Hope for Charlie

Our Hope

Our story began in 1995, Charlie and I were married... we expanded our family in 1998 with the birth of our daughter Hannah.  The years that followed we tried to grow our family and the only other time we became pregnant we had a miscarriage.  Last December we decided we were meant to be a family of 3 (plus as many animals as Charlie would let Hannah and I rescue) and that we would stop trying to have another child as we celebrated my 40th birthday.

In May, imagine our shock and surprise when we found out we were expecting a child in January 2010.  There were nerves, smiles, tears, thankfullness, and much joy.  When we started all of the tests, we had passed our first trimester and we had no worries. The first set of screening tests came back fine and  when did the final quad screening, we did not expect the results we received from our doctor.

On August 4th we were given the news that our child screened positive for Trisomy 18 (a fatal chromosome disorder) that if our child was born would have a very short life.  Trisomy 18 or Edwards Syndrome is the third copy of chromosome 18 created in the cells and impacts organ and growth development.  During the following few weeks, we visited several doctors and had a Level 2 Ultrasound and an amniocentesis, we found out that we had been blessed with a son and that our time with him was not going to be what we dreamed.  Please know that we will never regret making the decision to make this journey... through all the tears we have laughter and peace, every day is tough - but "little" Charlie is a gift and worth every moment.  Our son kicks and moves all of the time and has already let everyone know around us that he is a fighter and he is in this with us.

Our blog is about our hope, our faith and our dreams for our son and our family and for any other family who faces this challenge... we thank everyone for their love, support, and prayers!

He said to them, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.  I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it."

Mark 10: 14-15

Remembering Charlie

Today marks 6 months after "Little" Charlie was born... I remember that day as if it was yesterday.  It was a day filled with much joy and sadness.  We think of "Little" Charlie often as our lives have moved forward... our definition of "normal" has changed as we are a family of four, not three.  We are a family that has suffered loss but has been given the privilege of seeing our son born against all odds and with such strength and grace of God that it has given us a new view of life here and after.

I have meant to write often but it is still difficult to find the right words and today was particularly hard.

Hannah, our daughter, has continued to be a source of strength and joy.  She speaks of our Guardian Angel often and with a smile of peace.  I will share with you a story during our spring break skiing, Hannah and I took a day to ski together, at the top of the mountain Hannah looked at me and said, "Mommy we are so close to Heaven I can feel "Little" Charlie with us right now, " so we sat down in the snow and just spent time talking with him and sharing our memories.  Hannah will also let me know that when she has tough days, "Little" Charlie will be hanging out with her instead of playing with Great-Grandma.  As adults we talk about the perspective through the eyes of a child - it is never more appreciated as during this time, a child that is able to look at faith without the barriers of life.  I learn much from her.

Charlie and I have our moments,  Mother's Day was tough as Mother's Day last year was when we found out we were pregnant - not to mention it was Mother's Day and I was missing one of the reasons why I was a mother.  Father's Day was much of the same. 

We also have our moments of profound gratitude and joy... to our son, who inspired us to be more than we what we were, our daughter who reminds us of the gift of being parents, to our family and friends who have continued to support us through prayer and just listening.

I do apologize for not reaching out earlier and thanking everyone... it felt too much like closure. 

So on this day we remember our son and baby brother as a gift, one that we will continue to treasure.

Thank you again - all of our love,

~The Deebs

Every good and perfect gift is from above...  James 1:17

Memories

I wanted to follow up with some memories of our 2 days... I will be honest, we didn't sleep much and we put so much into 48 hours (a lifetime).  After "Little" Charlie was born, we had him baptized and then we took family pictures... we found a photographer through the organization, Now I Lay me Down to Sleep, the organization lists photographers that have had training in providing their services in situations such as ours.  Jill Laber (Live.Love.Laugh Photography) did our pregnancy photos and arrived bright and early Monday morning to help us capture our son's life.  She has provided some early pictures which we will be using for the Memorial service.  After our pictures, we made footprints in clay and started having visitors, which was wonderful - as I stated earlier, we wished more could have met our beautiful son, but we had a very short time with him.

The first night, both grandmothers took shifts and held him for hours through the night...  our evening nurse Ani, stopped in often to make sure everything was ok.  On Tuesday we were moved and continued with visitors meeting our determined little man.  Tuesday evening, we knew our time was growing short... at one point Daddy had to revive him because we just weren't ready to say goodbye and "Little" Charlie pulled through and were thankful when the morning came and he was still looking into our eyes. 

On Wednesday morning everyone was exhausted and while Daddy took a nap with Hannah, "Little" Charlie laid down with me; by 10 am I knew that he was struggling again and called in Jennifer our "daytime" nurse.  Jennifer confirmed his heart rate had slowed and everything we tried didn't help.  I woke up Daddy and the three of us laid down... by 11 am we knew he was no longer with us.

I can't believe that it has only been a week, it feels like it was just yesterday that I held him in my arms.  I hold comfort in knowing that he is with God, he is whole and without pain and that while on earth he was always with us and always held with love, that he was never alone and loved unconditionally every moment of his life on earth.

Tomorrow (1/6/10) we will celebrate his spirit in a memorial service, we have decided to open it up to our family and friends as we know that without your prayers and support we would have stumbled...  It will be held at 4 pm at Christ Church Plano (4550 Legacy Dr., Plano 75024) in the Chapel (not the Sanctuary), afterward will meet in the Fellowship Hall.

We have set up a Memorial Fund with the Trisomy 18 Foundation underneath Charlie's name and can be reached through our Legacy Page:

http://www.trisomy18.org/site/TR/Events/General?pxfid=6670&fr_id=1070&pg=fund

It is our hope, that in the future other families who face the decision we were given won't be limited in their choices based on economic or social factors; rather, they would make the choice based on their faith. While the dreams of sports games, graduations, and other celebrations of life are no longer available to you, the dream of giving birth and holding your child for a moment is truly the greatest gift given to us as parents and one that I would not trade. 

Our love to all ~ The Deebs

James 1:17

Our Miracle

To our family and friends:

I cannot begin to tell you how amazing our son was on earth and how amazing I am certain he is in heaven.  This will probably take a few messages throughout the week(s) to express as we only begin to really process our joy and grief.  "Little" Charlie was born perfect and beautiful... he was born with expressive eyes that looked for mommy, daddy and Hannah when we were talking, he was born with such strength as he fought for every breath for over 2 days, he was born with peace that he truly demonstrated as his sister sang to him, he was born with great love as he was able to touch so many without even knowing them, our son was truly a blessing and a gift that I cannot thank God enough for.

I will start with his birth...  When I went into the hospital bright and early Monday morning, I was excited but also fearful... I was afraid that he wouldn't be born breathing and we had modified our birth plan to try and give him life, I was afraid that he would be so deformed that he couldn't live outside the womb and to be honest I had a little more than fear when it came to the C-section as I have many allergies to pain medication.  All of these were groundless fears and God answered our prayers, our C-section was "easy" and I was able to focus all of my attention on "Daddy" Charlie and "Little Charlie.  I wasn't quite sure of the moment of his birth but heard the nurse announce 7:47 and waited for one of the longest moments in my life, time seemed to stop as we waited, before I heard the beautiful cries of our son from across the room. The relief I felt was greater than anything I'd felt before. He had a lot to say and needed no additional help to say it. He was quickly measured with Daddy taping every second and put into my arms.  He was perfect!  We were then taken to our room for recovery and his baptism. 

We cannot thank the team at Baylor Frisco Hospital enough, they were the most compassionate and loving of people - they understood our wishes, respected our family, and loved our son.

I will post pictures shortly so all can meet him, we are also planning a memorial service for Wednesday (1/6/10) at Christ Church at 4 pm for those who wish to attend and celebrate his life.  We will know more details on Monday.

I will finish his story, but please understand that it takes time.

We love all of you and know that we couldn't have done this without your prayers, support and love.

Thank you ~ The Deebs

2 days and 3 hours

In the past 55 hours I have witnessed the birth of a miracle child. A baby that has defied the odds many times in his short life. I also saw a beautiful baby that fought to be with his family. And I also saw a beautiful angel find his place in heaven.

Today at 11:00 am "Little" Charlie left our world to go sit by Jesus. I know that he is watching over his family and is very thankful for all the prayers and love that he received in his short life.

Last night was a rough night. We thought we lost him so many times but he kept fighting to be with his family. He had a hard time breathing and would turn colors, but he had made it through the night (which we all thought was not going to happen). At 7:47 am we sang happy birthday to him again because he turned a whopping 2 days old. He spent the morning taking naps with mommy and making beautiful noises and faces to his Grandparents and Godparents.

While laying in his Mommy's arm, with Daddy laying next to them, "Little" Charlie fell a sleep. He left peacefully and did not struggle. It was his time to go.

The family is doing ok. They are very emotional and tired. They understand that it was his time, but still want more time with their precious baby. At this point all we can do is pray for their strength and give them all our love.

Again I want to thank you for all of your support, love, and prayers. 

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."

-Psalm 139:13-16

God Bless,

Brenda

Day 2

I am sorry I didn't blog earlier today but it has a busy and emotional day. This morning "Little" Charlie was doing great. He was a beautiful pink color and was responding to all kinds of sounds. He seems to recognize Hannah's, Daddy's, and Mommy's voice. All the doctors and nurses was very impressed that he made it through the 24 hours. We had many beautiful moments of his smiles and adorable faces. Today we also had several visitors that got to see the Joy in "Little" Charlie.
Tonight we had several scares. He is having a hard time breathing and has moments were he would stop breathing and Daddy would be quick on his toes to get "Little" Charlie breathing again. "Little" Charlie is so strong and he is not going to go without a fight. We don't know how much time we have with him but we are letting him know that he is loved every moment he is with us.
I wish I could tell you more but at this moment the doctors are just telling us to just give him unconditional love and enjoy every moment with him and this is what we are doing.
I have witnessed a lot today and I believe that the Deebs are wonderful parents and I am blessed to be a part of their lives and a part of precious "Little" Charlie's life. I know that he has and is going to touch so many people's lives.
Again thank you for your prayers and support. The Deebs need it and thrive off of it.

God Bless,
Brenda

Day 1

I just came back from the hospital and it was such a joyous day. He is truly a gift from God. Dawn went into surgery at 7:30 this morning and "Little" Charlie was here by 7:47 and Charlie, Dawn, and the beautiful baby met us back in the room by 8:15. The surgery went smooth and Dawn is looking great. We baptized the baby almost immediately after they came back into the room. Annie, Justin, and I were blessed to be the God Parents of such a miracle of God. After we baptized "Little" Charlie the photographer came in and began to take pictures. Poor baby Charlie was changed several times and tossed from place to place and person to person while he was having the flash from the camera going off every five seconds. But it was a great time and I know we will have beautiful pictures to capture the moment. Hannah was a GREAT big sister and she held "Little" Charlie lots of times and sang to him when he was restless. It was a beautiful day and tonight the grandparents are taking shifts to be with them so that "Little" Charlie will always be held and fill the love of his family all day and night long.

Many people are asking me what is the prognosis of "Little" Charlie and honestly I am still not sure. All I know is that the first 24 hours is very critical and they say that after the 24 hours they will be able to tell us more. What I do know is that he is a fighter and when I left he was breathing on his own and his heart was beating strong. The Deeb family are taking it minute by minute, hour by hour, and day by day. They are enjoying every moment they get to have with him and is having a beautiful time being a family of four.

They wanted me to thank you all for your prayers and continuos love. It is very nice to have such a great support team.

"Thanks be to God for his indescribable gift!" 2 Corinthians 9:15

God Bless,

Brenda

Happy Birthday "Little Charlie"

This morning at 7:47am "Little Charlie" was born. He is 3lbs 11oz and 17 inches long!! He is gorgeous and has beautiful red hair. Thank you for all your prayers. I do not know a lot more. I just know that the Deeb family is enjoying every moment they can have with him. I will keep you all updated as I find out more.
Brenda

Day before "Little" Charlie's Birthday...

I can't believe we made it... our son with all of his strength and determination is about to be welcomed into this world - if for only a short time.  Today has been an emotional one as we prepare for "Little" Charlie's birth, I know that shortly he will be perfect and in peace; while we look forward to holding our little man, I will miss his energetic ways... We know he likes plane rides, Lucky Dogs from New Orleans, In-N-Out cheeseburgers, and Star Trek... we know he loves his big sister and his daddy!  His responses and the fact that he made it through 37 weeks are part of the blessings that we count.

Tomorrow I will be handing over the blog to Brenda, one of his Godmothers to update until I am able.  We will be delivering C-section very early in the am (have to be at the hospital at 5:30 am) and should have him delivered by 8:30 am. 

We cannot thank all of you enough for your support, prayers, and love through our journey, I know that many of us had not heard of Trisomy 18 before "Little" Charlie came into this world and he has had such impact in so many ways than are bigger than him.

"For now we see in a mirror, dimly, but then we will see face to face.  Now I know only in part; then I will know fully, even as I have been fully known.  And now faith, hope, and love abide, these three; and the greatest of these is love."  ~ 1 Corinthians 13:12-13

All of our love,

Charlie, Dawn (Alise), Hannah and "Little" Charlie 

The Deebs

Week 36.5

Well - today is my birthday and I can tell you that when I turned 40 a year ago, I never thought I would get pregnant.  I had never heard of Trisomy 18 and when I looked forward to my 40th year I had never thought that my heart could burst with joy and break at the same time.  I also had never experienced or understood in my 39 years of truly leaning and depending on my husband, daughter, family, friends, and faith.  I have never had my faith or strength tested as much as I have this year, and did not fully value one day at a time or what was really important.  So as I celebrate the day of my birth and look forward to the birth of our son; I realize that the most important gift did not come wrapped, but in the form of a little boy that could not be loved more but will live less than most.  He has touched many lives but as I felt him grow I know that I will always be changed for the better... a better person, mother, wife, friend, and child of God.  I may not understand the whys, and as a mother, I of course, wish for more time on earth... but I do know that as we look forward to "Little" Charlie's arrival it will be a blessed day and a treasured gift. (Dawn Alise)

Love to all and Merry Christmas ~ The Deebs

Week 36

A busy week for all of us... we had our last official appointment with Dr. Jacoby's office (our OBGYN), the team there has been so amazing and supportive and we cannot thank them enough for helping us celebrate "Little" Charlie's birthday and showing such joy and compassion every week. (Natalie we were sorry we missed you - thank you!) 

We also had our pregnancy pictures on Saturday with Jill who will also be with us on 12/28... we had a lot of fun taking pictures and cannot wait to see how they turn out. 

Also received a call from hospice, the nurse who contacted us, was also supporting the family who was documented in "Choosing Thomas", a Dallas Morning News piece that featured a story about the journey of a family who gave birth to a son with Trisomy 13.  We consider her a blessing as she has understanding of our time and decisions.  This story of this family was also incredible in its timing, as it came out weeks after "Little" Charlie was diagnosed and I believe helped many understand our situation when we couldn't yet explain it.

We are in our last week and I feel that we have battled the impossible by getting to our due date, 12/28.  I will tell you this week gets harder, as I wish for what I can't have and every day is a "last".  We go in at 5:30 am to Baylor Frisco and after that I have no idea what to expect.  I do have other authors for the blog if needed and will keep everyone up to date more frequently.

Again, we cannot thank everyone enough for their love, prayers, support, and faith... I know in my heart that we were given time that we otherwise wouldn't have had.

Have a Merry & Blessed Christmas this week and rejoice in the birth of Christ... it is with His birth, that we believe our son has a perfect life.  ~The Deebs

"Every good and perfect gift is from above..." James 1:17