Floating

When Jaycee does something new, we notice. In the pool last weekend, Jaycee leaned back in her life jacket and floated on her back. It was neat! She has never done this on her own before. She just floated on her back, kicked her legs, and stayed like that for several minutes. Not only is she floating now, but she has more control of her body in the pool.

Great job, Jaycee!!

So far this year, Jaycee has:

-Learned to float on her back

-Learned to buckle her seat belt on her own

-Started using regular toothpaste & can spit it out

-Started saying a few new words like boom and Belle

-Learned to write the letter H on her own

-Started to do most of her bath on her own



A Down Syndrome Parable

I'm going to veer from my normal blog entries to share a story I wrote. I hope you enjoy it. If so, please feel free to share this link. This story is US copyrighted, so do not copy this story and post it as your own. If you are going to use this story in print, please ask permission first by emailing me at:  evanasandy@gmail.com

A Parable:

A dedication to my daughter with Down syndrome
**COPYRIGHT NOVEMBER 2013**

By: Evana Sandusky

Once, there was a couple who loved each other. After a few years of dating, they wed. The husband and wife both worked and saved for their optimistic future. At first, they were content with their life together. However, they were friends with other couples that had built their own homes.  These new homes were the pride and joy of their friends. Soon, that became the couple’s dream. Through hard work, it became possible for the couple to start the building process after three years of marriage.

The couple purchased land a few hundred miles away from their current residence. It was located in a quiet, small town where other new homes were being built. The couple looked carefully at their friends’ new homes and made notes to discuss with their contractor. Since their new home was being built so far from their current residence, the couple’s contractor would play a vital role in making sure things were completed properly.

The couple spent every minute working hard to save money for items needed for their new home and preparing for the move. Consequently, it was impossible for them to personally see their house in the building stages. Periodically, they received faxed pictures of their home from the contractor. The grainy, black and white pictures made the features difficult to see, but it definitely resembled a house. The couple proudly showed the pictures to friends and enthusiastically talked about their upcoming life change to anyone who would listen.

The construction of the house took nine long months. Finally, the day they had awaited came. They loaded their belongings and began the move. They arrived in their new town and made their way down their new street. Their excitement grew with each new, beautiful home they passed. Veering left at the end of the street, they pulled into their driveway at house number 321.

A large, two story home stood in front of them. But, their house was not like any other one on the block. There were noticeable differences. The window spacing seemed wider than usual. The height seemed short for a two story house. The grain of the wooden door contained an unusual line it in. Fearing bigger problems inside, they had the house thoroughly inspected, which found additional problems. The foundation of the house was not as strong as it should have been built. It would need additional beams and supports placed in order for it to maintain its integrity. These things could be added to it now, although some would be noticeable. The heat and air conditioning worked but it was not the most efficient system. The wiring of the house was also not done in a typical manner; however, it was safe and did work.

Initially, the couple felt shocked as this was not what they were expecting. But, the contractor felt he had fulfilled his obligations because the house was livable. But the couple didn’t want to settle for livable; they wanted the house to be the best it could. So, they educated themselves and found electricians, carpenters, and masons who worked with the couple to make improvements. However, some issues were not fixable, so the couple simply learned to live with them.

All of this was initially hard on the couple. They weren’t expecting to run into these problems. After all, their friends’ new homes were built without any difficulties. Their family and friends seemed sympathetic and offered friendly, but sometimes insensitive advice. Some blamed the couple for their problems. They suggested that the couple had agitated the contractor and this was their payback. The couple slowly learned to cope with the long looks towards their home and whispers behind their backs, but they always hurt a little bit.

The couple did fully embrace the house as theirs. After all, the house reflected them. The home had a large kitchen complete with two ovens for the wife’s love of baking. There was a large den for the husband’s sports collection. The floor and wall colors were just what the couple envisioned.

After spending time in their home, the couple realized they had failed to appreciate a unique feature. A circular stained glass window depicting a dove in a red heart brightly shined through the center of the living room wall. It was something so beautiful that no other house in town had. On a bright sunny day, the vibrant glow from the stained glass window reminded the couple of their happy life and future.

Life continued to move on. There were new jobs to start, groceries to buy, and chores to be done with the home. They had to adjust and that’s what they did. The couple occasionally met other people like them, often in home improvement stores. They enjoyed sharing stories and ideas in these chance encounters. They found out they were not alone, but they often felt that way in their town.

The house became something that brought the couple much comfort and peace. They enjoyed decorating their house for different holidays and inviting loved ones over to celebrate with them. But there were other circumstances that left the couple distraught. Storms with destroying tornadoes often passed by remarkably close to the house, threatening its structure. At times, the couple wondered if the house would endure the storm. In these times, the couple prayed that their house would stand and be unharmed. They rejoiced with each storm that blew through and left little or no damage. However, there was always some fear that another storm would come and take away their precious house.

In perilous times, the couple realized how much they loved and adored their house. It was different from what they originally expected. But, it was theirs. They began to focus less on what was wrong with the house and more on what was right.  Looking past the surface, it truly reflected the husband and wife. They even forgot that their house looked different to others who drove by. They fully embraced what was theirs and their way of life with the house became normal to them.

This was a house that few could fully appreciate, understand, or accept. A house with challenges yet a source of pride. A house deemed by some as a waste of time and energy. A house that some would have abandoned or condemned. A house that taught one couple about perseverance, beauty, flexibility, team work, unconditional love, and the true meaning of life.

Getting a Laugh

Jaycee has emotions. She feels all the feelings we do. I love when she laughs. It makes me feel so good to hear her sweet giggle erupt uncontrollably. Of course, if there's something I can do to make it happen, I will do it again to hear that laugh.

Here are things that make her laugh:

-When I sing in a silly voice
-When I tickle her
-When she watches certain shows like Kipper
-When I bounce or spin her around in a swimming pool
-When her brother falls or trips or does something clumsy
-If a group of people are laughing, she'll join in too....even if she doesn't know what's so funny.
-When a baby sneezes
-When she goes down a slide
-When she rides a carnival ride
-When I drop something that I'm working on


She finds laughter in life. Despite her illnesses. Despite her problems. Jaycee laughs. She has joy in her life in nearly every place.

I can learn something from her.

Hospital Emotions

Every area of the hospital has a different feel for me. The emergency room is a mixture of relief that we arrived at the hospital in time and stress as we await initial testing and diagnostic work up. The regular hospital floors generally have a feeling of calmness with a mild amount of stress. On the floor, there are periods of happiness that things are improving or sadness that the healing is slow but these are not intense feelings. Even going to the hospital for a doctor's appointment has it's own feel. The feeling is one of tolerance in being in a place with so many bad memories but also joy that there is no "danger" factor in the simple clinic visit.

The I.C.U. is the place with the strongest feelings and most negative conations for me. For 8 days, Jaycee was recently in the intensive care unit (I.C.U.) due to complications from a pneumonia and the rhino virus. Jaycee has been in I.C.U. 4 times now for breathing issues like pneumonia and a few other times for surgery recovery. The I.C.U. is known for things going from calm and stable to chaos in a moment without warning. The worst day for us with this admission was day one when Jaycee's breathing got so bad that a ventilator was being discussed. Fortunately, she improved but needed bi-pap support for several days.

There were calm moments for us as things slowly improved for Jaycee but we were well aware of heartbreak and bad events happening around us. When a large group of the I.C.U. team gathers outside a room, I get nervous for the child and the family. We have been that room before where the team congregates and makes a plan to adjust for the latest hiccup. As I sat in the hospital room, my mind couldn't help but recall the horrible, scary time for us in I.C.U. last fall. I thought about how Jaycee's blood pressure crashed and sent her spiraling downhill so quickly. I thought about my many breakdowns in the room, the hall, and the parent lounge. I thought of the uncertainty and the most horrific events in that stay that still haunt and affect me now. I thought I was losing her. Months later, I'm 9 beds away from where all that activity happened. I'm in another serious situation with my daughter, and I'm helpless again. I'm encountering some of the amazing nurses and doctors that helped her the last time. I'm grateful for them but at the same time, I don't want to see them again. I want to forget about that time in Jaycee's life when I wondered if she'd make it back home.

The I.C.U. is scary. Until the illness hits its worst point, there's uncertainty, worry, stress, panic, and fear. There's a reassurance that there are people around who know what to do, but also the realization that not every child pulls through every time. We have walked by rooms full of family members saying good-bye to their child. It's awful. It's intense. It's your worst fears of a mother being thrown in your face to deal with.

The best thing about the I.C.U. is when your child is deemed stable and well enough to leave, exiting those double doors hoping never to have a reason to walk through them again. I left I.C.U. happy that Jaycee survived, was improving, and on her way to recovery. But I also left with more emotional baggage, worries about the future, and fears about how this illness will affect her health in the near future.

When things go wrong\I.c.u.

There are times when Jaycee is sick with a cold that causes me to be nervous. Nervous that she will get worse. Nervous that she will end up in the hospital again. I find myself pacing the floors, checking Jaycee with the monitor frequently, and just feeling more stressed. I worry she will get sick and things will go horribly wrong like they did last year. But, for 8 months Jaycee has stayed out of the hospital. She has been sick but I was able to treat her at home. It has been nice. Still, during times of illnesses my guard has never went down, with thoughts drifting back to last fall when Jaycee was on a ventilator for three weeks.

Sometimes no matter how much I try, things can go wrong quickly. There has been a perfect storm of bad things happening that ended with Jaycee back in the ICU currently. First, it started with a trip to the dentist to get 4 teeth pulled. That led to Jaycee drooling profusely and not being able to control her saliva. Her numbness also led to her severely biting her lip. Then, after we got home from the dentist. She was wheezing, which I assume is from the gas they gave her. The next day, she's still wheezing. By that night, a cold seems to be developing. The next morning, it is clear that something has settled into her chest. In less than 48 hours, Jaycee went from being happy and fine to being driven to the hospital by us. I didn't even have time to panic or pace the floors or wonder how this will all play out because it happened so fast.

I was happy when the ride was over and we were in the emergency room. My role as nurse was now going to be played by a real one who knows what they are doing. Hours pass in the emergency room and Jaycee only gets worse. She was sent to the intensive care unit and went on a bi-pap machine full time. Diagnosis: rhinovirus (3rd time positive for it in the hospital) and pneumonia (3rd time this year)

It is scary being in this place again that I have tried to forget about since her time here last year. If you find yourself here once you pray you are never here again. it is draining. I don't want my little girl to suffer and be this sick. And when she almost had to be intubated again a few days again I thought I was going to be physically sick. Fortunately it didn't get that bad.

So we sit in icu another day waiting for her body to heal and hoping that day comes quickly.

What Jaycee Brings Out

Over the years, I have found that Jaycee brings out the best and the worst in people. With children, there are immediately some who respond to her with smug looks, rudeness, and intolerance. Maybe they use mean language with her and maybe they just ignore her. These children don't know how to respond to a nonverbal child who looks a little different and does things a little different. Perhaps, these children are stuck up. Maybe they have never been around someone with a disability. Maybe they don't understand why she is like she is and she confuses them. For whatever reason, Jaycee can bring out the worst behavior in some children.

Then there are the children who are drawn to Jaycee out of love and care. They choose to sit by Jaycee, hold her hand, or give her hugs. They ask questions about how she communicates and what her favorite things are. They see her as a person. At church, these children have requested prayer for her so that she will have the ability to speak. Perhaps these children have a family member with a disability. Perhaps, they just have an innate ability to take an interest in people that some would ignore. Maybe, their parents have spent time talking to them about children who are different. Whatever the reason, Jaycee brings out the best in these children.

At Bible school last week, there were a few girls who took an interest in Jaycee. They offered to feed Jaycee her cupcake, even though she was capable of feeding herself. They took Jaycee to the bathroom for me and escorted her around the church. They wanted to be on her team for the games and offered their help to her so that she could participate. These girls asked me where she went to school, what signs she knew, and other questions about her life. It was wonderful to observe children giving Jaycee friendship and love that she desperately craves. She signed "friend" every night when they left church and cried.

I don't know what makes some children react the way they do to Jaycee. I try very hard to not look down upon the children who mistreat Jaycee. After all, I was never the child who tried to befriend a child with special needs. I didn't know how to approach them or interact with them. I wasn't mean but I didn't try to be nice. So instead of focusing on the children who don't make an effort with Jaycee, I try to focus on the ones who do. I am thankful that she has peers who want to engage with her. I admire these children. I see the gentle spirit they have inside of them. It is a gift from God.

Jaycee (girl in glasses in the center) praying at Bible school with her peers.

Convention Highlights

I was blessed to be able to attend the National Down Syndrome Congress convention last weekend in Indianapolis. Due to my local Down syndrome group providing my family a scholarship, I was able to attend this convention for the first time.

My husband and I attended the convention alone. I called it a vacation. He referred to it as something else...you can guess. Jason is a welder and not really in to learning about new research findings or how to teach ___ skill. But, we both really enjoyed ourselves and learned new information. He said he'd even go to another convention, so that was a good sign. As for the kids, they got to spend some quality time with grandma, who offered to watch the kids so we could attend the sessions in peace. Grandma got her on education on running a bi-pap machine and all things Jaycee.

The good things about the convention were:
-Hearing some inspiring stories that show how well some with Down syndrome are doing.
-You listen and learn from people who are well educated about Down syndrome.
-If you "stalk" a speaker after their lecture, you can ask them specific questions about your child. The speakers are usually good to parents and offer any suggestions they can know. My husband and I each got some personal advice on our daughter.
-You are surrounded by families dealing with issues like you. I hardly know anyone in my area with a child on a bi-pap but there were numerous there at the conference! It makes you feel less isolated.
-The exhibit hall is full of books, bikes, toys, and clothes that are for/about Down syndrome. I discovered a few products that I never knew existed.
-I came home feeling inspired to try some new techniques and with some more knowledge.

The bad parts of the convention were:
-People's phones or Ipads went off during the lectures. : (    I'm easily distracted!
-Hearing the success stories were inspiring but also left me a tiny bit sad for a moment. My daughter has so many health issues and educational difficulties that I have to admit that I was a little jealous at times. I wish my daughter didn't have so many struggles with her health or her speech.