I barely met the preacious child named Lilly only a couple of years ago.... But when I did it will never be something I will forget.
My sister Nichole asked me if i wanted to meet my niece and of course i agreed! I slowly walked to the door at the end of the hall with my sister in the lead. She opens the door to a room filled with teddy bears and light colors that brought up the mood. As we went farther into the room i saw a little girls crib with tubes and wires coming from different places. As I approached the crib i didn't know what to think or what to do. Once I looked over the side of the crib and saw the child I came to know as my neice; a sense of happiness flooded my body and the urdge to pick her up came over me. Just at the moment i was thinking this my sister asked if i wanted to hold her and how could i refuse to.
The fear that i had felt of hurting such a precious, fragile child subsided once i felt her put into my arms. She started crying a bit which is a expected when a stranger picks you up. When i heard that soft whimper i had to hand her the one of the people that made her happiest, her beloved mother Nichole. Once she was put into her mothers arms she must have sensed who the connection and love flowing from her mom because the moment she landed in her arms she stopped!! It just showed how much of a bond they had.
I just regret that i never got to see her as a baby or on her birthdays. I kind of feel jealous that other people had the chance to get to know her so well and feel the love she gave. But from the love she showed me in the time i knew her i got a taste of what it must have been like. She lives on in all hearts... Love you Lilly
Kat
It was December 8,2004 when God sent The Staggs Family a little angle.
Her name was Lillian Faye Staggs. Her health was not perfect, but her soul was.
Lilly, as most of us called her, was a little girl fighting for her life.
My name is Tori Staggs. I am Lillian's cousin.
Lilly ment the world to me. I loved her just the way she was.
She definatly was a little angle.
From her perfect little curls to her cute little toes,
Lilly was just a merical. I remember the first time i saw Lilly.
She had all these cords and wires helping her stay alive.
All these thoughts were going through my head.
I really didnt know what to think.
But, i looked past the cords and wires and fell in love with
a beautiful baby girl.
Lilly soon got stronger and stronger.
She was laughing and blowing her little bubbles from her mouth.
I remember she loved listening to her mobile.
She would laugh and hit the little toys that were on there.
I also remember when she would cry.
It really broke my heart to see her cry.
I remember i use to rub her head while she was laying down.
I'm not to sure if she enjoyed it or not.
But, it seemed liked she did.
Lilly had an amazing family.
Her mom, Nichole, her dad Jimmy, and her three brothers Ethan, Jakob,
and Samuel. Lilly and Nichole had a bond like no other mother and
daughter had. Nichole loved to hold her and give her kisses.
Nichole use to put Lilly's hair in "Lilly tails" as she called them.
Jimmy and Lilly had a really close bond also.
He use to sing to her all the time.
And most of the time Lilly loved it. Lilly and Ethan were
the practical big brother little sister kind of thing.
Ethan loved to be around her and hold her.
He would help out when ever Jim or Nichole needed it.
Jakob also sang to Lilly. He gave her tons of kisses.
And enjoyed trying everything he possibly could to make her smile.
Samuel was new in the family. But as Lilly got older, so did Sam.
Sam used to love to pull on Lilly's "Lilly Tails."
Lilly didnt enjoy it to much but she knew she loved her.
Lilly lived three years and on February 6,2008 are little angle
returned back home. She left us all heart broken.
But, we all knew it was for the best. She is in heaven now.
She is happy playing in a field full of lilies waiting til
she can see us again.
i love you
your cousin, tori
THE VISITOR
3/25/08
Once in a lifetime, if we are fortunate, we encounter someone who leaves an indelible mark on our consciousness. They enter our lives and sometimes leave all too soon, but forever mark our minds and souls with inspiration to attain the unattainable, and to reach our full potential as human beings. Their pure light shines into the darkest of corners, and the love they exude softens the hardest of hearts. Our lives are never the same after this encounter. My family was visited by a being of pure love and compassion. An angel in the purest sense of the word, Lillian Faye Staggs is my daughter and my hero. Our little “visitor” left behind her in her short time, a remarkable legacy, one in which I feel a duty as her father to chronicle.
Lillian’s journey to us began on December 8th 2004. A cold and rainy day that began with tears shed over the culmination of news my wife and I had received a few months prior. During an amniocentesis given to my wife for a risk assessment, we were alerted to an anomaly that existed in my unborn daughter’s DNA. A deletion of the 32nd segment of her 14th chromosome was what it was labeled. The medical jargon meant little to us, but the meaning became clear. Our geneticist we were referred to by our obstetrician told us that our daughter had a fatal chromosomal condition that had only been found in ten other documented births. He went on to tell us that most pregnancies of this type miscarry and that the chances of her surviving childbirth were minimal. Once we were able to speak, we assessed our risks, and we decided that a slim chance was still one worth taking to see our precious girl.
Our arrival at the hospital was bittersweet. We had tried in the previous weeks to come to terms with the grave nature of the news we had received, but how does one “prepare” for your child to die? We hadn’t a clue where to begin with the torrent of emotions that were churning within. My wife valiantly climbed into the hospital bed to begin her sedation for the Cesarean section. I didn’t know what to expect, and I remember feeling a calm that overcame my body out of the desire to meet “my girl” even if it were only for the briefest of moments. The OR room was cold, but I sat cheek to cheek with my wife while the procedure began. I remember sounds, and then a distinct little cry, which might have been inaudible to others; but the sound of Heaven’s trumpets to me. Lillian was brought to me, and my lips touched her forehead. In all my life, I have never felt anything more peaceful than that moment. She was fighting to live, and the Neonatal team was working at a feverish pace to intubate her tiny, 4.2 pound body. I stayed with my wife until the procedure was complete. I arrived at the NICU unit with a renewed hope and with a feeling of love forged with the unbreakable will of a baby girl.
As soon as she was stabilized, we were allowed to visit our angel for the first time. I witnessed first hand the formation of the bond between Lillian and her mommy, which was an unforgettable moment in time. After all she had been through, Miss Lilly opened her eyes to see her world for the first time. She took it all in and rested most of the first day of her life. While she slept, the scope of her condition was painting a grim picture in the eyes of her neonatologist. Tests would be performed to determine the nature of the disorder and how it manifested itself in her body. We were told right away that her airway was compromised, and that it would be necessary for a tracheostomy to be placed for her to be able to oxygenate effectively. All of this was a blur in my mind, but my recollection of these events are tinged with the prospect of hope for my daughter’s future which she wasn’t expected to have.
Doctors performed tests that told us that Lillian’s brain was abnormal. They believed she might not ever be able to see, or hear, or walk. All of this was slight compared to the final finding. Lillian was diagnosed as having hydrocephaly, or excessive amounts of fluid in her skull around her brain. We were also told that her sutures in her skull were fused which would impede her brain growth. Surgery might be an option for an outside chance at correcting this condition, but they had never seen a child with such a collection of symptoms. To watch renowned pediatricians, geneticists, and neurologists scratch their heads in confusion is humbling. Not one of them gave us hope to expect Lillian to lead a full life let alone last the month.
Lillian made remarkable progress and ophthalmology concluded that she had normal vision and eye structure. Auditory tests concluded that she could hear and react to stimuli. She was also moving her hands with deliberation, and batting at items in her bed. Holding her quickly became my favorite pastime. She loved to be sung to. Music soothed her, as evidenced by her mobiles which serenaded her with her beloved melodies. She was flown to Dallas, where a tracheostomy and a gastrostomy tube were placed, in order to provide her with oxygenation and nutrition. After a brief stay back in our hometown of Lubbock, we were discharged home with equipment and supplies. It seemed unbelievable that just a month before, we were told she would never make it home. As we soon learned, however, our daughter’s struggles were only beginning.
We brought Lillian home to a house outfitted much like an ICU. It didn’t take long for bad news to find us. The home health agency that was supposed to provide us with nursing assistance wasn’t able to provide us with adequate care as my health insurance was buckling on paying them. For the first two weeks my wife and I cared for Lillian around the clock, all the while having to work and support our other two children. Many of the nursing agencies only accepted Medicaid, so our resources were limited. We tried with futility to gain access to a Medicaid supplement so we could gain nursing coverage. I was told our income was too high to qualify. Our first lesson in bureaucracy was learned this way. So began our first month at home, struggling to make ends meet, arguing with insurance on payment, and trying to qualify for assistance we needed for Lillian. As a father, I fought off feelings of helplessness and the desire to provide the best for my child. In my despair, I was always met with my loving daughter’s hopeful smile which never failed to restore my hope.
Eventually we were able to qualify for assistance for nursing hours that enabled some semblance of normalcy to work its way back into our lives. Lillian was growing fast, and the first tufts of her trademark curls were growing on her sweet little head. She had learned to blow bubbles through her mouth and it fascinated her. Everyone that came into her life instantly fell in love with her charms. We soon learned that the fluid in her skull was building and would need to be drained, which meant that the previous discussions we had about cranial surgery would need to be revisited. We flew to Dallas again to have the procedure and to discuss the potential need for a risky suture release surgery that might claim her life.
The afternoon of her procedure to drain the fluid in her brain arrived. One thing I remember about that day is that it was the first time we ever got to hear her voice. Since her rapid growth had began, she had begun to talk around her trach. It was the most beautiful sound I have ever heard. I could close my eyes and see her calling me with her sweet voice. Our neurosurgeon performed the fluid draining and visited with us about the survival rates of the suture release surgery. In the end, we all agreed to choose the unknown chances of survival rather than risk losing her to a risky and painful surgery. I sometimes wonder how things might have been if we had chose differently, but I feel our decision gave Lillian a chance at a better quality of life. I feel it was the best decision to make. We went home determined to make the most out of whatever time we had with our angel.
Lillian’s first birthday was a momentous occasion for celebration. She was growing stronger everyday and was at the ideal weight and length of an average child of her age. She was dressed in a red and black dress with ladybugs as the theme of her birthday. As she sat surrounded by her loved ones and her cake, I couldn’t help but think “We made it!” I had hope that her physical strength was healing her congenital problems, and that Lillian could overcome any obstacle put before her. Subsequent to her first birthday, she frequented the hospital on occasion for bouts with pneumonia or flu, but all in all she was making remarkable progress. Her first teeth began coming in, and she wasn’t sure what to think of that. Her favorite toy was her sunshine mobile with bumblebee lights that she liked to lay on her blanket and bat at. Her room was decorated wall to wall in Care Bears which lined the perimeter of her bed. She had a sound machine which chirped the sounds of birds in springtime and running streams that played for her long into the night.
My family became comfortable after this point. We lived happily without serious incident for two years as a family of six (Ethan, Jakob, Lillian, and Samuel), as we had recently added another member of our family to our number. My son Samuel added color to our life and added his own blend of individuality. My oldest, Ethan, grew especially close to his sister and has matured far beyond his 8 years of age. Jakob, the middle boy, loved to sing to her and hold her while they watched movies together. Samuel, the baby boy, drew Lilly’s ire from time to time as he liked to pick on her. She on occasion picked on him as well. He was always sweet with her for a 1 year old and always kissed on his “Willy” as he called her. Holidays came and went, and Lilly grew older and stronger and seemed impervious to the dire nature of her disorder. She saw fireworks for the first time on the 4th of July, and got to go for walks with mommy and daddy in her wheelchair in the backyard. These truly were the best times in all of our lives, and we lived them to the fullest.
On the 5th of February, 2008, Lillian visited her pediatrician for a lingering flu that seemed to continue to get worse. She was given medicine for her congestion and cough and was sent home. That night was a night like any other in our home, other than the fact that I was not working late, and was able to bathe her with my wife. Lillian loved her bath and loved to splash and this time was no exception to that rule. She was awake and alert, and smiling…..Always she was smiling. I went to bed that night not knowing it was my last time to see that beautiful smile.
My light, my life, my precious Lillian went to be with Jesus on February 6th, 2008. Our wind was knocked from us as it was entirely unexpected. It was a peaceful sleep that came over her and called our little “visitor” home. Our Angel came to visit, and to change our lives. She taught us the true meaning of love, and strength. Along the way, her will to live touched many lives, all of whom will always carry a piece of her with them. Our hearts are broken, yet our will to live persists, fueled by our little inspiration. I have dreams about her almost every night that temporarily soothe my pain. In my dream, I see her running and playing and she stops for a moment to look at me with the most peaceful smile. She exclaims, “Hi Daddy! I’ve been waiting for you!” I then look around to find myself surrounded by a field of clovers and lilies. I am the “visitor” now, and I run into her arms where I will stay forever. I am home.
I Love You, Lillian
My Light,
My Love,
Daddy
