I always wonder about what Matthew and Hannah's thoughts are about growing up with Mallory.
Lately, I've really taken notice to how they delight in Mallory's triumphs. They join in with the praise and get just as excited as we do.
I know that growing up in our house is different than other houses. I know that growing up with a sister with Smith-Magenis Syndrome is not easy.
I know that there will be difficult times. Times that are hard for me to explain to Matthew or Hannah. My hope is that we can reflect on the positive and that their experiences growing up will help them grow into compassionate, understanding, genuine adults.
I found the following article in the PRISMS newsletter very helpful on how Smith Magenis effects siblings.
The following article is from the Spring 2010 Newsletter from PRISMS.
On Being “The Normal One”
My name is Jenny Beall. I am the daughter of Mary and Randy Beall, but most of all I am the sister of Laura, who has SMS. My whole life I’ve been labeled as Jenny,Laura’s sister, as if the two words are
eternally attached. My experience as a sibling is unique to most people, but to our SMS family it is all too familiar. My hope is that each of you can empathize, gain insight, hope and most of all laugh at my experiences with SMS. For those of you who don’t know, I spoke at the 2009 PRISMS conference during the Sibling Workshop with Dr. Wanda VanSyke. During our session, we covered many of the emotions that siblings feel, both positive and negative. I understand that a dilemma faced by parents of both an SMS child and a ‘normal’ child is that the ‘normal’ child does not express his or her emotions quite as boldly as the SMS child, making it hard to understand what he or she is feeling. In my 22 years as a sibling, I think I’ve experienced every possible emotion, from anger and grief to times of laughter and happiness. From as early as I can remember, Laura has made herself the center of attention. It does not matter if we are at home, at church, at the grocery store, or even at the PRISMS conference, Laura finds a way to make herself noticed. Growing up, I began to resent my sister for always drawing attention to our family. Not because I personally wanted the attention, I was never the attentionseeking type, but because sometimes I simply wanted to blend in. I remember one time specifically - I was in 4th grade and my elementary school was having a Halloween carnival. I had been looking forward to the Halloween carnival all year and could not wait until I got to go. My family was invited too, which meant (unfortunately for me) Laura was coming. Before we left my mom gave Laura this whole talk about how this was my event and how she was not going to make a scene (but if you ask me, I think that just spurs her on). Things were going somewhat ok; I mean, she was still loud and cutting everyone in line but no big fits or anything, until I heard her unmistakable screaming from across the way. Turns out, somewhere in the midst of the carnival Laura had lost her hearing aid. To make a long story short, the entire school spent the rest of the carnival searching everywhere for my sister’s hearing aid. Talk about not blending in. Then there was the time when I was in 7th grade and Laura and I were at the same junior high. She had this horrible teacher and one time when she’d run out of options for how to control Laura, her teacher came to get me out of my 7th grade Biology class. To make matters worse, when she came to get me she announced to my entire class that my sister was out of control and that she needed my help to contain her. Ouch. Finally, there was the time when I was a freshman in college moving into the dorms. My family was there to help me move in, as were the other 600 girls’parents. There were people everywhere moving in boxes, carpets, dressers, etc., which is always the type of scenario where I’d like to be embarrassed the least, and Laura tends to embarrass me the most. My Dad and I were sitting in my room with my roommate and her family, whom we have just met, and as if on cue, we hear screaming and stomping from down the hall. I dragged myself to the door to see what was going on and sure enough my sister was mad about not getting her soda, or whatever it is she gets mad about, and throwing everything that she could find down the hall at my mom. I cannot even begin to describe the looks people gave us, or the countless explanations I had to make throughout the following year. Although I never wanted the kind of attention that she got, I couldn’t help but feel like everything was all about her. Even now, when I come home from school for breaks, I can hardly have a conversation with my parents without Laura feeling so attention deprived that she throws a fit. Through the years, I often felt a deep loneliness because I didn’t think anyone would ever understand. Many of my friends have experienced traumatic events in their lives and I am lucky to have people in my life who try to be empathetic, but it is an entirely different experience to grieve over something that you’re born into. Don’t get me wrong, I love my sister, but I’ve gone through many periods in my life where I have needed to grieve over not having what I considered a “normal” home life. Whether it was not having siblings that I could play with, or my parents not being able to attend certain events with me, or one of the aforementioned episodes, I had to come to terms with the fact that my life is not like everyone else’s, as I think we all have. Yet, despite all of the hard times, I know without a doubt that I would not be the person that I am today if I did not have Laura for a sister. My mom always tells me that all of these hard things are “developing my character,” until one day I told her, “Enough already! I don’t want any more character!” But seriously, having someone with SMS in our families gives us resilience unlike any other. I learned at a very early age what really matters in life, and how to not let a little bit of wind blow me over. But what I think I’ve learned the most, is how to laugh. My family can testify that more than anything else, even at inopportune times, Laura makes me laugh. Just last night my family attended the wedding of an old friend of mine and as we walked into the reception, with Laura just a couple of steps in front of us, she lifted up her dress that my mom had carefully picked out, stuck her hand down the back of her hose, and started scratching an itch that apparently could not wait until she got into the restroom. Instead of being embarrassed, all I could do was laugh out loud. Laura is so famous for her embarrassing yet funny moments that my friends have coined them “Laura stories,” and I am encouraged to tell them at any occasion where people need a good laugh. Whether it’s Laura being scantily dressed in front of my boyfriend, stealing food from Kroger because she thought it was free, flopping through a fancy restaurant
in scuba gear, learning foul language, or any of the other ridiculous, impulsive things that she does, it never fails to give me and those around me a good laugh, as well as remind me of why I love my sister.
I know that being a parent to any child isn’t easy, but parenting a child with SMS is 10 times harder (or maybe I should say 100!). Then, when you have a ‘normal’ child on top of that, I’m sure it sometimes
seems impossible to balance. My parents worked so hard at being good parents to both Laura and myself. I always struggled between being frustrated at the things they weren’t able to do for me, and
empathizing with them because I knew parenting Laura was so hard and that they were doing the best they could. There were many things that my parents did right when it came to parenting both my sister and me. First of all, I was always thankful that they were so open. They never tried to pretend like they had it all together, or that I shouldn’t feel anything that I was feeling. I remember specific times when Laura was being really difficult and my Mom would turn to me and say, “This is hard, isn’t it?” Knowing that a) my parents thought this was hard too and b) I was allowed to feel however I wanted to feel, made the situation so much better because I didn’t feel guilty about my feelings. Furthermore, by my
parents labeling my emotions it helped me to understand how I was feeling and it let me know they wanted me to communicate with them. They also never made me be Laura’s third parent. Yes, there were times when I was sent to retrieve her, such as at church and school, and yes, sometimes I took it upon myself to try and make her behave, but my parents never put me in that role. They never required me to physically take care of her and they never expected me to try to control her, which freed me up to just be her sister. There were many times where Laura and I were able to play together like any sisters would, and there were times where we fought just like sisters would. I remember one time specifically that actually happened just last year. We were having Christmas at my cousin’s house in Austin and it was time for my family to leave. We were packing up the car and Laura, trying to be helpful, gathered all of my things in her hands, but of course tried to gather too much at once. On the way out the door,
my purse opened and my new Blackberry fell out onto the cement. I immediately screamed and ran to my phone but it wouldn’t turn on and I knew that it was broken. We got in the car and started heading home, but I was so angry that an hour later I still wouldn’t speak to her. When we stopped to eat dinner my mom leaned over to me and said, “You know she can’t help it,” and I said, “ I know. But she’s also my sister and right now I just want to be mad at my sister.” And my mom said, “Of course, and that’s ok.”
This is a perfect example of how my parents never expected me to be anything other than Laura’s sister.
Another thing I appreciated about them was how they allowed me to be independent. They always did the best they could to let me have a life outside of being Laura’s sister. Growing up I was a gymnast, played sports, danced, was in the choir - all things that gave me an identity of my own. My parents weren’t always able to attend my performances, or sometimes Laura came and was very loud, but my parents never made me feel guilty for being able to do things that Laura couldn’t. This was important because it gave me areas of my life where I could simply be ‘normal’ and blend in, and it also gave me confidence in myself and my abilities. Finally, my parents tried hard to spend separate time with me when they could. Usually it was only one of them at a time, but a special dinner with Dad or a shopping trip with Mom made all the difference in the world because it reminded me that they did see and care
about my individual needs. As wonderful as my parents are, there are some things I wish had been different that can hopefully help all of you be better parents to your children. At the PRISMS conference, I received a lot of questions about how I felt about having two sets of rules. I’m not going to lie, sometimes it was really frustrating. Especially when I was younger, I hated how I could get in trouble for something but if Laura did it she would just get a warning, or they wouldn’t even notice, because there were such bigger issues with her. The best advice I can give is to have as many rules
as possible apply to all children, and for the few that don’t, communicate with your children and explain why. I always felt better when at least my parents acknowledged the double standard. However, as great as communication is, parents also need to be aware that children don’t always want to communicate. When I was a teenager, my parents constantly wanted me to talk about how I was feeling but they couldn’t seem to get me to open up. I know that it worried them, as I’m sure it worries many
of you with teenagers, but sometimes I just wanted to blend. I realized that my experience was different than most of my friends, but I just didn’t want to talk about how I was different all the time because to me, that just made it worse. Sometimes I just wanted to be a normal teenager, even when things were hard. My life has been one big rollercoaster, but I wouldn’t trade it for anything. Yes, there have been hard times, and yes, I sometimes still struggle with having a family that is different, but overall I am a
happy, well-adjusted 22-year-old with a sister I adore more than anything. I will graduate from Baylor University this coming May and I plan on attending graduate school for Professional Counseling in the fall so that I can help people just like you and me. So in conclusion, in the words of Laura when shequotes her favorite cartoon, “That’s All Folks!”❉
So, yes, there will be difficult days. Days that are hard.
There will still be days when i wonder if we have done right.
But in the end, I have three beautiful children whom love each other despite the differences.
If you talked to most siblings they would probably tell you the same thing, Smith Magenis or not.
