Jackson's Heart
jacksonsheart
.:::..:...... .::::
Jessica [userpic]
Jackson John Muhowski 9/12/06-6/20/07

Hello everyone,
I really don't know how to start this email.  You can tell by the subject what it will be about. 
 
We are sad and depressed.  We never imagined this and we have never experienced so much pain.  We try to laugh and smile, but it seems shortlived because you go right back to thinking about Jackson.
 
I will finish his story with you right now. 
 
We went down Monday having an idea that it would be sometime this week that he would pass.  His numbers have been steadily declining plus he had stopped urinating.  His doctor asked to talk with us again and we went with her.  The concern with Jackson this time was that he was declining but there was no way to pinpoint exactly when he would go.  She knew we wanted to be there.  There wasn't a guarantee that we would be there with him if he went into cardiac arrest and also there most likely would of been a team of doctors around.  She gave us the choice to "control" the situation.  We could leave things as they were, we could cut back on his heart meds or we could remove the breathing tube.
 
Sara and I went for supper, talked and then went back to the hospital.  We talked a bit more with the doctor and told her we decided to have the breathing tube removed.  By doing this, we would be able to hold him without anything on him and also be surrounded by our family.  Not an easy decision at all, but the right one.  We decided Wednesday June 20th at 11:00 a.m. would be the time.
 
Staying by Candee the last couple days gave us the chance to spend all the time we wanted with him.  We were able to meet nurses that took care of Jackson who we only knew from talking to them on the phone.
 
Candee went to see Jackson before we arrived there this morning.  We went to the hospital right around shift change at 7:30.  All the nurses and doctors from that shift were stopping in to say there goodbyes to Jackson.  He made lots of friends there.  We were also very happy to see his Nurse Anne there.  She is one of the sweetest people you will ever meet.  She was actually with Jackson more than we were so it meant alot for us that she was there.
 
Sara, Molly and I were able to spend all morning alone with him.  There was something that happened while we were there that relieved any doubt  we may of had.  Anne was changing a dressing on his belly.  It was very hard on Jackson.  He was so filled up with fluid that with every touch he would tense up in pain.  His blood pressure would shoot up.  I was holding his hand while this was going on and it made me break down.  He was in so much pain, I realized it was the right decision and I cried hard.
 
We both had our immediate family in there with us.  Everytime someone came in the tears would start again.  All of a sudden it was close to 11.  We asked the chaplain who had baptized Jackson to come in before they took out the breathing tube.  We all gathered around and he said the Prayer for removing life support. 
 
This is where the floodgates really decided to open up.  This is where Molly started crying.  That was extremely difficult to see.  I was holding her and she was hugging me back.  After the prayer we all exchanged hugs and people kissed Jackson, including Molly.
 
We called in Dr. Nancy Ghanayem.  She gave him a big dose of morphine and some other sedatives.  They took out all the lines and then Sara took over.  She picked him up and sat on the couch, Molly sat next to her and then myself.  We took our time and then asked for Nancy to come in and remove the breathing tube.  He didn't have to experience any pain at all.  We held his hand and rubbed his leg, both of our parents stood behind us(as they have throughout everything) taking turns comforting the both of us. 
 
It didn't take long at all, another reason for us to be comfortable with the decision.  Jackson passed away right around 11:20 a.m.  The only thing that was keeping him around the last couple days was that breathing tube.  Having him go this way was the right decision.  It was peaceful and he was surrounded by love. 
 
To Jessica and Aunt Sue, Thanks for all of your extra work and effort for us.
To Candee, Thanks for extending your hand to us and taking us in on those late nights and keeping Jackson company when we couldn't.
To Anne Dewey,  You are a wonderful nurse and person and we are forever thankful for your caring heart.
To Dr. Nancy Ghanayem,  Since we met you, we knew you were special.  You were Jacksons guide throughout this entire journey and now it will be his turn to guide you through any other difficult times.
To both of our parents, thank you for teaching us how to be strong and how to love.
To all the other family, friends doctors, nurses and strangers who have followed Jackson, thank you.  The support has been overwhelming and greatly appreciated.
To Molly,  you are the best big sister anyone could ever have.  You had a bond with Jackson before he was born and you will continue to do so.
To Jackson,  We love you little boy.  Keep watching over all of us and be that angel we know you will be.
 
Thank you all so much for everything.
It has been an honor and a privilege to be able to share Jackson with you.
We will get all the other information out to you at a later time.
 
Take care
Jake and Sara

Comments
(Anonymous)
Sympathy

Our deepest sympathys are sent out to your entire family and especially Jake, Sara and Molly. May God send you comfort and peace as you go through this. We are praying for you.
Amy, Timmy, Maddie and Tuff

(Anonymous)

i'm so sorry..im crying uncontrolably! Jackson was a brave couragous soul and he will forever hold a special place in my heart. GOD BLESS YOU ALL. i'm so sorry for your pain.

Chrystal Loyd

(Anonymous)

Sara and Jake,

I sit in tears, and speechless. Jackson's life has touched so many people! He will always be a very special angel on your shoulder! May you all find comfort in this very special angel!

(Anonymous)

I'm so terribly sorry for your loss, I will be keeping you and your family in my prayers GOD BLESS YOUR ENTIRE FAMILY

(Anonymous)

My thoughts and prayers are with you all! Little Jackson is now in heaven with Haniel my son, Haniel passed away on January 4th of this year. He also was born with HLHS. I know exactly what you guys are going through. Stay strong and don't loose your faith, this will keep you guys going. Sara, to you I say, keep yourself occupied, eventhough you are strong there will be days that you will want to have him with you.

God Bless You!
Dianett
samdanmas@yahoo.com

(Anonymous)

I am so sad to hear this terrible news. My heart is breaking for you. I hope that you can find comfort in each other and in those who love you.

(Anonymous)

I don't know what to say and I don't know how to say it other than I'm so sorry and my prayers are with you. The thought of someone losing a child brings me to tears. God bless you.

Melissa

(Anonymous)

I am so sorry that his life was so hard.. Thank God his soul is set free and never has to hurt again.. I wish I could do something, anything for you to help you.. You're in my prayers.. Please believe that your son has changed, enriched and brought value to so many lives.. He is a Hero, I know there were people who read about him who may have not known the value of life, how fragile it is, and important it is to love and be loved.. Jackson taught them.. Maybe that was his mission, to teach us all how precious this gift we have been given is.. To not take one breath for granted, to rise above the hurt and join together in love.. He has touched my heart forever.. I will never forget him.. God Bless you, and may He grant you serenity.. Angelina and Aubrey

(Anonymous)
I Am So Very Sorry

Jake, Sara. and Molly

My heart goes out to you in your terrible loss. I am so sorry. I had not been as close to this as I wished, not until the last couple of days. I waited and waited for new posts so I could know Jackson was ok. And now he really is. He is a beautiful new "ANGEL". And without a doubt earned those wings. I pray that God above gives you all the strength and faith in this time. I am proud to know of Jackson and his wonderful parents. You two are special people. I have a poem I would like to share with you if you allow me to. It is entitled:
FRIENDS

I cannot ease your aching heart,
Nor take your pain away.
But let me stay and take your hand,
And walk with you today.

I'll listen when you need to talk,
I'll wipe away your tears.
I'll share your worries when they come,
I'll help you face your fears.

I'm here and I will stand by you,
Each hill you have to climb.
So take my hand, let's face the world,
Live one day at a time.

You're not alone, for I'm still here,
I'll go the extra mile.
And when your grief is easier
I'll help to make you smile!

If I an do anything for you please do not hesitate to let me know.
May God Bless and keep you. You are in my prayers.

Respectfully,
Debbie

(Anonymous)

To Jackson:
A little boy
a special friend
a little fighter
right to the end
gone from our lives
but not from our HEARTS
we'll keep you there ALWAYS
like we have from the start

*Jackson you will always be a memory close to my heart*

Jake Sara and Molly I will continuing praying for your family for god to ease your pain I admire your strength and courage throughout all of this journey

(Anonymous)
Prayers

I am so sorry for the loss of your sweet little boy. You family is in my prayers in your time of need. (((((HUGS)))))

(Anonymous)
sympathy

my depest sympathy to you Jake and Sarah.
for the lost of your baby boy Jackson.
may he fly high in the blue sky.
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(Anonymous)

My heart is breaking for you. I cannot imagine the grief you are experiencing. My thoughts and prayers are with you during this difficult time.
Jennifer

(Anonymous)
Jake and Sara

I would like to send my prayers to you and wish for you to stay strong at this time. Jackson is now an angel wathcing over you. I know how difficult it can be to loose a child,my sister passed 14 years before I was born and it was very difficult for my family. It is a blessing that he was able to spend time with you and that he came into your life. Please keep your head up and stay strong, little Molly isnt going to understand, but this will be hard for her as well. God bless!

(Anonymous)
IM SO SORRY...RIP BABY

IM SO SORRY FOR YOUR LOSS...MAY GOD BLESS ALL OF U AT THIS DIFFICULT TIME... I WILL BE PRAYING FOR U...HE IS A BEAUTIFUL CHILD, AND WE LOVE HIM...

(Anonymous)
Our Wishes For Your Family

We extend our prayers and strength to your family! We have been following your situation through myspace. We are sorry for the loss of your son and pray for peace for your family and friends at this time. Bless you all and May God give your hearts peace!

Peggy, TJ, Solomon & Beth Ann *Kentwood, Michigan*

(Anonymous)

Thank you for the time I got to spend with Jackson. He is a beautiful baby boy. I am glad you were able to have Anne around, she's very good and loves Jackson a lot. My thoughts are with you. You are an amazing family. I am proud to have known you all. Take care and please keep in touch. Love, Hope

(Anonymous)
Your precious son

I am so sorry to hear of the loss of your beautiful son. I lost my son, Kenneth, to HLHS just over two months ago now. If you need a shoulder to cry on as you go through this extremely difficult time, please get in touch with me any time. Sara has me as a friend on her myspace page.

Lindsey, Kenneth's mommy

Sympathy

I am so sorry for your loss, i have only been following Jackson's story the last few months but i feel as if i knew him. If you need anything please feel free to contact me.

Jennifer, Angel Jessica's Mom

(Anonymous)
May you have peace

Peace to your family, may the sorrow be lifted and your life mend.

(Anonymous)

My deepest sympathy goes out to you and your family. I have only been following Jacksons story for a few mo. now, but I feel like he is part of my life. He was a very brave little man. who is in a better place without pain. My thoughts and prayers are with you all. You are all very brave and may you all have peace.

Amanda Fisher and Alex.

(Anonymous)
I am so sorry for your loss

I will keep your family in my prayers. I cannot imagine the pain you all feel, but I know in my heart that Jackson is an angel now. He has received his wings and is now at peace. I will light a candle tonight for Jackson and say a prayer for him.
Sincerely,
Tina, Mike, Thomas, and Bridgett(HLHS 17 months)O'Toole

(Anonymous)
I am so sorry for your loss

I will keep your family in my prayers. I cannot imagine the pain you all feel, but I know in my heart that Jackson is an angel now. He has received his wings and is now at peace. I will light a candle tonight for Jackson and say a prayer for him.
Sincerely,
Tina, Mike, Thomas, and Bridgette(HLHS 17 months)O'Toole

(Anonymous)
My heart hurts for you

I know we dont know each other well, but i have followed Jacksons story for quite some time. I am so sorry to say we now have something in common. Our angels.

I know its going to feel like a nightmare the next few weeks. Hang in there. I am here for you if you need a friend, or stranger to vent to. Always. No one knows the pain a parent will go threw more than another parent. We love our children so deeply, and love the life we live threw them. It has come to an end. I am sorry for you...and your loss.

my heart will be with you as a friend, a mother and an angel the next few weeks.
Sibahan Sanders mom to angel Colin - phila pa

(Anonymous)
I'm so sorry for your loss

I cannot imagine what you are going through. But you have my deepest sympathy, my heart is broken with yours.
My thoughts and prayers go to all of you.
Laurie Colello

(Anonymous)
I am so sorry

I am so sad for you, I can't help but sit here and cry, I lost my grand daughter in December, and I know this is a tough valley to go through, he is now free and in the arms of Jesus, not tubes or anything, and through Christ we no with out a shadow of a doubt we will see and hold our babies once more I am praying for you...God Bless and you have my sincere sympathies

(Anonymous)
I AM SO SORRY FOR YOUR LOSS

Jake, Sara, and Molly I am so very sorry for the loss of your little boy Jackson. My prayers and thoughts are with you and your family. Jackson is now your own little angel looking down on ya'll.

God Bless and Take Care
Kim Thomas
Louisiana

(Anonymous)
jake / sara / family

please know our thoughts and prayers are with you. and jackson is no longer in any pain.he will watch over you
the becks

(Anonymous)
With love

I am grateful you were able to hold him with no wires, no tubes, if only for a little bit, just to cradle your baby boy without interference and that you were surrounded with love and support from your families during such a painful moment.

I pray that throughout your grief you find something to smile about every day when thinking of Jackson. Your little man has touched a lot of lives all the way around the world during his time here and you know he’s got the biggest smile on his face now..he’s watching his family with other loved ones in heaven, running free and flying with the angels!

“Time will ease your pain
Lifes full of changes
Nothing ever stays the same,
How can I help you
Say goodbye?
It’s ok to hurt,
It’s ok to cry.
Come let me hold you
And I will try,
How can I help you to say goodbye.”

(Anonymous)

My thoughts and prayers are with you all, especially Jake, Sara, and Molly. No one should ever have to experience what you are going through right now - my entire heart goes out to you. Please accept my sympathy and stay strong. There is a lot of loving people that surround you. Rest in peace Jackson.

Tracey (Dietrich) Schmidt

(Anonymous)

I only just found out about your whole situation.
I am due with my little boy in a matter of weeks and my heart breaks for you all. I cannot even imagine the pain and suffering.
My prayers are with you. May God continue to comfort you, and may God help Molly through all of this as she will not understand until she is much older. God Bless you.
The Dreyers, Utah

(Anonymous)
Even those you don't know love Jackson

I have been keeping up with Jackson since before he was born. I have been online friends with Jessica since I was 12, so about 10 years. I have a little boy- Jack, 16 months, and together we have been praying every night for your sweet little angel, Jackson. I sit here in tears now, wishing things could have taken a turn for the better. It is far from my imagination how you must feel right now. Just thinking about anything happening to my Jack breaks my heart and takes my breath. I think that you have given as much love, time and energy as you possibly could. Although this has been a difficult road, I know from losing close family members, that Jackson will always be with you in your hearts and will watch over you in Heaven. He will visit you in your dreams. Big fat kisses to Molly, I know it must be hard for her to understand why her baby brother's life had to be so short. My prayers were with you before and they will continue to be with you always. God will be holding your hand through this. In Jesus' name I pray for you, Jake, Sara, Molly, and family and friends who all cared for and loved Jackson.

=*Leighanna*=

(Anonymous)
My thoughts and prayers are always with you

I am so sorry for the great loss your family is going threw. Having a child with a CHD and CHARGE I know its hard. Jackson will always be looking over all of you and being a wonderful gaurdian angel.
My thoughts and prayers are with you all!!

I also made a video for you to view when you are ready of Jackson

here is the link....

http://www.onetruemedia.com/shared?p=2fa78da7bc8cbcb6f24d04&skin_id=1001&utm_source=otm&utm_medium=text_url

(Anonymous)

I am so sorry to hear about your loss. I first read about Jackson on Eva's site and have been checking in on him multiple times each day for about a week now. I have never posted for fear of not having the right words to say. I still dont have any 'right words', but I wanted you to know that there are people that you dont even know about that are storming Heaven with prayers for you and your family right now. Stay strong for one another and God Bless Jackson! THank you for sharing his story with us.

Lindsay Godsey
Memphis, TN

(Anonymous)

You are a Precious Child
Created out of love,
a blessing from above.
I've adored you from the start,
and your little footprints touched my heart.
A single teardrop represents the millions I have cried
My life never the same since you died.
I wish you could have stayed longer with me,
I'd watch you grow into all you could be.
Although we are apart,
Your are Always in My Heart.
I dream of a joyful time when
we will be reunited once again.
Thoughts of you make me smile.
You will always be My Forever Child™

~© S. Mosquera~

(Anonymous)
prayers

Jut to let you know our prayers, and thoughts are with you. I can only imagine what a difficult time this is. He is in a much more peaceful place, that you can be sure of. Take care Deb & Dale

(Anonymous)

Please accept my & my family's deepest condolences. I can't even imagine what you're going through.
Much love and strength,
The Weir Family
New Brunswick, Canada

(Anonymous)

Sara, Jake, and Molly,
My heart is breaking for you and my deepest sympathy's for you. I do not know the right thing to say but I know you have lots of love and support around you to make it through this difficult time. My thoughts and prayers are with you.
Holly (Dietz)Birdine

(Anonymous)

Heaven is rejoicing. Sweet Jackson is resting comfortably, happily, and pain FREE in the arms of Jesus.

My thoughts and prayers are with you, his precious family, as you grieve the much too short life of your most amazing son, Jackson. I pray peace and God's love surround you and you begin to heal quickly. Be kind to yourselves and don't rush.

You are being thought of in Southern California.

~ Mom of a surviving heart baby (who is now 6 .5 years old)

Heartbroken

My heart broke when I heard the news of Jacksons passing. I knew the end was nearing, but actually hearing it was just such a shock. Im soo soo sorry. He was such a fighter. He was soo strong. His presence has taught me such strength and love that I didn't know existed. To read about the strength that that beautiful baby boy had in him, was just amazing. He trully was a mirracle. Now he is a beautiful angel in heaven. He is finally at peace and whole again with no broken heart, and he is without pain and suffering. What a champ. Rest now baby Jackson, you are free. You will be greatly missed and forever loved and remembered. Watch over your mommy, daddy and sister. They need all your love now. R.I.P. Little man. And for Sara, Jake and Molly. I feel for you, you guys are in my heart and prayers forever. You all were soo strong for him, and that is what got him through all of that. Plus your love for him, and making that decision, was what helped him go peacefully. Bless you all. God will get you through this ordeal. He is now taking care of Jackson, until you are with him again. Jackson is smiling down on you all now, thanking you for freeing him. He knows you love him and did what was best for him. Best wishes for you all and take care.

(Anonymous)
He Is A Angel

awwww, that is one adorable little guy there.
he truely looks like an angel.
i am very sorry for your loss.
he will sure stay in your hearts.

(Anonymous)
Muhowski Family

Jake, Sara, and Molly,
Words cannot explain how deeply sorry we are to hear about Jackson. Your family has been in our thoughts and prayers for so long and will continue to be. Jackson is in a better place now, no longer in pain. Take care and know that Jackson will now look after you.

Stacy and Josh

(Anonymous)
strength

Jake, Sara, and Molly,

I want to thank you for sharing Jackson with all of us! He truly has a remarkable story. That story reflects his family.....remarkable. Your strength has been nothing but admirable. Jackson's short life here was
nothing but blessed to have you by his side the entire time! He will now soar with the angels, and continue to bless your life, and of the lives that he touched. There are so many things that we take for granted, and Jackson has taught each one of us to live life for today...live today as our Present! Here are a few poems that we thought you might like.

Guardian Angel Prayer
Guardian Angel from heaven so bright,
Watching beside me to lead me aright,
Fold thy wings round me, and guard me with love,
Softly sing songs to me of heaven above.

Tiny Angels
Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear....
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren't here for very long....
Why is it, you couldn't stay?
Tiny Angel shook his head,
"These things I do not know....
But I do know that you love me,
And that I love you so".



The Cord
We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!



No words spoken will be able to make this an easier time for you, but please know that if there is anything that we can do to help we will be there for you!

Love to you all!

Dennis and Becky

(Anonymous)
Sorry

Sara & Jake,
I want to say that I know what your going through. My boyfriends sisters daughter was to up at Milwaukee childrens and passed away at 2 months and 11 days old on the 17th of June. It will be a rough road ahead but just remember there are people that love you and will care for you. There are many people out there that need to talk about losing their child and it's not easy. It will take a long time as for my boyfriends sister we had the funeral already and she's having a hard time now. If you ever want to talk with her just let me know. Ahlia Ottum had many problems as well and the story on how he passed brought me back to the visual of how everything went with Ahlia as well. Take care of your selves and just remember they are now looking over us and are in a better place. yours truly, Halli Koeppe

(Anonymous)

Jake & Sara

My thoughts are with you and thank you very much for sharing Jake's story

I know I'm several years later but I'm dealing with this with a grandchild and like to hear other people story. Sorry that yours ended the way it did but a wonderful angel now