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Jackson's Heart
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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

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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*


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

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


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

May you have peace

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


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.

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.
Tina, Mike, Thomas, and Bridgett(HLHS 17 months)O'Toole

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.
Tina, Mike, Thomas, and Bridgette(HLHS 17 months)O'Toole

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

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

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


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

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

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.”


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

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