier in so many ways.

We also spent Christmas with Mom & our cousin Bobby & it was so nice to get to spend such a great evening with them.  We may not have much family to spend time with, but we are grateful for that time we spend with them, blood or not.

And honestly, that is how a holiday should be spent, surrounded with friends & family that love us.

I can feel movement in my grief, even since we spoke.  In so many ways, I am so very grateful for that.  I cannot deny that there is a freedom in speaking things outloud & something happens when a truth, especially one that needs to be said, is spoken.

Trust me, I am grateful for every word spoken, tear shed, & prayer uttered, bc I know that deep down it is where I am & it leads to healing. I'm so very thankful for friends like you, who I can be open & honest with, who let me say what I need to say when I need to say it. The ones who let me be where I am, & love me regardless of circomstance. It is what a true friend is & that is what matters most.



Friends come and friends go,
but a true friend sticks by you like family.
~ Proverbs 18:24 (The Message)

I wish you were here, Dee. There is still so much I want to say. Yet, there are still somethings I can't find the words...  I just keep thinking how incredably blessed I am, & how much my head is a mess.

I miss you. I miss your hugs.  And I miss how you always knew what to say or what I needed.  I know you can't fix this. No one can. And that's okay. You just always made me feel better.  Thank you so much for being there for me.  Reaching back when I reach out. Loving me without condition.  Loving me... still.

Love & Light Always,

What's A Girl to Do?

So, I'm a little behind. On everything.

My blog. My life.

I spent the week feeling not so well do to med changes. My computer been acting crazy - sluggish, timing out, not loading right - just about everything that drives me crazy then some.

This week I'm going to try & catch up the best that I can. I have some post to finish, some post that beg to be written, there are pictures that need to attended it to badly & my Mom's 70th birthday is Friday, & her party is Saturday.

So for the next few days or so I'm going do some re-directing. Stacey did a post I want to share & I did some guest blogging for her. Stay tuned for that...

Things seem a little crazy at the moment. Emotionally, I have a million thoughts & things going on. I tried to call Stacey the last couple of days to talk to her, but I couldn't get a hold of her. Thea was away for her birthday & Beth is on vacation. What does a girl do when she can't access some of her best friends?

Go crazy & drive others there with her.

I just got things weighing heavy on my heart lately. Stuff I'll get through, I know. I just wanna talk it out with someone. Never underestimate the power of a friendly ear & a best friend.

100

100 things about me for the 100th post (in total randomness):

1. I cannot believe this is my 100th post!

2. I can talk to anybody & often do, even if they are a total stranger.

3. I have a great memory.

4. Over a year ago, maybe even two by now -I was in Coldstone Creamery & said to a lady in line, "Hey, I know you. Your name is Carrie & we went to elementary school together." I was right & it had been over 25 years since I saw her.

5. I hate green beans & will only eat them on very rare occasion. This is bc my mom had them all the time when I was a a kid & used to make me eat them.

6. I love reading & often use it to escape.

7. I just finished a novel called The Lightning Thief. It is the first book in a series. It's a lot like Harry Potter, but it encompasses Greek mythology, instead of Magic. I know it's deemed as a kid's book, but I could not put it down. I read it in a day and a half. The movie of this book is coming out Presidents Day 2010.

8. I'm embarrassed to admit I don't know when that is.

9. I am grateful that I like to (sometimes) read books that aren't really for adults. Sometimes, I just need a break from my very adult life.

10. My eyes are green.

11. I'm in love with people's eyes. They can tell you so much.

12. Sometimes I wish I had a sister.

13. I'm fat & I'm okay with that. Why aren't you?

14. I haven't had a hair cut since September of 2008, which is unheard of for me.

15. I need to update my profile picture, but haven't found a replacement picture for it (Note: Since this post is taking me forever to write I have found a new picture. What do ya think?).

16. I've been slowly withdrawing from my friends, & I'm not sure why.

17. I hate Barney.

18. I love Jesse, really I do. Lately, I've been wondering why he wasn't so damn LOUD in the store? What the hell was I thinking?

19. I am not a girly girl.

20. My favorite color is Purple. Although it has changed throughout the years. I also love Periwinkle, which was the color of my wedding. Periwinkle is also my mom's favorite color.

21. I have a scar in my back from when I was a kid & visiting my Mom Mum in VA & tried to climb a fence... Somebody really forgot to tell me I have CP. {:)

22. There are somethings I wish I could do over about my wedding.

23. Hell, there are things I wish I could do over. Period.

24. I hate hospitals.

25. I will however go to the hospital if it means seeing or spending time with someone I love. Even if it is to say goodbye.

26. I hate goodbyes.

26. I miss Mandy. More than anyone realizes.

27. I really was a "Poster Child." One day, I'll tell you about it. Maybe.

28. As a child, I wanted to be a ballerina. When I told my mom this (I think I was 3 or 4), she started to cry. I then asked, "Can I at least be an ice skater?"

29. The longest friendship I have is with Thea. We met when we were 2. Although I have to say there were years that we were apart in between there.

30. I met Jake in 1995. We were best friends. I liked him back then. He had no clue.

31. I asked him out on March of 2003. He tells me if I didn't ask him, he would have never asked me. Nice, Huh? {:)

32. I have loved Bonjovi since I was in the 5th grade. I will always love him.

33. I wasn't always the best picture taker. I got better over the years.

34. Even though I try to live my life with no regrets, I have many.

35. I wish I was disciplined enough to read the Bible from cover to cover.

36. Mathew 7:13-14 used to be my favorite passage. Now it's James 1:2-4, which is at the top of this blog.

37. My faith is more personal than my religion. And I think that's the way it should be.

38. I miss the churches I went to as a child, but they just don't fit with who I am now.

39. I am allergic to pork. I wasn't always. I miss bacon.

40. I was hospitalized once bc of it. Not fun.

41. Pork is in more things than you realize. Like gelatin (unless it's marked kosher). Gelatin is in every thing from dips to marshmallows. I miss s'mores.

42. I have a secret love affair with cheese.

43. One of my favorite cheeses is Brie. Brie taste different cold than it does warmed up, which is my favorite way to eat it.

44. While I do not hate it, American cheese is my least favorite. Now, Swiss on the other hand - I do not care for at all.

45. My father wanted to name me Nora Jean. I am so very thankful for my mother intervening.

46. I have had the names of my children picked out since I was little. They have not changed. People who know that often ask, "What about Jake, doesn't he get a say? To which I reply, "They get his last name." However, Jake tells me that he likes the names anyway. Maybe one day I'll get to share them with you. {:)

47. I have a beta fish that sits on my desk. His name is Aka, which is the word "red" in Japanese.

48. Pee Wee thinks he is a great mouse hunter. He's not... Most of the time.

49. The older I get, the less I want to deal with people. Really, life is not all about you.

50. If we were to get technical, life is all about Him. Then again, that is my option. It does not have to be yours.

51. I have friends & family with different beliefs than me. Some are even atheist. It's okay. I am still their friend & love them regardless. Always.

52. I have a friend that was murdered in 2003. I often wonder if they ever caught the person(s) who killed him.

53. I have a brother in Heaven. His name is Brent.

54. My brother Damon has paranoid Schizophrenia. I love him dearly & I visit him often. He can't help the way he is anymore then I can help having CP. A disability is a disability. One day, I will tell you about him.

55. We have 2 mixed Cds I made of some of my favorite Christian music. That's all we listen too anymore.

56. My favorite time is when we are going to church & we are jamming out to those CDs. I spend a lot of time talking to God then.

57. I'm a night owl.

58. I wonder if this will change if we have children. I think it will for a while, but I will always be a night owl.

59. I know that if I didn't have Pee Wee, I would go insane. I am so glad I have him - even if he is "just a dog." (Note: I don't say that bc to me his not, but to others that's what he is.)

60. I will listen to just about any kind of music, except for rap. I just will never be into it.

61. I know a lot of sign language. I learned it years ago, before I ever dated Jake. Who knew that my future brother-in-law & his wife would both be deaf? God's funny like that.

62. I often wonder why sign language isn't considered to be another language like Spanish & French.

63. I used to go to a camp called Camp Greentop for Disabled children & adults. The last summer I attended was 2003. It is an awesome camp & I would highly recommend it. Some of the greatest people that I know on earth, I met from there.

64. Sometimes I toy with the idea of going back to camp, but I think I am just in a different place in my life now. Plus, now with all the budget cuts, there is no way I could swing it money wise.

65. I do not like dead things, such as dead fish, dead hermit crabs, dead mice. I know it happens... I just don't like seeing it. It creeps me out.

66. I miss Jakes maternal grand father. He died in July of 2005 We called him Grandpop. He lived here with Jake & his dad (& me when I moved in). He never left this house. Seriously - for eight years, except to go to his daughter's funeral in April of 2000.

67. I never knew Jake's mom. I saw her once when I was at college & Jake never introduced us though. I always have wished I knew her. And I always wished she was here now. I would have really loved her & in some strange way - I do.

68. I could spend hours in Barnes & Noble.

69. I miss walking.

70. We just found out tonight that our GPS was stolen from our car. The charger is gone, the mount & the unit, but they left the bag we stored it in. We can't believe nothing else was stolen. Jake said he must have left the door unlocked & not knew it while he was at his job (apparently, the lock is acting up). I am glad that they didn't take the nice bag we stored it in bc Mandy gave that to us for Christmas 2008. Three months after Christmas, she died. I would have been heartbroken, if they had taken it.

71. Even though we go to church every Sunday, sometimes, I miss it during the week. I miss the connection with people & the hugs. They are the only hugs I get all week.

72. I am an extrovert. Very outgoing. Often loud. Most of the time I don't mean to be. And if I'm nervous, I get loud without realizing it.

73. When I'm upset, I get quiet. When I got a lot going on, I withdraw.

74. Jake used to be my safe place to fall. He's not anymore. I don't have one. I miss him being it.

75. People are so used to me telling them that it will be okay. Sometimes, I need to hear that too.

76. I love water. I drink about 4-5 liters of it a day sometimes more.

77. I love swimming & can do great things in it - like handstands. Go figure.

78. When I was a a 6 year old child at Camp Greentop, they put HUGE blocks of ice in the pool & called it a Polar Bear swim. I was not amused. And said, "What are you insane? Don't you know kids with CP freeze up (as in their muscles tense, it's hard to move & quite pain full - at least for me) when they are cold!" And for those who know me in real life - yes, in many ways, I was the same at 6 as I am now.

79. I love crafts.

80. One of my good friends, Regine & I met at oil painting class at the local senior center. We were 8.

81. I used to be terrified of dogs. I got bit by one when I was a kid.

82. I am grateful I do not have that fear anymore. And so is Pee Wee.

83. Even though I've done it 3 times, I am afraid to fly.

84. I love to work with kids.

85. Tonight, I gave Pee Wee a new treat. It is a dried, smoked cow's nose... ewwww! It is bigger than his head. He has been chewing on it for 2 hrs now. It is supposed to be great for cleaning his teeth. And when he first saw it, he just looked at it & sniffed it, gave a little lick & looked at it again, then looked at me as if to say, "Thanks, Mom! But how do I eat this thing?"



86. I've love Rosie O'Donnell & have met her. Twice. She even sent me tickets to her show once. I know some people do not like her. She has radical views & is outspoken. I don't care. To me, she is just a very real person who has a huge heart & is passionate. It makes me love her even more.

89. I love to sing & I used to be in Gifted & Talented choir in high school.

90. I used to be on Tech Crew too. I loved it. In fact, my Sr. year I was the Tech Director. I even used to climb the spiral stair case to the spot room. That made some people nervous & they didn't want me to do it. I didn't care. I did it anyway. A lot. In some strange way it made me feel normal - as in those with out CP - like the other kids & I loved it.

91. I am very stubborn.

92. I miss my Mom's mom. A lot. She died when I was 9.

93. When I was in third grade & at a new school, someone said that I stole some chalk. I did not. Ms. Chashen believed them. I got in trouble. I wonder who stole that chalk?

94. There is nothing that I tell people about Jake that I have not told him or would tell them in front of him. This is sometimes hard for people to understand. He's my husband. I am who I am. I will not hid how I feel or what I think from him. Good or bad.

95. My favorite season is Spring.

96. My Birthday is July 23rd. I share that birthday with my friend Thea, my niece Corrinne, my friend Travis, & several other people whom I have met, know & love.

97. Sometimes, even though I didn't have the greatest relationship historically, I miss living with my mom. For those of you who know the whole history, I know this statement is totally crazy. And to that I say, she is my mom & I love her deeply.

98. My favorite word is onomatopoeia.

99. Jake has never read this blog. He knows it exists. I've told him where to find it. I have even told him to read it. He never has. Sometimes, I wish he did. He says he'll read it when I post this post. And to tell you people out there in Blogland that he will. I don't think he will read it on his own, without prompting. We will see.

100. It has taken me 9 days to write this post & it's really hard to come up with 100 things to say at random - even if it is facts & thoughts about my life. This post will actually go live 11 days after I started it, which will be 8 days short of a year since I started this blog. It is one of the best things I could have ever done.

Little Lisa

After spending the night with Thea and Lyda, I just got home an hour ago. The moment I approached the house, I had an unsettling feeling that something was wrong. The house looked like someone left in a hurry, and things just didn't seem right. That's because they're not.

Around 8:00 tonight, my niece, Lisa, who is 18 months old, was taken to the hospital. She has first and second degree burns on her body (None of which are on her face - Thank God), after getting a hold of her 8 year old brother's hot chocolate. For those who don't know, Lisa and her family live across the ally from us. They are my whole world.

If you you are reading this please pray for our family, especially Lisa.

July 4, 2009

On Being Disabled: Just a Part of Me

I am so ecstatic! After spending almost 2 1/2 weeks in my manual chair, and being dependent on people more than I am accustomed to, I am FREE. Thank You, God! My power chair is up and running and it feels like a dream. The guy's name was Lou that showed up to fix it and he took 4 hours to do so. For whatever reason, it is always like that with this chair.

You just can't imagine what it's like unless you've been there. I try really hard not to complain, to take the hand that I've been dealt, to always see my glass as half full and not empty; to be nothing but positive. I have learned my world is a lot better and easier to handle, if I look on the bright side of things. Trust me, at times it is not easy to do and it is sometimes a struggle to do.

I haven't always been this way. As I've said before, this is what I have learned. When I had depression, it was difficult. Heck, if I saw anything besides darkness during the days of my depression, it was not only a good day, but a miracle. Seriously.

Although I've always had Cerebral Palsy (CP), I haven't always been in a chair. Sometimes (a lot actually), I truly miss walking like I used to, but by the same token, being in a power chair has given me a freedom I did not have before. For example, I am better able to carry things or take care of things, like my nieces and nephews. And eventually, although not yet, it will enable me to be a better mom. Also, cooking is easier and I can take the dog on a walk by myself. Simple things like that. And though I have always done things on my own, having a power chair takes my independence to another level entirely.

It bothers me when disabled people always use their disability as an excuse, constantly have pity parties, or complain. SUCK IT UP AND DEAL. Thea always says, "Life is tough, get a helmet." Gotta love her. I also have another friend, Bobby, who always said, "I have CP, CP doesn't have me." You see, some people let their disability define them. It becomes who they are. Me? I am - me. My disability is not who I am. It is one part of who I am. I am who God made me to be. He didn't make one part of me - He. Made. ALL. Of. Me.

The Begining of Forever

I am so undoubtedly in love with my husband. I really am.

I have known Jake since 1995, we met at community college. He was one of my best guy friends. We did a lot together - running Disabled Students Association together, both being extremely active on all the clubs on campus, going on leadership retreats etc... I was so smitten by him then it was insane, enough to drive a person crazy if she let it.

He had no clue. The only that knew the total truth was my best friend, Thea. One day, well - several days actually -I confessed my love for him and told her one day I would marry him. Not wanting to risk the great friendship we had, I stayed silent and he remained clueless.

Then in 1999, I graduated and moved on to a University to pursue my next degree. I didn't look back. I couldn't. If I had, I might not have the degrees I do now.

See, the college I was at was, to say the least, warm and fuzzy, but it was on the brink of changing - combining with two other area community colleges to become one college that had many campuses. I had numerous meaningful relationships from there and I feared that if I didn't make a clean break, I would never be able to leave. So I left, leaving everything and everyone behind.

Years later, in 2003, I became a student recruiter for my university and had returned to the very college I had run from four years before. To my surprise (and delight), Jake was still there, so we chatted and I mentioned we should get together. We had exchanged numbers, and I didn't bother to tell him that I still had his number in my address book at home.

Over the next couple of weeks we talked a lot on the phone, which I find ironic now because Jake HATES talking on the phone. We would talk for hours, even falling asleep on each other many nights.

Finally, we went out on March 16, 2003, the day before St. Patrick's Day. We went to see the movie "Bringing Down the House" staring Queen Latifa and Steve Martin at The Avenue. Afterwards we ate dinner at Red Brick Station then went to look around and chat at Barnes and Noble.

I was so giddy. I so loved his eyes. He has a funny thing he does with eyes and eyebrows, some would call it a quirk. I have always loved that about him. Of course, I have always been an eye person, ever since I can remember. And I truly believe, as cliche as it is, that the eyes are the windows of the soul.

Sometime during the evening, I had decided to risk it all. What did I have to lose? Nothing. So right there, in the Barnes and Noble Cafe, I asked him out. He said yes. We kissed and i told him. "I've waited eight years for that kiss." That was the beginning of forever.

You know what's funny about all of this? On one of our phone conversation before that night, I remember telling him that it was strange that over the last few weeks four guys had asked me out and I had turned them all down.

I know what you are thinking, I turned them down because I wanted to be with Jake. Wrong. You couldn't be more wrong. Strangely enough, this occurred in the weeks prior of reconnecting with him. I turned them all down because I didn't fore see my relationship or friendship with them turning into something more. And I so desperately wanted more.

For once, I was happy in my life, content where I was knowing that I was where I was supposed to be. Months prior, I had had enough. Enough of everything. Feeling like I wasn't enough, depressed because I was alone, disconnected from life, being distant from friends, and just hating life. Enough was enough, finally. Coming to that point was difficult but very needed. That's where faith came in.

My faith has been interesting to say the least. There have been many battles throughout my years with God. I love Him so much, yet there were many times when I hated Him. Believe it or not, it is during these times of hatred, discontent and questioning that my faith grew the most. I am a firm believer that prayer does not change God, it changes you. So I did what I had always done, prayed. This time was different though. I surrendered.

"Okay God. You know me, and you know what is best for me. You know and see the ultimate plan for my life, and I know it differs from my plan. I know that You have someone for me to be with and I trust You. I trust that You will send him to me in Your time, not mine. You are one in control, so I am handing it to You. I surrender my all."

Jake is not perfect. Not anywhere near perfect. There are times when he is very much a boy in a man's body; however, I have heard that he's not the only husband with that problem. We fight and disagree, but in the end, we love each other. We have had our struggles, and yes, I wish that he would get would get his act together, for the sake of the family we want. I must say though - I am not perfect either nor have I ever claimed to be.

Relationships - all of them - take work from both parties, it's very difficult to salvage a relationship that is one sided. Believe me. I've have tried. Jake loves me no matter what I've been through, where I came from, no matter how sick I get, how much I weigh or what I look like. Here is the most important though - he loves me no matter how broken I feel. How broken I am. He loves me, for me.