Yet again, I am facing a maybe death of a child. My boys were not going to be born let alone live long. My oldest is about to be eighteen. Now my baby girl is facing the maybe of the C word. We don’t call the monster by its name until the tests are done and it can’t be anything else. At five, she has had a tough road to go down with Autism, now this.

I have learned a few things in my time as a parent that not all parents get to know. I know that birthdays are beyond important when the Doctors tell you that there would not be one let alone two or three or another one.

I learned to never let time go by so quick that you miss the funny things your child does. Never be too busy that you do not catch them laughing at sunshine or crying over a squished bug. You may just need that memory one day to remind your self to smile.

I learned that sometimes the illness will win a bit but never will it win it all. I try to never do for the kids what they can learn to do for themselves. However, being both human and a mother, some times I forget. I picked up the baby when he couldn’t get his little malfunctioning legs going to catch up with his sisters. I cried like I couldn’t when he screamed through his physical therapy. No one can be strong all the time even when she tries. Yet another learned lesson.

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I learned just a few days ago that my children’s strength could be my weakness. As my girl sat through the needles as if they were nothing, I felt each prick and wanted to slug the tech.  I wanted to buy her the moon while all she asked for was a sticker.

I learned that Doctors never tell you enough and the internet tells you more then enough. Never, ever look up some maybe unless the kids are in bed and the spouse is not watching. Be prepared to process before having to put on that face we wear when we are the family’s Duct Tape.

Someone has to hold it all together. In my home, I am the duct tape. I don’t always want the job but I am best designed for it. Another lesson I learned is that no one can smile all the time but having kids you love sure helps you help him or her through things. The kids are my joy, my smile, and my daily reason to get out of bed.

The next lesson is that I will have to learn to live for myself as well. I write to deal with life. I write to set myself free. There is a little part of me that has never let the writer disappear behind Mother. A parent must remember that they will have to keep getting out of bed even if….

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All parents know that each of their children need to be special, but the parents of a special needs kids really have to remember it and enforce the concept into their daily lives. I cannot forget the child who claims she is the closest to normal in the family.

Simple facts must be dealt with. Movies, songs, and books that don’t bother other people and may have nothing to do with your family’s problems will get you all turned around for no apparent reason. You may cry, get mad, or shut down with out really knowing the why of it. For a while, know your triggers and try to avoid them. Good luck with that.

Your family, in-laws, and friends may care or may not. They are not always going to get it and you will get sick of trying to get them to understand. It is ok. If they love you and the children, then they will take you as you are. If the house is a mess, so what.  If the phone goes unanswered for a while, they will respectfully keep trying and will be there when you are ready.

If you need more help then tell them. If you need to get on the muck boots and deal with the crap your self then do it and do not feel guilty. Some of us are like that. We have to have control over what we can control. And for the record, you can’t control the illness so life’s details are all you may have.

I can boil it all down to this: You will love them now so they know it IF. You must take care of you in order to take care of them. You have to let them stand tall for as long as their heart, in any way they can. You will have people come into your life and others who leave but through it all, know you are not alone.

Smile as they smile for you, even when you both know pain.