Sunday, August 21, 2011

Tuesday, December 21, 2010

Christmas in Heaven

I see the countless Christmas trees,
Around the world below.
With tiny lights, like Heaven's stars,
Reflecting on the snow.
The sight is so spectacular,
Please wipe away the tear.
For I am spending Christmas with
Jesus Christ this year.

I heard the many Christmas songs,
That people hold so dear.
But the sounds of music can't compare,
With the Christmas choir up here.
I have no words to tell you,
The joy their voices bring.
For it is beyond description,
To hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.
So be happy for me, dear ones,
You know I hold you dear.
And be glad I'm spending Christmas
With Jesus Christ this year.

I sent you each a memory,
Of my undying love.
After all, love is a gift more precious,
Than pure gold.
It was always most important,
In the stories Jesus told.
Please love and keep each other,
As my Father said to do.

For I can't count the blessings or love,
He has for each of you.
So have a Merry Christmas and
Wipe away the tear.
Remember, I am spending Christmas
with Jesus Christ this year.
Love,

Your loved one in Heaven

Wednesday, October 13, 2010

I'm Back With Some More Notes.....

Hi everyone.......Yes, I know.....its been a while since I was here...but here I am.

Before I start, I just want to say that my great grandmother is here up in heaven with me now and we are so happy here together. I saw her coming up to join me and our reunion was so joyful! Thank you Grammie for watching over her and loving her while she was on her way here. Love u!

Okay...here are some of the notes:

(5/18/99) My nurse wrote a note that said: "Great day at school. Jared brought home a picture for Mom & Dad. Had a bit of a time getting back in the house as driveway on side and cars parked-we have to think of a better way to approach back door. Jared had no problem all day, he worked hard and he was very sociable (he's a FLIRT!) Bus ride was the best-he laughs at every bump!" (Yes this sounds about right, if there's anything that was sooooo normal about me, it was my flirting style because I knew the girls loved my smile!)

(5/25/99) My Primary Nurse wrote a note that said: "Grrreat day at school-on ball, back and abdomen for 45 minutes. He went into a dark room and we painted balloons with roller yellow and green paints. Jared cooperated at circle time on mat with all 3 students' heads together touching and exploring new friends with hands and big smiles." (Whoa, were we really exploring with our hands......how come I don't remember that?)

(7/3/00) Mommy wrote a note that said: "There is an annual 4th of July parade in the morning (if it's not raining) at 9 am. If you could, please get Jared up and ready so we can take him outside for it. Thanks, Mom and Dad." (I remember watching the parades....sometimes it was a bit too much for me because I was uncomfortable and I just wanted to lie down but for the most part, I enjoyed watching them with my mother by my side each time.)

Wow....there are a LOT more notes so I'm gonna go into the next year and see what might be interesting.....hold on................................

(2/19/01) Mommy wrote a note that said: "Note to everyone: Jared doesn't like certain movies that we pick for him to watch-because they are OUR choices of movies-not HIS. So, in that case, if you get 3 or 4 movies out for him and he turns his head away or doesn't pick one-please don't make him watch one of your choices, give him at least another 3 or 4 more to choose from. Since there are MANY that he likes, he's bound to pick at least one of 8 choices....Thank you all, Mom" (Yes Mom...you knew that movies were my thing and you always made sure I got what I wanted!)

(8/24/01) Mommy wrote a note that said: "Jared went to DuPont today for a Pulmonology appointment. We took him in the new van. (That ambulance transporting was difficult to set up.)Jared enjoyed himself all the way up. Although it did get real hot on the way back home, so hopefully we get the air fixed in the van this week, so we can take him to the Baltimore Harbor soon." (LOVED the new RIDE!!)

OK....it looks like some of the books are missing so I will stop right now... but come back for a brand new chapter of my life.....Mommy wrote a little chapter titled "When We Became Parents.....We Became Nurses".....so that's what my next post will be about....c ya's soon!

Wednesday, September 15, 2010

I Have Wonderful News!........

I'm not here with my story for today....instead I want to tell you something that I was waiting for since the day I left Earth......MOMMY IS MOVING ON! and she can now see my death as a part of HER life that was SUPPOSED to happen. You see, all it took was this book I brought to her attention....actually it started with the first book I showed her called 90 Minutes in Heaven written by Don Piper. This book helped her a little when she first lost me a year ago. The one that really blew her mind was The Boy Who Came back from Heaven, written by Kevin and Alex Malarkey. She is telling me Thank you right now and she is also saying that this book was written for people like her and those who have trouble really believing that there is a GOD and he controls all situations. She also is saying that for those of you who are reading my blog who may be non believers, read this book. It's just a book. Then ask yourself this question: If this was YOUR CHILD you almost lost in a car accident....your child who doctors say should have died in this car wreck (the boy was internally beheaded)but came out of a coma 2 months later to tell his story that he was in heaven and what he saw and heard while he spent time there....would you then BELIEVE? She says to just read this book I gave her and see what you get from it. She's still getting chills as she writes this...she says the CHILLS are actually my presence there beside her and that's what she believes they mean....a deceased person making their presence here on Earth.
Like I was saying I am so happy that Mommy was lifted even higher than before with my gift of this book that now instead of me ALWAYS being right there beside her and making her feel my existence, I can now MOVE ON until we meet again. I AM SO HAPPY THAT MOMMY IS HAPPY AGAIN....and she is also making plans to go to Dupont Hospital in Delaware for the Day of Remembrance for those of us who have passed on that were patients of this hospital. Last year she couldn't do this because she just lost me a month before the annual event. This year she wants to make her presence known because she wants to let everyone know what a blessing she says I was in her life. She says to tell all of you she couldn't be any HIGHER in life than what she is right this very moment. You should see her, she's so HAPPY. She said she realizes she just lost my "body" but she still has me in "spirit" which is the most joy to her of my existence I gave her for my 14 years of LIFE here on Earth. My job is done....I'm heading back to HEAVEN now.....see you all again someday here in this most PERFECT place!

Thursday, September 2, 2010

Its Been A Year......

Hi everyone.....Mommy said she knows she hasn't been keeping up with my blog, but she's been taking my death rough the past few weeks.
A year ago today around this time was the end of my lifeline here on Earth. I remember when Mommy came downstairs with my baby brother Aidan and my other brother and best friend, Logan. I looked at her and smiled and that was the last time I saw her face. A little while later, my trach dislodged from my stoma and noone knew it. Mommy thinks the trach fell under my shirt and the machine that was giving me my breaths sensed that the trach was still in me but it was not, it was giving the breaths to my shirt and so the machine's alarms didn't go off. Mommy says that if the nurse didnt put me in my chair and left me in my bed, I would still be alive today, because then it couldn't have happened without knowing it. The trach must have dislodged when the nurse lifted me and my trachties must have been loose, I also had a large stoma (which was the hole in my neck where the trach was). These 2 things were why my trach could dislodge so easily.....loose ties, large stoma, new nurse are the reason I'm not here on Earth any more...I'm now in a new place called Heaven... now taking care of my mommy, daddy, brothers and each one of you who took care of me. I'm no longer suffering as I suffered on Earth. I'm actually having a good time up here running around and laughing. I will see my Mommy again someday and I know that I will and I'm as happy as I can be because I know that. I wish she could see what I can do now. It won't be long because there is no TIME up here....It feels to me like I just came HOME. Mommy still feels like I just left... and I did. She always asks me why my death has to hurt so bad....I tell her that its just the love she has for me and it will always be with her until we meet again. I told her to not give up and keep holding on to me because I'm still with her....but in a very different way. I love u Mommy and Daddy, Logan and Aidan and all my brothers and sisters of the world, I will see you all again someday.......until then......goodbye from Heaven......JARED................

Thursday, July 15, 2010

Some more Communication Book Notes.....

(10/7/97) A new nurse working with me wrote this: "Thank you for the welcome note Pat-it felt great. (Primary nurse) Mom & Dad were very welcoming also. I'm usually a little apprehensive the first night on a new job-I don't think it has ever been so pleasant. I think I'll fit right in "Jared's team". (My note: These kinds of things is what makes the nurses taking care of me in our home so worthwhile. This is one of the things I loved about life.....genuine KINDNESS!)


(1/14/98) Mommy wrote a note that said: "Jared loves his new toy he got for Christmas. It's the TV Teddy. If you play a video, play TV Teddy's videos once in a while. TV Teddy interacts with the video. Jared likes to watch Teddy and the video....huge smile on this boy's face." (My note: I remember Mr. Teddy...he really made me laugh...he was another good friend!)


(6/6/98) Daddy wrote a note that said: "Hi. It's Dad, this is my bimonthly note. Jared and I had a great time alone tonight. Jared got the slow tour of the house tonight instead of hanging out in the dining (Jared's) room. First, we checked out his other room (upstairs). He loved it. Then to the bathroom and back room. Then he got his first waterbed experience. He realized he could make the bed move by kicking-he didn't stop. (Sorry about the sloppy writing, but frankly I don't care.) Dad" (My note: Oh...just thinking of me and my dad together gives me so much JOY inside....that's what it was always like for me with my dad around.....HAPPY, HAPPY, JOY, JOY...Daddy showed me that also.....REN & STIMPY!)


(7/2/98) Mommy wrote a note that said: "Be careful putting Jared in his new wheelchair. I almost dropped him tonight when I stuck him in it." (My note: MOMMY"S CRYING CUZ SHE"S THINKING.......Awwwww Mommy....its OK.....you always did try your best with me....I know right now that I'm not physically with you and I see that you beat yourself up for all the times you tell yourself....IF ONLY I TRIED A LITTLE HARDER......I hear you say that all the time now....YOU DID YOUR VERY BEST AND I LOVE YOU SO MUCH FOR THAT. I WILL ALWAYS BELIEVE IN YOU....YOU WERE AND ARE MY MOM WHO BELIEVED IN ME TOO....IT WORKS BOTH WAYS. I LOVE YOU...STOP CRYING OVER ME MOMMY....I'M REALLY OK....YOU SHOULD SEE IT.....IT'S BEAUTIFUL UP HERE!)


(9/11/98) Daddy wrote a note that said: "Hi. Dad here. Mom's out for the the night but will be back before 3 tomorrow. Jared had a good night. He spent about an hour and a half outside and then he relaxed with me for the rest of the night. See ya. Eric." (My note: LOVE LOVE LOVE Daddy and I time!)


(1/10/99) Mommy wrote a note that said: "Jared out in recliner until about 8pm. Earlier, Jared pulled his tubing off of himself and threw it on the floor. Could it be that he doesn't want it anymore?! Little Stinker!" (My note: Yes Mommy....and No Mommy...I didn't want it and I did...but I enjoyed PLAYING THESE GAMES with you!)


(2/3/99) Mommy wrote a note that said: "Jared has been disconnecting himself a lot lately. He pulls the tubing off and waves it around like it's nothing---and laughs about it! Keep an eye on him now, more than usual, because he will pull a fast one!" (My note: HAH...Gotta love it!)


(4/20/99) Mommy wrote a note that said: "Jared out on recliner until 6:30pm, and then he sat in Daddy's lap on recliner and then he was on the floor with me sitting between my legs with very nice head control! Also, Jared will be starting school on Tuesday, May 11th. He will go 3 days a week (Tuesday, Thursday and Friday's) from 9am-2:30pm. We are trying a full day with him for at least a month just to see how he tolerates it. If it's not for him, we will take it down to half a day (from 9-11:30). He will have Music Therapy on Thursdays at school. Eric and I will be going with him on his first day. Thanks Mom & Dad." (My note: What a time that was...a NEW chapter in my life....SCHOOL...and I was so glad that Mommy and Daddy came with me for my first school experience!)


(5/11/99) Mommy wrote a note that said: "Jared tolerated his first day of school very well. However, the last hour of the day, he started getting fussy. He also didn't like the "pudding painting" that he did while there. He didn't like putting his hands in the pudding and he definitely didn't like rubbing his hands in it. Once he gets used it (stuff like that), it may not be so bad for him. He also sat on the bean bag chair for awhile and it was relaxing for him-so he was kind of lazy in it. We put him in his wheelchair and he went outside the school and we put him in the wheelchair swing. After that, he started getting tired. Overall, good day, but somewhat long for him." (My note: I still loved trying new things.)


OK...there are still more notes I want to tell you about...I know there are so many of them.....but these are the days of my life...they need to go somewhere so I think this is the best place for them right now.....come back soon!


Sunday, July 4, 2010

Communication Book Notes written by my Nurses.....

(7/19/96) Supervisor that came out to the house wrote: "Jared's weight was 16 lbs. Mom had no concerns. Mom told me how good of a job we're all doing. Gerard is as cute as ever!" (My note: My name is J-A-R-E-D....not G-E-R-A-R-D......I don't like that name, but it's okay, you all were just getting to know me...so thank you anyway.)

(7/20/96) My primary nurse Pat wrote a note saying: "How about this "classy little guy" listening to classic station for sleep. (My note: Thank you Pat for loving me so much....I will always love you....you were my very first homecare nurse and you did a GREAT job taking care of me....I took that to HEAVEN and I'm holding you here with me now....Love you so much.)

(8/1/96) Supervisor Holly wrote: "Jared has been home for 1 month! He looks great and is really growing. Mom is very happy with all the nursing care. Thank you all." (My note is the same...Thank you all.)

(8/23/96) (I just came home from my first admission to DuPont) Supervisor wrote: "Informed Mom & Dad that there is no nursing coverage available until Monday morning. Mom was aware of this when Holly spoke to her yesterday prior to discharge. Mom & Dad feel comfortable with caring for Jared and child is at no harm or risk without nursing coverage." (My note: It's okay if you all leave me alone with my mom and dad...THEY know just what to do and when I need it.)

(9/30/96) Supervisor wrote: "Jared is a lot of care-anything the nurses do helps the nurses on all shifts. Please help to make it easier for the day nurse so she can spend more time with Jared and less time on stocking supplies, cleaning and maintenance." (My note: I know some of those night nurses were becoming a little lazy as Mommy told me once...especially one specific nurse as Mommy also said.)

(NO DATE) Primary nurse Pat wrote a note to a new nurse orienting to my case: "Welcome! Jared's mom will be home on Saturday-but we let her sleep in the morning as she does a full shift 3-11 besides her regular job. Mom is very good about any questions and doesn't mind if you ask. She's a great help if you get stuck. Bedroom upstairs-1st door on the left. Bathroom straight ahead. Neither she nor Dad mind helping to get Jared into his swing or stroller. Both parents are very knowlegable and always ready to help. Have a good day and welcome to the group." (My note: My nurse Pat always made everyone who came into our home so welcome like this and it always made me feel so good to know a person like her. Thanks again Pat.)

(NO DATE) A new nurse (Diana) working with me wrote: "Dear Karen and Eric, thank you for the honor of taking care of your little cherub. We had fun today. I read 3 stories to Jared that I brought with me and he watched the book with interest." (My note: Yes....I remember how much FUN I had with you then....Thanks for reading to me Diana.)

(4/16/97) Nurse wrote a note that said: "Grammie brouught over a small piano for Jared. He loves to play with it. He bangs keys with another toy." (My note: I loved the toys that my Grammie always brought over for me when she came to visit...Thank you Grammie..I love you.)

(4/21/97) Nurse wrote a note that said: "Jared likes his new snug seat. He also likes to sit in his stroller by the front door to look outside and the back door also." (My note: Although it was hard for me to do new things...my family and nurses always found something NEW for me to do anyway....thanks everyone.)

(5/2/97) Nurse wrote a note that said: "Jared is nice and healthy with beautiful cheeks and thighs. Keep up the good work everybody!" (My note: What a team you all were with me...No wonder I lived a good life!)

(6/25/97) Nurse wrote a note that said: "Jared tolerates being in his chair for up to 1 hour now. You all should be getting him out of bed and in his chair or swing daily. If you use bean bag chair, use the stroller ventilator so he's able to have change of scenery. He likes to sit at front door and he also loves to watch his Toy Story and other videos in his swing." (My note: Toy Story was definitely one of my favorite videos to watch. Thanks for getting it for me Mom & Dad.)

(6/27/97) Nurse wrote a note that said: "Jared was very happy today, kicking and dancing around in his crib and chair. He is also giving high 5's and blowing kisses, as well as throwing his toys out of the crib. When OT (Occupational Therapy) came @ 2:15, Jared ACTIVELY particpated with the therapist." (My note: Yes, I was becoming (as Mommy called me then) a "little stinker". Mommy said that's when I got an ATTITUDE!)

(9/6/97) Nurse wrote a note that said: "Jared was out of bed in the bean bag chair watching Toy Story and playing with nurse, kicking his feet on floor." (My note: I just realized that I did have a little MUSCLE anyway!)

Well...there's a few more notes that I want to tell you all about...Nurses and Mom & Dad's....so come back soon for more of them. Thank you for visiting me today, everyone.