August 12, 2013

August 12, 2013 is a date that will forever be engraved on my heart.  It is the day that I began my second nursing job with Caring Hearts taking care of medically fragile children in their homes.  My heart is so happy.  I have accomplished my goal...what an amazing feeling. 

Thanks be to God.

Brenda

I did it!!!

Graduated July 3, 2013 with my Practical Nursing license....and Bri was sitting right there on my shoulder the entire time.  Not totally out of the woods yet, sit for the State Boards on July 26th in Mobile, Al.  To my total shock and surprise was offered my first job two days after graduation during my first interview.  I was like, "are you offering me a job" and the lady said "yes" with a smile on her face.  I was speechless.  Expected to go home, wait around all nervous for several days for the "call" and BAM!  didn't happen that way.  Of course I will be working nights (which I expected) but it's all good because classes start again in August at the college, for which I am already enrolled to continue my nursing career.  God has been so good.  What a truly humbling experience I have encountered during the last 6 years.

I know a future in pediatric special needs is in my future as well (my heart).  I was also offered a position PRN (as needed) doing home health for medically fragile children.  My experience in taking care of Brianna landed me that....

Blessings...

Brenda

April....again

Here it is April, again.  Bri's birthday (would be her 6th) is on the 12th of this month, a Friday.  My thoughts at this moment is to spend the afternoon in quiet reflection and tremendous gratitude for the blessings her little life bestowed on many.

About a month ago during an intensive study of the pulmonary system, how Bri's life ended came crashing down on me.   The instructor was going into what happens to the heart and lungs and the body during this time of distress (and the weeks leading up to it) that leads to death.  All I could think about is how she was so right, the book was so right...that everything it said would happen, did happen.....to Bri.  Oh, the heartbreak.  I had to leave the room.

Days passed and life goes on...

One thing I can say is that the nursing education has been beneficial in my healing process.  I hope that in the future the knowledge I have gained can help someone else through a difficult time in their life.

Christmas 2008...oh how time flies.

LOVING....

Loving nursing, loving being at the hospital, loving helping people....life is good...thanks be to God.... and sweet little Bri. Hugs and kisses baby girl.

Oh My Goodness....

Tomorrow is my first day of hospital clinicals.....I am so excited. Little Bri lit a fire in my soul to give, give, give back. I love and miss her so very much.

It's Been Like Forever.....

It's been like forever (or so it seems) that I posted...so much has happened. The past months have been bittersweet. Bri has now been "away" longer than she lived. Hard to believe. Her life with us seemed like such a long time....such a wonderful blessed time.....

fast forward.....

I'm sad to say that our marriage didn't survive the tragedy that found us. God knows we tried...and tried...

Something good has come of all of this though, I have become someone I never thought I could be..last Fall I took a job at a Skilled Nursing Facility that houses mostly elderly folks...and I love it. My position is in the rehabilitation department (I often wonder just WHO is getting rehabilitated...me or them?!!) I started college last Fall as well working on my prerequisites for nursing. God has been amazing in answering prayers...I have been accepted into the nursing program beginning in May of this year. (Working full time AND going to college full time has paid off!!!). My plan is to eventually work as a hospice nurse. Never in a million years would I have thought that being a hospice nurse would be my goal...people say to me "how could you do that?" and my reply to them is "when your child dies in your arms, what could possibly be worse?" Working with the elderly has been immensely rewarding. My thoughts are if I can make one person feel not so alone, and loved, then I have been incredible successful. Life is good, it has been incredibly hard, but good. Much love to all who have followed Bri's life. She was an amazing soul who inspired me to be the person that I am now.

Brenda

Caleb, Sweet Caleb

I go through the day with a weak smile on my face. Sweet baby boy Caleb has been touched by the realities of Trisomy 18 and died. Such a harsh word...but I learned that it is one of those words that holds reality, true life, finality. Caleb was here 29 amazing months, so was Brianna. Caleb's death was caused by pulmonary hypertention, so was Brianna's....Caleb gave hope to so many people with babies born with Trisomy 18....so did Brianna.

The pain never goes away, it just softens a little bit with time. God was so good to have shared Caleb, Jeannette, Steven and Caleb's family with all of us, may he continue to bless them during this very difficult time.

Brianna, Brianna, Brianna

I can see the date on my calendar and my heart breaks. Sept. 3rd will be two years since I kissed your sweet face. It feels like you have been gone for longer than that. Oh how I miss your morning snuggles. Love and miss you so very much baby girl. Forever in my heart.

Happy Birthday Sweet Bri

What of my favorite pictures...

Today you turn 4 years old....and I can only imagine the birthday party you are having in heaven. How difficult this path of grief is to follow. Right now your daddy is in the Dominican Republic on his second (men's) mission trip. Your sister is in Fort Worth, Texas living with her brother, wife and little girl, who is 15 months old, and helping her heal her broken heart. My plans are to go on a mission trip later this summer to visit several orphanages. The message sent to us through you from Christ continues to change our lives for the better. Oh how we miss your silly, happy smile and morning snuggly hugs.

Here are some pics from Bri's short life here with us. Many of them make me smile with such happiness. As I have said at least a hundred times, she was the happiest child I have ever known.

Me and my Daddy in Chicago

My Favorite Chair

Bri's visit with Annabel

Halloween....Chicken Little

Reading with my Sissy

Bri Loved being outside in her swing.

Getting Lots of Love..It was Her 2nd Birthday With Us

Ashley babysitting (!!) in Chicago...Isn't it the cutest!

Chillin' With My Dad

Bri was always a determined little girl...out to prove that T-18 babies CAN learn and deserve a chance just like every other child on this earth.

"Death leaves a heartache that no one can heal.
Loves leaves a memory that no one can steal."

Forever in our hearts.

Thinking of you Bri

It's almost your birthday....I bet Ms Debbie will be throwing a big one for you in heaven. Miss you sweet baby girl.

Ma Ma

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.

Check out this Sweet Baby Girl, Lilly

http://pray4lilly.blogspot.com/

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.

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.

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.

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.

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.

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.

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.

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....