just be nice

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I have somethings to say. Chances are if you are reading this blog you are not one of the people who need to hear this message but it’s something I have to get out of my head.

Just be nice.

That’s it. Really, you can stop reading right there if that is enough of a message for you, but if it’s not I’d ask you to read on.

I am to the point that I don’t really remember Faith feeling good. It seems that we have been dealing with her feeling sick for her entire life now…and that is something  that makes my everyday happiness a real struggle. We have hours of great health, times where she is feeling great, but mostly, she’s dealing with pain or dehydration most of  the time. We’ve got the nations finest doctors working on it, and I believe we will come to a point where she is feeling good more than she is feeling bad.

I can’t begin to explain the helpless feeling I have when she is in pain, and she’s screaming, and crying, and I try every trick I have to relieve the pain, and escalate her pain meds until I reach narcotics and finally give in because I can’t bare to see her face when she is so uncomfortable. She can’t sleep, she can’t talk, she can’t move, she just screams and cries. I am usually pacing back and forward debating calling an ambulance or throwing her in my car and getting her to the hospital. Sometimes the pain subsides and we are okay at home, other times it does not and we have to go to our second home at Mott Children’s Hospital. Last night was one of those nights, I was up until 5:45am she was moaning most of the night and I kept getting out of bed to check and see if she was still okay. 

Working on hardly any sleep we asked the kids what they wanted to do today, Faith said she wanted to go see Brave….a movie that from the moment the previews came out has made me think of my brave little Faith. One of the lines on the trailer is, “if you could change your fate, would you?”   I am a glass half full person, I have always been thankful for all of my life’s experiences. I have never wanted to change my fate, but I have thought a great deal about if I was given the option to change Faith’s fate.  We agreed to take the kids to the movie, even though my head was pounding. You see, I know Faith and what I can tell is we are likely headed back to the hospital. She has made a progressive decline in the past few days, and I have been unable to turn things around at home.  We needed to get to this movie, because there were others we’ve missed because she was admitted when they were out.

So we went, and watched, and I loved the fact that she was totally focused on the movie and not her health. That’s something that doesn’t happen very often.  So then, the reason I tell this story is a family in front of us stopped us after the movie and said we had ruined their movie because I had kicked the chair in front of me and my daughter was talking. They were not at all nice about these facts, they were rude and very confrontational. Chances are I did kick the seat in front of me, not that I recall kicking it, even once, but honestly there are days I stand in Meijer and can’t even remember why I am there. Anyone that knows me, would know the last thing I would ever do is purposely make anyone uncomfortable. And Faith, well is Faith and she talks all the time, but she didn’t say much except for, mommy hold my hand, I’m scared. Yes, I am a bit caught up in my daughter’s happiness right now and the fact that she is in a movie theater and not sitting in a hospital bed. She said maybe 20 words total, at an afternoon showing of a rated PG animated Disney movie…go figure you may hear a kid say a few words.

What would have been nice is for the family (two 17 year olds, a 50 something mother, and a 10ish year old girl) to turn around and say, you keep kicking my seat, because I promise you I would have been so embarrassed I wouldn’t have done it again. Instead they wait til the end of the movie and get nasty. So the topic in the car on the way home instead of how important it is to be brave, is how some people are just not nice.  Four hours later Will is still talking about the people at the movie. 

 I really, wish some people could learn how to be nice.

Once we were at Crisler Arena watching a basketball game and Faith had a fever. We stripped her down to just a t-shirt, the man behind me went on and on about how I was a horrible mother, allowing a sick child to be at a basketball game. That I should have my children taken away from me. Will heard that, and started crying and didn’t stop until we got home an hour later. Faith gets fevers all the time, usually they mean absolutely nothing, and she wanted to stay at the game, the day before she was being admitted to have another surgery. 

One afternoon Faith was on a pass from Mott and we took her out to lunch for pasta. She had a neogastric tube placed in her nose that ran down to remove the contents of her belly. This was before she had her feeding tube placed, and also the #1 deciding factor on why we had it placed. The woman who brought out the food, from across another table, said, OH my god, it looks like you have spaghetti coming out of your nose. I let her know it was a feeding tube, but she quickly went to get a busboy to show him how much it looked like spaghetti. We walked out, Faith was crying, and we haven’t been back to the restaurant ever since.

A woman at Target told me I was disgraceful for bringing Faith into the store because she had seen her throwing up in the parking lot, and how dare I put all the other children at risk to go shopping. Faith throws up all the time, she’s not contagious.

Faith has to ride in a stroller rather than walk, because she sick, not because she is lazy, but more often than you could possibly imagine, people tell her she is too old for that thing. 

When dressed Faith looks like a totally normal healthy child. You would have no idea that under those clothes there is a body that’s broken. You would have no idea the struggles she goes though EVERY SINGLE DAY.  One of my girlfriends wanted to have a card printed up that said, Faith has a non-contagious disease that she suffers greatly from, mind your own business and  have a nice day. (Actually,  her words were much more harsh, but this is all about being nice)  She was with me once when someone was staring at her colostomy bag that had somehow gotten caught on her dress and was in plain sight for everyone to see.  We were working on fixing it, and rather than act as if she had seen nothing she stood there looking at Faith with her hands over her eyes, because she was clearly, very embarrassed.

Then there is the countless people who comment on how small she is and that she looks nothing like a 6-year-old kid. Sometimes people jokingly ask if I feed her…Maybe I should tell them, yes, actually I sleep about four hours a night because of the regime we have her on with her tube feeds and rehydration boluses. 

I sat on Wills bed for a while tonight before bed, obviously, still bothered by the event at the movie, he said, I wish we could have a sign that says leave us alone, my sister is sick. There are days I think the same thing, but my sign would say, please be careful what you say to my daughter.  But should we have to? If everyone could just stop for a minute and realize, everyone is going through something, everyone has the reality of real life stress that they are dealing with. I called my sister-in-law to tell her about the movie incident, but first asked her about her day. She has two sick kids, someone who she loves that she that she is very worried about,  post tornado issues, and someone broke into her mini-van and stole their radio, all in a day.  Suddenly, my rude people at the movie story didn’t seem like such a big deal. 

Faith, has completely let go of the incident of the movie, as I laid next to her in bed tonight I asked her what she was thinking about.  She said she was wondering if Russell would have liked the movie Brave. Russell is a friend that Faith lost at Mott last year….Another lesson in life, from my 6-year-old daughter. Life is so much bigger than this. Just be nice.

 

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23 thoughts on “just be nice

  1. People are mean. We all act and say things before we think. May this be a lesson to us all. It is not our role to judge, that’s God’s job.

    I love you all so much and all of you are compassionate and imperfectly perfect!

    Take me out with you next time . . . . I have many nice words I would love to share with others.

  2. Toni K

    Thank you for sharing. I agree. People should be nicer. I have always tried to tell my kids as they grew up not to stare or point at people, you have no idea what they’re dealing with. It’s too bad more people can’t just be nicer. I think they must just be unhappy people to begin with. Praying for your daughter, and you and your son 🙂

  3. Ruth Tatara

    Thank you for this post. You are all so brave and I hate that fact that people can’t be nice, respectful or loving when you are dancing in the rain, watching movies, living your life. xoxo

  4. Lizelle

    I agree wholeheartedly – the world would be better place if everyone, everyday would just be a little nicer! 🙂

  5. Heather High

    Every blog of yours I read in one way or another sends me back to taking care of my son. He was diagnosed 3 weeks after his third birthday with Stage IV Neuroblastoma. One of the things that always bothered me in the 3 1/2 years he fought for his life were the looks & comments under peoples breath. I understand completely about the signage…I seriously considered it too! Yes he’s bald, sorry he has nasty bruises you don’t want to look at, but the chemotherapy he’s getting to save his life has side effects!!! Something along those lines anyway… All we wanted was to live life as “normal” as possible. When I took him to see Spiderman in the movie theatre he was on a portable infusion pump. Near the end of the movie it became occluded & the alarm went off. Yes it was loud & obnoxious but the glares & stares and whispering amongst the other moviegoers was much more disturbing to me. You are absolutely right that people need to just be nice, they never know when they might need someone to be nice to them. If they had half of an idea what you have to face everyday they would be defeated.

  6. jackie.dainton

    be brave little lady people who are nasty to you are not worth getting upset about the world would be a better place with out nasty people but sadly this would never happen but it proves you are the one of the nice ones because you know what is nice and what is not so stay strong darling .
    .

  7. Aunt Berta

    Just forgive them and move on…….there are so many people like that, you just have to feel sorry for them. It would be wonderful if everyone knew the definition of compassion….a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Love you bunches.

  8. Thank you for being nice! and yes… Russel would have loved the movie- especially with Faith!
    Bobby and I talk a lot about how kids like our’s have “hidden” illnesses. On the outside Mia looks healthy, but her inside is really messed up. People have no idea what we go through to keep them as healthy as we can (staying up at night, medications, hospital stays, surgeries, etc…) and I wouldn’t in a million years want them to understand.

  9. Kelley Kusnier

    I wish I had been with you at that movie theater! I would have given those people a piece of my mind! I hate rude people that aren’t nice 😦 Emma just turned 7 and she still sucks her thumb and yes she is too old to suck her thumb and we are working on it. It hurts when people make mean remarks to her and me like “how old are you” your going to ruin your teeth” or the worst they call her names like” your a baby”! It is somthing that soothes my daughter and makes her happy so why the hell can’t people BE NICE! They don’t realize how they hurt a childs feelings or a moms 😦 I’m so sorry that you had your wonderful day ruined by RUDE people! Just know you are the best mommy in the entire world! Thats all that matters and Faith and Will love you soooo much! Smile mamma bear don’t let those rude people ruin your day 🙂 YOUR AMAZING!!!

  10. Susan

    You are supermom and you are amazing! I cannot even imagine what you go through with such callous, ignorant people but just know that you and Faith are both so incredibly amazing and inspiring! Always remember that all of your readers think so and we’re sending your family our best wishes for health and happiness! ❤ Please don't ever let anyone bring you and Faith down xoxox

  11. I lost SO many friends after my brother was in a coma for a month. The reason I no longer have those “friends” in my life is because we ALL discover things about each other when trauma hits. When you are ‘tested’, you can’t afford to have negative influences in your ‘bubble’. You will lose every time.
    I now surround myself and my brother with POSITIVE influences, people and situations.

    I believe the path to Heaven or to our ‘Next Journey’ is lined with booties. All colors and sizes.

    When you take YOUR booties off and when Faith decides to trade HER booties in…..someone ELSE will have to walk in them. They won’t be destroyed. They will be passed on to another soul.

    My advice:
    Leave your email, Twiiter acct name, and phone number in your booties. Tell the MEAN PEOPLE to let ya know how it feels to be in YOUR SHOES.

    “BE NICE or GO HOME”

  12. Lori P

    I learned a valuable lesson today. I have NEVER said anything but admit I have made quick judgements when I see parents out with a sick child. I shall come think of you and Faith and Will from now on…withhold judgement . Thank you.

  13. I try to always have a kind word and a smile for strangers. You just never know what is happening in the lives of others, why would anyone want to add to the hurt or sadness someone else is going through. It never fails to amaze me how cruel people can be. With all the disasters going on in this world we should all be making our best effort to show compassion and be helpful to one and other. If you can’t do that, just STAY HOME!!!!!!!!!!!!!!!!! I’m sorry you and your sweet children had to be exposed to the morons of this world, because that’s what they are. Best wishes and prayers to all of you.

  14. I logged into my twitter, which I never use. I clicked your name, and your blog came up. I can’t help but bawl my eyes out at 1:30 in the morning. My son has things wrong with him that will require a kidney transplant…he is 1. The puking in the parking lot really got to me. See, my son looks normal on the outside too. People just don’t get it. I think they never will unless they experience what we go through, and I pray everyday that nobody else will have to endure anything that we go through. I not only deal with my son’s issues, but the lack of medical care. We were able to be seen at Mott’s twice. Nephrology and Urology. We loved it there. Very intelligent, caring, compassionate Doctors. They had a plan for my son. Here, they aren’t aggressive in his care at all. They take their time. They are not proactive. It breaks my heart. I just want what is best for my son. We just can’t afford the trips back and forth (or a car that will make it). Anyways…Life is too short to worry about somebody kicking your chair. Life is too short to dwell on the onlookers who have no compassion for others. My son vomiting all the time, people think he is sick. We are not allowed to have playdates because “I am a horrible mother who takes her sick kid out to infect others”…these comments hurt. We are strong moms but at the end of the day, they hurt, and there is nothing we can do about it but accept that there are ignorant people out there and to move on. Lots of hugs for you and Faith.

  15. I’m so sorry you go through this kind of thing, especially that it’s so frequent. This summer, I became inspired by a tiny bit of a larger quote, “Be a blessing” and that’s what I’ve been trying to be. It’s pretty easy when you’re making an effort.

    Do you have an About Me/Us post or something that would answer the questions of people who are landing here for the first time? I’m confused and don’t know your story. Thanks.

  16. When people act rude towards others or stare at something they don’t understand, it’s more of a reflection of themselves rather than the person or thing they’re reacting to.

    We should all have as much grace as you.

    Thank you for sharing. Beautifully written. I’m sure your daughter is a very special person.

  17. itzmpb

    I am so saddened by the behaviour of so many callous idiots (I know, that’s not very nice, but I believe in this case it’s true). One of my brothers was born with congenital birth defects, heart, hand, spinal and so forth. As a youngster, my parents volunteered for Red Cross swimming and we spent every morning helping out at the pool classes and then later went swimming in the afternoons. One afternoon as we were walking to jump into the pool, an ignorant woman saw my brother’s hand with missing fingers and came running up screaming, pointing and gesturing, “get him out, get him out, don’t let him in! he’s a leper, we’re gonna lose all our fingers and toes, etc. etc. etc.” TG the lifeguards & staff stood up to her and she left in a huff with her kids. I learned that day at 9 years old to cry under water where no one can tell what you’re doing. I hope and pray for your sweet daughter, you and the rest of your family that you will find yourself surrounded by enlightened souls, guided by angels and be blessed to have your paths crossed with loving, kind people all of your lives. God bless & peace, love & hope!

  18. missliz

    What a courageous, giving and loving family you have. I am so sorry for your daughter’s illness and will happily pray for her comfort, as well as yours. Thank you for sharing your story. I think we need to make more people aware of our differences, so that they won’t make such a big deal about them. God Bless you all!

  19. Christina

    I saw your story on Fox 2 news – about Faith and her new gymnastics equipment. She touched my heart…and I found your website, and now you have touched mine as well. I am sitting here at 11:30pm crying for your little girl, and for you…the tired, unwavering, BRAVE, Mom who is taking such good care of your baby. I will keep your family in my prayers. There is definitely something special about your daughter…she is lucky to have you as her mom. Every child with chronic illness or special needs needs a mom like you in their corner. God bless you all!

  20. My sister and I have a very small retail and gift company called Just Be Nice that we inherited when our father passed away in 2008. (www.justbenice.com). Our father had his fair share of problems, but he dedicated the last part of his life to trying to make the world a better place. He truly believed that being nice was the answer. I was really touched and inspired by your blog post about wishing people could be nicer to you and your family. About 15 years ago I was diagnosed with hodgkin’s lymphoma and I understand the pain of having people stare at things they don’t understand or don’t think are normal. I wish everyone were nicer to you and I wish there was more we could all do to help. I feel helpless, but I would love to send you some free Just Be Nice stickers and maybe some t-shirts if you are interested. As I’ve started to believe – you need to create the world you want to live in AND maybe the self absorbed people you meet will get the wake up call they so desperately need. It can’t really feel that good to be so mean, right? kat@justbenice.com

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