Milestones and Memories

Milestones and Memories

LWR had a “celebration” tour of sorts in celebrating the milestone 10 years in Chattanooga, TN and also in Elmont, New York! We could be coming to a city near you, keep your eyes peeled!

One of the featured young men during these events was young Harsha and his mother, Bharathi. Her story brought so many memories to my mind, that I became overwhelmed during the interview. Bharathi was 24 years old when her son with a cleft lip and palate was born. She talked about the loneliness and grief in caring for her son, in the midst of the questions for his future. Her husband could not bear to see Harsha, and left the family. Bharathi had no family locally that could help her with her children.

She was definitely an example of a strong mother who fought fiercely for her child. She was the best advocate for him. She found a way to get both cleft lip and eventually cleft palate repaired with LWR. She nurtured Harsha and followed Dr. Sathish’s instructions to ensure the best outcome for her son.

In this month when mothers are celebrated, LWR honors mothers like Bharathi who inspire and encourage us to continue the fight, in spite of the obstacles. Keep pressing on,

Until The World Is Cleft-Free!

Inaugural Mission to KENYA!

Inaugural Mission to KENYA!

As I was searching for the final numbers and data collected from the recent mission to Kenya, I could not find any updates on the website. It has been such a busy few weeks since we returned from Kenya, that I did not even blog about it!

Thirty-one members made up this team to Kenya. Surgeons, anesthesiologists, pediatric intensivists, administration and IT support, pastors, businessmen and women, support staff from Vietnam, India, Zimbabwe and the USA gathered in Kenya to make an impact that would last an eternity!

Seventy-seven patients along with their family members were all counseled on the evil of human trafficking. Awareness and education is the number one way to prevent this crime. We can only know the problem once it is identified and explained. Many of the parents who came to the camp never even heard the term exploitation or human trafficking.

Because of the partnership with Anointed of God ministries, Nakuru Level 5 Hospital and other leaders of this community, areas of Kenya will be educated on human trafficking. There were 41 patients who were deemed healthy enough for surgery. Of those 14 were females and 27 were male. Eight of those young ladies were under age 18, and six were adults. Of our young men, 23 were under age 18, and 4 were adults males.

There is of course a list of patients remaining who were sick, or malnourished or too young for surgery. A five-day-old newborn girl named Esther captured all our hearts. Her mother seemed to be in denial, but her grandmother was strong and capable. Keep this precious family in your thoughts. LWR gave them Dr. Brown’s specialized feeding bottles and accessories, and Philip shared with them the need to love and nurture that baby, so that she would be strong and ready for surgery when the time came.

Sometimes the work is hard and heartbreaking, but always the work is reward. Let’s continue the work,

Until the World is Cleft-Free!

Craniofacial Acceptance Month

Craniofacial Acceptance Month

September is Craniofacial Acceptance Month, and I asked Philip what that meant to him. His response was that everyone deserves respect and dignity, no matter what they look like. It isn’t easy to walk around with a facial birth defect, with scars on your face, or with prosthetics on your face. How many people do that on a daily basis all over the world?

They face rejection. It may start at home, or at school, with rejection from family members, rejection from peers. The consistency of rejection is humiliating and degrading, especially to the soul of an individual.

I remember a young man named Ernest that we met in Zimbabwe. He was born with a cleft lip, and his village named him “split lip.” Imagine being called Split Lip for sixteen years of your life. “Split Lip, go gather the firewood. Split Lip come to the chalkboard and solve this problem.”

Ernest never deserved to be degraded. He deserves acceptance and love, just as every single individual on earth.

I hope that you will also stand up and be a voice for these children, who do not have a voice. Another opportunity that you have to support them is at the 5Krun4love on Saturday, September 8, 2018. Register today at www.5krun4love.com!! Let’s work together to share love and acceptance for each child born with facial birth defects.

A Look Back and Celebration of 10 years

A Look Back and Celebration of 10 years

It was on Friday, August 8, 2008 that Santhosh, Philip and I made our way to the Children’s Hospital for Philip’s simple flap repair. This would be a 45-minute same day surgery, and we would be discharged home later in the afternoon.

But in that span of time, Philip’s airway closed, and emergency resuscitative measures were taken. He was placed on a ventilator and sent to the PICU, as we waited outside with terrified hearts.

It seems a lifetime ago, but I remember it like yesterday. The tears, the anguish, the unknowns and the questions. I would never wish this on anyone. However, as I counsel parents during the LWR missions, inevitably these memories will come back to mind.

Every successful surgery is a miracle. These are risky children to operate on. But as our lead anesthesiologist said, “If we do not operate on this child, then who will? How long will they have to wait for another mission team to come?”

As we reflect on the miracle of Philip’s life over the past ten years, we cannot help thank God for each breath each day of life. He had multiple surgeries after that one in 2008, but with each, God gave him life and a swift recovery.

With every surgery, every heartache, and every bit of happiness the focus does not shift for Philip. His words continue to be, “We will work, until the world is cleft-free!”

Thank you for your support and for believing in this vision!

Promises Made, Promises Kept

Promises Made, Promises Kept

The tears have been endless for the past month. I can’t believe it has been one month, since my baby boy passed from this world. I miss him so much.

No parent should bury their child. It should always be the children who pick the coffin and make the funeral arrangements for their parents. But just as his start-to-life was with challenges, so it was with his end-of-life.

I see him everywhere, in every thing. I think of him driving with me. I think of him coming to hug me in the mornings after waking up. How he would come after me and ask, “When are you writing your next blog?” I remember the nights I would sneak to his room to see if he was sleeping with that triangular CPAP face mask. And how I would laugh when I saw him sleeping on his stomach, his face and mask planted into his pillow. But sleeping so peacefully.

I miss his joyful laugh. His strong, steady voice that soared while he strummed his guitar. Even though I scolded him for taking food to his room, I look for those dirty dishes now. I remembered how I would hold his face in my hands and whisper into his prosthetic right ear. It was our game we would play. “Can you hear me?” I would ask him. He would squint his eye and strain his left ear to try to hear what I whispered. He would always guess the “I love you.” And he guessed that one right. Then, I would tell him, “Don’t worry, Phil. One day your ear is not going to come off, and you will have perfect hearing in two ears.” And he would respond, “I can’t wait.” He believed the Word of God assuredly.

I wiped the tears from my eyes this afternoon, and I thought about the promises and assurances that are found in God’s word. Suddenly, my mind went back to August 10, 2000 right after Philip’s first surgery to place his feeding tube in his stomach. Dr. Carr came out to see us and cautioned us, “Philip needs to have a tracheostomy. His airway is small and he is having difficulty breathing. So we can create a hole in his windpipe to help his airway.” I could only say one word. “No.” Over the next few days in the NICU, I would tell myself, “We will not have a trach in our house ever.”

“Did I honor those words you spoke?”  I sensed the Lord asking me today.  

These 19 years, Philip went through 25 surgeries.  Though his post-op experiences were challenging, he never had surgery to place a tracheostomy.  His speaking, singing, his health all could have taken a different turn if we had that trach. 

Then, on that horrible day on October 17, 2019 when his heart stopped beating and his frail body was fought for with CPR, again the trach reared its ugly head. The trauma team rushed to Santhosh and said, “His airway is small and we can’t get the tube down. We may have to cut his throat for a trach.” Miraculously, they were able to get the tube down his throat to avoid a trach (though he lost his 2 front teeth in the process).

As I reflected on all these events, I could only answer God, “You are so faithful, God. Thank you for answering my prayer.  For 25 surgeries, the outcome could have been different.  But you were faithful to me all 19 years.  And you answered my prayer.”

This was yet another reminder for me, and I hope for you, too. God is not like humankind. He keeps his promises. He is the same unchanging God. If you received a promise spoken over you, continue to hold to it.

One of my favorite verses is from Isaiah 55:10-11

As the rain and the snow
    come down from heaven,
and do not return to it
    without watering the earth
and making it bud and flourish,
    so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
    It will not return to me empty,
but will accomplish what I desire
    and achieve the purpose for which I sent it.

There may be questions, and there may be tears, but don’t let go of the Promise. It will achieve its purpose, just as the rain comes down from heaven to do its purpose on earth.

God bless and Stay strong!

A Look Back and Celebration of 10 years

A Look Back and Celebration of 10 years

It was on Friday, August 8, 2008 that Santhosh, Philip and I made our way to the Children’s Hospital for Philip’s simple flap repair. This would be a 45-minute same day surgery, and we would be discharged home later in the afternoon.But in that span of…

Craniofacial Acceptance Month

September is Craniofacial Acceptance Month, and I asked Philip what that meant to him. His response was that everyone deserves respect and dignity, no matter what they look like. It isn’t easy to walk around with a facial birth defect, with scars on…

Inaugural Mission to KENYA!

As I was searching for the final numbers and data collected from the recent mission to Kenya, I could not find any updates on the website. It has been such a busy few weeks since we returned from Kenya, that I did not even blog about it!Thirty-one members made…

Milestones and Memories

LWR had a “celebration” tour of sorts in celebrating the milestone 10 years in Chattanooga, TN and also in Elmont, New York! We could be coming to a city near you, keep your eyes peeled!One of the featured young men during these events was young Harsha…

Promises Made, Promises Kept

The tears have been endless for the past month. I can’t believe it has been one month, since my baby boy passed from this world. I miss him so much. No parent should bury their child. It should always be the children who pick the coffin and make the funeral…

Love Reading about Christmas Miracles!!

Love Reading about Christmas Miracles!! Don’t you LOVE Christmas miracles? I’ll tell you one about a poor husband and wife who lived outside of Bangalore, India in a rural village. They had a happy dream of a new baby to be added to their family….

Love Reading about Christmas Miracles!!

Love Reading about Christmas Miracles!!

Love Reading about Christmas Miracles!!

Don’t you LOVE Christmas miracles?

I’ll tell you one about a poor husband and wife who lived outside of Bangalore, India in a rural village. They had a happy dream of a new baby to be added to their family. All their goals, all their wishes were placed in the future of this new life.

Fast forward nine months, and baby boy Rehan was born! But the mother wept when she saw Rehan for the first time. His lip was separated in two sections of his mouth. He was born with a bilateral cleft lip.

The father wept when he saw Rehan. And he returned to his hard labor job to earn his $2 a day. The grandmother also tried to pitch in by earning from some street vending job. It would be many years before this family would be able to afford a cleft repair for baby Rehan. He would have to live in humiliation, grow up ostracized from his peers.

When Rehan turned 8 months old this December, his parents learned about a free medical camp for those born with facial birth defects. They met the Love Without Reason team of professionals, and soon Rehan was scheduled for surgery. The 500th surgery for Love Without Reason!

The journey to this Christmas miracle has been revolving in my mind for days.  In December 2007, Santhosh and I had no idea of the work involved in forming and running a nonprofit.  We spent the next 5 years researching, studying, learning from mistakes, and working hard.  In 2012,  the first surgeries began in Bangalore.  In  April 2014, I resigned my job as a nurse practitioner to work full-time for LWR, (meaning un-paid at this time)!  I wondered many times if I had truly heard from God, or if I had imagined everything.  My answer came in the summer of 2014, when LWR had not yet celebrated the 100th patient.  I cuddled a one-month old baby boy born with a cleft lip.  The young mother, with tears in her eyes, asked me, “Why did this happen to me?   What did I do wrong?”   And in my spirit, I heard God say, “You asked me the same questions when Philip was born.  Now, you know what to say to wipe her tears away.”

And now, thanks to our donors, supporters and prayer warriors alike, the LWR team will continue to wipe the tears of parents of children like Rehan. Giving. Loving. When they could never possibly pay you back. It’s one of many 2018 Christmas Miracles!!

Click below to hear Rehan’s story! #500thStory

https://www.facebook.com/LoveWithoutReasonUSA/videos/377849873019558

An interview

An interview

As we were interviewed by a gentleman who works to inform the public about non-profit organizations, he asked Philip, “What do you want people to know about your life?” Philip’s response was very simple. “People need to know that God answers prayer. Sometimes He may say yes, sometimes He may say no. But God answers prayers. My parents have been praying for my spine. And every time they pray, I know that my back is getting healed by one degree.”

Santhosh and I were stunned. We did not prep Philip, nor did we even know the questions beforehand that were to be asked. It was God who ‘put the words in his mouth.’

We praise God for His infallible Word. It is full of power!! We will believe and hold to what the Lord says, and not what our physical eyes see.

May the Lord be lifted up through our lives. God bless you for your prayers and support!

Because every child matters!!

Susan

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God is so Good

God is so Good

Hello Friends,

Though summer is a vacation for the children, the parents do NOT get a vacation!! I love to see the kids enjoying themselves, but sometimes it is overwhelming! 🙂

We have been spending some time in prayer, seeking God’s will for our lives, and for Philip’s life. It has definitely been a beautiful time of prayer and revelation. God is so good. We are so grateful for His love and kindness in our lives.

Thank you so much for all your prayers. Philip is doing excellent, by God’s grace. He may have some work done on his eyelid, and at the same time have some teeth extracted in the next few weeks.

I wanted to tell you on Mother’s Day that I was going to begin writing a book about our experiences, to be a blessing and encouragement to other parents out there with children with CF syndromes. Unfortunately, I did not get to start it in May, but I have started it now. Please send out your encouragement or thoughts that may have helped you in your own life issues. I cannot wait to see it out and published!

God bless you all and strengthen you for this week!

susan

filed under: Blogs

A God moment?

A God moment?

In the preparations for the Trinidad mission trip, members of our church have met for prayer and intercession. Last Tuesday as Sam, Sheaba, Philip and myself were gathered for prayer, we somehow got on the topic of ‘choose life’ and the recent bible study we had with Pastor Michael. The study topic was “Dealing with Sin.” We talked about death and life. In speaking about life, our reference was from Romans 6. I did not have my notes with me, and just shared ‘obedience’ as the starting place for choosing life, because that was the only point I could remember at the time of the prayer. Then I mentioned what I thought could follow obedience and that was righteousness and holiness. Suddenly, while the three of us are trying to think of the correct order of the points, Philip pipes up and says so ” obedience unto righteousness and righteousness unto holiness and holiness unto life, right?” You should have seen our faces with mouths wide open.

To this day, I do not know how Philip knew the correct order and the key word “unto” which I did not even mention during the prayer! He was not at the Bible study when Pastor Michael was here. I believe it was definitely a “God moment” and we were being reminded through the mouth of this child.

This is actually what Philip has studied and prayed for. He memorized several of the first few verses of Jeremiah chapter 1, where the Lord calls Jeremiah into ministry and tells him “I will put my words in your mouth.” I believe the Lord has started His work.

Today I asked Philip how he knew those four points of “Life.” And his response was “God told me.”

I believe him.

God bless you and may He strengthen you to do his mighty will!

filed under: Blogs