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A story written with a smile

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Old 10-24-2008, 07:05 AM   #1
Join Date: Oct 2008
Location: halifax england
Posts: 6
leia21 HB User
A story written with a smile

I think its so wierd that my second sons birthday is so close to my first sons. When Tyler arrived i had already been a mother for nearly three years. My first son Ryan, i had had at the age of just sixteen, a strong-willed, funny and loving boy had tought my partner and me many things like how to survive on four hours sleep, the best ways to navigate through a tantrum and how to hide vegetables in everything. But i dont think i came face to face with the true range of what motherhood means to me until september 2007 when Tyler entered our lives.
It was a warm but dark morning, i woke from a really bad nights sleep with pain it was Tyler he was on his way, my pains were not very strong all day and i coped until nine o'clock that evening when my mum and dad took us onto the hospital. Shortly thereafter Tyler came ito the world looking very much like his brother. When the midwife handed him to me i looked right into his tiny face, he was blotchy and had such fat cheeks but he was mine my second beautiful baby boy. We revelled in the afterglow of what had been an easy birth and talked about how lucky we were. We were filled with gratitude for the beautiful family we had created and looked forward to getting home and starting our lives together. When the midwife returned, she asked if she could check him over, i didnt want to let go but that ten minute hold i had before she took him felt like i had had Tyler forever.
"I dont know whether you've noticed" She said
"But he has all the features of a baby with downs"
From where i sit now i can split my life in two. Theres the time before we heard those words and the time after, before we were probably like most people we knew we were lucky, we were healthy so was our little boy Ryan and we had a healthy family. But until we were hit with those words i dont think we had any idea how fragile luck can be.
I knew nothing about about downs syndrome but i had lots of frightening preconceptions. My first thought was what had i done wrong during my pregnancy? I smoked, But i did with Ryan, i did'nt eat very much, but it was the same with Ryan. How could this have happened i sat up all night thinking about how my life had just been turned upside down. Craig my partner did not speak a word all night.
Tyler had tests and tests and even more tests but we were eventually allowed to take him home but only fourteen hours after i had given birth. We had visiters for days and i felt no one wanted to hear about my feelings all they said was "Aw im so sorry to hear that Tyler has downs syndrome" and cooed over him as he was such a small dainty little thing compaired to what Ryan was. When they left i held my blue eyed baby boy, but who had suddenly seemed to have totally changed our lives, i felt i was grieving for the baby i had expected.
Two weeks after Tyler came into the world he bacame very poorly he wasnt feeding very much, he was sleeping every minute of the day and i had to wake him for his feeds which he took only five ml of. I had noticed that from birth his hands and feet and around his mouth was blue, the midwife told us this was because he was nine days early but surely this was not right. We took Tyler to the calderdale royal hospital to the accident and emergency department and as soon as we were seen the doctor rushed him straight down to reesus, he was given oxygen and was on it for ten days because his oxygen levels were really low he also had some kind of infection which they couldnt seem to find, his lungs were inflammed and he had an abnormal heartbeat.
During the ten days me and Tyler were in hospital i really started to bond with him, then on the fourth day the doctor came in and asked if the could do a heart scan, what could possibly be wrong with his heart i thought to myself. In a world of my own i agreed. I sat next to Tyler as his tiny hand clutched mine, mesmorised by what seemed to be a heart on the television screen the doctors talked doctor terms. A few hours later after the they had talked over the heart scan the doctor and a few of his collegues returned giving me the news that Tyler had a lot of fluid in and around the heart and lungs. What was this suppose to mean, i went cold and all i could think about was a tiny coffin with my baby inside.
"Dont worry" said the doctor
"we can sort it"
Tyler was given medication to take and after his oxygen levels had come back up and he was well again he was allowed home.
Tyler was in and out of hospital for weeks on end, he wasnt feeding so was tube fed for over a week. We had to attend appointments in Halifax and Leeds every few days. When we attended an appointment at st James in Leeds we were told that Tyler had a blood disorder that was leading to a form of leukemia, my life was ending, why me, why me i thought im no angel but surely i cant have done something that bad. He had heart scans weekly to see if the fluid was going.
In October 2007 Tyler had an appintment to his pediatrician i walked into the room and i have never seen so many doctors. A doctor we had never seen before asked me to lay Tyler on the bed so they could do yet another heart scan. After they had finished he asked me to take a seat.
"Tyler is going to need an opperation we have found a hole in his heart its called a large VSD" He said as people handed me bookss and leaflets about this heart disorder.
"This operation will be held in Leeds in the next few months"
I left the room absolutly mortified my baby was going under the knife at just a few months old, how would we get through this.
After months of physiotherapy, pediactric care, special milk, medications and appointments upon appointments March the eleventh 2008 came and as we drove down the M62 there was silence Tyler was going in for his surgery the next day.
March the twelth arrived and my throat had a huge lump in it i held Tyler as we were led down to the anasthetic room my eyes streaming with tears and Tyler who didnt have a clue what was about to happen to him laughing. As he lay on the bed clutching my hand he fell asleep with the mask over his nose and mouth.
"I love you little one" i wispered in his ear then i kissed him on the cheek and walked out of the room. I will never forget that that day for aslong as i shall live it was the longiest day of my life time seemed to go nowhere and all we could do was sit around and wait. He was suppose to be down in theatre for upto three hours. But three hours came and went, so did four, so did five then finally a phone call.
"Please could you come to the cardiac intensive care unit ward four Tyler is on his way, the surgeon would like a word"
Six hours after he had gone down to theatre we were sat in a small room waiting for our special little guy, the sugeon came in and told us there had been a few complications he had a hole in his lung and it was hard to get to the hole in his heart because there was a main valve blocking it, but told us not to worry they had managed to sort it but these first few days would be critical. I didnt pay much attension to what he was saying i just wanted to get in and see my boy. As soon as i saw him in the end bed of intensive care tears poured down my face i had never seen so many tubes, wires and monitors, he was attatched to a ventilator which was breathing for him as he was to weak to do it himself and had tubes and wires coming from most parts of his body. The next few days dragged but i was just so happy to see my baby then his lungs collapsed, it was one thing after another the nurse told me this was fine and they had expected this to happen.
After three days Tyler made an automatic u-turn and was in the high dependancy upon the ward ten he started to feed again from his bottles and he was taking his solids.After just six days of being at the Leeds general infermary we were allowed to take him home.
Since Tyler has been home he has done so well he has a scar down his chest but thats nothing, Ryan says its were Tyler got his heart mended. We have good, caring friends and family around us and Tyler is now on the mend he gets every bug going but nothings getting my little tiger down, my baby boy is one hell of a little fighter. We have learned so much from Tyler about the ups and downs of bringing up a child with downs syndrome like the rest of us he has a range of personality, mood and temperment. The future for people with downs syndrome is better and brighter than ever and i am hopefull for my sons adult life.
It has been only a short time since Tyler entered our world and it seems so much longer than ten months. Sometimes i do get down about the might-bes, especially on days when Ryan talks about the plans he has for him and Tyler to do together and i wonder which of these dreams will come true. I have long realised that our luck didnt run out the day Tyler was born. I look at the world differently and consider myself lucky to be able to and we take each small milestone a greater delight.

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Old 12-17-2008, 04:22 PM   #2
Join Date: Dec 2008
Location: Bangkok, Thailand
Posts: 3
tessaandsimon HB User
Re: A sory written with a smile


I'm new to this board, and only jsut read your post. It made me cry!
Our son is only 5 months old and we are lucky to have not needed any surgeries for him, but the way in which you explained how it changed your outlook is so true. have you read the poem "Welcome to Holland" - it gave us and still gives us strength when we get bogged down with things.

That's all for the way, I am English, but live in Thailand.

Thanks for sharing your story.

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Old 02-16-2010, 07:57 AM   #3
Join Date: Feb 2010
Location: North Carolina
Posts: 1
grandmother1114 HB User
Smile Re: A story written with a smile

I couldn't help but cry when I read your story. You are a remarkable person. I have a little sister who has downs. I grew up with her, me being the oldest of six children, and she was the youngest. Our mother passed away 4 yrs ago. She wanted me to put her in a group home, but I insisted that she come live with me. It has been a transition, but she is so loving and caring about people. I have learned there is nothing like a bear hug from her.
I hope that over the next few years that Tyler will bring so much joy to other people like my Angie has to me. May God go with you in your journeys.

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Old 02-20-2010, 02:48 AM   #4
Join Date: Oct 2008
Location: halifax england
Posts: 6
leia21 HB User
Re: A story written with a smile

Hi i just want to say thankyou 4 reading my story and i am glad it has come as some help 4 other people tyler has had a really hard year this past year he was diagnosed with acute myloid leukemia in march last year and has just finished chemotherapy for it he did really well through it all but did have a bad time sum days. Hes now extremely well n has had a great xmas as we eventually got home for it as tyler was an inpatient 4 the treatment i stayed with him everyday for over 6 months. i read the 'welcome to holland' n it was really gud we are all so lucky to have sum1 with downs coz they r just such amazing people i cant imagine my life without tyler
love to you all leia xxxxxx

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Old 05-05-2010, 09:51 PM   #5
Join Date: May 2010
Posts: 1
ramindu HB User
Re: A story written with a smile

We have a 2 month old with downs who sleeps a lot. found yr writing while browsing the net for answers.. thanks for sharing yr story.. would like to read a update on Tyler.
All the best.

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