I posted this today on Thankful4Tanner.blogspot.com
Friday, April 30, 2010
I know I shouldn’t care what other people think. It’s actually something I’ve always struggled with. I’ve always been worried about other’s opinions rather than mine. I remember in middle school having a year that I just wore the most ridiculous get ups to try to make people think that I didn’t care what they thought. That just ended up being stupid. I walked around in fluorescent orange tights and purple shoes feeling totally self conscious. Haha….that just makes me laugh now. What doesn’t make me laugh is that still care what people think. Maybe not about my clothing, shoes, house, or what kind of car I drive…….but what they think of my baby.
When I look at Tanner I see huge, beautiful, blue eyes, a gorgeous smile with dimples to match, and an engaging blossoming personality. Lately, I’ve been disappointing myself time and time again when I’m out with Tanner…..and sometimes even when I’m alone. Somehow, I always work Wolf-Hirschhorn syndrome into ANY conversation that I’m having. If somebody asks how old he is, I feel like I have to explain why he’s small. If I’m alone and shopping for shoes for Tanner….I feel like I have to explain why I’m in search of such tiny shoes for a 1 year old. If Tanner’s with me and a stranger is doting over him….I tell them he has WHS, just in case they may think he looks different. I don’t think Tanner looks different. Is that because I have a fierce, unconditional love for him? On two occasions we have disturbingly overheard “that baby looks like an alien”. That was a terrible feeling. Could this have something to do with my overflow of information to strangers? I remember saying more than once that I would not let Tanner’s diagnosis define who he is. I surely do not put any limitations on what he may or may not do because of his diagnosis. But when I’m spilling my guts to the average stranger it does seem like I’m letting WHS define him and it’s really bothering me. Is this some sort of coping mechanism I’ve developed to comfort myself…..am I subconsciously searching for his acceptance into society…..do I just need to talk about it…..or could I possibly be letting WHS define who I am????? Have I forgotten who I am? Sure there’s a lot more to me than being the mother of a special needs baby. I’m Jess ….Carter’s mommy….Tyler’s step mommy….every one’s favorite bartender……an energetic, passionate dancer……the master of the pogo stick…..or the Garth Algore impersonator.. I could go on and on about the different things my family and friends may think of when my name comes up. But, I don’t know why I’m only sticking with the mother of a child with Wolf-Hirschhorn Syndrome. I’ve come to terms with Tanner’s diagnosis. I don’t feel depressed or sad about it. I’m just annoyed with this and I want to stop. I’m proud of Tanner and want to show him to the world, let him be him, and without any kind of explanation
When I look at Tanner I see huge, beautiful, blue eyes, a gorgeous smile with dimples to match, and an engaging blossoming personality. Lately, I’ve been disappointing myself time and time again when I’m out with Tanner…..and sometimes even when I’m alone. Somehow, I always work Wolf-Hirschhorn syndrome into ANY conversation that I’m having. If somebody asks how old he is, I feel like I have to explain why he’s small. If I’m alone and shopping for shoes for Tanner….I feel like I have to explain why I’m in search of such tiny shoes for a 1 year old. If Tanner’s with me and a stranger is doting over him….I tell them he has WHS, just in case they may think he looks different. I don’t think Tanner looks different. Is that because I have a fierce, unconditional love for him? On two occasions we have disturbingly overheard “that baby looks like an alien”. That was a terrible feeling. Could this have something to do with my overflow of information to strangers? I remember saying more than once that I would not let Tanner’s diagnosis define who he is. I surely do not put any limitations on what he may or may not do because of his diagnosis. But when I’m spilling my guts to the average stranger it does seem like I’m letting WHS define him and it’s really bothering me. Is this some sort of coping mechanism I’ve developed to comfort myself…..am I subconsciously searching for his acceptance into society…..do I just need to talk about it…..or could I possibly be letting WHS define who I am????? Have I forgotten who I am? Sure there’s a lot more to me than being the mother of a special needs baby. I’m Jess ….Carter’s mommy….Tyler’s step mommy….every one’s favorite bartender……an energetic, passionate dancer……the master of the pogo stick…..or the Garth Algore impersonator.. I could go on and on about the different things my family and friends may think of when my name comes up. But, I don’t know why I’m only sticking with the mother of a child with Wolf-Hirschhorn Syndrome. I’ve come to terms with Tanner’s diagnosis. I don’t feel depressed or sad about it. I’m just annoyed with this and I want to stop. I’m proud of Tanner and want to show him to the world, let him be him, and without any kind of explanation
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Oh how a post can take you back in time! I remember feeling the same way & being very verbal about Juliana’s condition with people in public places when she was small. Sometimes it was due to worrying what others might be thinking. It was especially hard becasue Juliana had a big hemangioma on her nose. That was all that some people saw when they looked at her. That is all that they thought was “wrong” with her when she was a baby. I found myself always explaining her condition feeling like I was educating people about a syndrome. The truth is I talked to people for lots of reasons… Because (unfortunately) I am a person who is sensitive about what other people think, but also I am a very outgoing person. I talk a lot anyways! I love my baby girl & I wanted to talk about her! It did frustrate me that I always brought up her syndrome (I still do) when I spoke about her. But, truly the syndrome is a huge part of our lives too weather we like it or not. I know there is so much more to me than my kids…but I talk about them a lot! I also know there is a ton more about Juliana than just the syndrome but it is still a big part of her life.
Just to give you a little piece of mind…it does get better as they get older. At least for me the syndrome has taken a back seat to SO MANY THINGS in life. Other kids, personal health issues, personal & family achievements etc… Her health has become a lot more stable as she has grown older too. The future is more certain & I do not wish for the “crystal ball” everyday any longer. I live in the present a lot more now, & I don’t wonder what she is going to do in the future. I just watch her live it everyday.
I just wanted to share that I think you have no reason to feel bad about what ever you do. If you are a private person & do not feel the urge to tell anyone your business, then good for you. But, if you are a open more outgoing person, don’t knock yourself for however you chose to process Tanner’s condition! Yes, you are both so much more than a 4p- kid & Mom! But, maybe right now you just need to talk about it. If so… who cares?
Be extra kind to yourself! 😉
Gina
Juliana’s Mom for 7 years!
Jess,
Your writing is beautiful in this post because who you are really shines! I worry about these same things all the time. But I do feel it is getting better as Mia gets older. I used to hate when people would ask her age. I had so many issues with her size. But recently when I was out with Joey and someone asked how old she was, Joey asked the woman how old she was? The woman looked horrified and I just laughed and since then it stopped bothering me. I don’t know why but it just didn’t matter to me anymore. By the way, I love the picture of Tanner when he is looking up at the camera! It melts my heart every time I see it! See you soon!
Jessica,
You write about things that we have thought of, but haven’t talked to others about. Kendall too is small for her age, and it is not uncommon for people to ask if she and our 1 year old are twins. We haven’t heard remarks about her, but I do see people look at her funny at times. It’s like they do a double-take because something looks different. I used to worry about it before, but now I just ignore people and shut out the things outside of what’s happening in our immediate circle. In fact, I avoid eye contact with the general public. It’s mostly because I really don’t care what others think and I don’t feel like I owe anyone any explanations. If someone has the guts to ask, I will talk to them about Kendall as if she is just another child that is no different than any other child. Before, I used to say that she has a rare syndrome in any conversation that came up about her. However, I stopped doing that as I felt that I was making an excuse for her; like she was lacking and I had to include WHS in the discussion to make up for her deficiency. There is no reason to make excuses.
Only we know what our children mean to us. We don’t need to justify who they are.
I really want to comment but I am not even sure what to say… other than I can understand! Sometimes I explain that my beautiful little girl has WHS and other times I don’t. People ask her age, then they ask if she was a premie. She was so I just say yes and move on. Other times I seem to feel compelled to explain more… Sometimes because they seem to ask more questions and other times I guess I just need to talk. Either way when I explain I feel that I am explaining that she is so much more than her diagnosis… like “yes she has WHS but she is already so much more, she brings joy to everyone that meets her!” I think I find myself explaining beacuse so many people (adults & kids) seem drawn to her… they seem compelled to come over to me and start the conversation so then I end up telling them about WHS and how what you are told at then time of diagnosis is so awful but our kids are so much more…. SO, I guess to sum up… just because you explain doesn’t mean you are defining yourselves with WHS, sometimes you are just educating, sometimes you are even boasting about your precious little miracle, sometimes you just may need to talk to someone who doesn’t already know your story, & yes sometimes you may even feel you need to explain for insecurity reasons… most people with “normal” kids end up explaining some sort of behavior for them now & again…. So there is nothing wrong with you and you should be a little easier on yourself…. I think we have all done it one time or another if we are still not doing it. (guess I figured out what to say 😉 )
Well again, my 2nd story to read on Tanner. I know this was posted a while back but I still look back at my previous posts because all of the responses help…..so anyway, I still from time-to-time find myself explaining WHS when asked about Nathaniel. People ask how old he is and if he was a preemie. Sometimes they ask for more info., and those are the people that I find myself explaining WHS. I’m so proud of my baby. He’s meeting milestones, but at his pace 🙂 I love him. I don’t know what I would do without him.