When I think of Evan's life in the future I wonder, "Will he fit in?", "Will he have friends?" "Will he ever walk, sit or talk?" And then I stop myself because I know he will. I know he will be OK. I know we will teach him to be a strong independent person. His personality is happy and outgoing already so we will have no problems there. But will he walk when he is 4? or 5? or 6? Who knows and I'm starting to care less because I know he will. Some parents don't even get to think of these types of things because other serious issues are going on that they have to worry about. That is why I appreciate everyday. As bad or as tough as it may seem, someone has it worse, unfortunately.
I like to live and lead a positive lifestyle. Being sad, overwhelmed or frustrated has no benefits. Of course these moments occur but they are brief and I do not let them break me. How could I not appreciate this life. We live in a beautiful home in an amazing community. We were blessed with an amazing family and group of friends. I am fortunate that I can stay home with my boy thanks to my hard working husband. We have a friendly rambunctious dog that is very gentle with Evan (and even the cat too). We are very lucky. We are lucky that Evan is with us and that our life is pretty much normal. At least I think so.
I know I am on a mission to raise awareness so that Evan's life will be easier when he gets older but there honestly is only so much you can do and so many people you can educate. From there you just need to live your life. As Evan gets older we will teach him how to politely respond to questions or looks, starting by displaying these actions before he can voice it himself. He will learn how to deal with these situations but at the same time I don't want him to ever think that he owes anyone an explanation. I want him to know that he is just like everybody else. I do not want him to go out in the world always on guard thinking he's "different". And as much as it is important to teach him this, it is also important to teach him to be positive and appreciate everyday. Appreciating the major things like family, friends or a safe and comfortable home is just as important as the little things like a walk on a fall afternoon, a warm cooked meal or snuggling with mom and dad on Saturday mornings. It all makes for a happy life. Happiness is key.
Carly , author of Tune into Radio Carly, wrote a great post sending a message that "It gets Better" When I asked her if she had any advice for Evan when he got older this is what she said. (I intended on posting this during Ichthyosis Awareness Month as a part of "tips" and time got the best of us!)
- Try not to compare yourself with others (or parents, don't compare your kids with other kids). Your progress is your own. You may look different but you're perfectly you.
- Have a good relationship with your doctor. Hopefully you'll be seeing a dermatologist. If you're not, ask your general practitioner to refer you to one immediately. See them regularly. Listen to their advice, but also let them know you want a say in your treatment. You'll know what feels best for you. As you grow up, you'll get to know your skin pretty well.
- Try to stretch yourself as you mature. Get out there and have a go - play sports (though this is my least favorite thing!), join a group like cubs or girl guides, sing in a band. You'll make heaps of friends and learn new skills. The best thing I did was get a part time job in a department store age 17. Working in a public role helped me become more confident, and it also forced me to answer questions about my skin in a calmer and more professional way. I made life long friends at this job. I wished I'd started working earlier.
- Find a support group. Your local hospital may run one. You may find one online. You need not even talk about your Ichthyosis - you may want to just talk about your interests. Remember though, everyone's experiences are different and what works for your friend in the support group may not work for you - check with your doctor before trying something new. And don't let others' issues with their illness bring you down. Surround yourself with positive people.
Seeing what a normal, happy life Carly leads makes worry less about Evan's future. She is happy and successful and though, of course, has had her "bad days" due to skin, it's a part of her life and she picks up and moves on. She sends a great message and I am glad to know there are so many positive people to influence Evan's life. Happy is a great way to live.
Happy boy waiting for the bus on the first day of school