Schwartz-Jampel Syndrome

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    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?

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    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.

    Cami Smith

    Letter to Boy With Shwartz Jampel Syndrome

    To Giovanni, the 10-year-old boy with the same syndrome as me, I have read that you and I share the same diagnosis, Schwartz Jampel syndrome (SJS), but a different type. My syndrome is known as Schwartz Jampel syndrome type II/Stuve-Wiedemann syndrome. Type I and II were identified early on. As of now, type II and Stuve-Wiedemann syndrome are known to be the same. The moral  I would like for you to take from this, is that everything will be OK. I am currently 27 years old. Until I did my own research about one year ago, I was informed by my geneticist that I am the oldest to have ever been documented with our syndrome; the second oldest being my sister of exactly two years and five days younger than me. You see, I went completely undiagnosed until I was 19 years old. It wasn’t until my younger sister went to a geneticist when she was 17, that we had a potential diagnosis. We finally got were tested and formally diagnosed when I was 21 years old. I will tell you, that was one of the best days of my life. I want to tell you that because we (myself, my sister, you, along with others) have defied the odds. I understand the fight you have to endure on a daily basis. Most with our syndrome pass at an early age (infancy) from hyperthermia or respiratory failure. I am here to tell you that no, it doesn’t get easier with age. I have had numerous orthopedic issues along with dry eyes, and everything else. To this day, my most scary encounters include a strep infection in the bone (my leg) along with respiratory failure. Both came so suddenly; my body could not keep up. It was my 17th birthday when I was admitted to the hospital with a bone infection, which shut down my entire body. I underwent numerous blood transfusions, as well as a fusion of my leg after discussing an amputation. When I was just 20 years old, a kidney infection went septic within 12 hours. I was on life support for eight days. To me, it is as if those days never happened. But I have seen photos of what my family saw from those scary times. Since my respiratory failure incident in 2010, I have never been the same, but I am so grateful to be here today, even though I cannot make it through a full day without a nap. My intent in writing this message is to tell you that things don’t necessarily get any better. You will continue to go through many battles with your body. Please know that you are not alone. I too, along with so many, live in constant pain. We may not go through the exact same things, but I know how you feel when you want to give up. I have been through so many surgeries in my life, that I have lost count. Please work your hardest to have a positive attitude and a sense of humor through your endeavors. That is the only thing getting me through mine. I have just returned from an out-of-state appointment, where doctors have again told me they don’t know what to do. While I have been told this numerous times in my past, it is still one of the most difficult things to hear. I am now trying to come to terms that once again, I cannot be helped. When I was diagnosed in 2009, I was told that I was the oldest in the world to ever live with the syndrome. I have since done my research and found an individual about eight years older who also has the syndrome. Don’t ever give up, and know that you are not alone. We want to hear your story. Become a Mighty contributor here . Getty Images photo via lolostock

    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 .

    What I Have Learned About After My Son's Nine Surgeries

    As parents of children with disabilities, we hear all the time how important it is that we take care of ourselves. Our children need us, and we have to be at our best. What was always difficult for me, and still is quite frankly, is taking care of myself when my son is facing difficult procedures. I feel guilty thinking of myself during such a difficult time for my child, and I feel like everything has to come second to my child. If you can relate, there is nothing wrong with feeling this way. Our children are our whole world. But if you are like me, burying your emotions only makes dealing with them later that much worse. Here are some things I have learned along the way. 1. It is OK to be angry. My son is going into his 10th surgery next week, and to be honest, I am furious. Not at my son, of course, but I am angry he has to endure this again. I always felt so bad to be angry because I felt like it was wrong to be mad at the situation. Through therapy, I have learned what I am feeling is completely normal, and in no way does my anger at the situation mean I am angry with my little boy. 2. Take time for yourself. There has been so many times during my child’s numerous procedures that I have turned down help from medical staff and family. Only now do I realize how important is to accept help when it is offered. I personally felt like no one can care for him as well as I can, but how can I be at my best if I am going days without sleep? The reality is, the medical professionals can and will do the best for your child. Your family will also do their best and love your child as you do. Take the help. Catch your breath. You and your child will be better off for it. 3. Cry when you need to. I know how strong we parents are. We are warriors just like our children. We have spent hours learning medical terminology. We have slept sitting upright in hospital waiting rooms. We fight for the best medical care for our children, and we battle insurance companies almost daily. But you don’t need to be strong all the time! I personally refused to let medical professionals and my husband see me cry. I didn’t want anyone to see how devastated I was, and I was afraid of how others may feel if they saw me cry. I thought I had to be the rock in the battle. Please know that crying doesn’t make you look weak. You are only human. My advice — cry hard and cry as much as you need to. If you let that go, you can feel so much better for it. 4. Eat well and exercise. I know this is advice you have heard before, but it is so important. I refuse to leave my son’s bedside or to leave the OR waiting room when he is in surgery. That meant there were many times I went without eating. In the heat of the moment, food is the last thing on your mind, but your body needs fuel to keep going. I’ve learned to pack food for myself so I don’t need to leave my son’s side for a second. Exercise is a great way to shake off emotional stress. Please accept help when it is offered and go take a walk. When I return to my child with a clear head, I’m ready to handle any challenges that may arise. 5. Talk to your partner. Sure, it is easier to go through the motions than it is to have difficult conversations about your feelings and your child’s health, but these conversations are absolutely necessary. My husband and I used to avoid these conversations at all costs, and it wasn’t good for us. Now that we have these conversations and have them often, we understand each other so much better. We understand what each of us needs from each other now, and we are a better team for our child because of it. Communication is key. 6. Do something nice for your partner during the tough times. I understand you are exhausted, but so is your partner. It’s so important that you both work together as a team for your child. You don’t need to do anything extravagant. Something as easy as running the sweeper, doing the dishes, or letting your partner sleep a few extra hours can really boost a person’s spirits. I remember a time when my husband not only let me sleep in, but I woke up to breakfast in bed. I was so stunned and so exhausted that I just started crying! But after breakfast, I was ready to go for the day. Just a simple act of kindness and understanding can make a world of difference for your partner! 7. Make recovery fun. Our children are fighting such big, grown-up battles. Try to improve the atmosphere by creating a fun environment. Sing. Dance. Laugh. Listen to Christmas music in July. Stay in your pajamas and build that blanket fort in the living room to watch Disney movies in. This will not only create a happy environment for your family, but it may even help your child forget, if only for a moment, that they are recovering from another procedure. 8. Get out of the house when your child is ready. When our child was a few weeks into his recovery from hip surgery, we all definitely had cabin fever. As soon as he felt up to it, I loaded him up in his wheelchair and went for a walk around the block. He was so nervous that people would stare at him in his body cast, but thankfully we had amazing neighbors who were all just so happy to see him. This became a daily routine, and it really helped to make those six weeks in the body cast fly by. 9. Make alone time for your other children. While they are not going through the same medical battles physically, they are going through all of the emotional battles. Take the time to make them feel special and answer any questions they may have. Let them help you care for their brother or sister who is recovering from a procedure. And when your child is doing better, take your other children out to a movie or out to lunch. During these medical battles, the siblings may need to be reassured they are not being lost in the shuffle. If you have a child like we do with a very rare condition, it is so easy to feel overwhelmed. I’ve been there. I am still there. Our child will likely face numerous more procedures and therapies over the coming years. My husband and I will still have to work hard to make sure we are communicating properly not only for our child, but for our marriage, too. As parents, we need to make sure all three of our children are making it through these procedures with a happy heart. These few tricks I have learned along the way have made a huge difference for us in our experience with Schwartz-Jampel syndrome. I hope they help you, too. We want to hear your story. Become a Mighty contributor here .