She’s not all alone……..

Tonight I sat with a couple of the Michigan Football Players and waited for Faith. These are two boys who spend quite a bit of time with Will & Faith so they know us very well. Joe the older of the two, looked up at me and asked….how do you do it? It’s so awful, I watch, I see how hard it is, her disease is so bad, I never really realized. In my life if I am ever faced with something really bad I can learn from you, how to be positive, and to do it all with a smile.

I smiled and said, of course you could do it too, god only gives us what we can handle right? Right…I try to convince myself…all the time…I got this. But there are times, sometimes, that I feel like I am barely able to lift my head off the pillow at night, let alone smile while I do it. Usually those times follow a really bad few days, either physically or mentally for Faith. Sometimes it gets to me, sometimes I question gods faith in me and what I can handle…those days, the hardest days usually have nothing to do with how Faith feels, but rather how someone has made Faith feel.

Not to long ago we went to a party. There were many people there and lots of kids. Most of the kids at the party knew everyone, but they didn’t know Will & Faith. I am thinking there were maybe fifteen or so seven to twelve year olds there. We introduced the kids to Will & Faith and left them to watch a movie with the rest of the kids. I showed them where we were at the party. Shortly after leaving them, Will came to find me and told me we needed to leave. After questioning him for less then a few seconds I could tell by the look on his face, we needed to go. We rode home in silence. For some reason I didn’t feel comfortable questioning them. We got home and I invited the kids to have a sleepover in my bedroom and watch a movie. Faith was quiet. Way too quiet.

The movie was over, and I was holding her. Suddenly, her entire body was shaking. I asked her if she felt sick and she said no. I told her that she was trembling for a reason. She sat up and began to cry, hysterically cry. I knew by the way she was crying she was hurting, really, really hurting. I told her she had to tell me what was wrong. She said those kids, they said I was gross. They said they didn’t want to see my ostomy bag, and they wouldn’t let me sit near them, they kept moving away if I got near them. I felt destroyed mom. I’ve never felt so bad ever in my life. I don’t ever want to see those kids again mom. Then over and over again she repeated, I felt so all alone. I felt so all alone.

The strange thing about when your child is hurting like that, it hurts you too. Will and I were both crying right along with Faith. Will the amazing big brother, stayed composed and responded appropriately. He told her, she was rare like a gemstone and those kids were jealous because she was so pretty and dressed so cute. He told her that she was strong, and kind and none of those children even understood what it meant to be a good friend.

I, on the other hand handled the situation totally inappropriately. After crying right along with her, I apologized for dressing her in an outfit that showed her colostomy bag. I told her that was my mistake and that we would go out and find more clothes that hide her bag. I told her that I should have talked to the parents beforehand, to explain the bag and why she has it. Then I told her I was sorry for taking her somewhere new and putting her in that situation.

I honestly can hardly believe it myself. Not only that the children were so awful to her, but that I, the person who has gone through every second of this journey with her would even for a minute suggest she hide in the corner. That I would apologize for the very thing that keeps her alive. I failed.

When you have a chronically ill child no one teaches you how to handle these things, and I have gone over this night in my head hundreds of times. What I should have done differently, how I should have handled the situation, what I should do in the future. And basically……I got nothing. I can not protect my daughter from mean kids,from curious, clueless kids. I can not protect her from continuing to be hurt by people saying insensitive things. I can’t take back my ridiculous reaction to her hurt that night.

I do know, I shouldn’t be telling my daughter she should have to hide her body from children who call her disgusting. I do know that I have to do everything I can to help my precious girl love the body that gives her so many problems. I know I need to give her every tool I can to continue to move fearlessly though this life of hers, that often is so full of fear.

I believe in being as honest as I can with my children. I told them I handled the situation totally the wrong way. That I had always been scared of mean people and I really didn’t know what to say. That it was hurting me so badly to hear her so sad, and that I just wanted to make her feel better about it. I wanted it to be my fault that it happened, that had those kids not seen her bag that magically everything would have been okay and she wouldn’t be hurting so bad. Faith smiled. Not an, I’m trying not to cry smile, but a real smile. Confused, I asked her why she was smiling. She said she was lucky….lucky that I loved her so much that I was trying to make all of this my fault.

All of this has made me realize there are many children who suffer from Childhood illness and who have to deal with feeling all alone. That’s why I have started working with an amazing group of people who are building a camp for kids like my Faith. A camp that she will be able to go to every summer for an entire week, and be with other kids like her with feeding tubes and ostomy bags. A camp that will give her the tools to deal with kids who don’t mind their manners or who are just plain mean.

I’ve had friends ask me, how I can work on this camp, taking care of Faith is more than a full time job, don’t you think you should try sleeping when you can, or do something for yourself. I ask them, how can I not?

I know the saying is god only gives us what we can handle, maybe this camp is our way of being able to handle these things I feel like I can’t handle. Maybe Faith will be in the same cabin as another girl with a colostomy bag and they can laugh about the names they give their stomas and how to cover up how ridiculously loud they can be. Maybe she will be in the same cabin as another child that has to get fluids in a tube in her gut all day long to keep her hydrated and they can talk about how annoyed they get having to measure all the ins and outs. Maybe she will be with another little girl who understands that really all these kids want is to feel normal and like they can do anything any other kid can do. So the next time, because she’s only 8, there will be a next time she happens upon kids who aren’t so nice she at least she won’t have to feel so all alone. Because even though it feels like it….she’s not. She’s not all alone.



6 thoughts on “She’s not all alone……..

  1. I can’t even remember how I came across your blog sometime over this past year but I have thought of and prayed so much for you, your beautiful Faith, and your son.

    What a wonderful mother you are to have handled that situation the way you did. Kids can be so cruel … Your daughter seems like such an amazing little girl and anyone who is a “friend” of Faith’s will be blessed to know such a beautiful little soul.

    Sending you all thoughts and prayers from Texas…

  2. Bless you, Faith and Will. And what a good big brother Will is, huh?! Sometimes some kids are such little a-holes, especially when the mob mentality kicks in. Just remember: karma. Hope you all are doing well otherwise. Love from Ky-

  3. My daughter Ashley is 8 and going through almost the same issues as Faith. Ashley has two fingers fussed together on her left hand. When she was younger a few mean kids called her gross and told her they didn’t want to play with a gross thing. Ever since then whenever a kid looks at her wrong or has a simple curiosity about it she thinks she is being judged. It breaks my heart every time I see her hide her hand. I have tried so many things to build up her confidence. But I am no saint I was also that mom that gave the kids the evil eye when I saw them staring in the store or even once growled at a kid for pointing which was pretty bad. Now at school the kids ask her “what is wrong with her” and ask her why she doesn’t get it fixed. She comes home crying a lot telling me that there is nothing wrong with her that God made her that way and she hates the kids. After asking her what they actually said I was thankful to find out they were only asking about it and never said anything mean. I wanted her to understand that difference between simple curiosity and bullies. That is hard to teach an adult much less an 8 year old. Her teacher is wonderful she told me that she wants to help Ashley identify with her personality not her disability. I have a children’s book that talks about differences in people. Her teacher read it in class and after the book Ashley got up and talked about her hand. We made up a story that the kids could relate to that her middle finger was the momma finger and the index finger was the baby finger. The baby finger will always be too small to move on it’s own so the mamma finger wrapped up the baby finger in her skin so she could help the baby finger move. Now if you were to separate them the baby finger would never be able to move. I was so proud of her! She is very shy and never wants anyone to look at her much less ask about her finger. The kids all told her that was cool and they haven’t asked about her hand since. I want her to embrace her differences as beauty. I remember kids can be so mean and as I get older it seems like they are getting meaner especially with social media. I want to build that self confidence in her now because she is going to have that normal tough road ahead of her just like every other kid but she will also have her disabilities to overcome as well. Like you said there is no one teaching us how to do this. I absolutely love the idea of a camp! My daughter has other issues other than her hand which stops her from doing a lot of what the other kids do. She tries but she just can’t keep up and I know that it breaks her heart. I would love to be able to have her around children with the same struggles so she doesn’t feel like she is alone. I know there is a camp called the Painted Turtle in Lake Hughes Ca but that is the only one I have heard of. I’m sorry this is so long but when I find parents who can relate I can’t stop talking. You have an amazing family and you are an amazing mother. Thank you for your blog!!! Keep doing what you are doing.

  4. Hi there! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

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