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Ty

provides support for this child

 

 

I don’t know the date when I found that I was pregnant.  I thought that I had the flu.  I remember feeling dizzy a few days before when I was at my Tai-Kwan-Do class.  I woke up in the middle of the night as the exercise was too much for me.  I felt sick.   Not long after, I discovered that I was pregnant.

My husband, Tim Bethel, and I were overjoyed that ‘we were pregnant’.  I had a healthy pregnancy.  I did not do any tests to find out if my baby was normal because I would not terminate a pregnancy anyway.

Ty’s birth was breach, so we were told that a C-Section was the next step for us.  Ty was due in mid-October 2004 but our C-section was scheduled for September 29th.  Little did we know that much later we were in for a shock.  Why?  Our beautiful little Ty boy was born and we were in Heaven.  We were star-struck with his beauty and we drank in every breath of him as he ate, drank, and slept.  I will always believe that God did not allow us to find out about Ty’s specialness until a year later because when Ty was a week old, we were laying in our bed with him just staring at his little form when Tim’s mom, Joan Bethel, phoned to say that our brother-in-law, Wayne Lester, had died in his sleep in distant South Africa.  His heart failed in the middle of the night.

My husband had to travel to South Africa for the funeral and to comfort his sister, Tanya Lester.  The funeral fell on what had been my son Ty’s due date.  I think that we were not allowed to know of Ty’s condition because we would not have been able to bear this heavy load upon the grief of losing Wayne.  Ty was a great source of comfort to us as we tried to process this loss.

We all enjoyed having a new life in the family to celebrate and a reminder that life moves on.  I believe that many things in life are chosen for us and sometimes we don’t understand what our trials represent until our story is unfolded.

When Ty was due for his one-year checkup, I went with him to the doctor.  My mother-in-law drove me there as Tim was busy at work.  Little did we know that this was a strategic move on her part as she knew it was likely my son had Down Syndrome.  My sister, a nurse, had detected a telling feature of little Ty’s hands which led her to the conclusion that the child was Down Syndrome.  It was thought that we should take the child to be tested; but no one had the courage to come right out and tell us that the child was likely to have Down Syndrome and we did not see that in our son.

For one year, Ty lived his life as a ‘normal’ child.  Then the doctor broke the news to us that Ty had Down Syndrome.  It was horrible because family confusion combined with a well-meaning plan on the doctor’s end left us feeling angry, blind-sided because everyone seemed to ‘know’ but us!  We couldn’t handle that the doctor pretended to know that he suspected it earlier when, in fact, my sister had enlightened him to Ty’s condition.

This is the path of grief, isn’t it?  When we die a form of death, moving from one ‘reality’ to another:  reacting to the shock and sheer pain of our circumstances.  The face of grief takes many forms and only when we can sit and rage and cry and scream can we often come to grips with the naked truth.

The next few years were filled with the roller coaster ride of learning and accepting that we were the parents of a Down Syndrome Boy.  Not the fairy-tale that we signed up for, is it?  We all do it.  We don’t really believe that we will be the ones to endure these things and yet this is real life and it happens to real, ordinary people just like you and me.

We tried to tackle this life that was chosen for us and had loving family to support us and join in the new journey of Ty’s story.

We did all the usual therapies with Ty and fumbled on our way through the maze of the Special-Needs-World of which we were now a part.  I remember sometimes feeling so much like a festering wound when I had to go into large crowds with Ty because I felt like everyone could see my heart pulsating as I tried to enter a room of normal kids and feeling Ty’s life would never be normal, and then feeling ashamed because I felt bad for not treating Ty like he was just as valuable as any normal kid!

You see, 80% of Down Syndrome babies are aborted because society thinks that if you are not perfect, you are not valuable.  Therefore, learning to face the lies and myths of this deception is actually coming to grips with the sacredness of life as God sees all of us.  It doesn’t matter whether or not we have limbs or no limbs.  Whether we have disabilities or are considered the fittest or the most beautiful.  Whether we are blind, whether our intellect serves us well or we are only capable of rocking bath and forth.  Life is sacred and when we are forced to deal with the fractured or broken aspects of the human condition, this is when we must face how we really feel about our own lives:  we feel exposed, vulnerable.  When we don’t get perfect.  We somehow feel like this is a reflection on us; then the guilt of our feelings only serves to compact our grief.

As we learned, accepted and dealt with Ty’s life reality, we began to see the great undertaking and responsibility of what it would entail.  We gradually got used to idea.  We started reading books and I, personally, started realizing that maybe this was a part of God’s plan for my life.  When I looked back even from that vantage point, I could remember having met two beautiful Down Syndrome people.  One was a baby that my friend and I would babysit, the other was an adult.  God had given me little glimpses into my future.  Ironically, I always gravitated to the underdog, the disabled, the orphan.  I was able to identify with their life as my very own had not been perfect, to say the least.

God also allowed me to have a dear sister and friend who would walk the same road as me.   As our lives collided again she called me to ask if I wanted our kids to have a play date.  I hadn’t even told her that we had only then been waiting to find out if our son was Down’s Syndrome.

I walked up to her door, rang her bell, and when she opened the door, she says, “Do you have something you need to tell me?”  God was so kind to allow me to have a good friend to journey along the Down Syndrome road.   When these uncanny things happen, you start to realize that there is such a thing called providence.

Sometimes our lives are prophetic because being a singer and songwriter, I also had written two songs, one called, “Faith to go On” and “Down to the River”.  Both of these songs speak of having faith in the midst of trials and learning to deal with pain.  Providence spoke once again to reveal the road that I wrote about in my songs.  My “Down to the River “ song won a Marlin Award and Ty was with me in the studios when I presented the song on radio.

Little did I know that Ty would soon lead us through a very tenuous journey that only children have the courage to face with courage and faith.  Ty was four when we found out that he had Acute Lymphoplastic Luekemia.

I think we had started at this point to believe that life COULD get better and we were feeling like we could make it with perseverance and a positive outlook.  When Ty started getting sick one day, I remember it was December 2008 and I was in the shower knowing that I had to take Ty to the doctor.  He was making some very strange noises that we came to know as ‘stinting’.  It is when someone makes a grunting sound and they try to breathe.  It was very frequent, with every breath and we could tell this was abnormal.  I was getting ready when I remember feeling a bit strange in my spirit and a verse from the Bible came to me and I started praying:

“The Lord is Ty’s shepherd, He shall not want…”

When I got to the part, “Though Ty walks through the valley of the shadow of death, Ty will fear no evil…”  I remember a dreadful, sinking feeling take hold of me and I asked God, “why must I pray this over my son?”  God was preparing my heart for the beginning of our ordeal.

Ty spent a total of 16 days in and out of Doctor’s Hospital with every conceivable test revealing only a bacterial infection or another fever;  but Doctor’s Hospital insisted that they could find nothing, that Ty was too happy to be revealing anything serious health-wise.  God had also placed in my mind (ever since I had read up on different challenges to Down Syndrome people) that one of them was Luekemia.  And yet God brought this to my mind as we struggled to understand why our son was not improving.  Of course, when I asked the medical staff if this was possible, I was flatly told “No, pediatrics don’t lie!  It couldn’t’ be.”  I suppose that doctors don’t know that Down Syndrome people have a high threshold for pain.  Poor little Ty.

Finally, on the weekend that Ty was released after tremendous amounts of antibiotics killing superficial symptoms, Ty’s fever came back around.  He was having trouble walking properly.  I left the house in a panic and went to the Doctor’s Office and after seeing Ty struggling, the doctor called a Pediatric Haemotologist and we were sent to her immediately after checking Ty’s blood.  We were told that Ty probably had Leukemia or a really bad virus.  I think the doctor knew but was trying to give it to us in a way that we could try to digest it.  She recommended we leave for Miami right away so that we would not lose any time in getting a diagnosis.

She said that we should not treat Ty here if it was cancer.  I was also seven and a half months pregnant at the time with our second child!  When we got to Jackson Memorial Hospital, after we were checked in as an International Patient, we found out within 30 minutes that Ty had Leukemia and that it was acute and he must be admitted into hospital immediately.  Well, you have to swallow this news while your precious child is with you, so you must be brave for him so you don’t terrify him!  Life suddenly got very crazy and surreal.  We just tried to handle this news together and were really in shock.

We checked into the children’s cancer ward and I will never forget, the first day because a band had come to play songs in the play room for the children and I sat there holding Ty, grateful for the music and I just wanted to die.  All I could do was hold my baby and the music started releasing everything that I was trying to be brave about.

When we had to read through the folder on Ty’s cancer in order to sign off on Ty’s treatment, my husband, Tim, read it first as I sat next to Ty on his bed and watched Sesame Street.

Tim read it through completely and when it was my turn, I started and only made it through a few pages when I started to crumble.  The nurse who was in the room almost walked on water to get out of there because she was real plastic, or fake, and couldn’t take the guttural moans of a pregnant mother in fear for her child’s life.

The other lady offered to get me a juice, or a bagel and my husband said, “Please, just let her cry, she is trying to absorb the news.”  What can I say, thank God for love, the love of our family and church.  Faithful people, who literally walked us through hell as we began watching our boy change before our eyes, all the while telling them, thank you, after they gave him needles to draw blood.  Leave it to a special needs angel to have gratitude when most of us would have kicked and screamed.

Ty started chemotherapy immediately and the first month was sheer hell as the heavy doses of steroids erased his ability to be a saint.  His personality was altered by the drugs and it got impossible to try and soothe him.  Steroids are a part of chemotherapy but I don’t know what is worse when the drug can create such horrible side-effects.   After the first month, we were released from hospital to find housing and needed to be in Miami, for the next six (6) months of intensive chemotherapy.

All the while we were trying to brace ourselves to deliver another child.  Logan was born via another C-section and after one night with Logan, my husband had to go back to the Emergency Room with Ty.  Talk about bittersweet!

We were also afraid that Logan could be special needs as well, but everything seemed normal and we had to focus on Ty and try to celebrate our new baby.

I don’t need to decide if there is a God or if God is love because God sent countless friends and family to walk alongside us.  I had so many answered prayers and I would be at home as Tim would have to drive off to the E.R.  every time that Ty had a fever and I would pray for God to meet them and show them his love, and God would send someone, a stranger, a joneser, a person walking a dog, a person in a store – someone – who would randomly come to Tim and say, “Can I pray for you?”

The joneser walked up to Tim and pointed at my son and said, “He is a gift from God.”

We don’t always understand why God allows pain.  I had to embrace and surrender or I would have gone crazy.  I had to wrestle with acceptance as to Ty’s fate because I knew that we could not choose Ty’s life, only God could grant life and death and so I had to choose that God loved me whether Ty got to live or die.  I didn’t know if I could make it if Ty wasn’t granted permission to stay but I knew that letting go was the only way through, along with insane amounts of prayer.

God used dreams of friends to warn us when Ty had leukemia and dreams of friends when Ty was in danger.  I learned to pray, every step, every breath and I would ask God and believe that God knew the future and promised good things.

The best part of Ty’s story is the ending…Ty loves music.  Ty loves to sing and God used a song called, “Your Love Never Fails” by Jesus Culture to tell Ty he was going to be okay.  When I got the news after 3 and a half years of treatment that Ty was free of leukemia, I went to his school and put him in the car and I looked him in the face and said, “Ty, the doctors say that you are all better.”

He looked at me and said, “Mom, all things work together for my good.”

The end of his favorite song says, “You make all things work together for my good.”

So why is it okay to think that special needs people are not bright when a little boy named Ty seems to know and understand God better than any Yale or Harvard graduate?  We use this theory, to abort 80% of Down’s kids because ‘they don’t get it’, well, Ty just proved them all wrong!

Ty will be nine on the 29th September, 2013.  He has already shown the world that “God makes all things work together for his good.”  He has performed his song with me at our Down Syndrome documentary launched earlier this year, with his guitar in hand and raising his hand in praise because he knows where his life and breath come from.