My Princess Danielle

My name is Frederick Seah, my wife Rebekah , and my elder daughter Beth  and Danielle. Danielle has been suffering from a medical condition called SMA - spinal muscular atrophy. Her muscles are  unable to develop as she grow older. This results in her severe immobility  which affected  her respiratory system and her digestive system. She is unable to move, breathe and to feed herself without the help of machine and from helpers. Presently there is no cure to her condition. It been a ten year long journey,and we know that these ten years had been a miracle for Danielle and for us.  Ten years ago, the doctor said that she can last only at most two years. But the goodness of the Lord allowed her these extra years. The condition affects her mobile  ability. This paralysis requires 24 hours of constant care. From wiping of her tears(yes, she crys because like you, she can feel, she can sense and she gets hurt),  to turning her body constantly to cha...

Danielle with her new Bipap Machine As we look back the year 2014, we were filled with thanksgiving and gratitude. Though along the way there still a few challenge moment but we still want to  Thanks the Lord for His Faithfulness to answer our prayer and without fail to shadow us with His unconditional Love . Last year, we brought up a cause to purchase Danielle's Bipap machine. Many people came fro to contribute and we were able to raise fund to purchase the bipap machine. We are so touch for their love and generosity. Our heartfelt thanks to the donor, friend and individual that supported us.   With the new year, we will also have new journey to embark. Due to the increase demand care for Danielle and Beth's our elder daughter demanding school work. Not forgetting our helper showing sign of overload. We decided that one of us have to stay back to be around at home. We had done that two year ago with me staying behind but...

On Sunday 28 Dec 2014, we went to Christmas Party at the Singapore Flyer. There was a fake Santa Claus, face painters , food buffet and good scenery. There was a fish pond near the restaurant, where there is lots of fish to feed. The party was organized by Eunice Olsen and MDAS ( Muscular Dystrophy Association Singapore) Written by Beth Seah. ( Guest Blogger)

On Sunday we brought Danielle out of her room to spend time as a family in the living room. As usual Danielle will quietly watch her video programme while we sat around her. Danielle will watch her sister Beth playing the Xbox game.

In due of the Wonderful Mother day, my Mom, Rebekah was invited to share on Womentalk TV hosted by Eunice Olsen about her journey with me , how she cope taking care of the family, being a working Mom and still living a fulfilling life for herself.    I'm so proud of her. Happy Mother's Day to You and to all the Wonderful Mother out there too. http://womentalktv.asia/video/womentalk-s02-e01-rebekah-choong-singapore

Over the past few days, Beth , Danielle's sister has been faithfully helping her watering the plant. When I present her the plant, Danielle was not in the mood to view the plant which had grown so much. Danielle's condition for her running nose for the past few day is also quite stable.There no recurr of the episode and we're keeping our finger cross  that finally able to put her running nose episode to halt. In attempt to put this episode to a halt, we did quite a fair bit of things from changing her Cow milk powder to Goat, adjust her cough assist and bipap machine pressure setting and change her flu medication.  

  Growing green bean- homework for Danielle given by her teacher. We also added new word "Water Plant" to her comm book. Every day we will encourage her to water the plants and watch them grow.   Another masterpiece finger paint by Danielle and the colours of the flower was choose by herself . Also at the sametime showing  her the numbering 1 to 5.

Recently I came across this blog that the Mom- Maria Lin shares about her struggles of raising up a special kid. She shares about 7 things that you don't know about special need parent. 1) I am tired 2) I am human 3) I am jealous 4) I am scared 5) I feel alone 6) I want to talk about my son / its so hard to share about his son 7) I wish you would stop saying 'retarded', 'short bus', 'as long its healthy...' Through her sharing it made me feel that I am not alone as I can identify with those 7 things listed. click on this link to read more about her sharing.

While filming this video, she actually stopped moving her leg and contiune once I stop filming her or move the camera away. Her tolerating of being incline more than 10 degree had improved. Hoping in due time, she will be able to situp.

Just to share this wonderful song.I last remember this song was from the movie title: Cool Running. Few weeks back, my elder daughter Beth was practising it for her school performance. The lyrics somehow ministered to both me and my wife that God is saying to us, that the storm going to be over soon and the road ahead will be much easier. Enjoy the song and May it too minister to you. That in whatever circumstance you are going through right now, the storm will eventually be over and it will follow by much clearer sky and sunny day.

Almost everyday without fail, I'll do mouth therapy for Danielle. Just to share some her funny facial expression. Due to less usage of her mouth for oral feeding, the muscle around her face get tense up. Before hand it take us quite awhile to loosen up the muscle around her face.

We had a mini Christmas celebration over my wife's sister place. Danielle dress to the occasion and the colorful dress was a gift from a friend.

Just like to share this Poem of Blessing God Said... If you never felt pain...then how would you know that I'm a Healer? If you never went through difficulties...how would you know that I'm a Deliverer? If you never had a trial.. how could you call yourself a overcomer? If you never felt sadness.. how would you know I'm a Comforter? If you never made a mistake..how would you know that I'm forgiving? If you knew all...how would you know that I will answer your questions? If you never were in trouble... how would you know that I will come to your rescue? If you never were broken... then how would know that I can make you whole? If you never had a problem..how would you know that I can solve them? If you never had any suffering...then how would you know what Jesus went through? If you never went through the fire...then how would you become pure? If I gave you all things.. how would you appreciate them? If I never corrected you...how would you know that I love you? If you h...

This shoes was a gift from a friend. Trying it out on her before her feet get oversize. Within me, know that Danielle may not be able to walk with the shoe on.

Just to want to share this team of father and son competing in marathon and ironman. The Rick and Dick hoyt team - After seeing their video, it really inspire me that with Love there nothing that you cannot do. You know ,when Danielle was diagnose with SMA and she will have difficult taking care of herself. I actually have the thought of pushing Danielle, to finish a marathon or any race event. Just to show her that even with her disability she still able to carry on living as a normal person. But that has to wait till she is strong enough and also I'm fit enough to finish the distance. May this sharing be a inspiring to you that with LOVE, there nothing that you cannot achieve.