Wednesday, January 31, 2007


The woman who wears these shoes
The girl who carries this water bottle everywhere she goes
The saint who is cooking, cleaning and picking up
The companion who finds time to listen
The servant who is letting me rest
The brave trooper who is working here, despite her own battles
The lovely beauty that goes where she goes
The calming attitude that permeates our home
The nurturing soul that drives her to 'mother' us
The sister that I adore
is my home...being and doing all that I mentioned...

and we feel so loved by her

Tuesday, January 30, 2007

Self Portrait Tuesday

I found the old picture in the back of a drawer
at first, I laughed at the 80's big hair style
but then, the picture began to speak to me
I sat down and let it take me in
knowing it had something to say
I expected a profound and lovely message
instead, I got a lesson on the subject of
The eyes spoke of trusting that came too easily
the smile said I was content, but felt I deserved more
my posture was straight
and I had an expression that surprised me,
I did not feel completely comfortable in my own skin.

20 years ago I was fairly care free
I didn't own a house
my car was held together with duct tape
and my cupboards were filled with food
that I purchased with WIC coupons,

Putting the picture down
I stared at my reflection in the mirror
that fills the wall of my dining room
now I own my house and drive a nice car
my cupboards are filled with food
that I have purchased with a debit card
with more than enough funds in it
so, what does this face tell me?
My eyes spoke of choosing trust carefully
the smile said I am content with the
trials that I bare
my posture was still straight
and my expression didn't surprise me
at all
I am completely comfortable in my own skin

20 years have passed by
I am 20 years older
trial tried and ready
slower because
I stop
and smell
the roses now
but that hair just had to go ;^) !

Looking My Worst and Happy.

Rain, the barometer dropping and freezing temperatures bring out the worst in me. Most women would not even think about putting pictures up for display like this I am!

This is what lupus does to my face. I look like a ghost, but I have lipstick on. (it makes me feel better..."Hey, a girls gotta do what a girl's gotta do *wink*) Besides, it helps me to smile and I like to smile when I am taking care of Mark.

This is the worst rash I have ever had during a flare. It eventually ends up all over my face and burns like mad. It doesn't make for a great makeup palette, but that's okay. The lipstick works fine.

But what I really wanted to say today was that life can get pretty hectic, throw you curve balls and catch you off guard, but you must tell yourself to be happy.

There is a story about a man named Job and he was a wise and wealthy man. One by one, he began to loose his possessions and ended up with nothing. Job's secret???

He was joyful and loved his relationships with others. This kind of happiness is a choice. Usually it's the last choice, but a choice, nevertheless. I have found that:

1. I can be in pain and still smile
2. I can dislike having to get up 15 times a day and still smile
3. I smile when I'm nervous.
4. I can dislike what I'm being asked to do, and still smile.

Smiling is fun and contagious and I like to see just how many people in the room begin to smile by me being the instigator today, you just may get them back.......count them :)

Saturday, January 27, 2007

A Story Book Quilt ~*~ About our Love

(Update on Mark)

This was sent to me from a fellow bloggette. We will fondly refer and remember her as "Pink Sky" until she resurfaces as someone else. Currently, she is taking a "Blog Break" as many of us do.

She made this from her loving hands and it holds a story. (Cleaver little bunny ;-)

A Story Book Quilt:

1. Think of this quilt as a warm hug from me. It is what I am able to give you from miles away. I am with you.

2. A feather for hope and for wishes of wellness.

3. For all of the bloggers united around the world for you and Mark.

4. Sending you all the love I can.

5. Because I am your cheerleader, "Give me an M!"

6. Remember to nourish yourself, drink more tea and relax.

7. Because he will always be your baby.

8. "A Walk in My Shoes" for you, my dear soul.

9. For your knight in shinning armor....your hubby.

10. For sister's, our own brand of magic!

11. For that sweet doggie that's waiting for his master. (Breezy)

12. Sending reinforcements for any flight or journey.

13. Hope for the sunny days a head.

14. I am here if you need me.

15. For the everyday hero's that worked to save Mark's life.

16. Wishes for peaceful nights of sleep.

17. For Friendship!

How adorable is that?! We have the most creative bloggie world ever! So glad to be a part of it :^)

Update on Mark: Mark went to the doctors yesterday and it took 4 hours. A blood draw, resizing his back brace and general look over. He was beat by the time he got home. So he is sleeping off this much needed rest. I think he has gained a few pounds and each day is a teensy bit better. Let's just say...the journey to wellness has begun :) Again, A "Thank You" to all of my bloggie family. What a wonderful world we have. We are blessed.

Saturday Morning update: Mark is angry today. He is sick and tired of having to call me for help. I don't blame him, because I understand the uselessness I feel when I need someone to help me with such menial tasks. Stumbling his way from the bathroom, I told him he needed to wait for me to at least get up from the couch. He snapped at me, I guess I didn't expect that to happen so soon. I got him settled in bed and I apologized to him, he closed his eyes and when they opened back up, he had tears and said, "It's not you Mom!"
"I know...I know it's not me. I know this sucks, but your going to have to be patient with your body." I layed my head down on his knee and wept. He just stared at me, silent...looking at me like he wasn't ready for me to cry about this yet. I felt silly... stupid for crying in front of him right then. I wiped my tears and asked him if there was anything I could get for him. We both knew that this was the ice-breaker question I needed to say, so that I could leave him alone. And now I'm here on the couch. Typing these words to you and trying to cry as silently as I can.

I forget he is 'Mark, the man' he is not a little boy anymore even though he needs me to be his Mother, he doesn't need to be treated like he is a child. I need to find the balance between the Mother and the Friend.

All I know right now is... that I don't feel good either and it's very hard to be a friend, a mom and have lupus too.

Thursday, January 25, 2007

When I had my first coherent thought this morning, it was, "Oi, I'm in so much pain!"
To be honest, the last thing I feel like doing is being a cheerleader for anyone. I wanted to pull the covers over my head, but wait, I have to throw up first. I ran the water really loud, so that Mark would not be able to hear. I look some pain medicine and sat for one minute on the end of my bed because I wanted to cry...I did a little. Then I sat up, took a deep breath or two, and smiled. Stood up on my wobbly legs and made it down stairs to greet my son and ask him what would you like for breakfast? :)

So I went into the kitchen and made him breakfast and could not stop the tears as I reached and winced through the pain....lupus sucks and right now, today, I hate it.
I wish I could make that shadow of me come alive and do one job or the other, because doing both hurts and I just don't want to give Mark any reason to feel bad for being I do. Forgive me

Wednesday, January 24, 2007

Presents From Angels

Mark has a puppy named Breezy and this stuffed dog looks just like her. Mark hasn't seen Breezy for 6 weeks!

He collects elephants and this one is praying. I collect boxes and this one is gorgeous.

This angel adorns my backyard and represents all of you.

A greatly needed book of peace.

I wear this necklace every day

Gorgeous handmade cards from a blogget's kindergarten class students.

More handmade cards from one of the many schools that my hubby is in charge of.

The most tiny, beauty filled, detailed paintings on the backside of dominoes

The softest, coziest sock booties I have ever worn! AND I LOVE pink :)

A dream catcher that is most special, as its previous owner had owned it since childhood.

A hand painted card that I use for a coffee table books bookmark.

This (Oh so special scrapbook) will hold all of my posts regarding Marks and our family's experience.

This wooden angels guides us in every was and will become a member of my special 'Angel' tree ornaments.

This angel matches the colors in my family room and has become a permanent fixture there.

Some of you may recognize this award winning quilted post I get to decorate my studio with it :)

A collage made to represent the love that Mark and I share.

Rare collector's paintings from one of our 'younger' bloggets.

A book of Motherhood about the truths, trials and triumphs of this most precious role we will ever have.

I did not put names next to these gifts, I have kept that between you and me, but I can say this, there are more that I have not pictured here, blogger only allows you so many downloads. So, I will have to dedicate another post to the special treasures that have graced my home. Tomorrow I will show and tell you about a very special quilted blanket that came here also. It carries with it a significant story that I'm sure will touch your heart, as it did mine.

~*~Marks Progress Report: Today was a rough one, we take 3 steps forward and thank goodness, just one tiny step, was a back step day....but it looked like just a few inches to me, not even enough to call it a step (;-) *wink* I can't tell you all enough that this entire situation has been such a blessing for all of us here at home and many of you in your own homes have expressed the same. Mark and I would love to hear more about that. He still can't believe that so many people care about him, as he is feeling quite small these days. I keep telling him what a giant hero he is and eventually, it will all sink in.

I love U all...Thank You

Tuesday, January 23, 2007

Being Kicked on the Inside?

I was in the perfect state of mind when I received this book about Motherhood from Jane Poe - Nevermore. Yes, we do start motherhood by first being kicked from the inside. OH how I remember those mornings when I got up and felt like someone had played a game of dodge ball behind my ribs. And here's the Update on Mark......

He is having some trouble digesting any food. Bland or not, there seems to make no big difference in what happens next. Bad cramping and straight water. Tests are always being done and redone and we feel wonderful taking care of him and having him home.

I am having some of my lupus flare and really need to take care of that, so today I'll be laying low. Mark has lost a total of 40 pounds! It was shocking to him and other's that visit him. We spent part of the day opening the many cards and packages that were sent to him (a couple of you had asked for an address, email me for that please :) He tires easy and the entire digestive process is exhausting for him. Travels in the wind had her entire class make 'Get Well' cards for him and it is quite apparent that Mark loves children.

The most ingenious small pieces of art have taken hours to look at because of their beauty. All these things and more make Mark smile, a sight worth it's weight in gold.

Baby steps....I am grateful for baby steps because we take one more every day. The other night I heard Jay crying into his pillow, trying to muffle his sorrow away from anyone else. I save mine for the shower. Being so very grateful and feeling such deep sorrow seem strange bedfellows, but in this house, at this time, they have taken up residence. At least for this week and we try our best to smile through it all.

Thank you all for your unfailing love and kindness, it is truly courageous.

Monday, January 22, 2007

Death Gets a New Job

Many people talk about 'near death' experiences and how much it changes their lives. I almost died 3 years ago and I didn't experience any significant epiphanies. As a matter of fact, I felt very, matter of fact about it all. I don't fear death, so maybe that had something to do with it. But, Mark came close to death, more than once and THAT had a huge impact on me. I was thrust into a flurry of emotions that felt like fire and ice water. I went long periods of time in silence, eyes filled with the sight of our son's helpless broken body. My mind traveled everywhere and nowhere at the same time. Flashes of his childhood would zoom across my mind so fast, that I barely realized what it was I was thinking about. I remembered conversations I had had with him, the funny faces he makes, his quirky side and the fact that he's not afraid to cry. I recalled and mentally began putting things in compartments, willing myself to never forget anything about him. Being in the general vicinity of death, I found that I was being taught something.

The difference between my experience and his?.....If I were to leave, I would be in a better place of love and light. If he were to leave, I would be left here to mourn and no consoling would be enough for me and THAT made me made me think about (love).

Who do I love.
How much do I love them?
Do they know that I love them?
Do I tell them that I love them?
What is love?
Does love have levels?
and if it I say, "I level 3 love you?"

So, for the better part of Marks ICU stay, I thought about love and how silly people can be about saying it. I am 45 years old, if I am lucky, I might get to live another 30 or 40 years. The first set of years has gone by so incredibly fast, no doubt the second set will too. I've decided that being stingy with saying I love you isn't very useful, so regardless of the level, regardless if it's even a momentary feeling, if it's anywhere near the category of love, I'm going to say it. I'm going to say, "I love you."

The worst thing that will ever be said about this is, "Geez, that lady sure does love a lot of people!" And they would be right.

Oh....and by the way...."I love you, on every level :D"

Sunday, January 21, 2007

A Well Run Factory

Bodies are amazing...and when you add a miracle on top of that, you get Mark. From the moment he walked into the door, he said he felt better. We had everything ready when the ambulance arrived with its precious cargo, my first born. Mark cannot ride in any cars for a couple of weeks, so he got a lot of looky loo attention when he showed up. (which Mark hates :) I think he smiled for the first couple of hours and then the excited energy started to wear him out. We smiled all day! And just hearing him call me..."Mom" thrills my heart.

I have a box in his room filled with the many packages and cards that have been sent here. He wants us to go through it together after he settles in. He gets that patience with presents from me :) We like to savor the moment. In this moment, he will learn all about you on a more intimate level, so far, you have been referred to as, "the entire Universe." It has been 5 weeks since that life changing night. Mark passed through 3 very critical, almost death moments to suddenly sleeping under our roof in Godspeed time and none of us can talk about it without getting emotional.

Mark is so strong, I mean really really strong. He has to carry his entire weight with his upper body with every small step he takes. He does it with grace and hardly ever complains. One of the difficult parts of this is the eating. Food travels right through him and this is not good. The doctors are telling us that he should be farther along, but come on...I am nothing but encouraged and know he just needs more time.

Even though everyone kept saying that the road would be long, it didn't really sink in until now. It will be long, but there is so much for us to learn from this. Already, Mark is thinking about becoming a Respiratory Therapist and right away did some research while he was in the hospital. He would be perfect for the job. But, even more than that, all of our lives have been enriched and I feel so much love and hope for the future, by the simple act of just looking into his eyes.

p.s. I did get that chance to hold him...nothing has ever felt better :)

Thursday, January 18, 2007

What's Holding You Up?

If you're wondering what this is, well, it's a bed riser. These happen to be 8 inches high, just about the right height that the doctors told us Mark would need to
get in and out of bed with his healing back. We are running around buying what looks like obstacle course items for the shower, toilet, bedside and any form of back bracing pillows. Why the rush? The doctors are discharging Mark today!!!!!

He will be home by the afternoon and I am both thrilled and apprehensive. But let me say this....He is our miracle. Not just mine and my husbands, but yours too. We did this together. I have no doubt in my mind about that. I needed you in such a way like I have never needed people before. I again Thank you for helping me get through this crisis.

Having him home will be wonderful and very scary at the same time. He has lost a total of 35 pounds and saw himself in the mirror today. He was upset that the image looking back at him did not even resemble himself. His intestines, stomach, foot and back need special care and I am going to do my best to take care of him. But the thing I can't wait to do, is to hold him in my arms and tell him how very grateful I am to God that he is here and a testimony of great inner strength.

Mark, you are my hero! Welcome Home My First Born Child!

I Could Spit!

The phone rang first thing in the morning and I answered, "Hello?"
His weak voice met my weak voice and he said, "Mom?"
He was calling to tell me that he wanted me to stay home today. He could tell that I was tired, in pain and needed to rest.
"But, I'll miss you Mark." I said.
I could hear his breathy voice in each word, "I'll miss you too, but you need to rest. Rest mom, I'll be home soon and you need to rest for that."
I knew what he was imagining. That picture of his mom on a bad day, pale and needing to lay down. The thing that broke me when I hung up the phone was his recognition of an other's need, while he is dealing with his own. That he called me before I would get the chance, to set my mind at ease, and relieve me of my duties for the day. He was giving me permission to take care of myself, rather than take care of him, be it mentally or physically. And as I stared at the phone, long after I had hung it up, something in me stirred.

Anger. It surfaced all on it's own, completely out of context and I thought I was going to self-combust. I've been suppressing it, hoping that it would eventually dissipate, but it obviously wasn't going to. When you let go of anger, is there a specific place where it goes to? I hope so.........

I'm letting go of the following and ask that it be replaced by peace:

* I am angry at the driver that made such a stupid decision.
* I am angry that Mark even got into that car.
* I am angry at pain.
* I am angry that lessons can't be taught another way.
* I am angry at lupus and fibromyalgia.
* I am angry that the driver already had a DUI.
* I am angry and I choose to let it go.

Something I often think about, where my mind would go as I watched Mark's chest rise and fall, not breathing on his own, is how many times people get into cars without even realizing that they are at the mercy of the one behind the wheel. How many times do young people leave parties or gatherings and 'hop a ride' with someone they hardly know. This is the nightmare that parents worry about. This is what we think as they near the age of getting their license. For me, this is what Marks story is about.

I have felt compelled to share this journey that is not yet over. Many of you have been drawn into it. You have cried, you felt worried and relief. Please, for me and for Mark, tell his story to your children, to your grandchildren, to your students and neighbors. For me...and for you, this is more than a story, this is real and supernaturally, you have been moved by it. Promise me you will not forget Mark's story. Promise me you will tell it to someone who might need to hear it. And when you tell it, don't start with, "I read this story...." I'd much rather you said, "I know this boy named Mark...." His seat belt saved his life, it caused a lot of injuries, but he would not be here today had he not used it. But even more important than that, none of this would have happened, if he had never decided to get into that car in the first place.

Wednesday, January 17, 2007

A Rose is Still a Rose When Evening Falls

My hubs and I have been through many a crisis together. Having a spouse loose their health, their capacity to contribute financially, household upkeep, rearing teenagers,is not an easy task. And none of us can define which crisis will be that certain persons true test of character, but lets face it, some of us are stronger in different areas of our lives, therefore we react out of what we are made of. When a mother and a father have a crisis that involves their children, a life threatening crisis, there is a moment in which you decide, as a couple, who is going to hold it together. I lost it at the accident site. One look at Mark and I was gone. I went into immediate shock and could not stop crying. I held his cut up T-shirt and dress shirt in my arms and began rocking them back and forth. A mother's instinct to comfort, even when there is no one in the covers. I cried and rocked as we followed the ambulance and J just kept saying, "Hold on son, just hold on tight!" A mantra said over and over as I rocked.

Yesterday marked 1 month that Mark has been in the hospital. Because of J's work and our shift duty there, J and I rarely see one another. When we do see each other, it's about updates regarding Mark, because one of us saw the doctor that day. All we have done is eat, sleep, and go to the hospital.

Suddenly, we sat down for an evening break long overdue and I looked over at my husband and he felt like a stranger to me. He agreed, he felt like I was a stranger too..........wait a minute...HE is the stranger, not, J felt that I had become the stranger also. We were both guilty of pulling back, focusing on the task at hand and all of our conversations were about Mark, the hospital, shift work and sleep. This takes it's toll on a relationship.

So, once again, it was time to regroup. J said, "A Rose is still a rose, even when it's dark out. You just have to look a little harder and maybe get a flashlight or two." I'm still finding the sentimental meaning in that statement. I understand that we are in this together....what I don't understand is.............

Why do I feel so distant from him and inadequate as a caretaker?

Tuesday, January 16, 2007

"So, How's Your Poo Today?"

No, Really? How is your poo?

This is all it seems we talk about in my house these days. It's the first thing I ask Mark when I get to the hospital. It's the first thing the Doctor asks him too. All we do, is sit around and talk about poo. We are way beyond the occasional boofa subject matter, now we're getting much more serious. Poo has taken center stage and at this present moment, it's all about what goes in and what the details are, when it comes out.

I know, so sorry...but I warned you that I was going to be raw and honest.......

3 days ago Mark had a severe attack of know what I mean. Lets just say that things weren't really "running" very well. Because he has been on so many antibiotics for such a very long time, it ended up killing all of the 'good' bacteria in what little intestines he has left. The bad bacteria multiplied and took over, this was NOT a good thing. Plus, the part of intestine that he lost, had the job of removing the water from our food, so Mark is now unable to 'dry out' his food. The last three days have been difficult. As a matter of fact, we were down right scared for a day or two and poor Mark, he was forced to get up every 40 minutes or so. This involved a number of procedures: unhooking him from the leg pumps, strapping on 'Das Boot', slowly sitting up and waiting for him to catch his breath, putting on the back brace (no small endeavor) walker placed in front of him, standing up and again waiting for air, walking over to the bathroom, settling him down and at last, some privacy....(until we all openly discussed his poo). By the end of THAT day, Mark had waaaaaay over done it, looked horrible and we were exhausted. He was in so much pain internally and out. I came home and just cried for him. I couldn't even write about it while it was happening because it was just too upsetting and the doctors were truly concerned. Were these beat up, bruised and stitched intestines going to start working right? Today, things are looking better, but he is not, he's a little green and sleep deprived. Today, all he could do was sleep, sleep, sleep while we whispered about his poo. I finally laughed out loud when the nurse came in and we all started clapping about his latest poo. He looked at us, proudly gave a lopsided grin and then fell back asleep. And that's the story, he's 25 years old and with tears in our eyes, we're gratefully clapping about his poo ;^)

Monday, January 15, 2007

A Fragrance * The Prayers of Children

The Prayers of the Children
They float up to heaven on the wings of their guardian angels
and their fragrance is that unknown to man,
these prayers of children.
Innocent and untainted, they flood the heavenlies with pure faith
and rest in the arms of comfort and peace,
for they have no doubt to battle with
or fainting idea's that unwind their requests.
Is there any question then,
that the wisest most powerful prayers
are those of the children.

2007 has started with an intended journey, not the kind you plan, or ask for, that other kind. The kind that tills your soil, digs down deep to churn the very core of who you are, or think you are. Because I enjoy learning so much, I find most journeys interesting, knowing that the lessons learned will be well worth every worn out pair of shoes it takes to finish. However, this journey includes my entire family, not one of us is being dismissed from this course. I end every day in tears, sometimes they are happy, sometimes not. You know the story and many of you have worn your own shoes out with me on this one. You have done the traveling and felt the pain and weariness that sinks way deep into your bones. But did you know that we have had special visitors accompany us? Did you know they were small of stature, tiny feet and hands, wide eyes full of wonder. They ran in from being outdoors and they smelled like wet dogs. They randomly checked in on you just for a kiss that left wet, red kool-aid on your cheek. They saw you crying and they stopped what they were doing and immediately wanted to know what was wrong? Many of you shared some stories with me about your children and the impact Marks story had on them. Some of you showed them Marks pictures on your computers, explained what happened to him and that now, all these people all over the world were lighting candles, saying prayers and making good wishes come his way, so that Mark could get better. Well...........

They wanted to help too. Their innocent pure hearts wanted to get involved and so they put on their best walking shoes and got in line right along side of you and me. Through these tiny warriors, Mark got blessed at bedtimes, dinner tables, on couches holding hands with their mommy's and some of them even participated in a prayer vigil that this wonderful woman arranged for all of us to gather in an organized effort. I stood in my back yard with my jams on in Marks behalf. It was a sunny late morning and the birds in my back yard hushed their songs for an important moment. I cried.
Mother's...please tell your children that Mark's Mommy is very grateful for their beautiful, lovely prayers. Show them my profile picture and say, "That Moma right there thinks you are the most wonderful child in this entire world." And I mean that. Each story that has been told to me, each comment touches me so deeply that I read them all through bleary eyes. I have been crying so much these last few days. Grateful tears that fall safely on the shoulders of all of you and the children.
I have a bff...yes, even us 40 somethings have Fristers that run to get you Starbucks when you can't. She also is my neighbor, 2 doors down. She has been reading many of you for months and finally took the plunge...yes, she is a bloggette and you cand find her here. It will be a Sweet Surrender, I'm sure!

Sunday, January 14, 2007

Today, sitting beside Mark as he slept, I paid closer inspection to him from head to toe. His hair was 1 month's growth longer, skin was yellowed in tone, his sunken eyes had dark circles around them, cheek bones strikingly protruded, he looked....fragile. My big strong construction working son looked so frail and weak. I arrived just in time for his physical therapy and she carried in the enormously clumsy back brace. It screamed, torture chamber and looked like something out of a horror movie. As I watched him struggle to sit up and listened to every instruction that the therapist reminded him about, I realized he was coming home to me and that I would assume the new role of physical caretaker. The boot cast, walker, back brace and all the strict rules that minded his broken back and ankle were overwhelming and a big responsibility. I learned that what we thought was a broken foot, ended up being an ankle bone that travels into the foot. This is the worst most possible bone that he could of broke because any amount of pressure on it could shatter the bone bellow it and that would mean surgery. So, I watched him hop step on his left foot and then drag his right, heavy booted foot, along side. I asked the therapist if hopping was okay for his abdomen and back and she said, "Well......" and kind of shrugged her shoulders.
Standing up, he looked horrible. Pale, muscles weak with shaking and 30 pounds thinner. He resembled a gangly little boy again, not the filled out man that was stuck in my mind. I wondered if he has looked at himself in the mirror at all and figured he had not. That will be a shock for him to see. He took two steps and stopped, claiming that he wasn't sure he could go any further. He did though and it was such an ordeal to get him back into bed. He was white as a sheet laying there, exhausted. I sat there looking at him now and for the first time I separated myself from this situation...I stood back and looked at myself looking at him. I was scared and certainly didn't feel that maternal instinct kicking in. I don't feel qualified to take care of him in this condition.
As your children grow into adulthood, they ask for a lot of advice. They respect your opinion and look up to you in a different way...a more adult way. And here I was feeling so inadequate and vulnerable, wondering if I was really all gown up. Instead, I felt like we were both children again.
There is still not enough time in each day between home & hospital, phone calls & visitors, blogging & emails and lupus......I still need a couple more hours, to delight myself in some blog visiting of my own. My favorite list on my laptop is huge as I have fallen so hard just through your comments. Getting to know you better with day to day reading has now become a treat instead of being a part of my predictable routine. I miss predictable *sigh*

Friday, January 12, 2007

Time to Get Off of the Roller Coaster

These last couple
of days have felt like
a whirl wind. It's really
windy outside and it fits
the rush of things swirling
around my brain. So many
things can change in just a
few days. I struggled with
going to see Mark and taking
care of my lupus....that is until
lupus decided for me.

Mom was here for 10 days. She did all the driving
because I was sick and it seems like every where
we went germs were now multiplied and a great concern.

Daddy hasn't been alone for that many days in a long time.

Even Daisy wasn't eating!

Hubby was pulling 12-15 hour hospital shifts for almost a month now.

But this wasn't
about any of us. This was about Mark
and many things had to be laid aside,
while we all concentrated
on his healing.

Mark would have nothing to do with the death that tried to hover over him. He was proving himself to be strong and courageous...a mighty warrior, just like the meaning of his name. And the very angels themselves made sure it would be so.

If life was lived at the County Fair, my family would have been put on the Roller Coaster and not be allowed to get off. I haven't seen my husband in weeks. He comes home, eats and goes to bed. I just finished a round of cluster migraines and a small lupus flare. I am praying that I can go to the hospital today to see Mark. We have talked on the phone a few times. My mother was here for 10 days helping me and she and my lil' boho sis and boho bro will be coming back to help see Mark get healthy and love on him for too :)

Update #25 ~ Mark has turned a corner. Within the last two days, he went from clear liquids to actual food. ( food :P Who cares...he was eating. He is showing signs of nausea and the doctors don't want any of that. Things are traveling in and out fine *wink* and they are all amazed at his rapid rate of healing and recovery.

But are we?

No, because I think we just witnessed a miracle! This community of bloggers got together and unselfishly carried the burden and took on the responsibility of a stranger. The stranger in danger...and I called, my family called...and you all answered. *tears* I never even imagined this possibility, the deep potential of a support system that could be so effective without people even meeting one another. Glory to God and a very humble "THANK YOU" for all of you who saw my family and I through this. The war is not over...but we have won the biggest part of the battle and I could not feel more gratitude than I feel right now.

I have made many new friends and you all know who you are. Please continue to email me and correspond. I need a few addresses and will compile a list and ask you to email them too me.

I will continue to post updates on Mark because he is still walking around in those woods, but at least he has you for his supplies...he is equipped with your prayers, meditations, candle lighting and positive energies. He will be coming here to temporarily live as he recovers the new battles that crop up. I suppose that will greatly involve me, so I will be posting about that, as well as his progress. Today is a good day. Mark has only yet, to find out exactly why he came through this so well. His recuperation will be long, but I have plenty of material to read to him as he mends. I think hearing every one of your words will continue doing the work you sent them out to do.

:: I was just told that Mark took his first steps today! (Mind you, he still has a broken back and foot.....Go Marky Go!!!!!!!!!!!!!!!!

I love you ~~~ I love you ~~~ I love you XOXOXOXO Darlene & family

Wednesday, January 10, 2007

Right Above My Heart

:::::: Darlene has had another Lupus flare and was taken to the doctors for a shot. She will need a little recoup time and will update you on Mark in just a day or two. Our entire family appreciates the superior support from everyone.
Thank you for your kindness,

The Curtain

His big smile melted my heart, the piece of me
that was still behind the green curtain
separated by that material partition
that slides back and forth on metal wheels
no one cares about the curtain
just what lies behind it.

The poem is mine, the heart is mine, the boy behind the curtain belongs to me, but the look on his face as I sat in the chair beside him, was his. And the smile slowly turned into a frown as our eyes made the connection, that connection speaks volumnes without a sound and right then, I knew he caught a glimps of the long road before him. His eyes were clear instead of that clouded look that comes when morphine surges through his veins. One hour ago, a slow scoot to the side of the bed, the trembling as he commands his body to do things that cause great pain, his feet hit the floor and the effort of balance takes its tole. He stands and the blood rushes to his feet, gravity pulling like a weight at his tender middle and in a moment, he is finished. Now, lying again on his back, he closes his eyes and gives in to the exhaustion that washes over him. And when he opens his eyes again, it is my face he sees peeking around the green curtain and he smiles, waiting for me to take my place in the chair, so he can tell me what he did that day, his fears, the future and how it made him feel about himself. The tears...were ours.

Thank you Teresa, for this gift of love that will sit right above my heart.

Tuesday, January 09, 2007

This Ones For You

Update #24 ~ Today Mark stood from his bed for just a moment. It was very hard and he was exhausted afterwards. That took him by surprise. Mark is used to lifting weights, taking vitamins and eating a healthy low-fat diet. His mind was reeling when this was all done. His morphine has been reduced again, so he is quite coherent now. Dad was there for the days exercise of standing and after lying back down and catching his breath, he had a lot of questions. The answers he received were minimal because in fact, no one really knows at what level Mark will heal and restore his body and life. It will be up to him.

Moma's message to Mark ~ My precious son, I look at you and I can't keep myself from smiling. You have always made me proud, but never have I been more proud than that night when you pulled your broken self out of that deep canal to openly display your respect and love of life. Everyone who knows you and now those who even don't, can feel the amazing strength you exude. A strength that is solely yours and is one of the reasons that you are such a special man. I know that what lies ahead will be like no other road you have traveled down, but you will not be traveling alone, not even for one minute of every hour. My love for you grows continuously and I am grateful for the friendship that we share, the love that runs so deep between us and for the fact that you fought so hard and chose not to give up. You are the bravest man I have ever known, my hero and the son of my heart. Bless you, my love, bless all you do and my mind can't even comprehend what the future holds for you, but I know it will be something that has been reserved for only those of the utmost integrity and honor and strength. May you gain in happiness as much as you have sown in hard work. I love you, dearly

Today Mark got to drink a 1/2 a cup of watered down juice and sip 1 cup of broth. He was delighted. This is a test. A test to see how his stomach and intestines handle the liquid. He still has a tube that travels down his nose, into his throat and stomach to drain most of what enters there, so he will actually be digesting approx 2 tablespoons. We are all sitting on pins and needles for the outcome. The doctors keep telling us to not have any expectations, but how can we not, from such a hero as he.

This smile is for you, your faithfulness is astounding, amazing and will be going down in history, literally *smile* I am keeping faith and hope because of you...all of you! XOXOXOXOXOXOX

Monday, January 08, 2007

Lessons From the Woods ~Update #23

Twenty one days....21 days....3 weeks....When you become a parent and you look at that baby in your arms, you know that one day they will grow and become adults. You also know that you have plenty of life to live in between them being a baby and venturing out on their own. So, you pace yourself knowing that you are making an investment that is going to take years, on average, about 20. Raising that child takes good communication between mom and dad, making memories and traditions that eventually become consistent patterns and life styles. When your child is born, you don't count the days that go by. If you did start out counting those days, in just a matter of time you realized that it was much more realistic to celebrate the years instead of the days.

This is not so when your child is fighting for his life. You do find yourself counting the days, a pessimists becomes disappointed that things haven't progressed enough and the optimist values the long strides, using day one as their measuring stick. But, at some point in the process when the doctor makes it clear that we are not out of the woods and won't even give you a time line because it is so irrelevant in the matter, reality materializes before your eyes and it's clearly time to regroup.

Right about this time...people are really getting physically worn out. Frustration sets in, outside careers soon have to resume again and lets be real....everyone gets grumpy. Whenever we get frustrated or grumpy and act out in that state, we are making the situation about ourselves and there is no time for that. A life hangs in the balance, there is no time to start feeling sorry for yourself, or to begin taking your annoyances out on each other. What is important is that this is about Mark and doing what is best for him and that means high levels of hope, a positive attitude and patience with the poor patient that is in pain, scared and angry. Last night my husband and I had a fight. Something was said, someones feelings got hurt, someone felt unappreciated, someone doesn't like the way things are being done or not other words, we were both thinking about ourselves.

It was time to re-group, communicate and fine tune our focus. It has been 21 days, but to be honest, day one melted into day two and so on and so on until suddenly 3 weeks have past and we, the parents, haven't discussed the long haul. When you don't discuss the long haul, you begin to doubt that you can handle it because at that moment, you are not operating as a team. We are a team and it must stay that way. Of course, we made up. Even as we were getting upset, we knew it was wrong. The outcome was that communication is vital to remaining focused on what is best for Mark.

Dr L explained more in depth regarding Mark's current situation and his near future. Under the wall of muscles that surround your abdomen, is a thick layer of connective tissue. It's job is to hold all the stringy muscle tissue together, therefore creating a decently strong wall to keep your intestines and other organs in their right place. This wall of connective tissue died as a result of Marks injuries. His muscles ripped against the grain, from the right front around to the back. How can stringy torn muscle tissue be sown back together with out that special adhesive layer? The answer is...not very well. For however long Mark's body decides, every time Mark stands or sits up, his muscles will tear, he will bleed internally and need blood like he did last night...3 more pints. As long as he stays laying down, his bowels will never begin to work and could continue to die from a lack of use. So, he must stand and spend his allotted time in 'The Chair' which causes new tears and more bleeding. Almost every day he will have a CT scan to check for "leakers" or "gushers." Leakers slowly heal themselves and Mark can always get a pint of blood to maintain that while it heals. Gushers, on the other hand, means a surgery and right back to square one. He is still not able to drink anything, or eat anything until this long process corrects itself. And THAT is just one issue. Lets remember that his back is broken, as is his foot and he has pneumonia and asthma.

What a walk in the woods.......Mark is scared, he has voiced that he feels his life is over. It is NOT over, but in reality, it will never be the same. Today, he stood up 2 times and sat in the chair for one hour. His morning blood test will determine if there is any new tearing. In time....just like myself, he will learn that their are people out there much worse off than he...and he will feel gratitude and contentment with what he has. But right now.......he is 24, you can only imagine what is going through his young mind.

I am lifted up and smiling today. I laughed and heard myself laughing and then I cried because it felt so good to be laughing...silly girl :)

I am embracing each one of you. Soaking up your words and packing them inside my heart. Each word allows me to take one step step at a time right through the middle of these woods. I love you * I cherish you * I thank you xo D

Saturday, January 06, 2007

Each tear is an unspoken word ::Update#22::

I have no picture right now. I am in a hurry to get to the hospital. I have a choice to not post this, but to be frank, I am too afraid not to. I understand that there is something going on in this blog realm that I don't quite understand or deserve. I am somebody and nobody at the same time.

Mark has not looked good to us for a couple of days, pale and weak, but no nurse or doctor has said anything and even we whisper our feelings, afraid that saying anything too loud would not be a good thing, negative vibes...oh, I don't know.

This morning Marks blood came back with bad numbers. As I am writing this, he is receiving 2 pints of blood. He has some kind of internal bleeding again. He will have a CT scan today, but the doctors are hoping themselves that it will show an unnecessary need for a 4th surgery. Setting him back to square one.

I feel like apologizing for any bad news. I feel like this burden that you all have been so graciously carrying is heavy and that praying the same thing over and over may feel redundant, but I also feel an obligation to be truthful and raw.

In the beginning, I made a promise to you that I would be raw, honest and tell you as much as I can. And you have read me and heard my mothers heart in pain and agony. So in truth, today I am scared. I am disappointed and scared for Mark, for myself, because I feel weak and tired. I am not physically strong and I know this is going to be a long haul. I want him home, I want to just touch him and hold him and sing to him. I want to soothe the fear that I know he is feeling.

So, I cannot tell you how your prayers, meditations and hope has meant all the difference to my sanity, and something else I want to say that hasn't yet been said by me in this blog....

I don't care what your religion is...I don't care how you talk to your Maker, I don't even care if you believe in God or not....none of that matters to me. i just need YOU. I need you doing whatever it is that you do when a crisis befalls your life. I just need YOU, you don't have to tell me what your spiritual beliefs are...none of that matters to me. I feel love for you as you are, as you have felt love for my family as we are. I have a phrase for that.........

deep unconditional love

I am leaving now to stand (in faith...and faith is blind) by my son. I will smile into his thin face and look into his glazed eyes and smile. I will say that I love him and that everything is going to be okay....and the only reason that I can say those words that I'm not sure are true, is because when I get home, I can spend the hours that I have away from him reading your hope and strength that you believe because you are there and I am here....and for some reason, that is how it is supposed to are loved by me.

Update #22 ~ I walked into his room and he is sleeping. It is not a restful sleep, it is filled with twitching, mumbling and jolts that cause him to open his eyes in pain from the sudden muscle spasm. He presses the button that controls his morphine and I smile at him as I wash my hands saying, "Hello, my love." That is my signature greeting that I give to the people of my heart, my children being the ones who have probably heard it the most. From the time they opened their sleepy eyes, coming home from school and later evening events. Now I have said it again, looking at this child of mine who's voice is weak and coarse from the tube that has been down his throat for weeks. I push the chair as close to him as possible, put a clean towel over the side bed rail and lean over it to stare at him in the eyes. I am smiling, but he sees the red rings around my eyes from all the crying I have done this morning. He says nothing, he just frowns and turns his head. I reach out and make him face me saying, "Mothers cry sometimes, but it is nothing to worry about, besides, I cried when you lost your first tooth, remember?" He closed his eyes again and squeezed my hand. No more talking...I wanted to touch him. Screw the gloves this time, I needed to feel his skin and he needed to feel mine. Immediately, I ran cold cloths over his fevered brow. I wiped the sweat from his upper lip, I gently ran the cloth over his eyes and hummed. I rubbed his arms, hands and scratched his head, all the things little Marky remembers moma would do when he was sick. Chap stick, ice chips and stories of his sisters new job, her messages of love to him and he said...good.

"The Game" they call it. The flow meter that is given to all patients to prevent pneumonia. The nurse interrupted our quiet atmosphere asking for another round of blowing and holding. His weak, shaky hand reached out and he trembled his way through it. I felt the heat behind my eyes and I blinked them away and said, "Good job honey!" he looked at me like, "Give me a break mom, this isn't a contest." I shrugged and winked. Again the eyes would close and in seconds the twitching would start all over.

A nurse from the ICCU quietly walked in and I recognized her. She was there to check on him. I was so touched that this time I could not stop the tears. She reached out to hug me and I gulped a sob. With a shaky voice she said, "He's a fighter, we are still talking about him in ccu. You need to remember that he crawled all that way for help, despite all of his injuries, this is a piece of cake." I shook my head yes and grabbed a Kleenex. She took a quick peek at the beeps and blips, nodded an okay and said, "Gotta run."

Fear is an interesting thing. One small person exhibiting one kind action makes all the difference in the world. Peace, she left me with peace and the knowledge that the ccu is still talking about Mark, that they are randomly checking on him in their spare moments. They all got to be his nurse for at least one shift while he was there, they all knew his "story" he can be charming, but not in here with morphine running through him, so he made an impression on them...or did he? Is yet another realm of persons being drawn to him?

When Mark cries out in delirium, there is a definite repeating subject matter. He keeps speaking of 'the children' One time the babies were crying and he made me go look to make sure they were okay. There are no babies anywhere near him, or is not allowed. Another time they were singing to him and they left and he wanted them to come back. He asked his dad to turn on the lights, it was too dark for them and they needed to see. They have come and had 'show and tell' he has seen them with balloons, this intrigues me.

His blood pressure is low, this is expected with the blood loss, and there is no decision on another surgery yet. Another wait and see answer from the doctor. When it was time for me to go, I asked for a moment alone with him. I leaned in real close, kissed his forehead and said, "I'm so sorry honey" that broke the damn and he began to cry. "I am so miserable mom, I hate it here, I'm in so much pain and my body isn't healing" I put my hands on both sides of his face and said, "Look at me...YOU are doing great! We are here, we are a team, and together we will get through this." I wiped his tears and my own and I made him see the determination in my eyes. I wouldn't let go until his eyes told mine that he understood. I stood tall and said, "I'll see you tomorrow, maybe I can wash your hair (that was for you Denise ;)"

As soon as I leave his room, I never feel like talking...I let the serenity linger as long as it can. But as soon as I reach the car, that fake sense of privacy that your car gives you...I cry...I cry...I cry. I am not crying because I am loosing hope, I cry because I am his mother, and his pains are mine, his weakness is mine, his tears are mine, but his anger is not...that will be a road traveled later on, with a bible in my hand and my own words of experience as my guide.

A beautiful tribute was posted here ~ Thank you all ~thank you all

To Trust or Not To Trust

This accident hit home...literally... and you find yourself questioning all that you believe in. I landed on my knees because I fell there. It was not my first reaction, as I thought it would be. I've believed in God my entire life. I've heard messages and sermons that stirred my faith. I've had spiritual experiences that made me feel like I was one more level away from receiving God's home phone number. You and I?...we could talk for hours about His character, mercy and grace.

But when your child is lying seriously wounded on the side of the road, when your eyes witness their injuries and pain, when your ears can hear their screams and moans, when every fiber in your being wants to do something and the emergency medical team tells you to 'move away' along with all the other on lookers, you want to scream, "He's My Son!"

I buried my face into a stranger, I turned around and whomever was there got my fists clutching the front of their shirt and my hot sobbing breath into their chest.

In that moment Mother's...that child is NO LONGER yours, you feel it, you know it, it is real and you are not important. In that are insignificant, no more special than anyone else standing around. You can't touch your child, you can't bring them comfort, all you are giving them, in that the sound of their Mother's voice, the voice that they know so well, is loudly sobbing their name. And somewhere in between my sobs I said another name too, "God, oh my God!" and I hope with all my being, that Mark heard me say the name of God along with his.

Sitting in a lowly lit surgery waiting room is hell. It is hell because here, in the uncomfortable silence, your mind begins to try to understand and make some kind of sense to all of this and there is no sense to be found. Your physical body starts to show signs of shock. You begin to shiver from deep within, the air feels cold and thick. Breathing becomes difficult and all activity seems to be in slow motion. People around you say things to you and you shake your head yes, like you understand them, but you don't. You run scenarios in your head...(if I had only invited him for dinner, if he had drove home with someone else, if I could just talk to him now.....)

Eventually, between the shock and the have 'the conversation' with God. "Why? Why him? What did he do? What am I supposed to do? Where were You God! Why didn't You protect him? Where are YOU in all of this NOW?" and you fight with Him. You feel yourself blame Him and at the same second that you are placing blame on God, He is asking you to trust trust Him? trust Him...and He requires no answer.

Why doesn't He require an answer? Because He knows you, that right at that moment you are scared and angry, feeling helpless and lost. How can you blame Him and also ask for His help at the same time? I couldn't have any conversations with Him, at that moment.

I felt very human, right then, I was all mother. I wasn't a wife or a daughter, I wasn't a sister or a friend...I was all mother, every part of me. I closed my eyes and Marks life flashed itself through my mind. I saw the newborn, the 2 year old with cake all over his face and hands, I saw him riding his bike, playing basket ball and opening presents. I saw him driving his first car, graduate from high school and the look on his face just 6 hours ago when he said good bye to me and told me that he loved me. I said it too. In that moment, I thought that those could have been our last words to each other.

No, God did not require an answer from me then, He is a gentlemen and He let me be a mother. He let me see and feel my son's life flowing through me and He told me then, when I was ready to hear it, He told me to trust...

and I did.