How are you doing?

 A lot of people have asked  how we are doing.  We knew the first year with out Teresa would be difficult especially Christmas day since this is also her Birthday.  Teresa loved celebrating her Birthday with  Jesus.

Ed and I wanted to skip Christmas this year.  Watching the rest of the world go on with so much joy and happiness was too painful since our joy ( Teresa) was gone.  But we knew we could not do this to our other children.  They deserved to be happy and have a joyful Christmas also.   So we have done the best we can in the midst of great sadness to make Christmas for them special.

"How are you doing?"  seems like such a generic question.   Some people use it as a greeting,  not really wanting an in depth answer.   Others can only handle a  response of "we are  doing o.k.",  and yet others seem afraid to even ask.  But there are a few who can see behind the smile that hides the pain and the eyes that can cry no more or the arms that long to hold the one that is gone.  To these friends we  don't need to tell how we are doing because they somehow know.  

The death of Teresa has left a permanent scar on my soul.  It is a scar that I will wear proudly because without it I would not be who I am today.   I lived for 45 years without Teresa and only three years with her.  I did not know what was missing from my life until I had her. I now know so much more all because three years of my life were touched by an angel. 

This journey with Teresa has brought our entire family closer to God.   The journey has been very hard and painful but it also was filled with so much joy with Teresa.    We no longer try to find our new normal.  This is something that will never be attained.   We are different.  This difference does not make us special.  This "difference" was given to us by God. I do not know why nor do I understand why God has taken us on this path.  It is a path that I would surely not choose as my will but one that I will trust in God to lead us on for His Will is always perfect.

Tonight as Gemma was saying her prayers she said,"   Mommy, I know why the Doctors could not give Teresa a new heart,  because Jesus had to give her one in Heaven. " 

I know this is true and I know she will celebrate her Birthday in Jesus' arms , both of them celebrating their birthdays together on Christmas day and this is what we will celebrate with a joyful yet heavy heart.

Ron Lee Davis
~ In this life we will encounter hurts and trials that we will not be able to change; we are just going to have to allow them to change us..

 Billy Graham
~ We cannot truly face life until we have learned to face the fact that it will be taken away from us.

 John Vance Cheney
~ The soul would have no rainbow had the eyes no tears.

Thank you for all of the  prayers, love and support.

One Wish

What would you wish for if you had one wish?

Gemma is the star student this week in school.   She is so excited.  She decided that Teresa would be the star student with her so she filled out the questionaire with information about her and Teresa.

Gemma-  favorite color -rainbow, Teresa-pink.   Gemma- favorite book,Green Eggs and Ham, Teresa- Shoe La La.

The last question was - "What would  you wish for if you had one wish?"

Gemma wished to see what Teresa was doing in Heaven.

This year we decided to remember Teresa by changing our Christmas tree.  It is Pink with pink lights, sparkly shoes, snowflakes, angels, wings , flowers and tiaras. everything teresa loved.

We love you more Teresa!!!!

"Love You More" Heart Home

The "Love You More " Heart Home will be in Beijing China. Teresa loved to say " I love you more" and these were her last words to us.  In Teresa's memory  we want to help other orphans in China who have severe cardiac disease like her. 

Ed and I  have partnered with Little Hearts Medical.  Little Hearts Medical was founded by Tanya and Mike Lee and is an approved 501 c Foundation.   Shortly after Teresa passed away , Mike and Tanya came into our lives.  We quickly became friends and learned that our children had been together for several years in China and were friends in the same orphanage. Mike and Tanya have the same vision as Ed and I about helping orphans with heart disease. We quickly started planning how we could make this dream come true. We traveled to China in September and brainstormed with Serena , Lily, Diana and Theresa from Chunmioa Little Flower on how exactly we could reach this goal.

We established a budget and the steps necessary to open the Heart Home.  We partnered with two Hospitals and four Cardiac surgeons and Cardiac Internationalists in Beijing.  We visited the two Hospitals and helped  train the nurses in post op cardiac care for very fragile children. We visited two orphanages and helped  train the caregivers on Cardiac care for the children.  We also partnered with Philips Medical Equipment in China who has agreed to supply  portable heart echo machines for us  to travel to the orphanages and help identify children with cardiac disease.

We have all the plans in place to open the Home , all we need now are the finances.   It will only cost $ 80,000 to run the home for one year.  This will include;
1.  A 25 bed home with the ability to expand in the future.
2.  5 rooms for poor families to stay with their child while we provide them with the medical care necessary for their child.  We will also train the families on how to care for their children before returning to their homes and provide them with follow up care.
3.  All cardiac surgeries.
4.  Medical equipment, furnishings, medicine, food and clothes.
5.  Nannies
6.  LOVE

After the first years expenses have been met , the Chunmioa Foundation will help to cover the costs of all medical care for the children.

It is only money and when you think about it, it is such a small amount of money that is needed and it will have the ability to help so many children.

If you are able to help us raise the money , there are several ways you can donate.
You can donate through  Pay Pal on Teresa's page or Little Hearts Medical .org page.
Or you can send a donation to : Little Hearts Medical, 20 Apple Tree Ct. ,Baltimore MD. 21228

All for you sweet girl !  You spread your love for others with your hugs and smiles and now from heaven you will help children get the medical care they so desperately need and in doing so you will also help them to have their own families. Then all the children will know the love of having their own families!

Happy Thanksgiving!

Emilia is still in the hospital recovering from an infection.  She has spent 31 of the past 49 days in and out of the hospital. What started out as one infection quickly became another and then another.  For the past 2 weeks she has been battling sepsis, toxic shock and MRSA.  She has endured another surgery  to clean the infection and reposition the pins. She has undergone several tests including several ultra sounds, an  Indium Scan and an Upper GI along with countless blood tests.  She now has a Picc line and a feeding tube to help her regain the several pounds she has lost.

The infection in her leg has finally cleared up.  She now must start eating again to be able to go home. She will continue with IV antibiotics at home for several more weeks.

Emotionally it has been very difficult for her.  When she saw the picc line in her neck and the feeding tube, it reminded her of everything Teresa went through and she was afraid she was going to die also.

Child life has been fantastic working with her to alleviate all of these fears.
The nurses have been so supportive and loving.  One brought her tow trucks after she learned that Emilia wanted to be a  tow truck driver when she grows up.  Another nurse brought her a huge stuffed dog to keep her company. 

Unfortunately she has spent Halloween, her birthday and now Thanksgiving in the hospital.

We are praying she will be home soon and able to enjoy all the chaos, noise and love that being in a family provides. This is the best medicine of all.

Over the past several weeks a lot of people have commented and asked "how do you do it?"
Doing "It" really is not a big issue now.
 Several years ago, as we struggled with "our will" and "Gods will", it was very difficult to do "it".
Now we are resolved to doing Gods will. Once we let go of holding on to our own selfish desires we have found great comfort and peace in doing "it".  Sure we are tired and at times the journey seems endless but we hold on to our faith and hope.

I wish everyone a very happy Thanksgiving with your families.

For us it will be our first Thanksgiving without Teresa.There is so much that I miss about not having her here with me to help cook dinner and all the excitement and joy she had being with her family and just enjoying life. On Thanksgiving day she would start counting down the days to her Birthday and Jesus's Birthday.  She brought so much joy into every minute of our lives , this has been the hardest thing to"get over".  In one way it may be a good thing that I am not home.

We love you more sweet girl...  and we miss you SO much !!!!
I am so grateful that God gave us three years with you here on earth.  

Our Immigration Officer

Almost 4 years ago, someone special came into our lives.
As I was preparing  our paperwork to adopt Teresa, I called the USCIS Office to ask to have Teresa's adoption expedited because of her health.  Cindy  answered the phone on that day.  As I explained to her the health of the little girl we were adopting, her heart was moved to help us.  Everyone in the adoption community knows how important your Immigration Officer is in the  adoption process.  I quickly gathered all the documents that she asked for and Cindy expedited Teresa's adoption in record time.

Over the years we  kept in touch.  Cindy always planned on coming to meet Teresa after she received her new heart.  But sadly that would not happen here on earth, it would have to wait until Heaven.

We were so happy when Cindy told us she still wanted to come and visit.   Meeting Cindy was wonderful.  Through Teresa we had a special connection that drew us together.
Over the week we went site seeing, ate crab cakes,  crab potato chips and crab soup, visited the Cemetery,  had lunch in D.C. with friends who helped to tell Teresa's story to the world and hung out with the Bartlinski Bunch and  Cindy became a member of our family.

We are so grateful that God orchestrated that day almost 4 years ago and  brought Cindy into our lives!
All because of you sweet girl.  We love you more!!!!!

Emilia-
Poor Emilia has had a really hard time.  Since she had her fixator surgery on October 8 ,  she has had one infection after another.
We thought she was on the road to recovery and then on Monday she started with enlarged and painful lymph nodes.  We went to the pediatrician and started yet another antibiotic.   On Wednesday the school nurse called to inform me that Emilia was covered in a red rash.   I picked her up from school and we went  to the pediatricians office.  By now she was in a lot of pain and starting with  a fever.  From there we went to Siani for Dr. Standard to look at her.  By the time we reached Siani she had a 103.5 fever and was covered from head to toe in redness and shaking.  The infectious  disease Doctor looked at her and knew she was in toxic shock and sent her right to the PICU. 

We started 2 more antibiotics.   The Doctor said she was very lucky that we caught it so soon because it saved her life.  

On Friday morning she had surgery to clean the infection from her bone.  The first results have come back and she now has MRSA and osteomyelitis.

The plan is to continue IV antibiotics and treat for mrsa and osteomyelitis  and wait for the rest of the cultures from the biopsy to come back to see what other nasty bugs might be hiding in her leg.

We have been so blessed with wonderfully caring sons.

Emilia ended up back in the hospital last week because the infections in her legs became resistant to the antibiotics.  It turned out that she had two different bacterias.  The one strain was very rare and had never been seen before with a pin site infection.  Her legs became very swollen and it was very painful.

After spending several days in the hospital, our son Alex volunteered to spend the night on Halloween with Emilia so I could go home and help the other girls with their costumes.  On Friday Paul came to the hospital and stayed with Emilia so Alex could go to school.  Ed and I  traveled to CHOP to discuss  Teresa's autopsy results.

Our boys would do anything to help their sisters.  They are so caring and loving.

Going to CHOP to discuss the autopsy was something we had been putting off.  But we needed to do it to bring some closure.  It was very difficult to even say Teresa's name in the same sentence as "Autopsy".

The good news  was we were able to discuss our plans for an upcoming trip. We are arranging for   The Chief of Cardiology and  The Chief of  Surgery from Beijing along with Lily ,   who is the Medical Director for Chunmiao Little Flower ( and who has also been helping us with the Love You More Heart Home),  to come to CHOP and shadow Teresa's team in surgery, caths. and on the cardiac floor.  Our team from China will then travel to Florida for the 2014 Pediatric Cardiac Conference.
This will be a tremendous learning experience for them and we are so happy we could help to coordinate it. 
Our prayer is for our team of Doctors from China   to be able to take back  many new techniques    to help the children in the Heart Home.

Another angel that is helping us coordinate the trip is Teresa W.  She is a very caring RNC who has traveled  to China many times to help the orphans.  Thank you Teresa!

This weekend we have a VERY special guest coming to visit, our Immigration Officer.   Cindy played a paramount role in helping to bring Teresa home in record time.    We have kept in touch over the past three years and we had always planned for Cindy to come visit after Teresa received her new heart.  After Teresa passed away , Cindy still wanted to visit. 

Cindy would like to visit the Cemetery.  We will also do a little site seeing. On Tuesday we will have lunch in D.C. with our producer from The Today Show along with another  very caring person from the Immigration Office.  It will be so nice to see them all again.  Just a wonderful group of people all brought together because of a little girl who had the dream of having her own family.

We Love You More Teresa!

Who will remember George?

George died today.

George died today  an orphan without a family.   He was almost two years old and he  never knew the love of having his own family.

A few months ago we asked to have George moved to Little Flower because of his heart condition.   His orphanage could not take care of his medical needs.

When we traveled to China last month, we were made Georges "Godparents"  because he was so critically ill.
We prayed for George , we advocated for him to find a family and we even thought we should adopt him.
Who will remember George?

George was born with a very complicated heart much like Teresa's.  He was a quiet soul.  He sat and watched everyone and everything.  He was too weak to do much else but he noticed everything.  His eyes were soulful.  He was an old soul.

When we met him he was a little hesitant about me coming too close to him.  He had never seen a person with blonde curly hair.  He would stare at my hair and look around like what is that?
He let me sit next to him but if my head came too close he would cry.   By the end of our first day together he was letting me hold him and feed him as long as my hair did not touch him.
He was smart, loving and so sweet.  We had a very special bond together.  I don't know what drew me to him.  Maybe it was the same thing I saw in Teresa's eyes.  He was different.  He reminded me A LOT of Teresa.  I believe with all my heart that when you live so close to death you become different.  Maybe it is because you walk  such a fine line between this world and the next.  Maybe it is because God has given you special glimpses into the next world.  I do not know but Teresa had it and so did George.

Who will remember George?

My heart is broken once again.  We loved George and were praying for him to be adopted and healed.

It has been a very difficult week.  Gemma received her blood transfusion today. Her counts were very low this month and for the past two weeks she was tired and not her bubbly self.  Emilia came home from the hospital Sunday and was re admitted today because the nasty bug in her legs was resistant to the antibiotic she came home on. On Friday we will travel to CHOP to discuss the autopsy reports for Teresa.  And today we found out that George died.

But we will go on.  We will remember  George and Teresa and all the other orphans that never knew  the joy of having their own family..  We must help the orphans.
We must get the heart home open so we can help children like George and Teresa.
Who will help them? 
It is every childs birth right to be loved and to have their own family.

Who will remember George?... will you?

 

This is George listening to the Taylor Swift Concert  recording that Teresa made  on my phone.  He loved it!

Grace is at the age where she wants to see movies and read books that are scary or have a thriller theme to them.   I have always told her to be careful what she allows into her head. 

When God opened our hearts to adoption this made us aware of the growing orphan crisis in the world. 
And because of Teresa's medical condition we were compelled to partner with others with the same vision to form a Heart Home for the most critically ill children in China.

When I think of the babies we have met over the past few years, I think how lucky they are right now.  I look at these photos and see smiles , love and hope in their eyes.

They are lucky because they do not know they are orphans yet.

And then I think of the older children we have met.
They know they are orphans.  They do not have a family to love them or a home to call their own.  Most do not even have a single possession.
One little girl we met  could not have been more than 8 years old.  She knew she was an orphan.  She stood and stared out of a  window to a world she knew she would never be allowed in.  She had lost all hope and was resolved to just starring aimlessly.  As we told her we loved her and tried to make her smile she could not take the pain of knowing we too would soon be leaving and she would remain, unloved and without  hope.  She raised her hand to block her view of us, it was too painful to look at our happy faces.
We left there feeling hopeless  ourselves because we knew there was no way we could help her. I was very angry at God for putting this experience into our heads.  Why would He show this to us if we could not do anything?
I can not get this little girl out of my mind.  I think about her every day.  I ask God what are we suppose to do?  Why did He show her to us?

What will it take to help her?  Money and love.


This is the reason we return to China,  why we adopt and why we will help to build a Heart Home for orphans. Not because we are special but because once our eyes have been opened to the suffering of others , it is impossible to go back to a life filled with only our own desires and self gratifications. We feel compelled to help.  I remember this little girls sad face and her eyes longing to be loved.
She represents just one of the over 153 million orphans in the world.
Why doesn't the world know there are 153 MILLION orphans ?
Do we just not want to know?  

Please consider adoption.  You have the ability to change a life for the better. If you can't adopt then help someone who can.
I promise you YOUR lives will be changed forever for the better!

 Loneliness and the feeling of being unwanted is the most terrible poverty.-Mother Teresa

Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat.
Mother Teresa
Read more at http://www.brainyquote.com/quotes/authors/m/mother_teresa.html#04rRVi5ghh2gzeZ8.99

Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat.
Mother Teresa
Read more at http://www.brainyquote.com/quotes/authors/m/mother_teresa.html#04rRVi5ghh2gzeZ8.99

Emilia

It has been a crazy week.  Yesterday Adam was born and we had the joy of being Grandparernts for the first time.  Today Mary had oral surgery and then this afternoon, Emilia was admitted to the hospital with cellulitis.   She is being treated with IV antibiotics and lots of pain meds..  We are waiting for the cultures to come back to see what exactly is growing in her pin sites.  Hopefully the antibiotics will work and she will not have to go back into surgery to clean out the infections.

Teresa, we need you to whisper into Jesus's ear a sweet little prayer for your sisters...

Adam Charles

Dear Teresa,
Today was such a joyful day.  You are an Aunt!
Adam Charles Bartlinski was born today weghing 8lbs. 15oz.!

You could not wait for the Baby to come out of Laura's tummy.  You were so excited and could not wait to be able to hold him.  I know you are dancing and singing in Heaven rejoicing with us.  Adam is so lucky to have his very own guardian angel (Aunt) in Heaven watching over him.

I gave Adam a special hug and kiss from you !
We love you more...

Mayzie and Emilia

Emilia and Mayzie have always had a special bond.   When Emilia came home from the hospital , Mayzie could sense right away something was different.  She started licking Emilia's leg and foot trying to bring her some relief from the pain.    She stays by her side all day, sleeps next to her bed and even follows her into the bathroom.  She is an amazing dog, Amazing Mayzie. 

This past weekend we participated in the Save A Limb Ride/Walk for Sinai Hospital and Mayzie proudly joined Emilia.  The 1 mile walk was dedicated in memory of Teresa.

 We don't get to go out too often with all of the kids.  So it was so nice to get dressed up and spend the evening at the Banquet with everyone.

The kids loved meeting Earl Cole ( the Survivor Winner of Fiji 2007).  He was so nice.  The kids got the inside scoop on Survivor although he wouldn't tell us who the winner was this season.

The love and support that the Doctors  and  Nurses from Sinai Hospital  and especially Marilyn (the patient liaison )  showed  to our family while Teresa was at CHOP was truly touching.   Marilyn  came to the house and brought gifts for the girls and a special card signed by everyone at the hospital.  During this very difficult time , it made the girls feel really loved.
We felt very honored when Marilyn  asked if they could dedicate the race in Teresa's memory.

 Teresa had such fun at the event last year.  If felt very odd to be there this year without her.

We have been so blessed to have so many loving , caring people in our life.

Thank you Dr. Standard for giving Emilia hope, love and the chance to run and play like every other child.  What a tremendous gift.  Something that so many may take for granted but Emilia has come so far. She appreciates every step she takes.

Dear Teresa- Arms full of Love

Dear Teresa,
The other night as Gemma was saying her prayers,  she asked me if you were happy in Heaven because you did not have your baby Belle with you .  Every night Gemma kneels down next to your bed and prays.  She always ends with a very long conversation with you.  I know you hear her.

Gemma wishes she could hold your hand forever.

We talked about Heaven and how you don't need "Things" in Heaven.   She still seemed a little confused so I asked her what was the only thing that you were able to take with you as you went to Heaven?    She started to say Baby Belle and then she stopped and said... Love.  

We know Teresa your arms were full of love  from all the "Huggie Huggles"  you gave to everyone here on earth.   I am sure that God was so happy with you as you gave all this love back to Him.

At seven years old Gemma knows that its not the person that dies with the most toys that wins.   The only thing anyone can take with them is love.

Having new "Things" always seem to make us happy for a while.  The latest phone,  a new car, new toys... but they only keep us happy for a while and then we are looking for something else to satisfy this "need" again.

  We can't take it with us.
Love is the only thing that lasts forever.

Teresa , God brought you into our family for a reason.  Yes, it was for you to have a family but it was also for us to learn the meaning of love, unconditional love.
 A love that was able to set you free and  give you back to the Lord because you were never ours to keep. Your light was too bright to keep to ourselves.  God wanted to share you with the entire world.  Now your light shines as bright as the stars for all to see.

Keep spreading your love from Heaven sweet girl!

Thank you all for the cards and prayers for Emilia.  She is home and doing great.  Hopefully she will be able to return to school in a few weeks.
She has a phenomenal Doctor at Sinai Hospital  that has given her the ability to be a normal little girl with two legs that she can now run and play like everyone else. (well ... in 6 months she will be running).  Dr. Standard is Emilia's angel here on Earth.   Emilia has a positive attitude and is enduring  everything she goes through with such a great smile.  Mayzie has really helped her through this last surgery.  She sits by her side and keeps Emilia company all day.  They are an inseparable pair and Emilia takes such pride in "Her" service dog. 

On Saturday our family will be participating in the annual "Save a Limb" walk/ride for Sinai Hospital.  Mayzie will be joining Emilia as she participates in her wheelchair.  And because of an anonymous donor who made a $1,000 donation in Teresa's Memory to the International Limb Lengthening clinic at Sinai, our family will also attend the banquet on Saturday evening.  A HUGE "Thank You " to this anonymous angel!   And a special "Huggy Huggle" from Teresa.  We love you more...