The following blog is from Siblings with a Mission, an international organization established to serve and support siblings of individuals with special needs. The website is a great resource and they have several blogs like this one, that give advice for different scenarios which siblings often face.
As an MPS sibling there is one thing that we all experience: hospitals. During my brother’s twenty years of life, he spent a lot of time in and out of hospitals but there is one time in particular that always comes to mind. I’m pretty sure I was about 11 years old, making my brother 16. He had gotten incredibly sick with pneumonia and was taken to the hospital. In fact, it had gotten so bad that the hospital had to airlift him to UNC Chapel Hill (about a four-hour drive from where we were living). As a younger sibling, I just remember feeling so scared and lost. I was so scared that he wasn’t going to be okay. I remember my mom calling my dad who lived a little over an hour away from us and she explained to me that I was going to stay with him for a little while so that she could go and be with my brother. This was hard for me. My brother and I never spent time apart. Once my mom and brother got settled in at the hospital at UNC, my dad and I got a hotel room for a week and went to visit. I just remember going into that hospital room and seeing my brother laying in the bed almost with no emotion at all. Looking back, I think he must have been on a lot of pain medication but I’m not sure.
My brother had to go into surgery to put tubes in his lungs to drain the fluid. I remember my mom, dad and momma Jewelle (our grandmother) talking with the surgeon and asking many questions about anesthesia and other things I didn’t really understand at the time. But the one thing that I did understand was that for MPS patients, anesthesia can be very dangerous. This made me even more frightened for him. I remember waiting in that room for what seemed like forever. My mom didn’t want me waiting there. She tried everything to get me to go do “kid stuff” with my dad. I finally agreed as long as we weren’t gone long. We went to one store and it was to get him a bear and some of his other favorite things. By the time we got back, he was still in surgery. I think he was in there for over eight hours – or at least it felt like it to an 11-year-old. When he came out of surgery and back to the room, all I wanted to do was crawl into the bed and snuggle with him, but I couldn’t. There were tubes coming out of his side and I was so terrified that if I got up there I was going to hurt him. After my brother had healed a while, I was able to do it though. I just remember spending the entire summer in and out of the hospital visiting and staying with him (after I had finally convinced my parents that was where I needed to be).
All four of us spent a lot of time in the hospital with my brother. We could not have imagined being anywhere else other than by his side. We were so blessed to have had such great doctors and nurses at this hospital – without them my brother would never have made it out as well as he did. His lungs even inflated back in half the time they were supposed to. No one could believe it – my brother was truly a strolling miracle.
As MPS siblings, we see our brothers or sisters spend a lot of time in and out of various doctor’s offices and hospitals. All this time away from home affects the entire family. Whether you are a younger or older sibling, it is important to remember to stay strong and be there for them as much as possible. Siblings have a strong bond and MPS siblings seem to have an even stronger one. Your siblings may or may not be able to talk back to you, but they do understand how you are feeling. It is important to be strong for them no matter the situation.
When my brother was in the hospital, I spent a lot of time with him watching movies and doing things to keep him comfortable. I tried doing anything that I knew would normally make him happy! Play games, create something, or engage in a project together if your sibling is able to do so. You could also bring their favorite food to the hospital since, let’s face it, most hospital food is inedible! Be sure to check with either the nutritionist or their doctor first about any food or allergy restrictions related to the medicines they may be taking.
Anything that will allow your sibling to feel more comfortable will also help them feel better. And their happiness will make you feel better too. Happiness cannot cure MPS, nor does it make EVERYthing better, but it can make dealing with everything a little bit easier. Also during this time, please don’t forget your parents! They are stressing about your sibling, actually about you too, and they will definitely need help. Packing a bag for you and your sibling, if possible, is just one way that you can help your parents. You never know how long your hospital stay will be. Best of luck and remember: stay strong!