Shannon Algarin

@shannonalgarin | contributor
Shannon is a stay-at-home mother of three and happily married. Her time is dominated by their children, hospital appointments, and advocating for SJS awareness.
Community Voices

Feeling defeated

Parenting a child with a rare condition is like a wild roller coaster ride. Lately I have felt defeated. 2018 was supposed to be the year for my son to finally go without a surgery. I had a big party planned for New Years to celebrate the fact it was the first year without a surgery since 2010. But last week that all changed when he needed to have a hernia repaired and his appendix removed. Granted this was a simple procedure compared to previous surgeries, but nonetheless, we were really looking forward to hitting that milestone. We’ll just have to see what 2019 brings.

Community Voices

Does your family have a "tradition" to make hospital trips less stressful?

My son has a rare condition called Schwartz-Jampel syndrome. He requires many trips to a children's hospital 4 1/2 hours away. That is really hard with 3 small kids! We always listen to Christmas music while we travel to and from the hospital regardless of the time of year. It just lightens the mood and we talk about all the things we want to do at Christmas time. We also stop at the McDonald's at the half way point home for milkshakes to treat ourselves for what is usually a long, stressful day. I am curious, what do you and your children do to keep these kinds of trips lighthearted?

2 people are talking about this
Community Voices

Does your family have a "tradition" to make hospital trips less stressful?

My son has a rare condition called Schwartz-Jampel syndrome. He requires many trips to a children's hospital 4 1/2 hours away. That is really hard with 3 small kids! We always listen to Christmas music while we travel to and from the hospital regardless of the time of year. It just lightens the mood and we talk about all the things we want to do at Christmas time. We also stop at the McDonald's at the half way point home for milkshakes to treat ourselves for what is usually a long, stressful day. I am curious, what do you and your children do to keep these kinds of trips lighthearted?

2 people are talking about this

There Are Days My Son Says He Hates His Wheelchair, and That's OK

I remember the day my son received his power wheelchair. Before that, Giovanni had a manual chair and relied on others to push him around school or on family outings. Giovanni was frustrated with his manual chair because he felt he had zero independence. He couldn’t come and go as he wanted. Giovanni had to ask someone else for help. So, when Giovanni received his power wheelchair, it was a life changer. He could come and go when he wanted to. Giovanni could reach counter tops by using the lift built into his chair. He loved to show off the reclining feature when watching movies and enjoyed driving through the snow for the first time. There was so much joy that came with this amazing piece of equipment and we were thrilled with the boost in self-confidence this green machine brought our little boy. Fast forward two years and we, as parents, are still just as happy with this amazing piece of machinery — but there are days Giovanni voices his hatred for his chair. After many conversations, we finally understand what Giovanni was trying to communicate, and it is OK that he hates his chair sometimes. Giovanni can walk short distances. He can go even further when using his walker, but he cannot walk all day, every day. His condition, Schwartz-Jampel syndrome, causes tight muscles and he has joints that cause him pain. He also becomes exhausted very quickly, and it became obvious we needed to look for a way to improve Giovanni’s quality of life, especially once he started school. Recently, Giovanni’s been begging to leave his wheelchair at home and use his walker more. It is not because he has miraculously healed and can walk without pain. It is because Giovanni desperately wants to run and walk without pain or exhaustion. He wants the choice to go to school equipment free. You see, it is not that he really hates his wheelchair — he is furious with his condition. The first time Giovanni started crying and saying he hated his wheelchair, I took it literally. I felt sick to my stomach, like I had failed as a parent. My job as his mom is to make sure he is comfortable with his equipment so he can use it with confidence. We feel it is incredibly important that he learn how to be independent now, that way, when he goes to college or decides to live out on his own, he has developed his own way of completing tasks. We always tell Giovanni he can do anything anyone else can; we may just need to find a different way of doing it. You can imagine the failure I felt when he broke down begging us to leave the chair at home when we were going out for the day. We talked about Giovanni’s wheelchair and why he was saying he hated it. After a while, it became apparent he didn’t really hate his wheelchair, but it was the only way he knew how to express his feelings. Giovanni is angry with the reality that he needs his wheelchair. He is tired of people looking at his wheelchair and not him. Giovanni is furious with his condition, which he feels put him in that chair. Once we discovered this is the reason Giovanni keeps repeating the phrase, “I hate my wheelchair,” we told him we understand why he hates his wheelchair and there are days we felt that way, too. We explained how completely natural it is for him to feel this way and just how proud we are of him. It is not easy for a 10-year-old boy to talk about such a complicated and emotional topic, but Giovanni took it upon himself to talk to us about it. He knew he needed to tell us, so we could help him understand his thoughts better. Maybe we have done a better job raising him than I had thought. I am sure there are many children like our Giovanni out there. I am positive there are many parents out there like us worried they are failing at helping their child become comfortable with the equipment they need to be independent in their lives. My message to you is: please do not panic if your child tells you that they hate their wheelchair. Try not to feel like a you have completely failed in helping your child learn to be as independent in life as they possibly can be. Yes, “hate” seems like a strong word, but chances are your child is just trying to vocalize their anger with their condition. Giovanni was trying to tell us he was very angry he needs equipment when his friends do not, and I bet there are many children like Giovanni who feel that way. It may take many conversations to get to the root of the problem, like it did for us, and my best advice is to do more listening rather than speaking. Giovanni just needed us to listen, acknowledge, and validate his feelings. My son sometimes hates his wheelchair, and that is OK. Our feelings are completely natural and we will continue to work through them as a family. Sometimes, it feels like we “hate” his wheelchair often. Sometimes, we go months without feeling that way. Those cycles of feelings are normal, too. The important thing is that we continue to talk about why we really say we hate the wheelchair.

Why It Is Important to Show the Film Wonder at Schools

With the school year coming to an end, lots of schools are doing fun activities – everything from watching movies to extra outside time is on the table. My oldest son’s school is no different, and when he learned his class was going to watch the film “Wonder,” Dominic was beyond excited. He knew this movie was important for many of the students not only because of the anti-bullying message, but because this movie is something we our family could finally relate to completely. As Dominic stated when he returned home from school that day, “It was like my friends could finally see what our life is like.” Dominic’s younger brother, Giovanni, has a rare condition called Schwartz-Jampel syndrome (SJS). Giovanni has had 10 surgeries to date and seven of them have been on his face. The child in the film, August, or “Auggie” as his family affectionately calls him, has a different syndrome and had different medical procedures, but when we watched the movie for the first time our family felt like someone turned our life story into a movie. Like August,  Giovanni has been bullied at school for the way he must eat because of his facial structure. Giovanni’s medical procedures on his face were all to help him breathe and see properly, and just like Auggie, Giovanni has scars from procedures on his jaw and face. Giovanni has come home from school just livid with the way he is treated sometimes, and the film did a great job of portraying that. We were so excited to finally see a character like Giovanni on the big screen because he finally had someone who he could completely relate to in a film. What we were not expecting was the excellent portrayal of Auggie’s sibling, Olivia. “Via,” as her family calls her, was obviously feeling left out during the film, and Dominic felt a real connection with this character. You could notice her walking behind her parents and Auggie to school. I could feel her loneliness coming through the television as she walked to school on her own. I cried for her when she was missing her grandmother who always made her feel important. When Via’s alone time with her mother was interrupted because she had to run to Auggie’s school to pick him up, I felt nauseous. “Via is Dominic,” I thought. This has happened to us before where special plans for one-on-one time had to be canceled for Giovanni’s needs. It can be difficult for siblings of children with disabilities to find their own identity. Dominic always felt like he was more Giovanni’s brother than Dominic, just like Via seemed to feel more like Auggie’s sister than Via. It has been hard for Dominic to find his own identity and his own path. The film goes on to show Auggie’s complicated relationships with students at school. Its powerful anti-bullying message is incredibly important for students to hear. But what is equally important is the fact that the students can see a family like ours portrayed in a film. It is one thing for Dominic to tell his friends what it is like to watch what his brother goes through, but it was easier for his friends to really grasp it after watching the film. Now they understand why Dominic misses more time from school than they do because his brother needs frequent medical attention. They make more of an attempt to be more forgiving if Dominic is worried or anxious about his brother. Equally as important, they understand why it is necessary for Dominic to be seen as his own independent person rather than Giovanni’s brother. Our family’s hope is that more schools show this film to their students. If more students are exposed to films like this, then perhaps they will be kinder to children like our Giovanni. Maybe they will remember to ask children like Dominic how they are doing. I cannot give enough praise to the excellent message against bullying in the film. For us it is also important that families like ours are put in the spotlight so others can really see what our life is like. I genuinely hope that Hollywood keeps making television shows and movies depicting what life with a disability really looks like. After all, it is important for all of us to be represented and to be able to see characters like ourselves in film.

It's Time For the Competition to End Among Parents of Disabled Kids

“If you think your child has a lot going on medically, why don’t you spend a day with my child?” This is a phrase I have heard more than once; not only directed at me, but directed at other parents. As parents of children with disabilities, we find ourselves in a small “club.” All too often, we feel isolated and alone because it is hard to maintain friendships when your child’s medical needs dominate your entire life. It is hard to plan a lunch date when you are constantly running to doctor appointments and different therapies. Then there is also the reality that some friends will leave because they cannot bear to watch what your child goes through. If you are like me, you have used the internet to find other parents of kids with disabilities to connect with, hoping to form friendships and exchange ideas. Most of the time, it is incredibly rewarding, and I have made friends from all over the country going through almost the same medical battles we are. But, I must also say, sometimes it can be very disappointing. I am not sure why sometimes it feels as if it becomes a competition between us. We are all fighting battles with our children. We are all trying to find the best and least invasive treatments for our children. I know we all fight our insurance companies just to get treatments our children need covered. So, why do we waste what little energy we have left to compete against one another rather than support one another? Do we really need to argue over who’s child is more ill? I don’t want to be a part of that argument. I wish my child wasn’t living with a rare condition and I wish yours wasn’t either. In my opinion, I think we get so caught up in our own feelings that we forget about the value of other people’s feelings. One person’s point of view may be very different from yours. Even though you may not agree with how one person manages their child’s condition, we must remember their opinions and feelings are just as important as our own. I do believe it is healthy to discuss and even debate treatment plans, because that is how we learn from one another. It is how I learned about a very important medication for my child which has changed his life. But to imply that my feelings or anxiety about my child’s condition is unwarranted because you think your child is “more sick,” is just not productive for anyone. We expect people to not bully our children, so why is it OK to bully each other? We need to set better examples for our children and the world. It is time to start holding each other up with support rather than scrutinizing each other’s feelings and decisions. I have always tried to make sure that other parents know I hear them, whether it is on social media or in the hospital. Am I perfect? No. Have I made someone else feel the way I did when someone tried to minimize my son’s medical condition and my feelings about all of his treatments? Possibly. But with awareness comes change, and I am hoping to bring some change in our conversations. Hopefully, now that this tough subject is front and center, we can be aware of one another’s feelings and stop the competition. My feelings matter. Your feelings matter. Together we are better than this.

Happy Mother's Day, Mommies of Kids With Disabilities!

Mother’s Day is fast approaching and I want to take a few minutes to recognize my fellow Moms of kids with disabilities out there. Chances are, you might not get a day off, or even a few hours off, to pamper yourself as many other Moms will do this Sunday. You may be administering medications and helping your child complete their daily therapies. This Sunday may just be a regular day for you, and I need you to know just how important you are not just on Mother’s Day — but every day. You are amazing, Mom. Never forget that. I see you rocking your child before they are wheeled off into surgery. I hear you whispering encouraging words to your child to help ease their anxiety about the coming procedure. You have the most reassuring look on your face as you watch the hospital team wheel your child’s bed off to surgery and you wave goodbye and give a thumbs up. Then I cannot help but notice the tears in your eyes as your child rounds the corner with the nurses and is completely out of your view. I see you pacing in the OR waiting room or staring off into space consumed by your thoughts of worry. You are amazing, Mom. Never forget that. I’ve watched you sit by your child’s hospital bed listening to the monitors beep. You anxiously monitor your child’s oxygen levels, heart rate and blood pressure just looking for a sign that everything is going to be OK. You haven’t showered in a couple days and only leave your child’s bedside long enough to go to the restroom or to wash your face. I hear you questioning every single person entering your child’s room, making sure that your child is receiving the best treatment plan available. Even though you are exhausted because you have only slept a few hours sitting in the chair next to your child’s bed, your face glows when your child is awake, like all the anxiety you have been feeling has melted away. You are amazing, Mom. Never forget that. I hear you on the phone fighting the insurance company to cover a treatment that was initially pre-approved and then was later denied. I see you on-hold for hours at a time and fumbling through mountains of paperwork when a representative comes on the line. You plead as to why the medical treatment your child received was absolutely medically necessary and vow to appeal the denial if you are billed. I feel the anxiety you feel knowing this is another insurance fight you don’t need on top of everything else. Finances are tight between all the medical appointments, medical equipment and therapies. You know you cannot afford to pay out thousands more. You are amazing, Mom. Never forget that. I watch you try to carve out some special one-on-one time for your other children. You feel guilty because so much time is devoted to their sibling with disabilities and you need them to know how important they are. I see your amazing children remind you they not only understand, but they are happy knowing their brother or sister has the best caregiver in the world: you. They know you are amazing, Mom, and they know how much they are loved. Never forget that. It is night time and you are exhausted after another long day. I see you check on your child before retiring for the night. You check to make sure your child’s breathing equipment is working properly and make sure he doesn’t need anything else. Your head finally hits the pillow, but now you are wide awake wondering if you should call the doctor to ask about a new medication you read about. I see you worrying if you are doing enough for your child, if you are good enough to be the parent your child needs. Well, amazing Mom, I am here to tell you that you are! You are exactly who your child needs and your child is thriving because of you! So, rest easy, Mom. You are amazing. Never forget that. Happy Mother’s Day!

I Had PTSD as a Result of My Son's Multiple Hospitalizations

It has been three days since my son was released from the hospital from his last overnight admission. This time, it was an observational stay for stomach pain. We were discharged without any real answers, which was no surprise. It was almost predictable because most doctors who are unfamiliar with our son’s rare condition seem to shrug their shoulders at us. At least we could rule out appendicitis and will need to follow up with Giovanni’s specialists. Besides ruling out a potentially serious condition, we were thrilled to be home in time for Giovanni’s brother’s birthday. We rushed home once we were released to bake a cake and get into celebration mode. So many people have hailed me a hero because I was seemingly able to bounce back like the hospital stay never happened. But I am here to tell you it is all a façade. It is all fake. It is a face I put on to hide the truth. The truth is I am still riding a roller coaster ride of emotions behind the face I have painted on. When the doctor explained to my husband and myself that Giovanni would need to spend the night in case he needed to be rushed into surgery, I felt my heart rate elevate. You would think this would be a cake walk for me after Giovanni’s 10 surgical procedures and numerous hospital stays, but it doesn’t get easier. I honestly believe it gets harder because you know how quickly things can change in an instant. I know the feeling when the doctors come rushing in to the room in the middle of the night. I know the sheer terror of running behind the nurses pushing my son’s hospital bed into the nearest X-ray room fearing an infection in his bone after a surgical procedure. These helpless moments stick with you. They haunt my dreams. I am ashamed to say I took my emotions out on my husband after we were admitted to the hospital for the night, and it is not the first time I have done that. All marriages need work, but I’ll admit there is a lot of strain on ours after everything we have been through with Giovanni’s medical needs. Marriage counseling was our saving grace, and during those sessions, I was diagnosed with PTSD. This diagnosis was a hard for me to come to terms with, and I am still learning how to better manage my anxiety in these moments when I am triggered. I have, however, become a professional at hiding it. Not one doctor or nurse knew what I was going through. After my husband left the hospital and after Giovanni finally went to sleep, I spent time in our bathroom just sobbing. I was careful not to be loud and wake up Giovanni. I was also aware of when the nurses would be making their rounds for vital signs. I made sure I had it together before they returned to our room. I am not a super hero. I am just a flawed human trying to be the best mom I can be for the most amazing little boy in an unfair situation. There are so many better ways I could have handled this situation. I should have recognized my anxiety was triggered. I needed help but I didn’t realize how quickly I had spiraled out of control until I was home. As a mother, I feel an overwhelming need to be the strongest person in the room, not only for Giovanni, but for my husband as well. When these feelings of anxiety rise up in these situations, I become angry at myself for feeling that way, and before you know it I am taking my anxiety and anger out on my biggest supporter: my spouse. None of this is heroic behavior and it is time to stop trying to be the savior of the day. It is time for us parents to get real about how we feel and seek help when we need it. We are humans with feelings, and we are put in the most stressful situations with our most precious children. It is time for me to stop trying to be a super mom with a cape and get real with my own needs for my child. We need to step forward and admit we feel the stress and anxiety. We are not emotionally numb beings. We feel fear and anxiety as often as we laugh and smile. Acknowledging our emotions and admitting to them is the most heroic thing us parents of kids with disabilities can do.

Making the Decision to Leave the Workplace for My Disabled Son

The decision to quit my job and stay home with our disabled child was one of the hardest decisions that my husband and I ever had to make. In 2010, our son’s health caused me to miss many days at work. Our child had just been diagnosed with a rare condition called Schwartz-Jampel syndrome. Between illnesses, doctor appointments, therapy appointments and falls, I had missed so many days from work that I was receiving written warnings from my supervisor for my attendance. I was worried about keeping my job, but I was also incredibly worried for our 2-year-old son. The final straw was a terrifying phone call I received from our babysitter while I was at work. I answered the phone to a frantic voice on the other end explaining that Giovanni had fallen on the porch and cracked his head open. The bleeding wouldn’t stop. I sent my husband a text message that I had to leave work again as I ran out the door to rush Giovanni to the emergency room. I explained that I worried this would be the final straw and I would be fired. My husband, who was working as a package courier at the time, suggested that perhaps we needed to consider if it was time for me to stay home and be Giovanni’s full-time caregiver. After four hours in the emergency room and seven staples in Giovanni’s head, we could finally go home. I was so worried I was going to lose my job. I was worried about our finances, especially since our son’s hospital was a four hour trip each way. I knew deep down he needed me with him every day, but I couldn’t stop worrying about money. I was also very proud of my job and the fact that I held a good position in the company. When we opened the door to our home, we were greeted by my husband who had just gotten home from work. He saw the terror in my face. The fear I had for my job. The sadness because Giovanni had fallen again because of his condition and required medical intervention… again. My husband pulled me into our kitchen, took my hands and said, “Honey, it’s time. You need to stay home with Giovanni. He needs you and things aren’t going to get better for him. It’s only going to get worse.” I remember tearing up and saying, “How? How can we make it on one income?” My husband replied, “We will make it. We will make it because we love our children. He comes first. Trust me. We will figure this out.” We spent hours that evening talking about it, and in the end I decided my husband was right. I left my job with a huge knot in my stomach. I knew I was doing the right thing for Giovanni, but I was unsure about our financial future. Seven years later, here I sit knowing we made the right choice for our son. Giovanni has gone through nine surgeries, months of rehabilitation, and hundreds of trips to a hospital that is four hours away from our home. He currently has his tenth surgery scheduled in just 15 days. Lord knows none of this has been easy. Financially, we have more hard times than good, but I believe with my whole heart that we made the best choice for Giovanni. I know that because I am his primary caregiver every day he is thriving. He can go to physical therapy every chance we get. We have the time to complete therapies with him every day when he get home. When he was too sore to go to school every day last year after his hip surgery, I was there to make sure he didn’t fall behind in his studies. While doing all of this, I even managed to attend an online college and receive my associate’s degree in communications. My hope is one day I will find a work-from-home position, so I can get back to work and still have the flexibility in my schedule to keep Giovanni healthy. If you are struggling to make the decision whether or not to become a full-time caregiver for a loved one, please take the time to decide if it is the right decision for your family. I am only offering you our story and how, for us, this was the best decision we could make for our nearly 10-year-old son. Believe me, I know this feels like an end of the world decision to make. Looking back, I would make the same decision, and I sit here with zero regrets even on the financially tough days. It is not a choice to be made lightly, but sometimes it is the tough decisions that we, as parents make, that become the best choices we have ever made for our incredible children. We want to hear your story. Become a Mighty contributor here .

Why Dwarfism Awareness Month Matters to My Family

“Why are you so small?” “Why is your little sister so much bigger than you?” “What does dwarfism mean?” “Are you a midget or a dwarf?” These are just a few of the questions my son encounters frequently. Giovanni was born with a rare condition called Schwartz-Jampel syndrome which is one of more than 200 types of dwarfism. I always talked with him about dwarfism, but Giovanni didn’t fully understand what that meant until he started kindergarten and saw other children his age. As a family, we have made every effort we can to bring awareness not only on the internet, but also within our community. It is getting easier for Giovanni to talk about his condition and what dwarfism means, but it wasn’t always easy. One week during first grade, the school nurse called every day shortly after noon saying Giovanni was asking to come home early. After the fourth day in a row, I began to wonder what was going on. When we asked him, he began to cry that the other children were mean to him at recess. Giovanni thought he would just avoid recess and the taunting by coming home early. The boys were making fun of him because he couldn’t walk fast. They even told him that he would never win a foot race because he walked “funny.” When my son started using his wheelchair, the children would say, “Look at the little baby in his wheelchair! Isn’t he cute?” I could go on and on about the comments made to my little boy that have broken his heart. Giovanni became sad not just because of the bullying, but he started to feel angry about being born with dwarfism. We have taught Giovanni how to explain his condition and dwarfism to his schoolmates. That has made a big difference and has really boosted his self-confidence. This year is the second year he has talked to his class about dwarfism on his own without my help. We are so proud of him, and he has made so many friends! The important thing for Giovanni was determining whether someone was making a comment because they genuinely didn’t understand their statement was hurtful, or if the person was just trying to be mean to him because he is different. For example, when a child asked him if he was a midget or if he was a dwarf, we knew the child genuinely thought there was a difference. The child didn’t know that the “M” word is incredibly insensitive to the little people community. We have since taught all of Giovanni’s classmates why that word is so hurtful. We take any opportunity we can to educate people and show that Giovanni is capable of doing things for himself. He just may need to find another way — like when he asked us to help him participate in a 5K for breast cancer. His power wheelchair made it possible for him to finish the 3+ miles under his own power. Giovanni is so proud of this accomplishment because he finished a race on his own, proving everyone that doubted him wrong. This is why the month of October and Dwarfism Awareness Month is so important. It gives us a chance to talk about dwarfism and to talk about which words are offensive. Shining the spotlight on dwarfism gives children like Giovanni a chance to showcase how they are capable of doing anything. They just may need to find another way to accomplish their goal. Talking about dwarfism allows average height people to see that little people are just that — little people. Not the butt of some awful joke. Little people have families, dreams, and goals they hope to reach in their lives — just like everyone else. We want to hear your story. Become a Mighty contributor here.