Sean James Browne-Keating

The Journey of life for my treasure, the path we travelled together.

Seán James Browne-Keating

Sunrise 2nd March 2008 - Sunset 26th November 2008


We had just moved into our new home, and everything in life, seemed like a adventure, we were in love, we had a beautiful new home and on the 16th june i found out i was pregnant, but i knew before i even went to the doctors. 3 months before hand i had a miscarraige at 12 weeks and all i had wanted was a baby to love and adore and to make our perfect life complete. So when i found out i was expecting again i was absolutely thrilled and so was my partner. I had monring sickness all day and every day but i thought that was the sign of a healthy baby as i had had no previous sickness whilst pregnant before i miscarried, i sheltered away from world as such because i was protective of my growing baby, any ache or pain i was at the doctor,i imagined a boy or a girl, and who would they look like, it was a hard pregnancy with many urinary tracts along with bad skin and back pains, i worked overtime as our new house had a fine hefty mortgage, at 35 weeks i went into hospital with swollen legs and feet and they told me that i had 5 pluses of protein in my urine and that i would need to be induced as i had a bad case of pre eclampsia. Even though the doctors were eorried, i was so excited that i was going to me my baby. We had chosen Sophie for a girl and Seán for a boy, it was going to be the first grandchild on both sides so the excitment was tremendous for the new arrival. I was only 20 so as you can imagine i was terrified about becoming a first time mum but so excited that i was bringing a baby into the world, and i knew that the love that i would feel would be of sheer honor and joy of what god had given me. At 1.05am on mothers day 2nd March my little boy came into the world 5 pounds 3 ounces with a big head of black( i had never suffered with heart burn) so that was a shock, i can remember how tired i was but so happy that my baby was here, he was immediately taken to the neo natal unit as he was premature by 4 weeks, and they say babies stop groing when the mother has severe pre eclampsia, when they wheeled me into the neo natal to see him i remember the joy i had felt that it said " male of Joanne Browne" that i couldnt believe that something so tiny and wonderful was given to me, and that i had been given this perfect baby. Celebrations went on for days, but that first night up in hospital i was so scared of him, looking back now i grew up so fast myself, Seán was perfect, after 3 days he developed Jaundice and was taking back to the neo natal, i as ye can imagine was devasted , although exhausted because i was a new mum, he started developing sleep apnias, but they did all the examinations possible and treated him with a noraml antibiotic for a cold, i had to leave the hospital without Seán andit broke my heart i lay weeping for him at night after we had to leave the hospital. But after 5 days they said all the tests were clear and we were allowed to take him home, i was as proud and happy as you can imagine. I changed him and bathed him at home, and my life was perfect, i adored been his mum, but for some reason deep down in my heart i felt something was wrong. Over Seán been premature he had many check ups and they were always very happy with his weight feeding and general progress. And once they were happy i had no reason to question them, I lived blissfully happy for 6 months and Seán slept in the bed every night with me and his dad, i absolutely ruined him, and he knew at every winge i was would give in to him, after his dad would leave for work while i was on maternity leave i found that he was as much my friend as my son, and my life before was a distant memory i loved been his mum and having him rely on me 100%. He was spoilt where ever he went as he was the frist great grand child on both sides, his father was a only child and i only have on brother, and all great grand parents were alive. Seán drank ounces off bottles and ate bowls of porridge, potatoes, sunshine orange and whatever you gave him. His only problem was to he was floppy. I didnt realise how floppy he actually was until i returned to work after my maternity leave, few of my work colleagues had had babies around the same time as i had Seán, Claire one of them came in with her little boy and he was literally thumping her in the face, i was still supporting Seáns head, it was then i knew that something was drastically wrong, i went to my local gp who had seen Seán on various occasions before and she agreed that his progress was slow, i asked her to arrange a private appointment for Seán which he replied would follow a 10 week waiting list. I knew deep in my heart that something was wrong, sleepless nights watching him sleeping. my father was involved in a local sports club and he said that the physio there that he was almost positive his wife worked in the baby ward as a doctor in our local hospital, at this stage i just wantd to have Seán seen, i had self diagnosed him as having low muscle tone, hypotnia, and worse case scenario i thought he may not walk and that was not even worth thinking about, the physios wife Deirdre was in fact a baby doctor and she called me back and agreed to see Seán. I met her in her husbands surgery and i knew then that something was wrong, the following day she arranged a appointment in the Cork university hospital with the main neuroligist, i went home and prayed that everything would be ok, i gazed at him as he slept, at this stage when he woke in the mornings and i was still asleep he would stroke my face until i woke, and the minute i wuld open my eyes he would laugh, laugh so happily. That monday my best friend michelle accompanied me to his appointment, Seáns dad had work and my parents were on their 25th wedding anniversary holiday in Lanzarote. as i walked into the hospital that monday 6th october i cried uncontrollably that Seán may have to stay in over night for tests and the thought of him having to stay in hospital was unbearable. I met the neuroligists understudy Adrian and he asked me questions about Seáns lack of leg movement, and asked did he kick alot when i carried him, and could there be any chance myself in Seáns dad could be related i answered the answers whilst laughing at the idea of them thinking we were related. The neuroligist came in and looked at him Dr Olivia O'Mahony a fantastic, brilliant doctor, she looked at me with this lost and empty look on her face, and replied that Seán was a very very weak little man, and what time would my partner finish work as she needed him to come up straight away to talk to us togther, they then brought me down ro a nerve and muscle specialist, i knew that my worst case sceanario of Seán never walking was nothing to what they were going to tell me, i watched as Seán lay on my legs as they poked and prodded him. Seán dad arrived and after maybe 10min of waiting Olivia came back and told us that she was 95% positive Seán had wernig hoffman disease, otherwise known as sma and she was fairly sure it was type one. I said sma is a formula milk, and she said yes but its also a genetic terminal illness. i asked her straight away what was the life span and she replied with the most been 18 months, i remember as she spoke the tears felt like fire on my face and i watched as Seán slept peacefully in the cot surrounded by the new winne the poohs i had bought him as a im sorry present for him having to go into hospital, The neurologist had her hand on my shoulder saying it was not my fault that it was just unfortunate we both had the sma gene, and that they would make Seán very comfortable when the time came, that night i remember clearly, after all our family left the hospital, i started grieving my baby as he lay well, smiling and cooing in my arms, he slept and i drowned him in my tears, i vowed i would tell the world for all my days how wonderful he was and how truly grateful i was to have him, we left the hospital the following day after his diagnoses, and continued with our lives as if that day had been a nightmare, my parents flew home from lanzarote, and we were told that a sniffle to Seán although never sick could be fatal. I even went back to work, and we continued living in a bubble, i bathed Seán every night and changed his oufits numerous times a day, and i would watch him sleep every night and turn my pillow upside down as the tears would seep through,i smelt him and smelt him until i had his smell fresh every time, We took Seán to the hospital on day visits and they were very happy with him and said that the next 10 weeks would tell alot and we would need to have the equipment, suction etc ready for our home. The doctors organised for Seán to be in for 3 nights in hospital so they could show us how to suction, and put in the tube for when the time came, even though he was very well, he got injections to boost his immune system. i met a girl from Cork Susan who i am now very good friends with her baby Owen had died few tears before hand at 5 months from sma type 1, bar here there was no one else in Cork who i know of.I had My friend Elaine get Seán a "big boys" outfit on a trip to new york, unknownst to anyone, i was preparing, and nights while i watched Seán asleep i prepared for the day , night, he would be taking, and where he would be buried and how i would plan the mass and honor him. 7 weeks after he was diagnosed, i went to work for a few hours, and my mum used mind Seán as i worked i rang to ask her how he was and she said she thought i was best off bringing him to the doctor, we tip toed around Seáns condition and decided that talking to one another about what wa going to happen to our handsome man was to painful to imagine, my parents are only 47, my mother had been made redundant from her job after 27 years the friday before i had Seán so they were thrilled and as proud to be grand parents. So that tuesday i came outta work and the minute i saw him in his in the night garden tracksuit with his tired little face, my little boy who was so happy for 9 months looked tired and fed up i brought him to the hospital straight away with those tears of fire falling from my eyes, and i could feel the pain and agony of my little boys path hitting as a reality, he was breathin so heavy and alli wanted to do was give up my own lfe to make him well, they confirmed he had a chest infection and would start immediate antibiotic. The doctors were happy he was improven and that night he even had some sunshine orange and juice, His dad left the hospital and said he would be up in the morning. Seán wouldnt settle and was absolutely exhausted his nurse Christine said if he had some sleep he be ok, at 12am she decided to tube feed him for the first time a ounce of mik, to settle him, he aspirated after it , they reg doctor ran down and took him away as his heart rate was dropping, he was so uncomforatble looking and i couldnt make it right i prayed to good to help him i begged and pleaded. They revived him and said if he slept he would be fine, he later aspirated again and this result in a collapsed lung. Seán just lay there with this just let me go mum look in his face and breathed very heavily, his neurologist arrived and i asked her what should we do and she replied that she thought it best to give him morphine and if he was ready to go he would, He lay the resussitation room, and i smelt him head to toe, i had lived seven weeks of the night mare that was after arriving, i went out into the hall of the hospital and knelled and prayed to god to take him and to save him from anymore pain, i went back in and told Seán that if he was ready to go, the he should, My family arrived and the doctors gave Seán the morphine, the nurse sat him in my arms and i rocked him in my arms as he left the world, he sweated from the morphine, he passed into heaven and 9.05 am and whilst i rocked him i imagined how he would have looked on his 1st birthday, communion confirmation and as man, i remember the day he was born and i told him that we would walk togther again.
I bathed him and put his johnsons on him and dressed in the outfit from new york, I slept with him for his final 2 nights, and i buried him with my father parents, the day of his funeral i did what i promised him i told stood up and told the church how thankful i was to have had him in my life.

I would live my life again and again to have those 9 months with Seán each time.
i believe all babies choose who their mothers are,
I dont think its goods work that babies like Seán with sma are taken, i believe that they have to be born and they chose us to be our mothers.





But above all i want to thank my Little boy Seán for showing me the true meaning of love,

And for filling my llife and soul with happiness,

You were and will always be my biggest achievement of this world,


I love you my little man,
Sleep tight and look after us all,
Well walk together again one day, now that we walked once togther, well never walk alone,
xxxxxxxxxxxxxxxxx

MAY HE REST IN PEACE UPON ANGELS WINGS & MAY THEY ROCK MY LITTLE BOY TO SLEEP AS I ONCE DID.