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- Nathan & Russell Silver Syndrome
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- Noah & Nathan's Stories Continued
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Monday, January 24, 2011
Article: Surviving Special Needs ... by ME!
Surviving Special Needs
By Annissa (Mammarazzi13@aol.com) © 2011
It’s funny, some days, how people perceive you. Some days, people look at you like you gave birth to a monster, and others, people feel the need to tell you how strong you are. What they don’t understand is being a parent of a child with special needs has nothing to do with strength.
I personally dislike the phrase “special needs.” Every person has a few special needs, a certain type of bottled water they prefer, the need to feel superior, or just those who enjoy not being noticed. They are all special needs an individual has to cope with feeling comfortable. My children, they are unique!
My middle two boys are my medical miracles. I have one child born with a rare disorder called Mosaic Trisomy 16, and was only one pound twelve ounces when he was born. The Doctors, I was told later, pretty much had no hope of him having any quality of life. However, he is 9 years old now and proved them all wrong. Does he have hurdles, of course he does, but nothing like they tried to make me believe he would. Then my 3 year old came along and he has what seems like a never ending list of medical stuff going on, from Autism, to missing part of his brain, to having a type of dwarfism, and more. The thing I hear the most:
YOU ARE SO STRONG!
Yeah, not so much! It has nothing to do with my strength. It has more to do with supporting my
children and being there for them. Doing everything that needs to be done to make sure they have a good life. Having a wonderful support system, and finding outlets for myself and my family to create a type of normality. Most of all, it comes right down to love. LOVE is the key to it all, you’ll do anything for love.
Most parents of kids with unique issues would give anything to trade places with them, to protect them from the pain, and let them live in the innocence that most children get to experience in whole. Most of us don’t break down until we’re behind closed doors, because we don’t want our children to see how much it affects us, because it’s not about us. All parents just want to protect their children. Unfortunately, those of us who have unique kids, we have to sit back and watch them go through things no child should have to. We have to be their biggest cheerleader, their support, their parent, their friend, and sometimes their nurse.
So what about us parents? How can we survive all this and not just fall apart. It’s all about a few key things.
· Trusted Doctors
· Wide Support System of Family & Friends
· Taking some ME Time.
And when one of those things isn’t in place, everything just feels off balance, so it is important to find that balance.
If you don’t like your doctor, keep looking! We have gone through a few that we didn’t like, but for the most part, we have found a lot of wonderful people in the medical field. Having that support system is very important. Family, Friends, Church, even strangers will come up and offer help, there is nothing wrong with taking it! It is sometimes hard to do, but you will need to take it. Practice saying YES, instead of NO … followed with “we are doing okay.” It’s okay, to not be okay! Finally, finding some time for yourself is usually the hardest. I know I’ve gone days where I don’t eat and it suddenly dawns on me when I’m not feeling well at the end of the day. It’s hard to take time for us when our children needs us so much. Read a book, take a bath, play on Facebook, find something that is selfish and just for you, for at least twenty minutes every day. Even if it’s after your kids go to bed, and making yourself take the time before you go to bed.
The last thing I suggest is starting a blog. It may not be for everyone, but I suggest it mostly so you can get out some of those pent up feelings that you don’t want to let out, because it’s not good to hold that stuff in. It can be a private blog, for just your eyes, or a very public one where you share it with family and friends to keep them updated. If writing is not your thing, that’s fine. Just do it for yourself, most of you will find it therapeutic. Who cares if no one but you reads it, you aren’t doing it for readers, you are doing it for yourself. If you go public with it, it’s also a great way to get awareness out about your child’s medical issue. Even if you go public, you don’t have to use names, or locations. Give your family a cute nickname, call each of your kids something else. Information you share is up to you. And there are places of support for bloggers for Unique Families. It’s always nice to be able to talk to other families who understand a little, or a lot, on what you and your family might be going through.
Most of all, take time to capture memories with your children. Photos, mementos, maybe even start a scrapbook. It’s amazing how fast they grow up, how much they change, and it’s wonderful to sit back some nights and just take a walk down memory lane.
Our children are everything to us. It’s amazing how, once they are born, it’s not about us anymore, it’s all about them.