For the most part when I say that being Evan's mom is a blessing and the hard parts are not really because of Evan himself but because of having to deal with insurance, school districts, countless therapy and Dr. appts etc. I really mean it. I mean I have days where my patience is short with him but that is true with any kid. One of the most important things in my opinion is having other moms or parents to connect with who are on this special needs journey as well. Both friends that I know in person and see on a semi regular basis and also the friends that I only know online and probably won't ever meet. I feel connected to all of these people. We are each others support. We celebrate our kiddos milestones and we sympathize with the frustrations and things we deal with. And we worry about each other's kids when they are sick or in the hospital. Checking facebook for updates and praying. When Evan was in the hospital so much over the summer with his seizures it was so great to read the encouraging comments or to ask questions and update people as to what was going on.
So I am checking facebook and praying along with many other people when there is a child or Mom in a critical situation. And when the worst happens and a child passes away our hearts ache and we cry for the family and I think for ourselves as well. When we started this journey with Evan and I started to meet other Moms and Dads with a special needs child I never really thought that any of my friends kids would pass away. Then almost 3 years ago my dear friend's son passed and then another online friend's son passed away and now my online friend Kate has had to say goodbye to her son Gavin.(you can follow her on facebook page Chasing Rainbows) So of course I worry about Evan. These other kiddos were just as physically healthy as Evan but like a lot of kids with special needs they held on to colds longer or needed breathing treatments etc. It just shows that it can happen to anyone. One thing having a friend who is grieving has done for me is helped me be more aware of what I say or aware of dates that are the anniversary of 1 month, 1 year, 3 years etc. birthdays and holidays I am always thinking and say an extra prayers for the families who have children in heaven.
When you have a child with special needs your life revolves around them. You worry about them, you fight for things that they deserve in school, you take them to countless appointments, spend hours doing research and of course caring for them. If you have other children you worry if this is affecting them and try to make sure they have one on one time with you and time away from their special sibling especially if it is not as easy to do outings with that child. You worry about your spouse and your relationship. I could go on and on. So imagine if that child passes and a lot of that is gone.
I am not sure how to not worry about Evan or even other friends kids. But I just try to control what I can. I make sure Evan gets his seizure meds because if something happens I know that I was doing everything I could do. I take Evan into the Dr. when my gut tells me to, even if it turns out to be nothing at least I had him checked out just in case. Beyond that I don't think I can prevent anything happening to him. I will cherish everyday I get be on this journey with Evan. He has taught me so much and I have amazing friends and experiences because of him.
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