David's Story

http://www.gainesville.com/article/20110625/articles/110629677

Jacqui's Video: http://video.ocala.com/video/1024284477001

photo by: Jacqui Janetzko

We have had some members of the media follow our son's journey.  The above link is the story that was written in the Gainesville Sun about David.





"Lord, please let your light shine bright.  Allow people to see his beautiful life, and not focus on his death.
In Jesus' Mighty Name, Amen" My Daily Prayer - AH

Missing Pieces

Lexi (our 9 yr old) "he's like a piece to our puzzle that we are missing"

Our home is never a quiet place, but we still know when there are missing pieces.
This season is ending - no more belly painting, awesome nannies, or great photography.

Here's to you, extraordinary pieces - you will be missed.

Love,
The Haynes Fam

The Memory Montage

The next couple blogs are pages from my journal that I want to keep as a part of the journey to remember.

ROUGH DAY
Today I came home from work, crash landed in blankets and pillows and pushed play.  This would mark the 27..hundredth time I watched his memorial video. At the end, I touched the triangle button again and a voice began to sing "It's like a storm..."

The memory montage plays in my head...
Heather: "We're Pregnant!...Again"
Doc: "Yep, He's all Boy." 
"There's his hands..."
Me: "Trisomy 18? So what does this mean?"
Heather: "Feel Him, He's coming toward your voice..."


The part when he's suppose to cry...


Me: "He's so beautiful" "You're so perfect"
Thoughts: "Come on breathe, baby, breathe..."
His Bath.
Our Prayer.
Saying Goodbye.


"Thank you all for coming to honor our son..."


Then I hear the song begin to end - I look up at the video just as I did when I snuck away from everyone at his funeral, to watch it again. My goodness.  He was "this close" Just 1 month, 4 days. ::knife blade::


Psalms 132:1 "¹ Lord, remember David
      and all that he suffered."(NLT)


I just know I will fall asleep tonight with the comfort of Jeremiah 29:11 that's tattooed on my life.

The Celebration Service

I wanted to put this up so that when I look back through this blog of our journey I will have this with me, forever.  Also, for our dear friends who weren't able to attend.

Greetings: (I walked Heather to her seat, then to the podium. Wind came out of my sail. I couldn't speak-at all.) I looked down at my journal, tried to look up and greet everyone, but I couldn't find a soul to make eye contact with. ::long pause:: "whew, I cant believe I'm up here doing this." (big lump) I could not say one word.  Then I prayed "Lord, please get me through this.  I need your peace."

Okay, here we go "I want to thank each of you for coming today to honor the life of our son." My goodness that was hard.  That's a heck of a sentence to say.

I prayed over us and the service, then my brother Allen came up and sang a song he had written. Allen "I'm honored that Aaron and Heather wanted me to do this, because I don't sing, nor play the guitar very well."  It was perfect from where I was sitting.

Then I stepped back up "Trisomy 18: Chromosomes come in pairs, in the case of T-18 the 18th chromosome is a set of 3.  Many people are more familiar with Trisomy 21, more commonly called Down Syndrome."

"The education and awareness in the medical field, is today, where down syndrome was 30 years ago." "I am on a mission to speed up that learning curve."

"The percentages are very staggering of Trisomy 18 children that survive, which is why they dub the syndrome "incompatible with life".  Thirty years ago, when few knew what down syndrome was, a child was given the chance to live.  Today, somewhere out there that man works at a local grocery store.  None would say he was "incompatible with life".


So what happens to the children that do survive?
At this very moment there is a mother of a two and a half year old, who is speaking to state representatives about her child's disability qualifications.  This child qualifies because of his disability, but in the state of florida, if you are a hard working citizen, with a child that has a disability, this child may not qualify for social security or medicaid because "you earn too much money". The at-home nursing care that is needed for this child is only provided through medicaid."
So what can we do? Pray for the Trisomy Community, Pray for the families that go and speak to med students, pray for those that go before local government representatives. And always remember, a life is a life, is a life."

Then Heather introduced our son. Heather "He wanted to be acknowledged, he was very strong-willed, he loved to snuggle with his umbilical cord, he loved hearing mommy read stories and sing, he would have been a binky baby, he knew the sound of his daddy's voice and responded, he loved ice cream and cheesecake, he hated when mommy ate ice, he got hiccups at 9pm every night, he loved when daddy would paint mommy's belly, he loved it when his big brother Andrew would talk to him throughout the day, his mere presence in our lives brought joy, hope, a deeper faith, and a better understanding of unconditional love.   He taught us to believe in miracles.  Thank you God for allowing us to be his family for eight wonderful months."


Then our girls spoke about David.

Then I closed "David's story is not about a child that didn't make it into this world.  His story is a story of Hope no matter what the diagnosis.  David has certainly out lived his life.  He has shown me to never give up, to believe in miracles, treasure each moment, and make every day matter."

"All the sadness and pain comes from my selfishness. All the peace and comfort comes from the one who breathed life into this child.  David's story does not end today. Thank you"

After the service we had a dedicated balloon release.

AH

The Hardest Days Yet

The  days since our sons life celebration service have been the hardest.  These days have been harder than the days of our sons passing and the two weeks that followed.  It's the finality of it all that hurts I think.  We are trying to reconcile between holding on to whatever we can of our son, and the proof that he existed in this life, and continuing on in life ourselves.
I am so wrought with the guilt of not cramming every possible life experience that I wanted to have with my son during his short stay here on this earth that I could have.  I know that no matter how much I could have crammed into his eight months I would never feel it was enough.  Still I wish I could have done more.
My heart aches so much.  I am trying to discern the difference between extreme sadness and depression.  I am sure that at this point I am not experiencing depression, but I am having a hard time knowing the difference.  I am clinging to God with every fiber of my being.  I am asking that he shows me some significant miracle or heart change in me, my children, my husband, someone, somewhere! I need a miracle. 
I keep asking God everyday to allow me to have visions of my son in heaven, or at very least let me dream of it.  You see my only hope to ever see my son again, is to go to heaven, but I would like for God to remind me that he is there. 
As my body returns to it's prepregnant state, my heart breaks a little more.  It's as if the physical signs of Baby David's life are slowly fading away, and that is painful.  I miss my son, God I miss my son. 
As you all who are reading this think of my family, please pray for us.  We need it, and we need to see God in real tangilble ways as we process through the hardest thing we have ever faced.
Blessings
H

Waiting for the Sunset

Heather and I keep taking turns being alone in our bedroom, looking at the photos of our beautiful son. The depths we have reached on both ends of sadness and peace, have been the most intense this week.


I am struggling right now to prepare the words I am to speak on Thursday.  I see myself standing there, but not being able to say a word, just staring at his photo.  Every time I see this image of myself, I close my eyes and pray for peace. 


I am also struggling because my video editing software has completely crashed.  I was going to prepare David's memorial video today and will not be able to do so now.


This is a big time hurt for me. It was going to be a therapeutic process.  Anytime I make a short film for clients, the emotions of their event comes over me like I'm there with them. So I just knew this was going to be a good thing for me.  I have to think that God was somehow taking this from me, for some reason I haven't figured out yet.   Nonetheless, very painful.

The only way I can describe what is happening to me right now, is to visualize the beach.  The waves are the pain as they come crashing in, then fade out into the sea.  It feels like that.  The beach itself is very calming.  The children around are laughing and playing.  And off in the distance I see the sun setting.  


Is this service closure? No. It's more like the sunset to a long, stormy day at the beach.  The next day I'll wake up again with an emptiness in my arms. A longing to hold him, just one more time. I'll pray for comfort and strength and then I'll smile when my kids say "are you okay".   And on that next day, I'll look up to the sky and hope for clear skies and a bright sunny day.  

My goodness how I miss him.  Preparing for his service is definitely a struggle.  Really hoping for the rapture to happen before Thursday. When did that guy predict for that again???


AH

Celebration Service is set

Today, I finally had to face what I had been putting off since week 19. This was when the doctor told us we should prepare for his death, even before we celebrated his life.  I just couldn't do that.
We got to celebrate his birth and now it was time for me to face this reality.

I was so emotional driving to this place.  I kept wanting to drive back home and not deal with these details.  However, when I arrived the staff at the funeral home treated me like family, and they truly made me feel like I was coming home.  They were so accommodating and compassionate.

As we began speaking about David, I said "Trisomy" and one of the associates eyes filled up.  You see, she shared with me that she had lost two children in 1999 and 2000 to Trisomy.  We immediately began discussing the medical field's knowledge of this lethal syndrome.  I prayed for this woman.
Another person's story of why Trisomy Awareness is so important.

As I was leaving we had hugs all around.  God again had his hand over this encounter.

We will be celebrating David on June 16th at 12:10pm, the time he was born to heaven.

In Lieu of Flowers we ask that you contact us on how you can donate to our dear friend's Trisomy Medical Care Expenses. Please read more about Trisomy expenses, if you are led.
click this link: 2 year old Sweet Baby Caleb