Touching Souls Bereavement Photography

If anyone can support this cause, it would mean the world to me.  To find out why, please read what I have typed in below and my reasonings after:

 "At the heart of it all, what matters most is:
Who has touched our lives and Whose lives we've touched.

"Touching Souls Photography, supporting parents whose babies or children die, relies entirely on donations and gifts from individuals and organizations.  Donated dolars are used to support direct expenses for the photographs made for families.  Photographs taken during this precious time with aprents and family become valuable mementos, serving as a gentle link to memories and feelings about their beleoved child.  The collection of photographs, presetned reverently in an album at no charge to the family, is theirs to keep.  The expense for this supportive service is approsimately $750 per family.

"Thanks to a partnership with MISS Foundations, a national non-profit whose mission is to support families after the death of a child, Touching Souls Photography is available to any family in need through tax-deductible contributions.  Any gift amount is welcome and will help to provide this gift of photographs for a family at a time of great need.  Make a donation to support families throughout Chicago and it's suburbs:

"Online: www.toddhochberg.com and click on make a donation.

"By mail: Send a check payable to MISS Foundation,
PO Box 5511, Evanston, IL 60204

"Or for more information, email funding@toddhochberg.com"

Keith and I just met with Todd today.  It has been almost 18 months since Mari passed.  January 16th will be exactly 18 months (which is this coming Saturday).  This man gave of his services almost 18 months ago and took those last photographs with our beloved angel on her last day here on this earth with us.  Yes, I know this was not really hear.  However, it was the last time that any of us got to spend anytime with her before she went to heaven.

When I set and finalized the appointment last Tuesday, and then hung up the phone, it took me only a couple of seconds to realized what I had really just done.  I had scheduled this special time to go see Mari's last day photos with us.  It took all of about 3 or 4 seconds and I just broke down crying.  I could not believe that in less than a week I would be seeing them.  There was a couple of times over the last week I wanted to cancel the appointment.  But something inside me said, "No, I need to see them."  So I kept the appointment.  Today at 2pm (central time) Keith and I met at a friends house (Mandy K., as she was nice enough to open her home to us so we could meet the photographer today).  She left us to be alone with this photographer.

Yes I cried, but the overall dread of seeing the photos was not as bad as I thought it was going to be.  To know now that I have these photos of her is even more special to me than I could have ever imagined.  To put it in this perspective.  Imagine taking the one person you love the very most in all the world.  Now know you only have one day left with them on this earth and you will never see them again until you die some day.  That could be the next day or it could be 50 years from now or even more.  Now you have someone out of the kindsness of their heart who has given of their time to be able to take those last moments you have with that loved one.  You will have them until the day you die.  You won't look at them all the time but you can look at them when you need to.  I guess this is the best way to describe these photos and what they mean to me.

He will be sending me a CD of the pictures soon.  When he does I will put the photos in a PowerPoint presentation to share with all of you.  In the mean time I will post a couple at the end of this post.

The reason I am sharing all of this with you is if you feel lead in your heart to donate, please contribute to this cause.  Even if it is only $5, that $5 will mean the world to another family out their as they too will now have their own last minute photos of their own precious loved one, their beloved son or daughter.

I thank anyone in advance.  If you do make a donation, please do it in Mariana Tunstall's name as a rememberance for her.  Thank you.

I love you very much baby girl and mommy's miss you so much.

Love Mommy

Getting Ready to Give Her Her Final Bath

Washing Her Hair One Last Time

Mommy hold her hand

Mommy painting her fingernails for the first and last time

Mommy holding her while daddy looks on as she gets her hair done

4 y/o Cousin Faith reading the book she make for MarMar

Grandma and Grandpa T saying their final good-byes, with Daddy by their side

Aunt Amanda saying good-bye, Mommy hold her lock of hair

Her Wonder Pets friends keeping watch over her

Uncle Dave, Aunt Amanda, Aunt Peggy, Aunt Amy, and Uncle Ruben having their last moments

Mommy beyond herself with Daddy by her side as they are slowly taking her off life support with the PICU Chaplain Gretchen by our side

Gretchen praying

Daddy beside himself as he holds her hand

"We love you Baby Girl"

She is no longer on life support and now we are just holding each other as a family

I am completely numb as she is slipping in my arms

Daddy wispering how very much he loves her

Mari's Hospital Story

I wanted to share with everyone what I have been working on.  I think most of you already know that I have decided to write a book about Mari's life and for those of you who don't now you do.

I have the first 2 chapters complete so far and now I have the 13th chapter complete.  The 13th chapter in her book is going to be her hospital stay.  What I have done is taken what I wrote in her carepages while she was in the hospital and edited it.  I now wanted to share the edited version with all of you.

Please take the time to either read, or re-read if you read it on her carepage, her story.  I can't say I hope you enjoy it as this will be heart wrentching to read.  However, I do hope that anyone who reads this can feel the emotions of the story.

www.autismawarenessonline.com/hospitalstory.htm

Also, I have decided to give Mari's site a new look.  Please let me know what you think.

My greatest hope is that Mari's site will grow to reach millions of people someday.  If you are not already do so, please follow us on either Blogged, Google Friend Connect, Twitter, or all three.  In doing this, we will continue to grow to get the word out about a beloved little angel we all miss and love.

Mommy's  Angel In Heaven

Did you know that Angels are among us?

Angels are from heaven,
We already know.
But where are they at,
Only God knows.

Sometimes they hide
And do miracles so great,
But sometimes their
Right there in plain sight.

How can we tell
An angel is beside us?
Look for the goodness
And innocence all around.

It may surprise you to find out
that each one of us has our own,
One that is there guiding
And protecting us all day long.

No it is no one you would suspect
Or even think of;
However, to know they are all around
Can give us all a little peace in our heart.

God sent one special angel
In the form of someone with autism.
She taught so many how to love
Without a word to be spoken.


Her angelic innocence
Is what makes her remarkable.
Her never ending love and kindness
Can show anyone how to live

God sent this angel
to take care of us all.
To be the one to follow
And show us God’s way.

Then one day,
God decided to bring her home.
Those of us on earth
Were heartbroken and sad.

Even though she is no longer
Here on this earth,
It gives us peace to know,
She’s actually watching over us every day of our life.

Now, isn’t it good to know
Angels are among us,
Guiding us through
Till we can be together again someday.

HER FINAL DAY

It is a beautiful day by anyone’s account. The date is July 22, 2008. The sky is crystal clear and Caribbean blue. It is around 80 degrees and only getting hotter by the hour. A typical summer day in Chicago. The day has one vital flaw: It is the day I will bury my one and only child.

Her name is Mariana (Mar-ē-awe-na). She was 8½ years old when she left this earth on July 16th. I guess if you are getting ready to permanently say good-bye to the one person who has completely occupied your time and has helped define who you are today, at least it is a good day weather wise.

I get up, take a shower, and get dressed in my black sleeveless top with my black pinstriped pants. My stomach is in knots and I can hardly eat. We head out to the funeral home around 10am.

Even in death, Mari, as we like to call her, is the center of attention today and why everyone is coming. She lays there at the front of the room with her casket open for everyone to be able to say their good-byes. At this point, I am holding it together. I can still see her even though her spirit is gone from her body. She just looks so peaceful like she is sleeping with her Backyardigans and Wonder Pets beanie baby friends as they keep her company in the casket. When you look at her it’s like she will wake up at any moment and say, “Juice please.”

Almost everyone we care about has come to say their good-byes. My grandpa, my mom, my dad, my brother Erik and one of his daughters Athena, my sister Jenny, my husband Keith’s uncles Ken, Phil and Bob and his aunt Pat all flew in from the west coast. Everyone is still in complete shock because just a little over three weeks ago Mari was a perfectly healthy little girl that had her life taken away by E. coli.

The service could not have gone more perfectly. Pastor Steve, Pastor Bill and Army Chaplain McClerean spoke. Friends and family share memories. Jennifer, a woman from our old church, sings “I Raise You Up” by Josh Groban and “Praise You in the Storm” by Casting Crowns. The second song’s lyrics are the perfect words to close out her memorial service that nothing else is said after this.

Keith and I are in the front row sitting on a couch with our parents beside us. The Funeral Director starts with the back row so everyone can come forward to walk by Mari’s casket and say good-bye if they choose. It is row after row of people who come forward. Some are friends. Some are family members. Some are from my husband’s Army battalion. Some are teachers and aides that have all worked with Mari over the years in school. Some are a part of our church family in DeKalb. There are even a couple of people from Children’s Memorial Hospital that came to pay their respects to our believed little one. I think what touches me the most is the love all of these people have for a little girl who never understood any of that and yet she was able to touch everyone of their lives with her loving innocence to those around her. Some of these people stop while others just walk by. There had to be well over 200 people who came to her funeral that day. Finally our row is the last one left. First my mom, then my dad, then Keith’s mom and dad all get up, go over to the casket, and say their own good-byes to our believed angel.

Keith and I are the only ones left. It has finally hit me now. The dam that had been holding back my tears finally breaks and they pour out like a relentless flood that is utterly unstoppable. We finally stand up and walk over to where we have one of her very favorite blankets on display. It is her Precious Moments one. We take it down and bring it over to her casket. We then lay it on top of her like we are tucking her in one more time for what will be literally be our very last time. We take her Backyardigans and Wonder Pets friends and arrange them in her casket. In a way it’s like they will be watching over her while she “sleeps.”

I stand there and tell her, “I miss you baby girl. I love you so much. Mommy and Daddy so wish you were still here with us. Our lives will never be the same without you here with us. I love you with all my heart and I ache for you to be here with me. Just know you will never be forgotten. You will always be our precious baby girl.”

I go and sit back down on the couch and start to uncontrollably cry. Keith holds me. Keith’s dad is there to comfort me. Shelly, my best friend who is like a sister to me, comes back in the room and comforts me as well. I think we must have sat there for 10 to 15 minutes before Keith and I finally get back up and walk over to the casket. We say good-bye one last time, kiss her on the forehead, and then walk out of the room.

We only needed four pallbearers for Mari’s casket but we chose to have six instead so we left no one out. They are my brother Erik, two of Keith’s brothers Ruben and Michael, two of his brother-in-laws David and David, and our nephew Devin. They are called back into the room by the Funeral Director. He does whatever he has to so he can prep her casket by securely closing the lid and getting her ready for burial.

When they all come back out they are now carrying her casket. I head out of the building first with them not too far behind me. I stand behind the hearse and watch as they put her in. I do not take my eyes off once. Everyone now gets in the vehicle they will be riding in so they can follow the hearse. There are at least 20 to 25 vehicles taking the hour drive to the cemetery with each one filled to capacity. I think it is amazing how over 75 people followed us to the cemetery for a little girl who was 8 ½ years old while most adults do not have half that many people show for theirs. I guess it goes to show any of us how anyone out there can truly touch the lives of those around them if they will allow it. The whole way there, my eyes are glued on the hearse in front of us as I can see her casket in the rear window.

We finally get to the pavilion type area at the cemetery where a few short words are spoken by the pastors and Army chaplain. We pray and it is over. I just feel so numb. Keith says we should go mingle with everyone since they came all this way. So we get up and talk to a couple of people. Behind me I notice the pallbearers getting ready to roll her away. At this point, it does not dawn on me what this means.

I am sort of talking to someone when all of a sudden I realize that they are rolling Mari to the car that will take her to where she will be laid to rest. They are about half way to the vehicle when I make a b-line for her casket. I watch as they stick her into the vehicle. I walk up and put my hand on her casket. I immediately fall apart and just stand there crying for at least 5 minutes. Everyone starts to gather around me. The Funeral Director tells everyone to please step back and give me my space. I know once they close that door and drive away, reality will sink in that she is really gone.

I finally tell them it’s ok to close the door. I walk away but can only make it about 10 feet when my legs suddenly feel like Jell-O and I can no longer walk. My legs collapse from underneath me and I fall straight to the ground balling. It seems like everyone swarms around me all at once. Finally, Keith is called and he comes over to take care of me. Then Shelly comes over to my other side as well. I can’t move. I can’t believe Mari is really gone. The utter sadness I feel at this moment goes so deep. I know from this point on my life has been forever changed. They are able to finally help me to my feet and get me back into our limo for the ride home.

The day my daughter died I also died with her. A new Kristena has been reborn in her place. I was a stay at home mom taking care of our only child with severe autism to now having no children at home. I have had to try to redefine who I am today. Every day is a struggle with some being harder than the rest. The one thing that gives me peace is to know that Mari and I will be reunited again one day soon up in heaven.

The End

Contemplating Christmas

(I actually wrote this in my notebook on December 17)

T'is the season of joy, happiness & love, or at least that is how it used to be.

Last year, what would have been our first Christmas without Mari, we got to escape and go to Hawaii. I did not have to deal with the glaring reality of Mari not being here.

Now this year has come. It is technically our 2nd Christmas season. But the reality is so different. This is like it is our first one without her instead.

It feels like ever since Thanksgiving Day I have been just getting by. Almost like a shell of a person who keeps pushing me through each day. Then yesterday came and now Mari is officially gone for 18 months. 18 months, it just does not seem real sometimes.

And now everyone is in the throes of Christmas. Holiday parties, cookie parties, get togethers, decorations, and what not. This used to be my most favorite time of the year. I couldn’t wait to pull out the Christmas tree and decorate it the day after Thanksgiving. I would decorate both the inside and the outside of the house. It just felt so festive.

With Mari, she was one of the most bought for children with presents under the tree. I would spend way more than I should on just one child but she was our only child. Some might say that I spoiled her. But I say you really can’t spoil a child with autism as they don’t understand being spoiled.

Christmas morning was just so magical. I can remember that last Christmas not even being able to put the presents under the tree because she had finally learned that opening presents brought her things she knows she wants.

We would go from one present to the next. Sometimes we would have to take away what she opened as she wanted to play with whatever she had. It was just so much fun to watch the little twinkle in her eye and the excitement on her face.

Now to think about decorating brings me utter sadness. To think about Mari opening her presents is now nothing but memories. Memories that are bitter-sweet but still just memories. We will never be able to add to our memories as Mari is gone.

So now I sit here just thinking of her trying to get by and through each day. Today I needed to find an empty notebook to write in. I found one and quickly skimmed through it to see if I could use it and I found something so completely unexpected. It was a notebook Mari had gotten into and I had gotten so mad at her at the time for doing it. She had drawn several pictures throughout this notebook. These are the types of things I have left of her. Just her drawings. The reality is I miss her so much and that makes me miss her all that much more.

I know that one day the missing won’t be as strong but for now it is quite acute.

I love you baby girl and mommy misses you very much.

Love, Mommy