Dear God

Dear God,

I am so unworthy of your perfect love. Help me remember that I am perfect just as you have made me & everything happens in your time. Help me be more patient. I want to shut out this world & focus on you & only you. For you are the only one who truly matters.

Help me get connected & stay connected - to you and others who you placed in my life. Thank you for putting friends & the perfect people in my life at the perfect time. Help me trust them. And trust that all things work for good.

I choose you. I want to feel you - always; not only in good times, but in bad. I know that you are ALWAYS with me no matter what I face. I cannot do this without you. I need you and only you.

Love Always, Your Child,

Wordless Wednesday: Jesse

Unplugged

Sometimes - just sometimes - I want to disappear. Not die, disappear. Don't get the two confused. I've been feeling that way a lot lately. I'm just done with a lot of things. I am burnt out & I need time away from it all. I want to unplug.

I cannot give you, or anyone else for that matter, what I don't have. And if that upsets you. I'm sorry. I truly am. Sometimes, the world isn't all about you.

I am stretched thin. Too much giving without enough getting. Too much not being heard. Everyone needs someone to listen. Do you really think I am that different? Too much existing not enough living.

Then there is Jake, the biggest one who does not get it. And before you ask, no we are not having problems in our marriage - No we do not want to break up. Yes, I'm still desperately in love with him. He is just unplugged.

I don't know where he's been these past couple of weeks, but I wish he would come back. It's like he is just going through the motions. Maybe he is spent too. Don't get me wrong - he's here. He's just not connected. I just need him to get reconnected. To plug in. To totally get it.

And he doesn't get it. Neither does his family. I am sick of giving everything to them & getting nothing in return. I wonder if God ever feels that way? I know I feel that way a lot. I'm so done with not getting appreciated. So done with not being acknowledged. So done with not being respected.

The thing is, the thing that no one gets - is I'm going through my own stuff. And I'm not really sure it's stuff I want to talk about or even know how to begin talking about right at the moment. So, yes - I want to unplug. I want to disappear. Just for a little while. Just so I can find me - & my normal - again.

Not Me Monday: Praying for Stellan

This was supposed to be another Not Me! Monday post; however it is now:

It seems so fitting since Stellan & his charming family need our prayers, and his mom is the one who started Not Me Monday to begin with. I've been following Mckmama's updates on her blog, but the better way to get updated with the latest news is to follow her on twitter, which of course I'm doing.

My heart just breaks for Stellan. From what I can gather he is in heart failure and his kidney's are failing as well. But there is hope. There has to be. They are making plans to air lift him to Boston. I do not know what they are going to do with him there but, logic tells me they would not have moving him as a option if there was not some POSITIVE reason to do so.

I pray that Stellan's heart finds a normal beat again. I pray that Mckmama and the family get the answers, comfort, rest, & whatever else they need at this moment. I pray that the doctors & nurses have the wisdom to find the treatments and solutions they need to get Stellan and his family through this.

I also pray that those same people believe in prayer and miracles too, bc I know I believe.

Praying for Stellan

This sweet little boy is named Stellan. His I read his mom's blog, which you can find here. I do not know MckMama personally, but have come to care about her and her family, especially Stellan in the past couple of months, through the words she she shares with thousands of us. If you have not read her blog, I encourage you to do so. She has many talents (photography to name one - just look at that beautiful picture she took) & her gift for writing is another one of many.

All the talent she has, whatever gifts she possesses she still cannot heal Stellan. No one on earth can. Stellen has a heart condition called SVT. McMama can do a much better job at explaining Stellan & his medical condition than I can.

Right now, he is at the family's local hospital & in the PICU. Things are not looking good. They cannot get his heart at a normal level & his heartbeat has been pretty much at high levels (at one point I know it was at 224 per minute) for the last couple of days and the doctors seem out of options, for the night at least. Everything they have thrown at this little boy has failed - medicine, procedure, ect. I know for a fact, that his BP was 57/32 & they may have to vent him.

I'm asking that you pray for this sweet little boy & his wonderful family. I do not know what God has planned for Stellan, but I know he has touched the lives of thousands already. And I also know that with God, all things are possible.

Honest Scrap Award

Today, I became aware that I received this award On July 21, from Marcelle at Making Babies. How cool is that? My first award! Keeping with the requirements to receiving the award. Here are 10 things most people do not about me:

1. I want to be a mom, more than most can imagine.

2. I hate it when I can't get stuff from the kitchen frig or anywhere else for that matter. I think BOTH Jake & his dad should have to spend a solid week in a wheelchair. Then, maybe things would change around here and actually STAY changed (not just for a week or two).

3. I have no tattoos. But I've seriously considered getting one since Mandy has passed.

4. I think about people, friends and family, that I loss touch with or who are not as present in my life (or me in theirs), for whatever reason, everyday. Sometimes, several times a day.

5. I love my church. We travel about an hour (one way) to it every Sunday. I love the people, and I love the community. They are very open, excepting, contemporary, and accessible - in more ways than the physical sense of the word. We have looked at several churches to try to find one closer, without luck. Not bc we want to leave our church, but it would be nice to have one closer so I can get to it when Jake cannot take me. Like when he had that other position at work for a year and was required to work on Sundays.

6. I have many issues with certain things (like trust), but I will tell you what they are and fully admit and acknowledged them.

7. I am a very private person, especially lately. People confuse me being outgoing with being open. Their are many things my best friends don't even know. Even some that no one knows.

8. I will talk about or share my past with just about anyone, if there is a reason to do so. Even if it makes me uncomfortable. I truly believe you have to share your story in order to respect it.

9. I often get annoyed at people. And please note, this is NOT to anyone specific, but EVERYONE. So, if you just happen to be reading this and think is about you, you are WRONG. It is not. Everyone, means everyone. My biggest annoyance is if you want me to know something, tell me. I gave up my mind reading skills a long time ago. Many people rely on many things to communicate things. Be direct. Do not rely on text, or e-mail or other people to tell me things, especially if I don't respond back. Call me (I secretly hate e-mail). BE DIRECT. In addition, there are many who get mad when I don't respond to whatever or however they want. I'm sorry. I cannot be who you want me to be. I can only be me.

10. I wish people would stop asking me, hinting at, referring to me having a baby, putting pressure on me, ect.. about having a child or trying to have a child. God has the ultimate plan, and if it is meant to happen it will - in HIS time, not mine or anyone else's for that matter. Frustrating, I know. But very true.

I am passing this award to 2 people: Stacey at Musings of A Passionate Mind. Who hasn't blogged in forever, but is always honest when she does. And El at Profoundly Seth. Who shares not only the good parts in life, but the not-so-good parts also, with a difficult honesty that I secretly admire.

My (Not-So-Great) Birthday

Yesterday, was my 33rd Birthday. Even though I've tried to remain up beat and positive, determined to have a great birthday, I have failed at this. It was exactly three months since Mandy left us. As much as I tried to not miss her, the more my heart ached. Birthdays were HUGE to Mandy. I miss her more every day. At times, every minute.

As great as Jake can be, he really can be a be a jerk. No "Happy Birthday!" No card. No excuse good enough. We were even at Hallmark the night before. The "Well, why didn't you tell me to get you a card?" - your comment makes me want to vomit! Really? Seriously? How appalling! You are a jerk!

The same goes for my Father-In-Law, whom we live with. They KNEW it was my birthday, they did not forget.

All that I do for this family, this is inexcusable. I don't care if we have no money. You can get me a card. You can utter two words. You certainly found the words for the excuses. I give of myself so much. I make sure your birthday is recognized. I get you gifts. Some of which you don't deserve, but I do it anyway. It is not about the gifts though, it is not about the money, it is about the appreciation. The appreciation that I never get.

Update: Little Lisa

Lisa is doing well - her burns are healing remarkably well. She wound up not having to go burn clinic after several trips back to the hospital. They change & medicate her burns several times a day.

It looks like there will be little if no scaring, but it still may be a little soon to know for sure. The first degree burns, which are like a bad sunburn, are already almost gone; however, the second degree burns still need time. The doctor said it will take at least 6 weeks before they can really say. Also, the pigment of her burns are still really pink.

She wears these cute pediatric gowns. Lisa also seems to be in good moods and happier then ever, so I do not think she is in pain much. Thanks to all who are praying for her & are concerned {:)

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.

Wordless Wednesday: Beyond Love

Not Me Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

This is my first Not Me! Blog. Here it goes...

I am not getting tired of pushing myself in this manual chair waiting for the parts to come in for my power chair. I am not annoyed that Invacare just got the order Thursday and that shipment of all my parts should be shipped today, even though the parts should have been ordered almost 3 weeks ago. No, NOT ME!

Yesterday, I did not arrive a half late to church, then head to target to get a gift card for my friend Kimba, the stop in this christian store that we never saw before; ran it this heatlth lady there, she talked about having a good poo, bought some ground flax seed - spending some money we really didn't have. Then I did not go to Babies R Us to look around (don't ask, really - don't ask), and become fasinated watching my husband fittle around with the macanics of strollers. No, NOT ME!

Then, we did not drive over an hour to Kimba's BBQ to enjoy seeing her and meeting her dog, Cali, just to feel slightly out of place and to be reminded of just how old I really am... or is it how young everyone else is? No, NOT ME!

Then (yes, it gets even better), I did not see in the GPS that the bar that I met my dear feiends Mickii & Phyl at 12 years ago (through a camp outting to the bar when I was 21. And before you ask - Yes, they really do take a bunch of adults in wheelchairs or not, all of whom have some type of disablilty to a bar for a night of drinking - soda or otherwise, dancing and just plain fun) was only 20 miles away, and guilt my husband into (sorta) going to see if they were there; only because I've lost contact with them - their phone is disconnected, one got married, ect. I did not get there and the owner Suzie say

"Hey, Shannon! You're early!"

"Early?"

"You know camp's comming in tonight, right?"

"Oh, I didn't know. I came here to get in touch with Mickii & Phil because I lost contact with them."

I did not procede to sit down, order water and a tea. Then eventually a burger for me and a basket of fries for Jake. Allthewhile keeping the bill under 10 bucks, again, because we really didn't have money. Why do all the bills have to be do in the begining of the month? And did not ask for the bill, pay it then say goodbye to Suzie, for her to tell me that camp was unloading the van as we speak. Then I did not spend almost 2 hrs talking to people I haven't seen in forever and catching up with an old friend Sarah. Did I mention Jake had to work this morning? Finally leaving, to drive an hour and a half home and crawling into bed at 12:15 AM... No, NOT ME!

Figuring It Out

I've been trying to figure this blogging thing out some more. This whole world is rather new to me. I do not have a following, or even people that I know of anyway, who read these words regularly. I am not, by any means http://www.mycharmingkids.net/ And that is perfectly fine.

Again, this is for me, not anyone else. At least right now, that is how it is. I would like to do some stuff with my blog and learn some simple new things, such as how to put links in that are WORDS and not actual addresses until you click on the word.

I read a lot of blogs. Mostly ones that I stumble upon through links and happenstance. I see all these cool links, pictures, and tools for blogs that I have found are not so easy to figure out. Is there a do this, do that to your blog 101 class that I'm just not aware of? If so, I would really like to find it.

Sometimes nothing makes sense. Have you ever had one of those days? The kind of days where you're exhausted, but have done nothing. Are not feeling yourself, but can't put a finger on why you are feel this way? Where you aren't sad or depressed, but are not really happy, or even content either? Yes, it has been an ordinary-not-so-extraordinary day.

I just feel out of sorts today. Discontent, like I'm missing something, but I don't know what. It's as if my world is about to change or has already changed and I don't know it yet.

Faith & Fireworks

I find it interesting that I didn't start this blog to talk about or to be centered around faith, but that's what it seems to be turning into. Perhaps, that's because I find myself not only changing as a person, but growing as a Christian.

My friend Lyda just found out last week that her mom has lung cancer. This has been a trying time for Lyda, as this news is just one more thing piled on top of other struggles, such as being let go as a school teacher, a result of our failing economy.

There is no question that things are not great in her life right now. I can not imagine what she is going through, so I won't even try. I wish there was something I could do to make things better, but I know the only thing is to continue to pray. I wish I could tell her everything is going to work out or be okay, but that is something I can't guarantee. No one can.

On another note, the Fourth of July came and went. A holiday that was always big to me in the past, wasn't so big this year. No cookout for us, no spending hours on end at the town fair. We did go, but stayed just long enough to get pictures of the kids and leave. Jake had to work most of the the day, so it just wasn't the same without him.

Not to mention, I missed and thought of many people that for whatever reason just weren't around (I'm still missing Mandy EVERY day, wondering when the day will come when she is not the first thing I think of when I wake up).

That coupled with the fact that I've been "grounded" since last Tuesday night, with my power chair being broken - which meant I had to use man power and rely on others for help to get around and do things in my very old falling apart manual chair - didn't make me want to be all eager for the Fourth of July. We did however, see some cool fireworks though.

No the holiday didn't go as planned or even how I wanted it to go, but I have found that if I focus on how I think things should be for too long, I miss some pretty incredible things around me.