...I lost my poor meatball when somebody sneezed...

God is really funny.  Here I am waiting for a miraculous move of God to overtake me, speak to me through a prophet or preacher, have an angel or two appear or God Himself write on my wall, before my spirit is lifted.    All it took was a friend from church giving my daughters 2 bags of children's books.  First thing I thought *honestly*: OH CRAP!  More stuff to spread around the house, to pick up,  I have to find room for these things now, ugh!  So we get home and sure enough, they were spread out everywhere!  With no room to store them, they are still on the floor.  This project will have to wait until tomorrow.  As I slowly step over the books, my youngest daughter requests that I read her one.  It wasn't a regular story, it was a bedtime musical Nemo book where you push the button and read the song, so we sang and sang, it got fun since we recognized the songs from Barney and had different versions to sing.  Now my 9 year old comes along with a "Lady and the Tramp" book.  It was long, she wanted me to read it to her.  So hesitating, I did.  As I read it, memories flooded me of the 100 times I watched the movie, so now I'm speaking with voices, did the slobbering bulldog, and sang with an "italian" accent (I say "italian" loosely) ...and they called it bella noche!!!  I also sang out a few verses of the siamese cats...my daughter was joyfully shocked, she just couldn't believe mom was laughing, and singing and acting so silly.  I have to admit, these occasions seem to be more and more rare and as much as I try to shelter my own struggles from my children, they see and feel mom in distress.

Long story short, we were acting like Dora the explorer in another book and ended this lovely evening with the song:

On top of spagetti, all covered with cheese
I lost my poor meatball when somebody sneezed
It rolled off the table and onto the floor
I lost my poor meatball, when it rolled out the door... (something like that).

No devotions, memory verses or anything spiritual.  Yet I felt a small balm of healing over my heart as I sang, laughed and acted just plain stupid with my daughters.  Not to mention, I realized my neighbors were right outside the window as I was singing a horrible version of "home, home on the range" in a horrible southern accent.  I'm not good with accents, but it sure is fun to try.

God's thoughts are definitely higher then our thoughts!

One bad thing...I can't get the meatball song out of my head.
Now to go thank my friend.

ONE STEP AWAY...

I was leaving walmart the other day and was met by a woman who was begging for money.  Her request was because all she wanted was something to eat.  By looking at her I could tell she consumed everything but food.  In that split second that I was thinking that I wasn't about to give her money to support whatever addiction she had, a scary yet true thought crossed my mind.  In my pain, anger, frustration and confusion, I felt one step away from being her.  Where did this woman come from?  What had she lost?  Who had she lost?  What pain was she trying to cure?  What was she running away from?  What thoughts was she trying to erase?  What emotions was she trying to drown?

How many times have I wanted to run away?  MANY MANY TIMES!  How many times did I feel desperate to change my life?  MANY MANY TIMES!  How many times do I want to forget?  TOO MANY TIMES!

I know it is God who is keeping me.  Along with a strong husband and 3 children that need me and that I love deeply...

But I realized...I am ONE STEP AWAY...

This woman was dealing with something the best way she knew how and I couldn't punish her for not being able to cope, so I gave her money without judgement, because many times I feel ONE STEP AWAY...

And our life changed-The ER Visit

June 2, 2011

ARRIVING AT RADY CHILDREN’S EMERGENCY ROOM

Upon arrival I called Jorge to let him know we had gotten there.  I rode in ambulance in passenger side, while Jorgie was in back with 2 emts.  When we entered ER, nurse begins to read EMT report, reading back that Jorgie was pushed by another child.  First time I heard that.  I told her I didn’t know, EMT states he was told that is what happened.

We are taken into a room, numerous nurses and doctors walk in at different times to examine Jorgie, focusing mainly on his left arm and shoulder.  When they would ask me if his behavior was normal I would answer no, that his calm and sleepy behavior concern me.  One of the main doctors walked in and asked me again if he was acting normal, after I insisted that he wasn’t acting normal, she ordered xrays for his left shoulder and a head catscan.  This was approx. 30 min after arriving in ER.  He was taken to catscan within 10 min of order placed by doctor. 

After catscan, we were escorted back to ER room, on our way to room I heard on intercom a request for trauma team in trauma room.  Once back in room with nurse, another nurse rushes in and tells current nurse to take Jorgie to trauma room (1 or 2, can’t remember).  I grew concerned because I heard the intercom message minutes before.  There were many people in the trauma room waiting for Jorgie, I was encouraged to wait in corner while they examined Jorgie.  I heard words “head injury” “brain bleed”, “surgery” but no one explained anything to me until a few minutes later.  The doctor told me they found a bleed and introduced me to one of the neuro-surgeons, who proceeded to explain to me the injury, he showed me scan.  The bleed was pushing brain upward, it was a significant left epidural bleed.  Doctor stated and I quote “if we don’t do this surgery, he could die”.  After speaking with surgeon, he joined team and Jorgie to prep him for surgery.  After talking to surgeon I called a friend to babysit my girls so my husband to get to hospital, I called my husband crying, told him what was happening and to get to hospital immediately because Jorgie was going into surgery.  After call, I was introduced to a social worker who sat me down and gave me a cup of water and tried to comfort me while I cried.  Within 10-15 minutes, Jorgie was being wheeled to surgery,  I was escorted by nurse to a conference room where we would sign anesthesia and surgery consent form, as well as, meet with other surgeon and anesthesiologist.  My husband arrives while I am waiting for doctors.  We speak to anesthesiologist and surgeon.  Jorgie’s surgery begins about 45 min after arriving in ER.  The surgery lasted an hour. 

As we waited in lobby, husband was making calls to family outside, I sat in lobby.  School principal Dawn Minutelli shows up at hospital with concern in voice.  As I explained what happened, there was silence for a few minutes.  She than asks the following question “So does Jorgie fall often at home?”  Of course, I said no because he doesn’t.  After surgery, my husband and I were paged by surgeons, we were taken back to same conference room; surgeon walks in to inform us that surgery was successful they got the clot all out.  I asked him if that clot could have been a pre-existing condition that we just now noticed, he said “no”, this bleed was caused by a severe impact such as a very hard fall.  We were told to wait in lobby a little longer while the team finished up with Jorgie and he would be taken to PICU.  We went to lobby, told principal he was out and stable, she stayed for about an hour, left after Jorgie was out of surgery.  Left me her card and cell phone to keep her updated. 

Jorgie was than taken to PICU, he was intubated.  We weren’t able to see him for about 2 hours after surgery.

Can't afford to take anything for granted

Notes of how our family has been affected by my son's brain injury in June 2011.

How Jorgie and our family has been affected by Jorgie's inability to eat. 

One of the only things that Jorgie had in common with us and others was the fact that he could sit at a table and eat.  He loved the potlucks at church and the fact that he ate so well was a conversation starter and an ice-breaker for those who had never really interacted with Jorgie.  When we would pass by his favorite restaurants, he would yell out from his car seat "HAMBRE!" which means hungry, because he wanted us to go eat.  Dinner time was a very important part of our day as we would sit down together at the table and all of us enjoy the meal.  Jorgie had this strange ability to separate a certain food out of a mouthful and spit it out without spitting anything else out, if he didn't like that certain food.  For example, he wasn't a big vegetable fan, and I would make rice and mix in pieces of carrots or broccoli; we would feed him a spoonful and he would be able to separate (in his mouth) the rice from the vegetable and spit out the vegetables.  He also had a huge apetite, sometimes enthusiastically asking for seconds and even thirds.  We would go to restaurants at least once a week, after a doctors appointment or after church.  Jorgie and I also had our times when I would take him to breakfast, just him and I, he really enjoyed these times.

Now that Jorgie has the g-tube, we have been to a restaurant 3 maybe 4 times in the past year, usually because we can't get home to eat for whatever reason.   We don't plan family dinners in a restaurant on purpose because we refuse to eat and Jorgie feeling excluded.  When I can't cook we will get take-out and bring it home, usually putting Jorgie in his room to listen to music or watch his favorite show. 

Bottomline: mealtime is not the same!

The one thing that connected him and allowed him to feel included and the same as every one else, was taken away from him.

When he was 1-2 years old he had problems gaining weight.  The doctors presented the possibilities of inserting a g-tube to help him gain weight; after attending a meeting with nurses and dietitians and with some advice from therapists, I began cooking hi fat and hi calorie meals, that way every spoonful counted for him.  The pediatrician told me that if he didn't gain 2 lbs by a certain date, the tube would be inputed.  Well he did gain that weight and more, a big relief and victory for our family.  As he got older his eating and weight improved.  He was always underweight on the charts, but very healthy and never diagnosed with failure to thrive or malnourishment, the doctor wanted to keep him slim so we would be able to carry him.  His weight and health was always monitored and every one was impressed by his eating abilities.

The deep inner scream that no one can hear

Why, why, why?!?!?!?

I am so done

Done of watching doctors and nurses torture my son (I know it will make him better, but still, I'm done and I know he has to be done too)

Done of Mcdonalds meals or my other option?  expensive, not-so-good cafeteria food.  Or I can walk to ronald mcdonald house for free food, but the pain of remembering our stay there last year, I don't even taste the food.  I hate this place and yet, looks like we are moving back in.  This feels like a nightmare.  I am done!

Done of leaving my daughters and watching them being affected by not having their mom around, my 9 year old is so sweet and understanding, but I can hear the pain in her voice.  My 4 year old acting out in anger and tantrums, too young to process, all she knows is that she misses mommy.

My son, lying in this bed, waiting to get better.  He gets better, he gets worse, he gets better, he gets worse.  He finally goes to sleep and some specialist has to wake him up.  LEAVE HIM ALONE!

It is so cold in this room and all I do is find myself staring at the 10 inch tv in the corner of the wall or eating something I'm not supposed to.

I just want the chance to be a little normal, maybe shop a little, have friends, exercise, eat right,  maybe just be a normal woman, just a little, that's all I ask.

I feel so frustrated and alone.  So abnormal...I stand out when I walk into a room of people I know, no one knows what to say, so some act as if nothing has happened, some try to encourage, some try to share faith, some just ignore me, all because they don't know how to deal with people like us.

I didn't wake up one morning and tell God, I want this kind of life, a life that is spent in hospitals and doctor's offices, a life spent trying to keep our boy alive, a life spent trying to stretch myself thin enough to not neglect any of my children,  a life spent distanced from people, sleepless nights, I didn't ask for this and sometimes I feel like we are treated like that, like we planned this, we asked for this, we wanted this.  We were once like everyone else, but then all of this happens, we didn't get a say at all.

I have my Bible here, and I read it, but the words just kind of bounce off the page to my eyes and back to page, I am walking and thinking and feeling in a daze.

Don't ask me how I'm doing, that's a stupid question and you probably don't want the honest answer anyways.  Don't ask me how I do it...that's another stupid question.  People have drawn away, don't blame them, first it was family, now it's friends, I don't blame them...maybe I would have done the same if I were in their shoes.  I wonder if they think how would they feel if they were in our shoes.  I don't blame them.

How can you help?  Don't ask me because I will say no, just do it!  take initiative, that's what I would do.   How about some healthy meals?  How about coming to sit with our boy, so I can spend time with my girls without the thought that my boy is alone and upset, how about just being here without having much to say, their isn't a prayer that hasn't been prayed or words that haven't been said, heard it all.  We don't need advice and even encouragement seems cheap nowadays.

I just can't stand it anymore! But God is still in control, that's my hope, my only hope.

God just help me get through this night with enough strength to get through another day here at the hospital.

Where there is darkness, there is light...waiting to see the light.

you know what I don't understand?

That the same people who scold me for being too strong and self-sufficient, the same people that say that I'm going to get sick if I don't ask for help, the same people that make my independence and determination sound evil; are the same people that fall apart when I need them the most.  These same people can't handle pressure or stress; therefore, leaving me alone to handle the situation.  What am I suppossed to do with this?  If every one fell apart and caved in to the pressure including myself, no one would be up half the night changing my son's diapers, or giving him his medications or dealing with is 102 fevers, or sitting in doctor's office's for what seems to be endless hours.  Someone has to be strong and calm, right?  Sometimes i think it is these thoughts and confusion that put me more into a depressive mood than the circumstances themselves.  Really.

By the way, no one said i take credit for this "strength".  I give all glory to God who has given me the strength to wake up 3-4 times a night for the last 9 days straight and can still fully function during the day, taking care of my sick son and little girls, the house, the laundry, meals  (ok, well drive-thrus have been a part of life lately I admit).  I'm not perfect.  So here is what I say to those people...if you can't handle it, if it's too stressful and sad for you and you need to distance yourself...I understand.  But don't accuse me or make me feel bad because I'm "strong" and get things done.  Do I have choice?  Because I sure don't see it at this point.  If God says He is who He is and His Word says what It says, than I should get up or in some cases stay up in the morning, smile, keep going...trusting that there is new strength for every step that I take, every mountain i have to climb, every hour that i must stay awake, every appointment I must rush to, every crisis I must tend to. 

is it too much to ask?

To be understood?  Not to be felt sorry for or pitied upon...just to be UNDERSTOOD.  A few hours ago I get a surprise call from one of my sister-in-laws who never calls.  She called to ask why we haven't been by to see our newborn neice and when do we plan on going.  They live 2.5 hours away.  Really?  This call reminded me of my conversation with my brother who lives in New York, "sis, when can you guys come down?  Or we can meet in Texas?"  REALLY???  Here's my answer to the both of you!  I will be right over, SLAP THE CRAP OUT OF YOU and come right back.  How's that?  Sorry if I appear a bit bitter...but come on!  Does any one realize what we are dealing with here?  At this very moment, I am pulling an all-nighter, taking care of my sick son, 13 years old with Cerebral Palsy, in diapers.... who has  UNCONTROLLABLE DIARRHEA, not only that but he keeps choking on his own saliva... Why can't they come and see us?  I just want them to understand, how hard it is to travel with a 13 year old, g-tube fed child in diapers.  How hard it is to find a clean, comfortable place to change him, for him to sleep.  Not to mention, bringing his 2 sisters along.  We have to count cans of milk, bags, tubing, gauzes, medicines, syringes...water bottles, diapers, wipes, lots of clothes.  IT IS ALOT OF WORK!  And the bigger he gets, the more work it is.  Am I asking too much when I ask for a little understanding and maybe a break from travel...everyone is so welcome to come here.