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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: 4    Comments: 0    Likes: 0   


Tired

February meant yet another trip to St. Louis for Zachary. Jenny had already been to Children's Hospital in St. Louis with Deanna and Cam the end of January, but now it was Zach's turn. He had another CT scan for neurology to check his VP shunt and had to have his eyes checked with ophthalmology. The CT scan showed every thing was normal and they would check up in another 2 years, but the ophthalmologist noticed that Zach had a wandering eye and prescribed him to wear an eye patch. He had to wear a patch on his good eye for 3 months straight to strengthen his wandering eye. He hated those patches, but Jenny knew it was important for him to wear it and she didn't give in to his whining and take it off.

The next month Zachary had another St. Louis trip for cleft clinic. Jenny had taken him to clinic at least once a month since he was born and it was just like any other day for her. This clinic was one of the important ones, though. He had a CT scan to check his bones in his mouth so they could schedule his next cleft surgery. The many doctors appointments were beginning to take a toll on her health and attitude, but she struggled to stay as calm as she could.

Jenny hadn't realized how worn down she was until she began going through all of her photos. She used to look so happy and carefree, but now she felt like an ogre. There was just so much to be done and so much to worry about. Zachary was on 2 medications, vitamins for his MTHFR in the morning and allergy medication at night. Jenny was on 5 medications for insomnia, eczema, migraines, and her MTHFR. There were, at any given time, several phone calls to be made to doctors, therapists, and program coordinators. Zach had therapy for an hour 3 days a week. They had doctor appointments 4 days a month, St. Louis appointments once a month, and stacks of paperwork that needed to be filled out, signed, dated, and sent back every month. Then there was always the 'normal' things that needed done; dishes, laundry, paying bills, taking out trash, and so on.

Jenny did every thing that needed done without having a job, car, or phone of her own. She was tired and stressed out, but she still got it all done. Because of Zachary's disabilities, he had a lot of developmental delays. He had to use a walker, just like the elderly, everyday. He had to get ankle braces the were the most intense kind made for children in hopes of getting him to walk before his delays worsened. Jenny was determined they would do it, even though she hated to hear him cry because he didn't want to work on his walking. She managed to return to her carefree and fun loving self after a while and even had an easier time dealing with her anxiety.

She had been meeting a lot of new people and loved that she was back 'out there'. After a week or so, though, she became worried that this would be just like every other time before. The men would only care for one thing or they would only want her as a friend. How could she be that undesirable she wondered. She felt beautiful inside and out, but thought no one else could see this. She turned her fear and pain into humor and went on about her life. The relationship with her son became better than ever in the midst of her secret fear and pain. Zachary was giving her kisses and hugs every moment that he wasn't throwing food on her clean floors! They were having late night cuddle sessions before bed. He would just look at her with such love in his eyes and she couldn't help but melt into a puddle over him. She couldn't get enough alone time with her baby boy, but knew how to separate 'mommy mode' from her own identity now.

Fear, pain, and life

It had been so long since Jenny had endured the pain of seeing disgust on a stranger's face when they looked at her sweet child. She had forgotten that anyone would ever see him as anything but adorable, but she found out, the dark hearts of cruel strangers still lurked in every corner. Deanna had a doctor's appointment at the hospital one day and asked her best friend to come with her. Deanna's sister, Danielle, was assumed to have died of heart complications after childbirth, and Deanna was now showing the same symptoms after giving birth 3 months earlier. In the elevator, a couple looked at Zachary, leaned toward each other, and began whispering. Jenny breathed deep and stared ahead of her, holding in her anger. As they all exited the elevator, the couple walked behind them and began making comments louder than before. Jenny looked back at them and stared them both in their eyes. Jenny had held in her pain from these comments for so long, she had forgotten the pain was still hidden deep within her heart.

It was about 1:45 am when Jenny heard a noise in the kitchen. As she turned down the music on her computer, she saw the door unlock out of the corner of her eye and a man walked into her home. He wore a white ski mask and matching white gloves. She couldn't think, she froze, and then he pulled the gun up and pointed at her head. Jenny was pissed! "Who the hell do you think you are?!" she belted out at her gunman. He held the silver handgun against her temple and pushed hard every time she tried to shove him away. Then he covered her mouth with his hand, pushing hard in an attempt to shut her up, when he saw she was not going to stop complaining. As he put his hand over her eyes he began to yell to someone else. "Come on, hurry up man!" she heard him say over and over. A few seconds of silence, and then they fled into the woods. They got away with nothing. The police couldn't do anything to help her because the gunman left no prints behind. So Jenny's insomnia grew even worse. Every noise in the night woke her from a dead sleep and her anxiety kept her from falling back to sleep. "What if it happens again when I'm asleep? What if they took Zach?!" She couldn't stop the worrying.

The next few months were filled with doctor visits for surgery planning. Once again they scheduled his final cleft surgery two weeks before his 3rd birthday. She hated when they did that. It just wasn't fair to Zachary. He got new ankle braces that helped his balance when he was learning to walk. It was a long road, but both Jenny and Zachary were bound and determined for him to become independent. The grin on that boy's face showed how proud of himself he was when he took steps with his mommy helping him! His therapists were pleased with his progress and now it was time to plan his transition into school. School; the word itself terrified Jenny. She couldn't come to grip with that fact her baby boy was going to be spending time at a real school without her. "What if he missed her? What if the other kids stared at him?" She thought. Jenny was reassured by the fact that he'd be going into a class with other special needs kids and he would never be alone, but still, what was she going to do with him away?!

Emotional Maturity

Jenny had been seeing a doctor for years now, but it wasn't until a late night that she discovered she truly needed new medication. For no reason at all, she became extremely depressed and cut herself again. After wards she couldn't help but cry her eyes out. "What did I do?!" She kept asking herself. The next week Jenny went to see her doctor. It took all the courage she had to look her doctor in the eye and tell her what she did and that she wanted to stop it. To her surprise her doctor did not seem shocked. She simply wrote a prescription for a high dose medication and a referral for a physiologist examination. Jenny was proud of herself. She had finally matured enough to admit her problem and tackle it head-on. She wrote; at first to her friends and family, but then it turned into a reminder and promise to herself:

"Redemption

Without them, I'm me
Just beyond the flesh
It's still me, can't you see
Ignore that they're fresh
I beg of you
Please don't fret
To look at you
Is to feel the regret
Accept my plea
I aim to recover
Wish to break free
Take on no other
Escape this demon
That causes me harm
I seek freedom
I've pulled the alarm
I can now accept tears
To flow from my eyes
Overcoming my fears
Before part of me dies
I write this for you myself
To show my choice
Repairing my health
Free my voice"


For once, some good news came. Deanna's son, Cameran, turned out to not have brittle bone disease. Both Deanna and Jenny let out a sigh of relief. The thought of two disabled children between two single moms, did not sound easy to them. Zachary and Deanna's daughter, Gracie, had been spending a lot of time together, and by now Jenny had taught Gracie to sign the words "Mommy" and "Finished" just like she was teaching Zach. Things were looking up. Finally.

It was a beautiful warm night when Jenny had her son and Deanna's daughter. She decided to take the kids to the fair up town. As she took Zachary off of the car ride, she slipped off the platform. When she fell, she protected her son as much as possible, but not herself. Jenny walked around another 20 minutes waiting for a ride home. Once home, she saw her foot, swollen and throbbing. She got to the Emergency Room and did her X-rays to discover she had fractured her foot and sprained her ankle. The doctors gave her painkillers and crutches. "How the hell am I going to take care of the kids, let alone myself on painkillers and crutches?!", she thought.

After living together for a while, Deanna and Jenny began to become irritable with each other. They were both having financial troubles as well which only made the situation worse. The kids made a mess of the house, leaving two overstressed single moms ready to pull their hair out. They began fighting and arguing over trivial matters which ended up with Deanna moving out. Both of them were stubborn and refused to apologize since each believed they were the one who was in the right. Both of them said very hurtful things to each other without realizing that the wounds they caused might not be able to heal. Jenny feared she had lost her best friend forever.

A New Move

Jenny and Zachary moved into a one-bedroom apartment in the city the beginning of fall. The same apartment building in which her little sister and her mom both had apartments. It was small, but it was also cheap and close to family. Every day, Zachary's Framma, Mary, would come upstairs to visit him and his mommy. She had a special 'game' for him that he loved. She would hold him and hug him tight while she said "Squish!" He laughed so hard each and every time and it seemed that game with his Framma would never get boring. Their apartment was almost filled to the ceiling with toys and clothes, leaving almost no room for furniture. Jenny decided to have a moving sale and get rid of anything they didn't absolutely need. They were now within walking distance of everything they would need, including Zachary's school. He started head start's special education program the first of October and although Zachary was overjoyed, his mommy had a hard time letting him go. Eventually she came to grips with the fact that her baby boy was growing up and wouldn't be on her hip forever, and somehow, she'd have to be okay with that.

Now that Zachary was spending every other weekend at his grandma & dad's house, Jenny had time to herself to do whatever she wanted. Her sister's, Missy and Mandy, had a new tradition of going out to the local karaoke bar every weekend, and so Jenny joined in on the festivities while Zachary was gone. She and her sisters sat together drinking mixed drinks, laughing, and singing every other weekend. Soon enough, though, both Missy and Mandy ended up in relationships. Missy began dating a woman for the first time in her life, and shocked everyone when she came out as a lesbian. Ashley was her girlfriend and they fell completely in love in a very short while. Mandy was still straight and had met a wonderful guy named Nathan. They took it slow and enjoyed dating for a while before becoming a full blown "couple", but once they got there, it was obvious they were perfect for each other.

In November, Zachary became a big brother to Devin, Mark's new baby. Jenny wasn't sure how she felt about it, but she had no strong feelings leaning either way, it was just weird to her. She felt like somehow it wasn't fair. It wasn't fair that Mark could go on with his life and even have a healthy new baby.

Jenny and her sisters didn't see each other very often after that. They had jobs, and significant others, and weekend plans that didn't include her. She was so proud of her sisters though. Missy was brave enough to come out of the closet to everyone and not care who said what. Mandy was working 3 jobs and going to college while still taking time to spend with Nathan. Though none of the sisters had very much time to spare, they both stopped in at least once a week to visit Jenny and Zach.

Zachary's first day of school was much easier than Jenny had imagined. She did not cry although Zach shed a few tears when mommy walked out of the room. He was a momma's boy and it was very apparent. She went home and all she could think about was how fast her precious little guy was growing up. After his first day of school, everything seemed to get easier in both of their lives. Jenny was finally able to go to the bathroom without her son on her lap, and Zachary insisted on learning to play with his toys without help. They were both becoming independent people, separate from each other. They were maturing.





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