Tuesday, November 30, 2010

Oh the Holidays...

Oh how the holidays wreck havoc on one's soul. At Thanksgiving, I gave thanks to God for our family, both here and in heaven (or heaven forbid.....elsewhere), thanks for Ashley getting a job at Disney, thanks for my husband, he is such a good man, thanks for having had our little Bri for 28 months, thanks for our entire family, the list goes on and on. Yet, there's still that place in my heart that is empty. I know Bri will be celebrating the upcoming Season of Advent with the Best and I just have to keep the vision of that in my head and heart.

Monday, November 1, 2010

Check out this Sweet Baby Girl, Lilly


What a sweet little girl and she reminds me so much of what Bri looked like at that age. The paragraph below is a post made by Lilly's mother that I want to share. I applaud Rick Santorum for his wonderful writing ability.

Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article below.

The Elephant in the Room: Two years worth every tear

The columnist's daughter has lived despite every dire prediction.

By Rick Santorum
'Incompatible with life." The doctor's words kept echoing in my head as I held my sobbing wife, Karen, just four days after the birth of our eighth child, Isabella Maria.

Bella was born with three No. 18 chromosomes, rather than the normal two. The statistics were heartbreaking: About 90 percent of children with the disorder, known as trisomy 18, die before or during birth, and 90 percent of those who survive die within the first year.

Bella was baptized that day, and then we spent every waking hour at her bedside, giving her a lifetime's worth of love and care. However, not only did she not die; she came home in just 10 days.

She was sent home on hospice care, strange as that sounded for a newborn. The hospice doctor visited us the next day and described in graphic detail how Bella would die. In sum, she could die at any time without warning, and the best we could hope for was that she would die of the common cold.

Karen and I discontinued hospice so that we and our amazing doctors, James Baugh and Sunil Kapoor, could get to work focusing on Bella's health, not her death.

Like so many moms of special kids, Karen is a warrior, caring for Bella night and day and, at times, fighting with health-care providers and our insurance company to get our daughter the care she needs.

Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability. Sadly, we discovered that not only did we have to search for doctors who had experience with trisomy 18. We also had to search for those who saw Bella not as a fatal diagnosis, but as a wanted and loved daughter and sister, as well as a beautiful gift from God.

We knew from experience that Children's Hospital of Philadelphia was such a place. Fourteen years ago, we had another baby who was diagnosed as having no hope, but CHOP's Dr. Scott Adzick gave him a shot at life. In the end, we lost our son Gabriel, but we will always be grateful to Dr. Adzick for affirming the value of his life.

When Bella was 3 months old, she needed some minor but vital surgery. Some doctors told us that a child like Bella wouldn't survive surgery or, even worse, that surgery was "not recommended" because of her genetic condition - in other words, that her life wasn't worth saving. So we again turned to the Children's Hospital and found compassion, concern, and hope in Dr. Thane Blinman. He told us he had several trisomy 18 patients who did well - and so did Bella.

Next week, we will mark Bella's second birthday. Over these two years, we have endured two close brushes with death, lots of sleepless nights, more than a month in CHOP's intensive care unit, and the constant anxiety that the next day could be our little girl's last.

And yet we have also been inspired - by her fighting spirit, and by the miracle of seeing our little flower blossom into a loving, joyful child who is at the center of our family life.

Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children?

All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.

Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child?

Happy birthday, Isabella!

Yes, I would agree....worth every single tear.

Friday, October 22, 2010

Life Just Keeps Going on In Spite of Everything

I feel terrible about not keeping up with other Trisomy 18 children and their families. It's like I want to see them and their achievements, but that is all I want to see. When I read about the ups and downs and the fears, my heart breaks into a million pieces. I know the family's pain and I can feel it and it is too much for me. Don't get me wrong, I still check on the ones I have bookmarked and oh, how some of their antics and sweet smiles makes my heart feel so good.

I mentioned several months ago that Hospice asked if we (Jerry and I) would be interested in speaking at their annual gala. Of course I jumped at the chance. Initially thought it was going to be in front of 200 people. Imagine my surprise when instead it was in front of 700 people (Yea!! for Hospice. It was a great fundraising event in light of the economy). I was told I did pretty good. Didn't cry hysterically, just weeped softly. I knew that Bri was right there sitting on my shoulder as I spoke. One of the things I loved about it was they had super-size screens in all corners of the room and showed pictures (gorgeous!) of her during my speech.

Another thing I find pretty amazing is after moving to Atlanta (it's a temporary thing) I found out there is a school on the perimeter of our rental community. This public school is where the children in Cobb Cty, with special needs, attends on a daily basis. Then.....guess who moves in across the street, three doors down...the Assistant Principal of the school. To make a long story short, they are in desperate need of substitute teachers. When I went over to take a look at the school, I became overwhelmed with the feeling of Brianna being right there with me, guiding me to where I should be that I just started to cry. Orientation is next week for new subs.....and I will be in that class.

Thursday, September 2, 2010

Not Sure How to Title this Post

I can't believe that almost a year has passed since Brianna died. So many times I've heard how the first year is the worst...compared to what? ...I can't imagine it getting "better". This week I have tried to be "ignorant" of the date. Maybe if I don't look at the calendar I won't see "the" date that Bri died and remember everything that lead up to her death. But I DO remember. How could I ever possibly forget? I know she was struggling and I am glad that she is at peace but darn it, we miss her SO DARN MUCH. Her happy smile, she was so cute.

Last night I dreamt about her and my father (who is also deceased). In the dream my dad was busy taking photographs of everyone and Bri, well she was just there. I remember in the dream my sister (Sonya) wanting to hold Bri but I told her "no, don't you remember? she died....I want to hold her and I did, in my arms.

It's tough being strong sometimes. Tonight I met a man who is affiliated with Jerry's work. He asked me if I was Bri's mom (he already knew the answer) and immediately he started to apologize for bringing her up. I told him it was fine. Bri was REAL and i don't want for her to be forgotten. Apparently she touched his life like she touched so many others. Thank you for asking about our sweet angel girl.

To my dear friend Kathy, thank you from the bottom of my heart. You are the best friend ANYONE could possibly have.

As for Friday, September 3rd, I plan to meet Kathryn (her daughter lived 13 months with Trisomy 18) and go Atlanta Botanical Gardens, then lunch. Jerry will join me early afternoon for our time together to reflect on our blessed life with Bri. Our sweet angel baby girl.

God has been so good to us and for that we give great thanks.

Wednesday, August 18, 2010

Oh, how time flies.

I know, it's been two months since the last posting but don't think for one moment that Bri isn't on our minds every single day. Can you believe it's almost been a year since she earned her angel wings? Crazy. It's still so new and the pain of missing her is so very strong.

The last time I posted we were headed to the Dominican Republic on a mission trip. It was a good trip and bless Bri's little soul, she showed herself to us the very first day. When we arrived at the Mission and went out into the community, there was a boy walking around with a cup in his hand. I motioned him over to see what he was carrying and can you believe it was a cup FULL of lady bugs. Here's a picture of Jerry and the boy with his cup full of lady bugs.

The summer has been hot here in Atlanta but no different than Orlando. The change has been good for both Jerry and I.

We head down to Orlando the end of this week to attend the Hospice of the Comforter gala. We will be speaking at this event (yikes!) before several hundred guests. I've cried bucket-loads while writing the speech but am very grateful for the opportunity to speak about our sweet angel Bri and the amazing services provided by Hospice of the Comforter.

Ashley has been here in Atlanta this week and we have had a really good time. Happiness does come back after such a tragedy. I remember being told that "you will never forget, but you will get through this". I can't say we are through it. We will never be through it but we are starting to live and smile again. The tears still come unexpectedly at times but that's okay.

God Bless.

Friday, June 11, 2010

Dear Brianna,

You would be so very proud of us. Your dad and I are leaving in the morning for our first mission trip to the Dominican Republic. Your life here on earth has brought glory to God. We heard the message you brought with you for those short yet wonderful 28 months you were here with us. We think of you every single day, and "see" you in the beautiful nature that surrounds us. Just last week before bed I was walking Belina and there you were...the first lightning bug I saw of the season. Lighting the way, it was amazing because the lightning bug came out of the grasses, caught Belina's eye and she chased it down the street with the lightning bug bouncing off of Belina's nose. It was amazing.

I know you must be proud of your big sis too. It was quite an emotional moment to see Ashley receive her high school diploma. You taught her well too. Her plans are to start community college in the Fall. All because of you, her goal is to become a speech pathologist.

You taught us well little Bri. Big hugs and kisses to you. Forever in our hearts.

Wednesday, April 14, 2010

Just Being Thankful

The day before Bri's birthday was the worse. We did our best to hold it all together. Our wonderful friends Rick and Susan (coincidentally, Bri was born on Rick's birthday) held a mass in Brianna's honor. It was beautiful. Thank you to you both and your children Tommy and Allison.

On the morning of Bri's birthday Jerry and I resolved to make it a Good Day, a Happy and Thankful Day and we did pretty darn good. We took some gifts to a home for atypical children in Bri's honor, had Jerry's parents over and did a balloon release with Doug, Helen and Jim and Kathy. Below is something I read aloud before the balloon release.

Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
Is she playing on the clouds with angels?
Is she laughing and running today?
If you just let me look for a moment,
To catch a glimpse of her sweet smiling face,
I promise I won't try to take her,
I know, she's in a better place.
Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
And heaven seems so far away...

Happy 3rd Birthday in Heaven to our sweet Baby Brianna

Thank you to all of you who sent emails and facebook messages, thank you for remembering our sweet little angel Brianna.

Friday, April 9, 2010

First Birthday in Heaven

Bri will be celebrating her 3rd birthday (April 12) in heaven this year. As the day approaches I don't know how it will be for us here on earth. I've had several good crying days this week, it's like I have this cloud hanging over my head and all of a sudden the sadness starts raining down on me. We will be going to mass on Sunday with friends and on Monday Jerry is going to get his tattoo of Bri's little feet on his forearm. We are also planning on taking some much-needed items to a home in Orlando that takes care of "atypical" children and follow up with a balloon release in Bri's honor.

We miss your gorgeous smiling face so very much Bri.

Friday, March 5, 2010

One Year Ago Today

I found myself tonight browsing through the many pictures taken of our family since Bri's birth and came upon this one. It is one of my favorites. Our two girls. Then I noticed that I had taken this picture one year ago today. Where has the time gone? Bri died six months ago. Seems like yesterday. If I could only hold her one more time, feel the softness of her skin and smell her sweet baby breath....if only....

Thursday, January 28, 2010

Another Dream...So Far the Best

Last night I had a dream...it has been on my mind all day....this is how it went:

I walk down a hallway and come to a bedroom, open the door and Brianna is lying there in the middle of the bed. Jerry is next to the bed, working....on the computer....I say to myself....what? Brianna died.....but there she is.....dreams no matter how unrealistic yet in the dream so real.....so anyway...there she is....lying on the bed.....I enter the room and think (sounds so morbid) but I think.....she is going to be so cold (rememember, she died)....I approach Brianna and she starts smiling and moving....OMG.....it's her....it's Bri....WOW.....I touch her....and she is NOT cold.....(but she died?!!!).....she is simply our sweet Bri....all smiles, all warmth....all love.....what??? is she talking now?.....she is saying da da da da (yes, she said that when she was here on earth) and then she started say Gi Gi Gi Gi.... my mother.....her grandmother....no, she didn't say that when she was here on earth.....I picked her up, held her oh so close.....in my dream I could smell her....YES!!! I could smell her.....I could honestly feel her.....I was in heaven.....because even in my dream I knew she had died....then the dream simply dissolved......I woke up.....it was 3:30 am..... took a while to get back to sleep....I kept thinking oh, how wonderful.....I not only saw her again, but I held her and could smell her scent......God is so Good......

Sunday, January 24, 2010

One More Thing

Jerry and I met with a very special little boy and his family....Caleb, he is 10 months old and adorable (full trisomy 18). I was so amazed at how these children look so much alike. Aren't they the cutest things ever?!!!!



I actually posted twice tonight...woooo hooo. Be sure to read the blog below too....very important stuff.

Something I Have Been Wanting to Write About

Sadly, we have experienced that the father's of our very special children are so very often ignored. Unintentionally, I'm sure but none-the-less, ignored. I can't tell you the countless times I have been approached with hugs and condolences, offers of prayers, etc....and Jerry would be right there with me yet never acknowledged. I KNOW when this has happened that it is not intentional, I think it is more like the man is supposed to be the "rock", the "tough" one...but let me tell you, when your child is terminally ill, the father is just as sad as the mother. He needs just as many prayers, hugs, condolences, etc. as the mother. Maybe even more because while the mother is at home taking care of the child, the father is out, away from the family, working....please, I ask each of you who read this update to thank the father of the children that you are following on other sites....

While researching grief, I came across the following....sure hit home with me.

Fathers - The Forgotten Grievers

The death of a child is probably the most traumatic and devastating experience a couple can face. Although both mothers and fathers grieve deeply when such a tragedy occurs, they grieve differently, and it is most important that each partner give the other permission to grieve as he/she needs. This may be the greatest gift each can give the other.

Parental grief is strongly influenced by the nature of the bond between child and parent. Bereavement specialists actually speak of "incongruent grieving" patterns in mothers and fathers and of differences in the timing and intensity of the parental bond for mothers and fathers.

For the mother, the bond is usually more immediate and demonstrable, more intense at the beginning of life, more emotionally and physically intimate. The mother's bond with the baby is usually tightly forged from the moment of conception and continues through the pregnancy, the birth, and the nursing process. The maternal bond involves the present and the baby's immediate needs, while the father's bond with the baby more often concerns the future and dreams and expectations for the child. Today, however, many fathers are forging earlier and more intense prenatal bonds with their babies. Fathers also are often present in the delivery room for the birth. Some fathers become direct caregivers of the newborn, developing early and close bonds with their infants. Yet, still in many cases, "the father's emotional investment in parenting tends to occur later and less intensely than the mother's. This has implications for the way parents grieve" (Cordell and Thomas 1990, 75).

When is it my turn to cry? I'm not sure society or my upbringing will allow me a time to really cry, unafraid of the reaction and repercussion that might follow. I must be strong, I must support my wife because I am a man. I must be the cornerstone of our family because society says so, my family says so, and, until I can reverse my learned nature, I say so. - A FATHER, IN DEFRAIN ET AL. 1991, 112
In spite of the trend towards earlier bonding between fathers and babies, the influence of cultural expectations about men and grief persists and is powerful. Typically, the societal view of parental loss is not the same for the father as the mother. Most of the literature on parental bereavement still tends to focus on the mother's grief. Often, men are not acknowledged as experiencing grief; or more importantly, men are not taught that it's necessary to grieve and are discouraged from demonstrating signs of grief openly. Bereaved fathers frequently feel that they are the forgotten mourners and are often referred to as "second class grievers" (Horchler and Morris 1994, 72).

Fathers are expected to be strong for their partners, to be the "rock" in the family. All too often fathers are considered to be the ones who should attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart. Men are often asked how their wives are doing, but not asked how they are doing.

Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned as they try to continue to be caregivers and breadwinners for their families while their hearts are breaking. "Fathers' feelings [often] stay hidden under layers of responsibility and grim determination" (Staudacher 1991, 124). Bereaved fathers often say that such strong emotions are very difficult to contain after their child's death. Fathers often fear that they will erupt like volcanoes if they allow themselves to release these feelings and so, too often, fathers try to bury their pain with the child who died.

It is most important that a father's grief be verbalized and understood by his partner, other family members, professionals, coworkers, friends, and by anyone who will listen. Fathers need to try to free themselves of stereotypes and societal expectations about men and grief; they must be able to tell others that their grief is all they have from their child's brief life. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mind set and allow them to grieve as they are entitled.

In too many instances, fathers' responses to infant loss tend to coincide with how they believe they should act as men, rather than how they need to act to confront and resolve [their own] grief. - CORDELL AND THOMAS 1990, 7

Friday, January 15, 2010

I saw Bri

I saw Bri....in a dream early this morning. She was in her carseat....sleeping peacefully.....then started to stir and wake up....there were people around....smiling and looking at her......I touched her nose in a playful gesture and she smiled that gorgeous smile.....my heart is happy today....thank you Bri. You knew I needed that.

Monday, January 11, 2010

Memorial Cards

Below are the cards we had made for Brianna's memorial service. The first is the top and the second is the reverse side. The third picture is the memorial program. The cards have turned into a type of "calling card" for Brianna. We hand them out every chance we get.

Sunday, January 3, 2010

Good Morning Sweet Angel

Today marks 4 months since you have been gone. It has been a life-changing event that has just about torn our family apart. I ask for prayers for us (Brenda, Jerry and Ashley) that God will lay his healing hand on our family and bring us close again.

Last week we received a card in the mail, it is so amazing that I want to share it with everyone. Here is the outside of the card...

and the hand-written note inside:

"Your sweet little Brianna wasn't here for Christmas, but when I saw this picture there was an immediate reaction - my goodness, there's Brianna scampering around in heaven."

Thank you Joe and Cheryl. What a wonderful card.