My Sweet Olivia

Our struggles with our second one Teresa Olivia Purba was started when she was 5months during my pregnancy.


It was Christmas holiday that we got a call from my gynae doctor to see him in regards to the blood triple test and amnio test (they were compulsory as we lived in Singapore).
She got a duplication on her chromosome number 3. Doctor could only explain that there were abnormal possibilities that could  happen to Olivia when she's born. Those based on the genetic abnormalities cases  they had in statistic data. It is very rare case in the world with limited scientific record that the doctor could not explain further.


I myself has got trauma in seeing how tough it is to raise special need kid. The idea to terminate the pregnancy (as one of doctor's consideration and it was legal up to 24 weeks pregnancy, there) shook our faith once. But we decided to keep the baby anyway.


Olivia was born on 20 April 2006 thru caesar surgery and in blue condition , could not breath due to the holes  in her heart (ASD & VSD), for the clean and dirty blood were mixed. She was in ICU for one week.


Beside the holes in her heart, Olivia got the reflux in her digestive system, due to her hypotonic muscle condition that cause weak digestive muscle which could not keep the milk and it flew back to up and went to  her lungs. Another her physical condition was the clicking joint hip (left) with the same reason due to her weak muscle condition.


40 Days after Olivia's born we had to move from Singapore to Jakarta. And we had to get back to Singapore for her first open heart surgery (she was 3months old). 
In Jakarta she had difficulties in breathing due to her heart condition and the lungs that always in 'wet' condition due to the blood leak and the milk reflux. It all was just beginning.
We still had to comeback to Singapore often due her health condition and our life was like stranded between Jakarta-Singapore until after her second operation (she was 15 months old).


That time I was doing my thesis while finishing my graduate program and I started to make a bargain with God, that He can either choose me for quitting the thesis or my life to replace Olivia's. I was down on my knees wondering for any single thing could happen to her and asking if these cant be easier for us then give us an extra strength to move on.


If there was a darkness once in my motherhood life, then those periods will be the ones. All the doctors statements (heart's, lung's, neuro's, genetic's, orthopedic's) sounded more to discouragements to me and my hubby. I was seeing my baby during pre operation, in operation, post operation with a lot of tortures, with all those needles here and there, the cables from the monitor on all over her body and other medical machine to support her condition during those periods.


At that time I felt like God was so hard to be understood. Wondering why this happened to us, why He chose us to go thru this.  I felt like so useless in my pray and even sometime I did not wanna pray anymore. I did not wanna expect or hope anymore. I just wanted to quit and giving up on life.


I thought I got those baby blues moments for there was a time I did not want Olivia, neither taking care of her. Life was so burdened to me. I did not have my emotions. I did not wanna cry. I did not want anything in life. Felt like I can cover my self with those numb feelings and hoping it was only a short nightmare.


All the biblical messages and the scriptures I learned were gone.  It might be just one that I remember, that keep on strengthening me those times, it was what my hubby said when we were offered to terminate the pregnancy (and we did not do what the doctor advised), that we walk by faith not by sight, whatever our baby condition we believe that God we know is a responsible God who will never let us to the depth of the misery of life that we dont know.


After the two times open heart surgery operations, Olivia was physically recovered but in very passive condition (vegetative stage) in less than 2 years old with the condition of her sights and hearing like the new born. We had some therapies for her motor skills due her hypotonic muscle, her sights and hearing.


In raising Olivia, the social pressure was another story, either from our external life or even from within us. To bring Olivia to public place such as pediatric clinic, mall, fellowship and sunday school has brought us another new struggle on those periods.


Beside her weak condition (low tone muscle), the way other people or parents look on her always made our heart trembling and mixed between sad, angry, embarrassed and we  have been doing hard to cope with that all these times.


Giving explanations to the extended family has become so exhausting, for not all the people have the same level of knowledge about the medical  and chromosome case conditions.


I used to find my self not wanting to go out with Olivia and separate my life from the crowds I used to know. In fact to stimulate Olivia's mentality and intelligence growth, she must be introduced and 'exposed' to those public places.


We brought Olivia to US when she was 3 yrs for assessing the treatments for brain injured kids. It was a home-based treatment for cerebral palsy, autistic and down syndrome kids. I have been helped by some staff to do this (thank God I live in such country where I can afford to hire those ones).
Those treatments must be done everyday including stimulation for her motor skills such as patterning, inclining,oxygen masking and also her special nutritions program ( in diet and organic material).


For almost a year we did it, Olivia had so many progress, she can stand her neck, we can bring her for swimming,  she response when we talk to her, she can hold and grab her toys, she enjoys watching TV with more responses too, she cries loud when she's hungry.


She must thru another surgery 5 months ago while this blog is made, for her clicking joint hip. Now it is 'fixed'. She continues with another motor skills treatment for learning to sit, speech therapy  and start to have a reading program with the flash cards.
We plan to bring her to German this summer for a stem cell therapy that one of our friend doctor's autistic son has some progressive growth after he had that 2 yrs ago.


Olivia will be 5 yrs on 20 April this year. For last 5 yrs raising her, we have been witnessing such God's grace is real for her and all of us. Never been abandoned once. Always  given such sufficient strength, patience, wisdom to conquer all the storms we face.


We bring Olivia to Sunday school. Although she cant play yet with other kids or running here and there like others on her age, but her presence among those kids and also with sunday school teachers' love and pray really help Olivia's growth a lot.


I once ever read a book about the food for the (baby/kid 's ) brains are oxygen, nutrition, information and love. The most important one that make the brain to function well, to explore and develop is love. And that the only thing we have for not giving up on Olivia.


From time to time we realize those wonderings we had why we are chosen to go thru this or why this is happening to us, we have found the answers that this part of the journey we have with Olivia has been stretching our capacity as parents and shaping our character all the time to be better ones in life.


Yes we have no idea what exactly God's plan by sending Olivia among us, but we keep being grateful for any of her growth that we believe she has so many potentials which yet being explored completely.
I believe for all the things we have been thru with her, she is in God's hands to move toward the excellent growth. And it only happens by extra grace of God.