Emmilee's Story
Emmilee's Story
(6th March 2001 - 9th May 2002)
This story is about our precious little Angel, Emmilee Victoria Tebeck, who was born on 6th March 2001 and passed away on the 9th May 2002, at the age of 1 year, 2 months and 3 days old.
Written by Vickilee Hancock and Mick Tebeck (Mum and Dad)
When Emmi was born she was perfect, and our family was complete. Emmi's big sister, Monique (15 months) just adored her, and would be continually asking to hold her and feed her. The best day of our lives!!!
We noticed that when Emmi was 3 months old she was very "floppy" and wasn’t able to hold her head up. We took her for her check up, and the Doctor had a very sad look on her face. She said that Emmi could possible have Spinal Muscular Atrophy Type 1...We stayed calm, as we didn’t know what this was, and asked a lot of questions. When she explained to us that SMA was a genetic condition and that children usually didn’t survive past the age of 2...We were devastated.
We took Emmi down to Adelaide for blood and genetic tests, and they came back positive, we were once again shocked that this could happen to us. All the questions that run through your mind, it is so overwhelming. What did we do to deserve this?
Mick and I went through Genetic testing, and found that we both carry the gene that causes SMA, and the likelihood of us having another child with SMA is one in four.
We went home and did so much research on SMA and were determined to help our baby as much as we could...How on earth could we just sit by and watch our gorgeous girl die in front of our eyes and not do anything?
Emmilee was always happy, never cried and defied the Doctors odds...They said that she would never be able to hold her arms up above her head and that she would never talk...
Well, Emmi's favorite toy was a Sesame Street play gym which she used to lay under, and with such concentration and determination on her face she would reach up and touch those toys, and then let out an almighty giggle!!! She continued to do this and make us proud.
Then one day I was playing with her, and she was giggling, and then to my complete surprise she said "Mum Mum" I stopped and just looked at her and cried. It was the sweetest day of my whole entire life.
She continued to go from strength to strength and her next word (which was the next day) was "Dad Dad", then "Bub Bub" (which is what she called Monique)
The amazing thing was that she could distinguish people just by us saying their name and she would automatically look at that person and giggle and smile!
Emmilee was put on nasal gastric tube feeding at the age of 8 months, we were also doing physio with her, which she loved by the way, and the most horrible part was the suction which had to be done to remove mucus from her nasal passage as she couldn’t blow her nose. As soon as Emmi heard this machine start up she would cry as loud as she could, which wasn’t very loud, but it really tugged at our hearts.
I gave up work to care for Emmi full time. We had a great support network of Doctors, Physio's, Speech Therapists, Nurses, our local Early Childhood Health Centre, our Friends, our Families and most of all Emmi and Monique. It was so hard trying to tell them what was happening, and we were so strict whenever people came around, everyone had to wash their hands and wear face mask's before being allowed to go near Emmi. We were reclusive and the only person we visited was Mick’s Mum.
Emmi spent lots of time with her Nanna Joan (Mick’s mum) who was absolutely devastated by the news of Emmi’s illness and was the worlds proudest Nanna when Emmi was born. They were so close and totally enjoyed each others company. Emmi particularly loved Nanna Joan giving her “Jiggy jigs” which involved a bouncing game and Emmi would be quite happy to play this all day leaving Nanna Joan exhausted but content at having given her grand daughter so much pleasure.
Emmi’s favorite pastimes were going with Mick for power walks where she would ride in one of those 3 wheel prams and Mick would power walk for an hour each day and Emmi absolutely enjoyed herself and would giggle endlessly when Mick took her over rough terrain making her jiggle about in the pram. She loved Redskins (confectionary) and would spend hours sucking on them and sticking them in her mouth, ears, eyes and hair making an incredible sticky mess but she liked it so we would just clean her up and give her another. We still to this day have the last one she had in the freezer and I don’t think we will ever throw it out. You may think that’s weird but it’s not to us.
Other things she loved were bath time because she could move her legs a little in the water. Some favorite toys included cellophane (not sure of spelling but it’s that transparent coloured plastic that is used by florists etc) she loved the sound this stuff made and would play with it for ages. A piece of gold satin was another source of endless hours of entertainment for her. A little stuffed toy (banana in pyjamas…B1 to be specific) spent many hours inspecting Emmi’s throat. Every thing she got her hands on come to think of it ended up in her mouth. This was obviously of some concern because of the risk of germs but we would just make sure everything was clean. There was no way we were going to stop her from doing anything which gave her pleasure.
She was fascinated by the cat’s ears and would pull and tug on them (and try to put them in her mouth) and the cat was very patient with her.
At Emmilee's 1st Birthday, we hated the idea that she would have to wear her Nasal gastric tube, so we decided to remove it for a few hours. We got some really amazing pictures of her that day. She had on this amazing pink dress which a friend gave to us, and she was the picture of perfection. She really loved that day! Although by the end of it she and we were totally exhausted! Her Doctors and nurses all came to her birthday, and that meant a lot to us.
She enjoyed her day sitting in her pram, as she couldn’t hold her head up, and supervised everyone!
Just after her birthday I decided to help out with Riding for the Disabled, and volunteered 3 days a week for a few hours a day. I was out there one day exercising this horse, Prince, when Emmi, Monique, Mick and Mick's Mum, came out to see me. I trotted over to the fence so Emmi could pat Prince, and she decided his nose was the best place on earth, she literally stuck her whole hand up his nose, and he just stood there and took it. Emmi absolutely loved it, she was all smiles and giggles!!! I was so happy and proud of both Emmi and Prince.
Emmi was only ever hospitalised once and that was for a boil on her head and a mild fever. She was out of there in a week. She hated the hospital...I suppose we were lucky in that respect, about not having too many hospitalisations...Our Doctors came to us most of the time...
On my Birthday, the 7th May 2002, Emmi really enjoyed helping me unwrap my presents, having a little treat of icing off my cake and just generally enjoying having all the family there with us.
The 9th May 2002, Emmi woke me up by doing these cute little "Uh Uh" sounds, that she used to make me wake up. This was so I could turn her over and give her her breakfast. So I got up, gave her cuddles and kisses got her giggling, then she looked at me and said "Mum Mum", "Bub Bub" and "Dad Dad"...
I went to the toilet got a drink for myself and Emmi's feed ready This took me about 5 minutes. I went back into the room, stopped at the door and admired my little girl, then I realised something was wrong. I ran to her, screamed for Mick, but it was too late, she passed away peacefully that morning.
It was the worst day of my life, no matter how well prepared I thought I was, I never expected it to happen, she wasn’t sick. I couldn’t understand or comprehend it.
A bit later, after having to break the news to our family and friends, I realised that it was also my nephews Birthday. I just didn’t know how to feel. It was a very hard day for us.
My nephews mum, Jacqui came over as soon as we told her about Emmi’s passing and was of enormous help with everything for us from doing the dishes to taking care of Monique even though it was her son’s birthday.
The Funeral Director came around to our house later that day and we all sat there in a daze. He was doing the paperwork, and he came to Occupation, he automatically said and wrote down "Angel" we all just looked at each other and smiled. It summed her up to a tea...That one little word...Angel...
The funeral director also gave us a much larger coffin than was needed so we could surround Emmi with all her favorite things which we did including a redskin, teething rusk, balloons, satin, cellophane, a Red Rooster discount voucher which she had been playing with the day before her passing and refused to have taken off of her and countless other bits and pieces. Mick having done many years of martial arts training gave her his “Bushido cross” which is a medallion awarded to him by his instructor meaning he understands the “way of the warrior”. This was Mick’s most prized possession and he gave it to Emmi because he thought she was a better and braver fighter than he would ever be. I gave her my gold heart pendant which was given to me by my dad when I turned 18. It had enormous sentimental value to me and I wanted to give Emmi my heart forever.
Emmi's main Doctor was overseas at that time, and when he heard about Emmi, he flew back to Alice Springs on the next flight. He made it for her funeral, as did all of her other Doctors, Nurses and everyone one else.
My Dad (Emmi’s Pop Dave) came up from Victoria for Emmi’s funeral and he was an absolute mess and became so upset that Mick had to take him to hospital as we thought he was having a heart attack but it thankfully turned out to be angina. “Pop” was, like everyone else devastated by Emmi’s passing and it opened my eyes to the fact that even though I thought Dad was a “big tough guy” even he was reduced to tears by our angel. I love him so much.
At Emmi's funeral, I specifically asked for no black clothes to be worn, I knew that Emmi would have wanted nice bright colours... There were so many people there. Mick’s mates from when he was doing security work, were all there, they all stood in a line, when everyone walked in, just like they would when doing their security work as if ensuring no harm would come to Emmi, it was just amazing. Emmi's favorite song was Meatloaf's "Heaven Can Wait" we used to dance around the house to that song, so it only seemed fair that it was played for her, as well as Bridge Over Troubled Waters and Amazing Grace. It was a beautiful ceremony and was finished off with a releasing of balloons, because she loved them, and then a little get together at our place.
We got pregnant about a year after Emmi died, and I went in for the CVS testing, it came back saying that the baby had SMA. So we decided for the best interests of the baby and ourselves, that we would terminate. A very hard decision for me. On that same day, my uncle passed away, and I was unable to go over to Qld for his funeral.
Emmilee was our bright spark, and the Doctors who helped us along the way, are all amazing and still good friends of ours today.
There is so much to tell you about Emmi, but if I were to do that then I would be here all day. All I can say is that she was an amazing little girl, who bought smiles and laughs to absolutely everyone who knew her.
The support we received throughout Emmi’s ordeal was unbelievable and made us realize that there are so many people in this world who really do care for others. Without Emmi’s doctor who even gave us his home phone number and told us to call him at anytime day or night and Nanna Joan who was and still is the worlds greatest and most loving Nanna we would have been lost. We really can’t thank them enough but at the same time don’t feel that we need to as they did what they wanted to do for Emmi. These two people in particular gave Emmi quality of life through Emmi’s doctor maintaining her health and comfort to the best possible standard and Nanna Joan’s endless love and of course, “Jiggy Jigs” for her little sweet pea.
To everyone who ever knew Emmi, she was their Emmi T, Sweet Pea, and the little girl who could light up any room...She will never be forgotten...