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My real life story of becoming a mother of a special needs child and overcoming the odds! View table of contents...


Chapters:

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Submitted:Sep 17, 2013    Reads: 5    Comments: 0    Likes: 0   


Day Or Night

Her anxiety began to cause her to break out in bumps that itched to no end as well as even more acne breakouts. She felt terribly disgusting in the eyes of all men she came into contact with, which made her self esteem and depression amplified, but with Deanna's constant compliments she slowly began to feel better. Jenny was robbed just a couple days before the New Year and she had nothing. All of the money she had for the month was gone, and she had no job. If she could just get a car, she could get a job, but she had no transportation, and now, no money. Derek was gone all night and day working. He said he was going to pay her rent and he'd be back in 2 days. She was lonely and depressed. She felt as if she didn't really know everyone she knew. No one seemed to really care. She decided that with the New Year it was time for some changes.

Jenny decided it was time to plan a move. Not just a move to a nearby town, but at least an hour away. She began making her plans and decided that if not this year, the beginning of next year, she and her son would be out of there. Derek didn't prove his love to her and January 2nd he was gone again. Jenny wasn't upset; she knew it would happen, just like in her poem, the prophecy had been fulfilled. She would just keep going on with her life as she had been, without having to worry about when Derek would be coming to stay.

Jenny was left alone again, trying to figure out how to pay her bills and get to the grocery store. She desperately needed outside help, but didn't know who to turn to. Every time she looked into her son's eyes all she could do was feel shame. She hadn't been a good enough mother to be able to buy him every toy imaginable. He deserved every toy ever made, she thought, and if she couldn't provide that for him, she had failed. Deanna moved in with her at the end of the month and Jenny no longer felt so alone. Together they took care of their children, cleaned the house, and ran their errands. They joked that if one of them had been born a man, they would've made the perfect couple!

"Day or Night

Even from way back in the day
Had a shoulder for my head to lay
She's always been by my side
My girl, always ready to ride
Into our high school years
There to wipe each other's tears
Me and my girl were always tight
Right by my side, ready to fight
Day or night
Right by my side
Day or night
Ride or die
Heartbreaks and celebrations
For her I always have the patience
Even when those boys start hatin'
And when our loved ones are all taken
She's always there with me
Through all the bullshit
Me and my baby
We always get through it
Day or night
That's my girl
Day or night
Conquer the world
Now we're grown
With kids of our own
And we hold on tight
For the sunlight
Although divorce and death
May at times take our breath
We'll feel alone
But in the end it's just us
You and me, my friend
Day or night
I'm there for you
Day or night
This love is true"

Cameran

"Jenny, wake up, baby!" Deanna called as she walked into Jenny's bedroom early one morning. Jenny looked up as Deanna began talking frantically. "Your son's sick, deathly sick, we're going to the hospital, get up!" she rambled. Jenny got up and began to get dressed as Deanna continued with the story. Deanna's 2 month old son, Cameran, had been gasping for air all night, and by then they knew it was an emergency. Deanna, her boyfriend, Eric, Jenny, and all 3 of their children arrived at the Marion hospital around noon on the 16th. The emergency room nurse did a RSV test as well as many other tests. Deanna couldn't stand seeing her child in pain so she asked Jenny to come and hold Cam as they drew blood. Jenny felt as if she were in a time warp. This all took her back almost 3 years, to when Zachary was just a little guy like Cam having blood drawn and doctors everywhere. One nurse even asked Jenny if she was a nurse! Jenny simply replied, "No, but I have a disabled baby, and have been through this stuff a lot."

The doctors assumed that since their RSV test came back negative, they should do an X-ray to see if he might have had pneumonia. Jenny explained to Deanna exactly what and how the doctors were doing all the tests. She told Deanna how they would place little bitty Cameran onto the X-ray table and that she would have to wear a lead vest while they took the pictures of Cam's lungs. Jenny held her sister's hand one last time as s

he walked behind the glass. She watched as her best friend looked forward in terror. After the doctor looked at the X-rays, he diagnosed Cameran with pneumonia and sent him to the pediatric floor to be admitted. The nurses came in and began to search for a vein to put in his IV. Deanna began to get furious when they stuck her son 3 times without getting the IV inserted. She asked the nurses to please send someone else in to do it. Another nurse came in and stuck Cameran another 3 times.

After 6 sticks with no IV started, Deanna refused to allow them to try again. She requested his family doctor to come to the hospital and start his IV. His family doctor arrived around 7 pm that night, tried once, and successfully started the IV. Cameran began doing breathing treatments every 4 hours as well as taking 2 antibiotics every 6 hours. Deanna was horrified. She had never experienced so many medical procedures or equipment before. Jenny assured her that if she could go through everything with Zachary, Deanna could defiantly get through this. It was 3 days later and Cameran was getting worse. His breathing became even more labored and this beautiful little mixed baby looked more like an albino. By the 4th night the doctors decided it was time order another X-ray. The doctor explained to Deanna and Eric that Cameran had air in his stomach due to him inhaling deeply as he cried in pain. They put a large plastic tube down her baby boy's throat all the way into his stomach to release the air. Deanna held tight to Eric as she tried her best to gather some unknown courage from deep within. Her thoughts occasionally drifted to seeing Jenny watch her son being wheeled in the operating room, but as they inserted the tube into her child, the only thought in her head was seeing the paramedics stick a tube down her sister, Danielle's, throat as they tried to save her life.

The next morning a nurse came into the room to put Cam's antibiotics into his IV. As she flushed the IV she blew the IV line. Deanna watched as it happened and heard her son let out a terrifying screech. She jumped up in a frenzied panic. She screamed to the nurse to never come back into their room again. Later that morning their family doctor came back to the hospital. He tried another 2 times to start a new IV, but Deanna agreed with her good friend, Kim, that she shouldn't allow them to keep sticking needles into her child's body. She requested that her son be transferred by ambulance to a St. Louis hospital. The doctor disagreed and would not authorize the transfer. If Deanna wanted her son in St. Louis, she would have to call and pay for an ambulance herself. So she did just that.

The ambulance made the 2 hour trip to St. Louis after picking up Deanna and Cameran. Eric rode with Kim and they all met back up together at Children's Hospital. Within 4 hours Children's Hospital had already gotten back a positive RSV test result for Cameran. After they began treatment for the RSV, they stopped the breathing treatments because it seemed to be making his breathing worse. On the 3rd day in St. Louis, they found that Cam had a bone disease called Osteogenesis Imperfecta which is a genetic disorder causing his bones to be much more fragile than normal bones making it very easy for him to break a bone and harder for it to heal. They told Deanna that this disease worked in stages and that if they caught it early enough they would be able to retard its progress. Deanna asked, even though she already knew the answer, if Jenny would go to all of Cam's St. Louis doctor appointments with her. Jenny promised she would be with them for each and every one. Deanna had now entered Jenny's world of doctors.

Momma's Pumpkin Boy

Jenny's little man was making such great progress as February neared. Everyday Jenny held his hips and they walked around exploring the entire apartment! He was so amazingly proud of himself all he could do was grin and laugh as he took steps. Jenny firmly believed his progress was thanks to him spending time around Deanna's daughter, Gracie. He would try to chase her as she walked around the house playing and mimicked her as she talked gibberish. They took baths together every night before bed and just laughed as they shared bath toys and splashed the water together. When Jenny showed her ex-mother-in-law, Sheila, how good Zachary was beginning to walk, she burst into joyous tears. She was very proud of her grandson and his mother for the wonderful progress they had both made together.

Jenny decided to start using sign language with her son, but with the absence of his right arm, she had to come up with one handed signs instead of the proper 2 handed signs. Zachary could already sign the words 'finished' and 'tired'. Jenny was trying for the word 'mommy' next. Zachary had therapy 3 times every week. During therapy he now signed 'finished' on a regular basis so he wouldn't have to continue with the activity they were doing. One of his therapists, Kimberly, told him every week that if he didn't want to do his therapy, all he had to do was get up and walk away and he wouldn't have to do anymore therapy that day. Jenny was starting to worry that Zach wouldn't be walking by the time he would be fazed out of the Early Intervention therapy services at 3 years old, so she worked as hard as she could with him every moment of everyday. She made up songs that she could sing with him and so that she could use sign language with the songs as well to encourage his communication with either words or signs.

'That's momma's pumpkin boy
Momma's pumpkin boy
Momma's pumpkin boy, that's you
Your momma's pumpkin boy
Momma's pumpkin boy
And momma says she loves you!'

'My baby boy
Can stand up big and tall
My baby boy
Is the biggest boy of all
My baby boy
Can sit up on his own
My baby boy
Best boy ever known'

'Happy boy, happy boy
Zach is such a happy boy
Handsome boy, handsome boy
Zach is such a handsome boy
Smart boy, smart boy
Zach is such a smart boy
Momma's boy, momma's boy
Zach is momma's boy'





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