Each of us are committed to making a difference and leaving the world a better place when it is our time to exit.
Each of us is unique; we think differently, have different strengths and different passions. What a good thing because the world would be truly boring if we all saw life the same way.
Today’s article picks up on this uniqueness we each have, and I hope it gets each of you to go inside and think, think hard.
Please let me introduce Mary the author who writes the blog Living with Food Allergies and Celiac Disease. Through her blog she shows how having a positive and enthusiastic attitude can make all the difference when living with food allergies and/or Celiac Disease.
I am 14 yrs old, just like you.
I love to go shopping, just like you.
I love to play games on Xbox, Play Station, and Wii, just like you.
I love to go out to the movies, just like you.
I love to go out to eat with my friends, just like you.
I love to hang out, just like you.
I love to talk and text on the phone, just like you.
I love to go to parties and stay up all night long, just like you.
I don’t like to be alone, just like you.
I want to have a boyfriend, just like you.
I want to go to school, just like you.
I want to be accepted, just like you.
I want to belong, just like you.
I want to be loved, just like you.
So if I am just like you, why do you treat me differently?
Why do you not answer my phone calls?
Why do you not return my texts?
Why do you not reply to my facebook comments?
Why do you not ever want to hang out anymore?
Why do you never invite me to your parties?
Why does it seem like you have just forgotten me?
Is it because I have food allergies and Celiac? Are you afraid of me? Are you afraid of my special diet? Do you feel like I have some incurable, contagious disease?
This is how I feel.
It hurts.
I feel abandoned by my friends.
I do not ever hear from anyone anymore.
I feel lonely.
Christmas break has come and gone. Several of you got together during your break from school and went to the mall and then to a movie, and later on to your parties. Did I ever cross your mind? Did you ever think that I would love to join you? Or have I just vanished from this earth, only to stay at home alone. Don’t you know how I was crying inside when I heard you talking about all of the fun you have had together doing this or that? Have you forgotten how we used to laugh together for hours on end? What do you find so wrong with me now? We all went to school together for six years. Sometimes, I hate that I have been diagnosed as I have, but I cannot change my life. I am who I am. I just want you to accept me for ‘me’.
My name is Mary and I am Michaela’s mother. Michaela was diagnosed with Celiac and food allergies in 2009. Since then, more allergies have popped up along with other health issues. The psychological ramifications are tremendous for anyone, let alone a young girl at this age. I, myself, have questions very similar to my daughters.
Celiac and food allergies are becoming more prominent every day, and so many people are afflicted and never even know because they go undiagnosed for a variety of reasons. But, being afflicted with either one or the other doesn’t make you different. We all want pretty much the same basics in life.
I have watched my daughter go through such deep depression when she was diagnosed and her social world collapsed. It broke my heart as I would listen to her cry herself to sleep each night as she watched her friends on facebook interact, ignoring her. I have dried her tears when other girls found every excuse for why she ‘couldn’t join them’ in an activity. I have scrambled to find something for her and I to do that will be of interest when she knows there is a party going on that no one has invited her to. I have rocked her in my arms when she has just told me that she is ugly and no boys will ever like her. My soul silently cries each day with prayers that the fears and ignorance will someday go away, so that other mothers and daughters don’t have to experience this nightmare. I feel helpless and inadequate as a mother most times. Aren’t we, as mothers, supposed to protect and shield our children from pain and suffering for as long as possible?
Michaela was diagnosed at a very young age with ADHD, Stress/Anxiety Disorder, Borderline Autism, Developmental Delays, and Sensory/Perception Disorder. She has always been bright and intelligent, but with her diagnoses, people just looked past her strengths and focused on her weaknesses. Even at such a young age, parents didn’t invite Michaela to events because they were afraid she would ‘tear up their homes’. Don’t you know that any child that has ADHD is spastic and uncontrollable? At least, that is what the other mothers thought. How uneducated.
About two years after she started school, she began having abdominal pains, sometimes so bad she would thrash around on the bed screaming in pain. I can’t tell you how many doctors I took her to that repeatedly told us there was nothing wrong and that it was all in her head. Others told us she just didn’t want to go to school. Three years passed before we found a specialist that tested her for allergies and Celiac. (She was also diagnosed with IBS, Acid-Reflux Disease, Poly Cystic Ovary Disease, Fundamental Abdominal Pain Syndrome, and Depression)
Michaela wants to be like all the rest of the kids her age.
I watch as people stop and stare at her when we go into a restaurant and I have to take her condiments and/or food just so that she can eat out.
I hurt when I take her to the movies and everyone is eating popcorn and drinking soda and she says “mommy, I sure wish I could have some popcorn”.
I scream, and then hate myself for it when I catch her sneaking a glass of ‘real’ milk, or stealing a ‘Dorito’, knowing all along that I would probably do the same.
Michaela is no different than any other girl, so why do others treat her that way? The only thing that is significantly different is her DIET! That’s it! And food can always be worked around, believe me, I will always find a way.
I have always been told that life is not fair, and that we make our life what it is. I believe that to a point. Michaela never asked for her health issues. It seems as though she has always been sick and it is not something that I, as a mother, can fix. I can be there to make sure her meals are prepared properly, to support her in her school work and sports, and to lend an ear to listen to her happy times and heartbreaks. But what I really want is for people to be educated so that kids with allergies and Celiac are treated the same as every other child their age. And, in order for that to happen, it has to start with the parents. Parents have to make the first move by doing a little research and reading. Once they understand that the only significant difference is diet and that cross-contamination can be contained, the fear will be gone. Once this occurs, they will be more supportive and therefore their children will follow suite. Soon, others will be able to look past the diet and see my daughter for who she truly is…a bright, beautiful, young girl…Michaela.
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Absolutely heart-wrenching, Mary… Children and young people can be very kind and generous, but also extremely mean and selfish…I guess it’s all up to how ‘educated’ they are…..It’s tough being a teenager as it is and for Michaela to have to go through all of this for no good reason…….!!!
I wish, Corinne, that I could take away her pain and loneliness. It is so hard to watch her sometimes, and know there is absolutely nothing that I can say or do that will change how she feels inside. I can keep her occupied, but I hear the tears falling at the end of the day when she is in her bed, trying to fall asleep.
Because of ignorance people can be so cruel. I am a mother and I can very well understand what you go through when your daughter is hurt and heartbroken.and what she has to go through. But I have always admired your strength and positive attitude towards life and that is what Michaela needs from her mother and you are doing a great job Mary.
Thank you Rimly. Others look at me and see strength. I look at me and see tons of weaknesses and powerlessness. I get so motivated from comments that I tend to re-read them for encouragement a lot of times. You have written great words of encouragement Rimly and they will stay close to my heart <3
Mary this is a heartbreaking post, and sadly so necessary. When we or my daughter take Henry anywhere the avoidance is huge, you can feel it. He is not contagious, has a beautiful smile and won’t bite either.It has a horrible effect on the other children’s lives. The cruelty of the uniformed is devastating. You are a wonderful warm and loving mother, you have helped provide your daughter with a wonderfully positive outlook. Teen years can be terrifying to begin with I am glad that she has you….
Jan, I can only imagine what you and your daughter go through. Your daughter has been super supportive of Michaela, she will never know how much that has been appreciated by me, and my daughter.
I hate that for Henry. Sometimes, if people would just stop and take the time to think what they would do if they were wearing your shoes, I think their reaction would be so much different. I know when Michaela and I are out in public, if she sees something different she tends to stare. Not for a bad reason, but because she wants to meet them and talk to them. Yesterday, at the doctor’s office, there was an autistic child there that didn’t speak. The girl was about a year younger than Michaela. First, Michaela struck up a conversation with the parents of the child, asking them all kinds of questions. {Michaela has never been told she is borderline autistic} The parents were extremely patient with her questions and answered as simple as possible. It struck me right away that they had no problem understanding Michaela’s speech.
Then, Michaela tried to talk with the girl. Of course, the girl didn’t answer her, but she did recognize that Michaela was talking to her and paid attention to what she was saying. That was interesting that they could communicate.
On our way home, Michaela asked one question after another. What a learning experience for both me and my daughter 🙂
Oh, Mary! How this pierces my heart! Your precious Michaela deserves so much better and you are doing everything as a mom to be there for her in every imaginable way. Children and, unfortunately, some parents can be so heartless and content in their ignorance. I hope this guest post of yours through Larry will reach out to those who don’t understand and shed some light on the reality of what it means to have food allergies.
Love, prayers, and blessings to you and Michaela!
Martha, I wish that parents would gain knowledge instead of turning their head. If they only realized that if they took that as an opportunity to teach their children about what is actually going on, then this horrible cycle of ‘looks’ and ‘comments’ may cease to exist and would change our world as we know it today 🙂
Mary, this is so heartbreaking. You are doing a wonderful job of educating others but it must be so frustrating for you as well. I know it’s been difficult for everyone especially Michaela from the conversations we’ve had as well as what I read on your blog and it seems so ridiculous in this day and age that people are as uneducated, naive and in fairness just down right ignorant to this extent that they would exclude their children from being with another child. That just riles me up.
Although I was interested to read what you wrote about her friends, I would say her friends aren’t bothering with her anymore because she is home schooled meaning she’s not at the same school anymore rather than because of the problems that she has with food allergies and celiac. She’s not directly in their here and now so unfortunately they just won’t think about her when they are making arrangements, etc.
I know when I changed school the friends I had disappeared because ‘it is out of sight, out of mind’. That’s happened with Samuel moving school as well, he hasn’t moved house just school but his best friends from there no longer speak to him, even if he sees them in the village where we live, they will say hi but he doesn’t get invited to their parties any more or the things that they arrange because they arrange them around their school life, because they experience things together and he’s not there to be even thought about being included, and they don’t want him because they want friends that can be there in their life 24/7 not just at weekends and the occasional evening. Although his situation is different because in his new school he made new friends and Michaela doesn’t have that option.
If you think about how many friends you have now that you may not see or speak to every week, that very rarely happens with children, their friends are the ones that they are practically stuck to. Unfortunately is just how life is and especially how kids are. It doesn’t help Michaela’s situation though and I do really feel for her because life isn’t easy and it’s especially difficult when you’re a teenager going through all of this and she has so much more to contend with at such a young age. I know you do a lot of work with basketball and with promoting food allergies, etc.. is Michaela in touch with any other groups where she can get more social interaction on a regular basis and start to feel more like she’s living than existing?
SJ, you are right…’Out of mind, out of sight’. I guess I just wish the parents would drop a hint every now and again to their girls about including her. Michaela plays basketball with all of these girls March through October and they still don’t include her anymore unless it is something the whole team is doing. But October through March, she is totally out of the loop.
I have made some changes that hopefully will be helpful. Starting in the next two weeks, I will be changing her schedule to include YMCA in the afternoons, 3-4 times a week. I know that almost all of her friends, both boys and girls, go there after school until their parents get off work. I’m hoping that this will spur some interaction from them. Keeping my fingers crossed.
Wow, i have nothing but admiration for you Mary. Your love for Michaela and her safety shines through and through.
We all have had her moments of insensitivity, particularly as kids. young children are so impressionable. Parents therefore play a very important, critical role in educating them, of opening up their ignorance.
Continue what you do…it may take mountains to move but success, change of heart, perceptions come with small steps.
Sukanya, I know that all of this is part of life and that one way or another, she would be going through certain aspects of this. I just know how different her life was before she was diagnosed and it really was different. I thought, as time went by, we would adjust to her new lifestyle, her diet would become second nature, and things would get easier. But, it seems just the opposite. The older she gets, the harder it gets.
Lately, she has been ‘cheating’, sneaking foods that she knows she cannot have. I try very hard to be level headed about this, knowing I have been expecting this. But I just cringe when I catch her, knowing how much pain she is going to experience just for a tiny taste of something she can’t tolerate.
Time moves slowly when you are working through obstacles in your life, trying to smooth out the road. Thank you Sukanya 🙂
Awwwww this makes me so sad..especially since I know what a beautiful young lady Michaela is……why people are so ignorant..and refuse to just accept a person for who they are…..Michaela is incredibly sweet….and being in her house I found no problem with food….I hate that people shun her..especially kids her own age….Michaela is lucky to have you Mary..your an incredible advocate for your daughter…..you go way out to help your daughter in so many ways….Keep doin what you do MARY..you are one special lady and I love you…As always…XOXOXOXOXO
Thank you Bonnie. I wasn’t uncomfortable about you and your boys being here for a week regarding food and crumbs. I guess it’s because we spoke so much about it before you had arrived, and had spoken to the boys as well prior to coming here. See, it really is easy to work around it. It just takes a conversation with the children, and the parent to be willing to learn about it. So simple.
We usually keep the house free from anything gluten to avoid cross contamination, but while you all were here, we were able to include gluten foods in some cases and kept cross contamination out of the picture. It may take a little maneuvering but it can be done 🙂
… as if hormones of a teenager isn’t hard enough to deal with! Bless her heart … and yours too!
My favorite quote:
There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance – that principle is contempt prior to investigation” Herbert Spencer
I am so very sorry that your daughter is going through this … and for you as a parent — that feeling of helplessness as a parent is so unbelievably painful!
You have helped me tremendously in understanding Allergy and Celiac … you my friend passed that information along so that now ONE more person knows … it sucks that its your daughter! I’ve never believed that bit about God or Life whatever one’s belief is about not getting more than you can handle … I think certain people are just destined to do great things with what they’ve been given!
Amy, thank you for your kind words. It is nice to know that there are individuals out there that have learned something from what I have written. Sometimes, I am overwhelmed with thoughts or feelings, and never being able to put it all into words. So much goes without ever being said. Thank you again 🙂
Big hugs to your precious girl! We have been there with my oldest son. One thing I have found is that there have been stages where it was better for my son to interact with children a little younger or a little older than he is because the kids in his age group are going through any ugly stage. Kids a little younger are so excited than an older kid is paying attention to them that they overlook or don’t even notice some of the things that peers will be judgmental about. Older kids (or even adults) are more mature and are able to see and appreciate the wonderful attributes and strengths of the younger person.
Alea, that makes a lot of sense. That seems to be the trend for my daughter as well, although she really wants to hang out with girls her age too. It’s difficult to explain to a child why another child doesn’t want to spend time with him/her, especially when you don’t, as a parent, totally understand it yourself. I appreciate your input. I believe I’m going to pay closer attention to this ☺
I’m so sad to hear that people can be so judgemental about something that is a health issue. It seems very unfair. It is challenging enough handling food allergies or any medical issue without feeling judged or excluded. Hopefully by raising awareness things will change, and I do hope your daughter will find a group of more intelligent, understanding young people who value her for who she is, not what she can and cannot eat! Thank you for sharing this honest and heartfelt post with us at the Gallery of Favorites.
April, it is sad. It can tear a parents heart out watching their child repeatedly hurt and disappointed. I truly believe that it all starts with parents talking to their child at home, teaching them. But with everything else, for some people, it is easier to turn their head in hopes that the situation will just go away. It’s a shame.