Monday, December 3, 2012
Jennifer Toby A story of Schizencephaly
Jennifer's story is very close to my family and her picture sits in the hallway with all of our other families Pictures. Jennifer and Noah have a very special bond One that cannot be spoken with words just love., And I am so honored to share her story with all. Some children are angels sent from Heaven. That is the way I feel about all the children I know with Schizencephaly. But jennifer's ....well her story is still so alive in our hearts. Janet is a very strong mother and someone I am proud to call family. I hope everyone takes time to really listen with your heart. I have decided to run this story as one part because it just cannot be cut into five days. I will however be sharing pictures of Jennifer throughout the entire week. As a reminder of many of us that forget that there is so much to Christmas we forget. The smiles and laughs of those that are missed. This Christmas we should all think of families like Janet's because too many of us forget that so Many of us are missing loed ones during this time of the year.
Written by Janet Toby
When I was 22 I found out I was going to have another child A Blessing to my little family.
At 26 weeks Gestation Me and Jay found out it was a GIRL, We were ecstatic! We also found there may be issues. She was in a breech position with feet touching her head, the good news was the ultrasound was read and the we were told even with breech everything looked great and we were having a Healthy baby girl,
Although we expected some complications due to the baby’s positioning we felt confident since the Dr caught it early that it would go smoothly once the delivering hospital got her into the right position.
On May 10, 2003 our precious baby was born and we named her Jennifer Michele and what a beautiful girl she was. We thought the worst had past until we were met by some doctors with what words that seemed to make time stop for just a brief moment. Our baby, our special angel could not hold down any fluids and needed to be rushed to the University of Tennessee NICU. It was there we were told Jennifer Had club feet which (we were told) was due to the breech position But we were assured her feet would straighten out.
The same day she was born it seemed was the same day life changed for my family in an instant. This is the day It seemed the longer we waited for answers the more things began to get worse for Jen’s prognosis.. After the staff ordered x-rays on Jennifer’s we quickly learned Jennifer’s tummy was turned and she would need to be fed by a NJtube. We were still in the Hospital when the Dr ordered yet another test. Jenn was 2 days old when a CT scan was ordered for her head to see how much damage was caused by a lack of Oxygen
That was the day we Found out we had a miracle because the brain showed 2 parts were missing. Jennifer had BiLateral Open Lip Schizencephaly, Arthrogryposis, Cerebral Palsy, Chronic Lung Disease, Epilepsy, Asthma, Trachia Malatia, and Scoliosis. We didn’t know why this had happened but we soon realized This was the beginning of Our Jennifer’s story and one that would teach my family how life is an ever changing ride. And we got our seatbelts on for a long road.
The day Jennifer turned 1 month old Jennifer went through a G-Tube placement with the turning of her tummy and a Nissian Fundoplycation.At that time we were told Jennifer wouldn’t live 6 months and be a complete vegetable. We decided that home was the best place and we would fill her heart with all the love possible if she were to only be here a short while.
We brought Jennifer home 8 weeks after being placed in the NICU. We started corrective casting for the club feet and splints on her hands. It seemed Jen was just as much a fighter as us in this family because by the time Jennifer hit the 6 month mark we celebrated because not only was she living but she was holding her head up some! She still couldn’t focus well but we went to church and Had a visiting pastor the Pastor came to our pew picked Jennifer up and carried her up and down the aisle praying over her, when the pastor brought her back to the pew her eyes were focusing and not bouncing. GOD is Good!!!
Jennifer had 30+ surgeries in her life but always smiled She was just so very happy to see the world, to be loved and to share that love with everyone she met. But there were the bad days too. Jennifer spent her first 2 Birthdays, Christmas, & Thanksgiving in the hospital due to illness and surgeries, but boy when her 3rd birthday came around she had a sweet 3rd birthday party because she was actually spending her special day at home.
Jennifer started school at age 3 in August she absolutely loved it. Her therapists and teachers had never had a child with so many disabilities or needed to be GTube fed And the friends she made and teachers that were touched By her proved she was a living angel.
By the Time Jennifer went to school she could sit up on her own & say momma. She Shocked the heck out of her doctors to the point they used Jennifer as a poster child. She was moving mountains even though she never walked! We received TEIS (Tennessee Early Intervention Services) and TIPS (Tennessee Infant Parent Services) these were great at helping us with so many Referrals and transitions. Jennifer took OT, PT and Speech therapy which helped her a great deal but she still couldn’t eat by mouth but Speech helped us with learning how to brush her teeth with her having Arthrogryposis she had limited Jaw and joint movement.
It seemed Jennifer had a mission in this life even I as her mom never understood but she was so very determined and I couldn’t be more proud! When Jennifer hit Kindergarten at age 5 she was sitting, rolling from back to side, pointing out colors, and working on signing because she had limited words at this time she could say momma, bubby, paw, and no.(seems kids No matter what the normalcy or disability love the word NO!)
When she hit 6 sJennifer was going even further, She could Sign, pick the right colors to color with, count on her left hand, and make the Letters J, N, T,O she could draw a straight line and circles. When Jennifer hit 7 she was excelling so much the teachers chose her as their helper every day.
There were so many Miracles throughout Jennifer’s life. She was determined to prove every one wrong from day one and I began to realize no one can tell you what to expect from your child. Only God knows what the purpose of each of us in on this earth so in Him I trusted.
At the age of 7 yrs. 9 months And 3 days Jennifer got the flu. Late at night I went in to check on her and her fever was high so I rushed to call the dr and he assured me she would be fine to take her in that following morning. Later that day it seemed the flu was easing up so I was out while Jay was at home and I got a call from Jay. It is something no mother is ever prepared for. We lost Jen and She was unresponsive. The ambulance got there and got her to the hospital where she was revived but our angel was in a coma and placed on Life Support. I was told She may not make it and she needed to be airlifted to East Tennessee Children’s Hospital.
On Valentines Day in 2011 a nurse helped her daddy dress her in a Crown and earrings and put her hair up in a ponytail. She lay there quiet while we sat near making sure our princess looked just how she loved to look.The doctor came in and talked to Jay and I and was told the next day they would do some test to determine if Jennifer would come out of her Coma and if not Jay and I had no Choice in the matter of Taking her off of the support. That day seemed to be one of the longest and shortest I have ever been through.
On February 15th,2011 at 4:33 pm by baby passed away. Words simply cannot express how that feels to anyone. To feel helpless, to live past your child. There is a hole that somehow never gets filled even though you learn to laugh again and you learn life goes on. There are many days the pillow becomes your counselor.
I miss her Laughter, her smile, her cuddles, and arguments with her brother and sister. I just miss Jen.
I miss the smells, the routines you get used to. Sometimes a simple breeze carries a memory that brings you back to a good day that I see Jen’s face smiling in the sunlight. So thankful to just be who she was.
I am Thankful for Tricia for helping me in the group she has been there for me through a lot. I love helping out with finding awareness for Schizencephaly. I know a lot of people would say how can I do it?
I will tell you how I do it I get up every morning knowing I still have 2 beautiful children that loved Jen just as much as I and a Husband that needs me. And I know Tricia has told me she thinks Jen guides her. Those certain days Noah laughs at nothing Tricia will ask “are you talking to Jennifer again?” and Noah smiles.
Jennifer is looking down on me She is within all of my thoughts and a part of all the families I meet dealing with Schizencephaly, and I know one day I will get to hold her, Kiss her and never let her go. And every new Schiz child that gets their wings Jennifer is there, Waiting, smiling, Reaching out her hands and welcoming them with all her love. Together they run and play and smile down on us.
Those days you feel the warm sun briefly when the chilly wind stops for a moment. That is my Jen. Just reminding me through the clouds there is always the light. And Light fills the heart much faster than the dark.