Raj, Priti and Rishi

Rishi Viraj Peshawaria
07.12.03 - 10.05.04
Raj, Priti & Rishi Peshawaria

A dream come true

When a child is born the first thing that the parents check for is that their new arrival has all his or her fingers and toes. We were no different. Rishi was the result of our first attempt at IVF and having found out that I was pregnant shortly after Mother's day I was convinced it was a sign from God.

I had a fantastic pregnancy, no morning sickness, no aches and pains and I was eating for an army and all the scans showed a healthy developing baby.

Rishi arrived on 7th December 2003 one week before his due date weighing a healthy 7lb 8oz. The labour was comparatively short. Rishi was distressed throughout the labour but the nurses were confident that a natural birth could be achieved. After ten hours of labour Rishi's heart rate dropped and it was decided that an emergency caesarean would have to be done. Although I was extremely frightened the whole event seemed so surreal. I couldn't believe that we were finally going to hold the baby that we so wished for, after waiting so many years.

A week after Rishi was born the mid-wife visited for a routine check-up. That was when the snowball effect first began. She felt that Rishi's head looked much bigger than the rest of his body. We were rushed to our GP who, after careful examination, thought he looked fine. All babies have big heads! Two weeks later the same mid-wife told us that Rishi's breathing was too fast. We were sent to hospital and kept in overnight. Subsequently, Rishi under went a multitude of tests and we were given various diagnoses. For all the symptoms that Rishi had, the Internet showed up at least five or six possibilities for a diagnosis but SMA was not one of those.

We were sent to Great Ormond Street Hospital for an EMG and two weeks later, on April 1st we had an appointment at our local hospital. What a day a day to find out that your son has a disease which would kill him in less than a year.

Our Gift From God

Hindus believe that children up until the age of five are embodiments of God as they are sinless and their souls are pure. We truly believe that Rishi was a divine soul. His face was always filled with meaningful expressions and he was the easiest baby to look after. He was so gentle. At bedtime, he hated to be rocked or cuddled, instead preferring to be left alone in his moses basket with his musical lullaby.

When he woke up in the morning, if Raj or myself were not awake, he would lay there staring around the room until we got up. When we would go to pick him up, a huge grin would appear and he would get really excited. He loved new faces and loved babbling to new people, his eyes following anyone around a room. Even now people see his photograph and comment on his beautiful eyes.

Play and Activity

When I read other SMA Type 1 stories parents wrote about how they took their babies away for countryside weekends, I felt guilty because almost everyday for the first three months I was taking Rishi to Cranial Sacral Therapy and Chiropractic. After the diagnosis was made, we pretty much stayed at home as even a short trip in his pram increased Rishi's secretions so much that I had to rush home. At home we found that Rishi loved: -

• Watching Bollywood movies and music videos - These always have bright-saturated colours and colourful costumes.
• His play gym - we bought a colourful play-gym in the shape of a big ladybird. He loved lying underneath it and watching the colourful toys hanging, but if the TV came on his eyes would bolt in that direction.
• Dancing - Often I would turn up the music, cradle Rishi and dance around the room. He loved it...the spinning and turning, the rocking. He even enjoyed it when we lay him across our laps his head on our knees and his feet propped on our stomachs. Then we would hold his hands or feet and make them dance to the music.
• His Christmas tree - As Rishi was born on 7th December we bought our first Christmas tree. In April the tree was bought down from the attic as it is a fibre optic tree and the lights change colour.
• People - Rishi loved exploring new faces with his eyes. When visitors came he would stare at them intently, but after a while he wanted his mummy and that made me feel so special.
• Moo Moo and Gee Gee - Rishi's favourite cuddly toys; a black and white cow and a yellow giraffe. He loved being kissed all over his face by them.
• Helium balloons - Rishi loved to stare endlessly at the balloons.

Surprisingly Rishi hated bath times!

Don't feel guilty if you cannot take your baby away on holidays or to other memorable outings. As Marie, another SMA Type 1 mother told me, not all babies enjoy going out. They are more comfortable in their own surroundings.

Care

Suction & Secretions

Rishi's main problem was the care of his secretions. We found the catheter yankers much easier to use than the plastic paediatric ones, as they were easier to put in Rishi's mouth and less invasive.

We purchased lots of facial flannels for those secretions that drained naturally. They were a Godsend. The plastic "backing" bibs were also very useful to prevent Rishi's clothes from getting wet.

Raj would place Rishi over his knees, faced down to help him breath and drain his secretions. He always seemed so content in this position and as soon as Raj placed him back on his back Rishi would manage a big smile.

Placement

In Rishi's crib, we placed rolled up towels under his head and knees to provide elevation; we regularly changed Rishi's sleeping positions. I have a feather pillow that Rishi loved to lie on as it shaped to the contours of his body and provided him with relief after lying in one position for a long time. I found that he slept better; one reason may have been because it smelt of me and babies can recognise their mother's scent.

My mother-in-law made Rishi a small mattress and pillow which we took everywhere with us so that Rishi would be comfortable.

The Future

As devout Hindus we firmly believe in re-incarnation and feel that Rishi will be sent to us once again, but this time healthier and happier. We also believe that Rishi was a divine soul and that he was sent to us for a reason.

Having struggled so hard to become parents we are determined not to let Rishi's passing go in vain. With God's blessings we will become parents again and with the help of our friends and family we hope to raise funds to find a cure for SMA.

We would like to thank all our friends and family and JTSMA for their support.

Funeral Speeches

We hope that you find these beneficial or inspirational.

From Mummy and Daddy

We would just like to say that when you go home today do not think of us as a family who have lost their son, grand-son, nephew - brother ...Think of us as a family who were given the unique opportunity to look after one of God's little angels. We feel so fortunate that God chose us and entrusted us with such a beautiful soul.

As a family we learnt so much from Rishi. We learnt to be grateful for every day that we have and not to take each other for granted we learnt that it's not about how long you live but the number of hearts you touch in that time, but most of all we learnt that even through pain we should smile, just as Rishi did. If someone so small can be so brave and so resilient, anyone can. Rishi may only have been a small baby, but his personality was larger than life. Every child is unique and special, Rishi, was no different.

Throughout Rishi's illness he always managed to smile, especially while watching Bollywood music videos. Even after vomiting he managed a big grin. At hospital appointments, yes he cried because of the various tests he had to undergo, but as soon as they were over, he would look at us and smile. We always felt like he understood everything and he always had a sense of peace around him.

Whenever Rishi saw his Dad, his face lit up as his sparkling eyes followed Raj around the room. Despite not being able to speak, his eyes said a 1000 words and when Rishi looked at me, there was always a look of unconditional love and understanding. I was the one he wanted for comfort.

When Rishi started gurgling, he was always the centre of attention. Everyone commented on his beautiful facial expressions and Rishi loved seeing new faces, he touched the hearts of so many people with his glowing smile and his magnetic charm. People of every religion said good wishes and prayers for Rishi globally.

Rishi... Mummy and Daddy would like to say please forgive us if in anyway we caused you any pain. We are going to miss you so immensely. In the short time that you graced us with your presence you changed our lives forever and we will be eternally grateful to you. Life will never be the same without you but we know you are no longer suffering. No child should have to endure this kind of pain. Rishi, rest assured that we will do all we can to help find a cure for this illness Your passing to heaven will not be in vain.

Your memory will live forever in our hearts.

For those who do not know Rishi he was diagnosed with Spinal Muscular Atrophy a month ago. This is a genetic disease and at present there is no cure. It receives no support from government funding or the national lottery so in order to find a cure we need your help. 'The Rishi Peshawaria Angel Fund' has been set up in order to find a cure for SMA. All proceeds raised today will go towards the research and hopefully one day a cure for SMA will be found. We weren't the first parents to lose a child to SMA; it would be wonderful if we could be the last.

Throughout the week before Rishi's passing his angel monitor kept going off. The monitor registers a baby's movement and if there is no movement after 20secs an alarm is activated. It has never malfunctioned but in the last week the alarm sounded 3 times, with Rishi alive and well inside his crib. Was this a sign from Rishi? We believe it was his way of warning us to stay alert...

On Sunday night his condition became much worse. I instinctively began to sing the gayatri mantra (A Hindu prayer) to Rishi. On previous occasions when Rishi had been in pain we had always pleaded with God to take Rishi. On Sunday I told Rishi to go. I told him to take God's hands and not to be afraid. I told him that mummy and daddy would always love him but that his work here was done and that now God would take care of him.... and - like the good little child he was ...he listened and went. He actually waited for both of us to fall asleep before he did himself...forever.

Before I finish I would like to read a short poem written by a parent whose child passed away from SMA:

Reading of A Child Loaned

The whole family would like to thank you all for coming today to say goodbye to our little angel.

Rishi wherever you are ...God bless you.

Funeral speech by Rishi's uncle.

If there were only one colour, let us say purple, and the entire world and everything in it was purple, then there would be no purple. There needs to be something that is not purple so that purple can be recognized otherwise it would not "stand out", it would not exist.

From the moment Rishi was born he stood out. In the short time he was with us he taught us some very important life lessons. He taught us: -

1. Courage. Even though he had a tremendous disadvantage from day one, he never once complained and smiled through it all.
2. Persistence. He took it one day at a time. There was no past, no future, just the present.
3. Family bond. There is no bond or love stronger than that of a family.
4. Time. The only valuable thing we all have is time. Do not squander it; instead spend it with the people that are important to us, people we love.
5. It's OK to be different. Do not be frightened to be different.

A candle loses nothing by lighting another candle. Rishi not only lit all of our candles, but also set them ablaze!

As a Grandparent, Parent, Uncle, Aunt, Cousin, and Friend, we say thank you Rishi. We love you, God Bless.

You can also read In Loving Memory.. written by Priti Peshawaria on the anniversary of Rishi's passing on our Inspirations page.