Hurler Syndrome

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    What matters most in your rare condition?

    <p>What matters most in your rare condition?</p>
    2 people are talking about this
    Tamara Cullere

    The Choices I Make Because of My Child's Hurler Syndrome

    When I have to cancel plans last minute, it’s not about you. When I can’t commit to going somewhere because I do not want to impose on the few people who can watch my son, it’s not about you. When I don’t call to check in or have a delayed response to something important in your life, it’s not about you. When my son can’t go somewhere or do something with you or others, it’s not about you. When I take too long to return a call or a text, it’s not about you. When I am tired, cranky, overwhelmed, angry, or sad, it’s not about you. When it seems like the rules of what is and isn’t allowed are always changing, it’s not about you. When I don’t want to leave my son, it’s not about you. When I can’t do it and need help, it’s not about you. The day my son was diagnosed with a rare disease, our life was flipped upside down. Our daily lives revolve around his disease and the care of his disease. Everything we do or don’t do is determined by what is safe for him first.  This has been the case for the last four years and while it might not be as critical in the future, it will most likely always be the way we make decisions. Decision-making is mentally exhausting. Unfortunately, as hard as thinking through all the options and weighing the pros and cons of each decision is on me, it is even more overwhelming for my husband. He tends to be more of an opposite side of the spectrum thinker; something is or isn’t allowed, there is little to no grey. Most of the time I try to find a grey answer to the question — keep my child safe but allow activities that they and others are looking forward to even if they are modified in some ways. Given our different abilities to think things through, a majority of the heavy lifting when it comes to decision-making falls on my shoulders. Not to say he does not assist, but I typically have to consider our options thoroughly and present them to him for a discussion. I don’t have the energy or mental capacity to play games with people. We don’t make decisions to purposely hurt other people or leave them out. We do not try to avoid people or situations just for the sake of it. We don’t have the energy for those kinds of games. We think first and foremost of our kids, specifically our rare disease warrior. We know that some of our decisions affect others, sometimes in ways we don’t mean or expect. But the reality is, it isn’t about them, it’s about us — or more specifically, it is about him. Maybe that makes us selfish. I know I have been called that and worse. Having a child whose rare disease will shorten his lifespan means I will do everything I can to keep him healthy and safe, even if people do not understand the choices I make or even if their feelings are inadvertently hurt by the choices I make. I do not set out to hurt other people or to have them affected by what we do and don’t do. But I am a mother, and as a mother, I put my kids first.

    Tamara Cullere

    When a Hospital Feels Like Home

    When my son got his unrelated cord blood transplant, I lived in the hospital with him for two long months. For those months the small room with a crib, a couch that unfolded into a bed, a bathroom, a small closet and thankfully a huge window that looked out onto the front entrance of the hospital was our “home.” The routine of the oncology floor became our routine:  4 a.m. labs, 10 a.m. rounds with doctors, nurses and fellows, saving diapers to be weighed, calling three times a day for meals. We also embraced the hospital routines: bagels on the 8th floor at 10 a.m. on Mondays, cookies on the 8th floor on Wednesday, spirituality group on Wednesdays that came with pizza and two times a month on Thursdays art therapy group. The cycle of these routines got me through each day and helped me differentiate one day from another. The time I spent was not unique or impressive. Some patients spend much longer while others much shorter. Regardless of the time spent, the hospital became another “home.” About once or twice a year my son gets admitted to the hospital for anywhere from one to seven nights. Every time I “move” back into the hospital with my son the routine and familiarity of it all covers me like a warm blanket. I know where to get extra blankets, when to miss the crowd in the cafeteria, and where to order the best cookies for delivery. In a weird way there is something comforting about being admitted into the hospital. While usually I have something new to fear and worry about and there are usually questions we are trying to find answers to, the people, the routine, the walls are all so familiar. I easily fall back into my “routines” when inpatient, as does my son. You would think having to balance everything at home while being in the hospital would be more stressful and in some ways it is. I have to manage my life from another state without being there. I have to rely on family and friends to pick up the slack. I sometimes only have the clothes on my back to sleep in and live in. But at the same time I get to breathe a little. I don’t have to prep the meds or get them for Benji, someone else does. I don’t have to cook or plan a meal, I just have to call downstairs. Someone else cleans the dishes and does the wash. I can have as much help as I need. I get to sit and just be present in the moment in a way that I can’t at home. It isn’t relaxing in the usual sense of the word because I still have everything else in my life that I am managing from afar, but I get to take a break from watching, worrying and overseeing everything when it comes to my son. I have a nurse who takes over that job for me and lets me just be. There is a weird prolonged state of mindfulness and being in the present that being in the hospital is for me at this point of our journey. It is not someplace I want to be, but I am OK being there. I am not saying that I want my son to be admitted in the hospital or that I feel more at home at the hospital than I do in my house. As a medical mom who has spent a ton of time in the hospital there is a level of comfort that I get from being there. I joke with some of the nurses that my son gets admitted yearly simply because he misses the nurses and wants to see them. We both have our routines when we are inpatient and there is comfort for both of us in that. We both find something reassuring and comforting about being in the hospital and while we do not want to be there, we do not feel out of place or unwelcome. The hospital and prolonged stays there are not “new” and “scary” they just are. They are a part of our journey and our life. I think that is one of the saddest things that we have come to have to accept on this journey … that we are as “comfortable” inpatient at the hospital as we can be and that it is another “home” in many ways.  

    Tamara Cullere

    The Loneliness I Feel as the Parent of a Child With a Rare Disease

    Having a child with a rare disease like Hurler’s syndrome, we are extremely lucky as we have a huge network of support. We have had a ton of family, friends and even strangers surround us with prayers, support and positive energy when we face various complications and issues with our son. Additionally, I am part of the MPS community both in real life and on social media which provides me with a network of people who “get it” and understand the ins and outs of this journey on a deeper level because they live it too. I also have a large family and friends both in the MPS world and not in that world who I can reach out to when I need it. I am so grateful for the number of people I have supporting my son, myself and my family.  There are many avenues of support I can reach out to when I need it, yet I am still struck by how lonely I still sometimes feel on this journey. Loneliness is a funny thing — one day it slowly creeps over you and another day it just slaps you in the face. When your child is being diagnosed with something you have never heard of and cannot pronounce, it is hard not to feel alone. You are overwhelmed by the information coming at you from doctors and specialists. Being fully invested in learning about the disease, you do your research and then become the source of information for family and friends about the disease and your son’s journey. You try to share as much information as you can and try to stay positive for them, but at the same time, you want to be held up by someone who has walked the path before you.  You want to feel like you have someone to help guide you and even if you find people who have gone through this diagnosis, sometimes it still doesn’t help you feel less alone in the journey.  The downside to everyone having a different journey with the disease is that there are some surgeries/complications/issues that you might not be able to find someone else who has gone through it to guide you. There will be some cases where you are the first to cope with the issue in the unique way you do. There were many days/nights sitting in the hospital with my son while he was in pain or struggling that I felt alone. He needed and wanted me and I was trying to give him as much strength and support as I could but I felt so depleted myself.  I would update family and friends and try to keep things more upbeat and positive even if I was not feeling it. At times I felt like it was my job to protect everyone from the daily harsh realities of what we were going through. By doing that I found myself stuck with the bad thoughts, feelings and fears and felt even more isolated and alone. I am one of those people who is very bad at self-care, and even when family would come to give me a break, I did not always know what to do for myself. I knew how to care for my son, how to worry, how to plan, how to ask questions, but I did not know how to lean on others, ask for help, or sometimes even accept the help that was given. Even now asking for and accepting help and support is hard for me. Years after his transplant, I can still say there are times I feel alone. No one else is in the exact same position I am in when it comes to my son, his diagnosis and my other children. I feel like the responsibility of getting and processing new information, scheduling and planning appointments and a majority of the major decisions fall on my shoulders. Not to say my husband does not help, but I tend to be the one that carries most of the responsibility for my son’s rare disease care. This is on top of my roles as a mother, spouse, daughter, sister, employee and friend. I am grateful that I have gotten a little better at self-care and at sharing what I am going through, but in my experience, loneliness while coping with your child’s disease never really leaves you. You can be surrounded by tons of family and friends all wanting to support you and yet still feel like you alone are the one coping with the disease and dealing with the ramifications of the journey. I am grateful for my network and my support system, and it is no fault of theirs that this journey still has me feeling like I am fighting a battle by myself.

    Tamara Cullere

    Finding Your Mantra as the Parent of a Child With Hurler Syndrome

    Within the first week of our son’s diagnosis with a rare and progressive disease, my husband and I were browsing a Home Goods store.  We were feeling angry, confused, numb and scared whenever we thought about his new diagnosis, and we thought about it most of the time. While browsing, a sign caught our eye, and after reading it, we knew we had to get it. The sign said, “You never know how strong you are until being strong is the only choice you have.” That sign seemed to speak to both of us and tell us that although the news of our son’s diagnosis seemed completely overwhelming, we would be able to get through it. It was a gentle reminder that while we might not realize it, we do have the strength necessary to deal with the disease and all that the disease and diagnosis entailed. When we got home, we immediately hung the sign up in our bedroom in a spot where we could both see it first thing in the morning and last thing before going to sleep. There were many nights where I was not able to sleep as feelings of fear, what if, anger and helplessness kept me awake late into the night. During these bouts of sleeplessness, I would often find myself staring at the sign and repeating the words to myself over and over like a mantra. Eventually, focusing on those words would calm me enough to help me fall asleep. Throughout the last four years, there have been many times I have found myself staring at that sign and reading those words over and over. When I am struggling at a doctor’s office or feeling overwhelmed, I subconsciously picture my sign and recite the words to myself. There is something very grounding and calming about those words, and they give me the strength and belief in myself and my abilities to advocate for my son that I need to keep moving forward. They help center me. I know that I can fall apart and I can also feel the weight of this journey.  Regardless of how low of a day I have, I know I can pick myself up and keep moving forward. Even when I doubt myself, this mantra reminds me that I am strong enough to help my son. That simple sign has given me so much. I feel there is strength in finding your own mantra to hold onto in difficult times. It could be a saying, a scripture passage, a song lyric, a prayer or even a quote — anything that provides a sense of calmness, hope or purpose. The simple act of reciting your mantra or rereading it over and over can bring about a level of mindfulness that helps you focus and center yourself. Each person is going to have something different that gives them strength and comfort, but the key is to find that something. You will never know how many times during your journey your mantra will help you get through a situation. For our son, we found a sign that said, “Be Brave Little One.” It has a different meaning for us than it may for other families, but we have filled our house with that saying. We want our children to remember that they are brave in the face of all that our son and his siblings go through due to this diagnosis. My hope is that they get some comfort from it until they are able to find their own mantra and their own sense of strength. Everyone, at all ages, needs something to hold on to and to give them support/comfort during the tough moments.

    Tamara Cullere

    Why a Sink Full of Dishes Triggered an Argument With My Husband

    This weekend my husband and I got into a fight. I started it. I made a comment about how I made dinner and cleaned up the kitchen and still had to get the kids to straighten up the living room. He felt like I was saying he does not do anything to help, got defensive and pointed out he is managing the kids’ virtual school during the day and his job (which I know is a lot). The tension and stress between us dragged onto the next day where he made a snarky comment about the sink overflowing and how I was probably going to make him take care of it. Later that afternoon he took care of the sink without saying anything and without me asking, and we both ventured to separate rooms to watch TV and cool off. It probably sounds like a typical dispute between spouses about the division of labor but there was so much more behind it. You see, I had just spent three days on the phone — 16 phone calls to be exact — between my son’s specialty pharmacy and his doctor’s office. Apparently the pre-authorization for my son’s monthly med expired and when I called to refill it no one told me. Trying to get this taken care of meant I spent over four hours on the phone, most of it waiting on hold. I was mentally exhausted from fighting the insurance company and honestly I was feeling a bit guilty that it came to that. After three days of back and forth, a lot of stress, some anger and some tears I was finally able to get my son his med but he got it five days late. I felt like it was my fault he got the med late. I felt like I should have known to be on top of everything and since I wasn’t it was my issue to fix. I felt alone in having to handle the stress of the insurance and the meds. Rationally it wasn’t my fault that there was a delay but I felt like if I had called to refill it sooner, asked more questions or had been on top of things better it would not have happened the way it did and it would not have been such a stressful rushed experience trying to have him not go too long without the med. In short I felt like I dropped the ball … an important ball. Being mad and disappointed in myself and my “failure” led to feeling the weight of being in charge of all the medical stuff for my son. My husband is great and helps out but given our personalities I am better suited to taking the primary role of the medical side of things for my son. Typically I do not drop the ball and am on top of things and I don’t mind this role. While this was a little out of my hands because I was missing key information (mainly the pre-auth expired in six months not a year) I still felt a little defeated and a little like I am not doing a good enough job and I failed my son and my family. It is funny how I can be on top of many things and do many things right, but the setbacks or detours when it comes to my son’s medical stuff make me feel like I failed. Early on in my son’s journey I was criticized by someone and told that my actions/inactions made me a bad mother and I should know better. It isn’t uncommon for people, even loved ones to question and even criticize things medical parents do or don’t do but that honestly stung. At the time I was doing the best I could but people still found fault in my actions. While I have mostly forgiven what was said during a heightened emotional state, the fear of not being enough and not making enough good decisions when it comes to my son’s health increased as a result of those words. Obviously I want what is best for my son and his health and when there is a setback or a mistake then I question if I am capable of taking care of him. It is a big leap to go from having a setback to being a failure as a mom but when you are constantly under stress and constantly holding a lot of balls in air, it doesn’t take much to knock you over mentally. You see fighting with my husband about the dishes and how we divide up household chores (especially during a pandemic when chores have tripled) wasn’t at the root of what I was feeling. What I was feeling was that I let my son down and may have jeopardized his health in the process (which I didn’t). What I was feeling was overwhelmed by the stress of the pandemic, the increase of household chores, and the constant up and down of dealing with my son’s medical issues. What I was looking for was help, support and confirmation that it wasn’t my fault. I needed validation that despite the setback my husband sees that I am doing the best I can. My approach wasn’t right and taking my feelings out on my husband wasn’t the way to ask for support or help but it was the overflow of what I was feeling. Being my husband and knowing what this life we live is like (and having years of therapy under our belt due to this journey), he took my emotional vomit and while he dished out a little bit of his emotions we both rolled with it. During this journey we have learned how to let each other go through what we needed because we realize that this is not an easy road and it is full of emotional potholes.  We both need validation from each other and from others that we are doing the best we can even when things get set back. We acknowledge that the blow up we both occasionally have is usually a result of the constant stress and the constant weight of what we going through and that the root of our emotional response is hidden behind something as meaningless as dishes.

    Tamara Cullere

    Decision-Making During the Pandemic When Your Child Has a Rare Disease

    Everyone struggles at times when it comes to making a decision. You never know for certain if you will be making the right choice or if unforeseen issues will arise with your choice.  Some choices you make will be well thought out, while others will be done in the spur of the moment. For the average person, making the wrong decision might cause some minor problems or setbacks, but it probably won’t mean the death of your child. In my experience, when you have a child with a rare disease, every decision you make has to be well thought out. The pros and cons must be considered first. On good days, decision-making is hard and involves a lot of time and effort. Throw in a global pandemic and that decision-making process has only intensified and become even more overwhelming. Almost all decisions that are made when it comes to my rare disease warrior, his siblings or even my husband and I are filtered through a risk vs. benefit filter to determine if the risk is worth the benefit. Once we determine if the risk is worth it, we then run it by his main doctors to see if they agree with us. Some of the choices we have made to benefit our son and his brothers might not make sense to someone outside our nuclear family, especially during this pandemic. Some of the things we see as risks might not seem like risks to others. I understand that, and I know how hard the ramifications of some of our decisions have been on our sons, our family and others. I know family and friends are missing seeing our kids in person. I know my kids are missing out on things they would love to do. I know some things do not seem fair. I suffer with the weight of that myself, but what I wish everyone understood is that all the decisions are made with our rare disease warrior’s needs and limitations first, then his siblings, then my husband and I. Right or wrong, other people do not come into the equation. Since the global pandemic started, we have been on a strict lockdown.  For months our goal was to eliminate any risk of our rare disease warrior getting sick and dying. Given his underlying conditions, especially the pulmonary ones, death was very likely at the beginning.  No one knew what was and wasn’t going to cause us to get sick. We were vigilant, having things shipped to us, wiping down the mail, not seeing anyone outside the 5 people that lived in our house, tele-visits with doctors, and video chatting with family. It was hard and overwhelming and wreaked havoc on all of our mental health, but it was what we did to stay safe and keep our son alive. As things in the pandemic evolved and knowledge of COVID has become better, we have started looking at how to open our lives a tiny bit for our mental health. This has taken sacrifice on the part of others to help us get help and some relief. A couple of family members quarantined for two weeks to make sure they were not sick before interacting with us and stayed isolated for a period of time so they could be around us. The few people that are able to do this and see us have to live in a bubble and sacrifice seeing anyone else and doing anything else in order to keep us safe. This has helped all of us in terms of mental health and even the logistics of having three small kids, virtual school and therapy, and two adults working from home. It is still scary and we still wonder at times if we are doing the right thing opening up to a “pod.” As much as we want to live in a bubble to stay safe, we have to start looking at how to move forward and that is extremely scary. Moving forward for us is going to mean minimizing risk as opposed to almost eliminating risk. But the question is, how much risk are we willing to take? How much risk will we allow into our son’s fragile life? Will we know we are allowing too much and be able to adjust before it is too late? We don’t want to risk his life, but we also need to look at our family as a whole and our mental health.  How do we make good choices and take reasonable steps forward when fear and eliminating risk have been our direction for the last year? There are no easy answers. We are not alone in trying to navigate these hard times. Every family is feeling the weight of trying to decide what is safe and what is not. This process is just extremely magnified for many of us who have kids with rare diseases. We spend many hours weighing out options and coming up with new options. In some ways, it feels like even if we are responsible and do things in the best way possible and with the approval of our doctors, we are risking our son. The mental stress and anxiety surrounding the decision-making process during these times is beyond overwhelming in and of itself, and then if you throw in other people’s thoughts, feelings, and opinions it gets even worse. The weight of decision-making has always been heavy, but now thanks to a global pandemic, at times, it has been almost too much to bear.

    Tamara Cullere

    We Chose to Embrace Life, But Are Coming to Terms With Death

    I have a confession to make. Yesterday I was driving home and I heard a particular song on the radio that reminded me of my son. My thought while listening was that the song fit his personality and would be a great song to play at a celebration of life for him. This then led me to reminisce about different memories and stories I have of him that truly show his personality. I spent a 30 minute car ride thinking of the details for his celebration of life (because when a child dies you can’t do anything other than celebrate the life they had), while he was home playing with his brothers, as healthy as he possibly could be given his Hurler’s diagnosis and complications. This is not that uncommon for me, once every couple of months or so my thoughts go down this path. Usually I have read about a couple of recent deaths in our MPS community, or my son has gotten some news from a doctor’s appointment that feels like a setback. Regardless of what sparks it, the reality of the situation is my son has a disease that will shorten his life and may possibly take him from me with minimal, if any notice. I know that there is a real possibility that his brothers, his father and I are going to outlive him. At some point we will have to figure out how to be a functioning family with a key person missing. Ask any parent in our community or who has a child with a rare disease that will shorten their life, and they will likely tell you that they have thought about their child’s death and about what life will be like without them (unless they can’t acknowledge that out loud or admit to someone other than themselves that they have had those thoughts). It is one thing to admit to yourself you think about and worry about your child’s inevitable death, it is another to acknowledge it to others. It is a hard balance to make between mentally prepping and preparing for the death of your child — especially when there is no reason to believe it will occur soon – and living a life where you pretend that fact doesn’t exist and even possibly being in denial. If I spend too much time thinking about kids with MPS that are younger than my son that have died or thinking of how a certain upcoming procedure or sedation might take a bad turn and lead to his death, I would have a hard time getting out of bed. I also have two other boys to worry about so I can’t treat my boy as though he is actively dying. But it doesn’t mean that those thoughts don’t creep in and that there are not times where I go down that path in my mind. Not surprisingly it is something that I don’t share often, even with my husband. Talking about the risks of a procedure or setbacks we have faced are hard enough conversations to have with a spouse or family member. Trying to have a rational conversation about the inevitable death of your child is an impossible conversation to have. People mean well but sometimes telling me to “be hopeful, or that science is changing, or he is doing so well, or or even a cure is around the corner,” does not validate my feelings or concerns nor does give me a safe outlet to have these conversations. It might make the person saying it feel better or help them think they are making me more hopeful, but sometimes it just makes me feel more alone with my sadness and fear. I also don’t want to burden others with my thoughts and fears and the reality that death is. When you do try to voice your thoughts to others, people may say “they can’t go there, or they can’t imagine, or you can’t think like that.” But when you are given a diagnosis where the fact is your child will have a decreased life span, no matter how long or short that life is, you are always aware that you child’s life has an end and it will come before you know it or are prepared for it. I am not always sad or thinking of his death, but I am always aware of it. Some days that awareness is faint and in the background of my every day, and other days it is front and present and demanding attention. However acknowledging that there is going to be a time that my family consists of four people in person and one in spirit does help keep me focused on the here and now. It helps me when I am struggling or overwhelmed with life and the chaos that is three young boys, to remember to savor and enjoy the moments. I truly do not know for how long I will be able to watch my three boys run and play and wrestle together. I want to fill his life, his brothers’ lives and mine with as many memories and adventures as I can so we have wonderful thoughts and images to hold on to for the rest of our lives. This also means that we sometimes make decisions about things he can or can’t do based on medical advice, but also based on what will increase his quality of life. Recently we took our sons to the beach to play in the sand and put their feet in the ocean. Seems like a simple family outing but given our rare warrior’s immune suppression, medical advice has been to not allow him to play in the sand or ocean due to possible bacteria and such. That has been the guidance we have followed for the last three and a half years and we have followed it strictly until recently. He wanted to be like his brothers and we wanted him to have that experience, so we decided to let him play and be a kid and then to go home and take a bath and clean him really well. He had a blast and the pictures and memories of him playing on the beach with his brothers are embedded in my brain. Yes there was a risk, but we tried to minimize the risk and still let him have fun. We can honestly say we do not know when we make certain memories if we will have an opportunity to make similar ones again. Quality of life is especially important when you don’t know how long your child will be able to do these things and enjoy them. I want to make sure I give my child as normal and yet as full of a life as I can, whether that life lasts five years, 10 years or hopefully even 30 years. I never expected to be a mother who would have to live every day like my child was dying but in fact, he is … and I do.

    Tamara Cullere

    On Wondering If I'm a Good Mother to All of My Boys

    What does it mean to be a good mother? For some people it may mean being able to have quality time with each of your children and building those individual relationships. For some people it may mean that all of the child’s needs are met. For others it may mean protecting them from some of the harsh realities of life. For others it may mean making sure they know they are safe and loved. And for a group of moms of children with a disability, it may mean making sure everything is done in your power to figure out, address and help your child cope with their unique needs and health issues. What happens when you have a rare disease warrior and siblings without those medical challenges? Finding the balance between being a good mother for my rare disease warrior and my other two boys can be very difficult and overwhelming. When my son is sick or has to be admitted into the hospital most of my focus is on him and his needs. I may have to pick up at a moment’s notice to drive to the doctor’s office or be admitted. When this happens any plans I have with my other boys have to be postponed. They may have to go stay unexpectedly at a grandparent’s house. My focus is on the immediate crisis or issues surrounding my rare disease warrior, so my other boys have to take more of a back seat. Given his physical limitations and his medical needs he needs the most help and support to navigate his world. Despite being the oldest he is probably the most dependent of my children. I encourage and expect a certain degree of independence from my younger kids, but not my oldest given his needs. With all this attention on him and all this help directed to him it does not always seem fair to my other boys to expect them to do something a certain way, but not to hold their older brother to those same standards. I am being a good and devoted mother to my one son and his unique needs, but what about my other two? My middle son struggles the most with the emotional journey that having a brother with a medical issue entails. Some days he is struggling to understand and control his emotions. He needs more of my energy and focus to help validate what he is feeling and help him implement strategies to cope with his big emotions. When I am focused on helping him, I may not be doing what my other two boys want in the time that they want it. He wants and needs one on one attention and support because he sees what is expected of him and not his brother. He doesn’t understand and will sometimes complain of phantom pains just to try to get the focus and attention that he sees his brother get. Does giving his brother the attention he needs mean that I am not being a good mother to him? If I take him on special trips or do special activities with him does that mean I am not being good or fair to the other boys? My youngest son is my easiest in some ways but he is also the baby of the family. He grew up in the middle of a worldwide pandemic so what he knows is the five people he lives with. As a result, if he interacts with new people or even family we haven’t seen because of the pandemic he is very shy. It is in those moments that he needs my comfort and my support the most. When I am comforting him or trying to get him to engage in something new I may not be addressing my other kids the way they want me to. He is also my most independent and most willing to follow directions. Since my other boys require so much of my energy am I giving him enough of it? Do I let him do more things on his own simply because I am too burnt out from the other boys’ needs? Am I giving the others what they need but not giving him enough of my attention in the process? I don’t mean to sound like I ignore two children while I help and support one child, but when one child needs help a majority of the focus may go to them. Like in all families the needs and supports ebb and flow within a day, an hour or even a minute some days. There are times I feel like helping and supporting one child through what they are going through makes me a good mother for that specific child, but not necessarily for my other boys in that moment. I want to be a good mother for all of my children all the time but it is so hard to balance that. The medical needs of one always seems to supersede the needs of everyone else in the family. I know that dealing with those needs is important and takes priority, but I do feel bad and guilty that it affects my other boys the way it does. Part of being a mother of any child is worrying about if you are doing a good enough job and if you are meeting their needs. With a rare disease child or any child with a disability, their needs can easily overtake a family and you become more aware of what you are and aren’t doing for each of your children. Some days I feel defeated, like I only was really there for one of my children … that I failed the other boys. Some days or hours I might feel like I have it under control. Other days when we play outside together or bake cookies together I know that I am doing what each of my kids need and that I am being a good mother. I want to be a good mother and most of the time I think I am doing a decent job but some days, I really wonder if I can handle being good enough for all of my boys at the same time or if I am only capable of being good enough for them one at a time.

    Tamara Cullere

    When People Ask How My Son With Hurler Syndrome Is Doing

    “How is he doing?” “He is better now, right?” “Is he no longer is sick anymore?” “All good with him?” “He seems to be doing so well!” These are much more loaded questions/comments than they would probably be for a typical child. There are many different ways I have been asked how my son is doing at different points on our journey. In some ways, it is a funny question, because it is not like he has an illness from which he will recover. There is no cure for his genetic disorder. There is no straight, short or easy answer to give. That answer can also change on a daily or even hourly basis. Most of the time I know that when it is asked, the person is generally wondering how he is doing in the broad sense of the term, but I don’t think they want to know all the nitty-gritty details. The detailed answer takes more time and explanation than many people want to sit through but that more thorough answer gives a better picture of how he is doing. The easy and short answers are, “he is doing well” or “he is having a rough time,” and there is a degree of truth to those answers.  Those answers are easy to give, acceptable answers, but they do not always give the reality of how he is doing or how our family is doing. The long answer may be that he is still highly medicated and those medications are wreaking havoc on his body. We find a solution to one problem, but that solution causes other issues we then have to treat. We constantly feel like we are in a cycle of solving problems just to cause new ones to solve. The long answer may actually be that his gut is acting up thanks to his meds and his inconsistent eating habits. The long answer may be that we have a bunch of procedures/surgeries coming up and we are stressed out and scared about the sedatives and what they will do to his body. The long answer may be that he is stable but his brothers are reacting to everything that is going on in their lives. There is no easy way to put how he is into one brief sentence without leaving out a whole lot of important and usually overwhelming details. I want to focus on things that are getting better and ways he is improving, but I feel like focusing only on the good negates the struggles he is still facing.  Focusing only on the struggles negates the improvements he is making. It is a hard balance to share both the good and bad, to be optimistic and realistic at the same time. With Hurler syndrome, we have many things that we may not be addressing at the moment and just waiting to address. Some of that is due to not wanting him sedated more than once or twice a year. Some of it is due to knowing what needs to get done and wanting to wait as long as possible to address it. Either way, just because we are not in a medical crisis at the moment does not mean one is not on the way. It is hard to explain that reality to people without sounding pessimistic.  It is hard to say that right now, we are only mildly concerned about something like his joint issues and orthopedic issues, but we know within the next few years he will need surgery on them. One of the hard things about having a child with a rare disease is that at any given moment, things can change. One doctor’s appointment can result in a new med or surgery. In some ways, we constantly live our lives on eggshells — making plans for the future but preparing alternative plans in case we have to adjust due to some curveball the disease throws at us. Being part of the MPS community we can see the surgeries other kids have and that we know we will most likely have to face. It is not a matter of being negative or pessimistic but more being realistic. There is a part of us that has to constantly plan for and prepare for the speed bumps that will be coming up. How is our son doing? He is living and he is progressing and growing. Some things are improving. Some things are the same and some things… we have to work on.