General Special Needs

Rants from a Woman About to Lose her S***

I have had many moments in my adult life where I have had to step away and take a moment. It just amazes me though how clueless some people really are.

Let’s start 10 years ago. Tim and I were new parents and had a child with more medical issues that we had ever seen. We were learning how to use new equipment, all about the different types of specialists, diagnoses, treatments, etc. Every day was a struggle to keep our sweet little baby alive. Luckily social media was not what it is today- I really don’t think I could have tolerated social media at that time in my life. I would get so angry at friends and family that would complain about things I would have given anything to deal with. Maybe they were complaining that their child failed the driving test, or that little Johnny was almost 3 and they just can’t get him potty trained. Or maybe I would hear someone asking for prayers because they just could not get over a cold and they had a big meeting coming up at work. UGH!!!! Things things don’t matter! I would love to have a big work meeting coming up that I may miss due to a cold- but instead my concerns are over how to keep my child alive.

It took a while, but I eventually learned that people that do not have children with special needs have very different concerns than those of us that do. They don’t know what my life is like and their concerns were not intended to anger me. I eventually realized I was glad they did not know what my life was like. I don’t want other children to have to go through what mine is going through and if they were completely clueless to my concerns then maybe that was a good thing.

Around Casey’s second birthday I finally met other parents of children with special needs. This was a whole new world for me, I could talk about my fears and concerns and these other moms really understood what I meant. It was great, for a little while. Some of the moms have children with very complex needs and I felt like they did understand. However, there were other moms whose children had the label of special needs, but the child was very minimally impaired. I didn’t understand how a mom with ADHD could come into a group with moms like me and complain about her life. Again, her concerns sounded like a walk in the park and something I would have loved.

I took a step back and realized that in the special needs world things are very subjective. What may seem like the end of the world to one family is a breeze to another. However, we all have very similar emotion struggles. We all have a child dealing with something that we can’t simply fix. It’s not a broken bone that will heal, it’s not a cold that will be gone in a few days, we are all dealing with ongoing issues and we can’t fix it. I had to work really hard to appreciate that while their specific challenges (equipment, diagnosis, doctors, etc) may be very different they were hurting as a parent in a way very much like me.

Then came social media. I was so happy to see all of the different ways that the special needs community connected through social media. There were groups by location, diagnosis, general special needs, for school issues, for insurance, over time there has been a page or group for just about anything you can image. I would go to some of the diagnosis specific groups and get very angry. Casey’s diagnosis has varied effect. Some children or very complex and similar to Casey, but on the other end some children have very few issues at all and will be able to live very full and independent lives. When those families would complain I would lose my mind. Do they not know how lucky they are that their child is doing so well?! Then I would have friends (from the special needs community and from other areas of my life) in my news feed. Seeing people post happy celebrations was great. I am honestly happy for them. Seeing people complain about things that simple don’t matter was getting to me again, just like it had early on with Casey.

I had to learn to let things go, I left groups that I felt were causing me more anger than support. I removed some people from my news feed so that we were still friends, but I wouldn’t see their daily rants on topics that I felt were a waste of time and energy. After a while I was able to log on and not get angry.

Over the last year I have had to step back again many times. After we lost Casey in March I have had very little patience for people complaining about petty things. I want to scream at them and tell them that they have no idea what really matters in this world and that they need to be thankful for what they have. Quit complaining! Your family is healthy, you have a roof over your head and food on your table, life is good! Without fail though, people have no idea how silly they sound when they act as if the world is ending because someone messed up their order at McDonalds and the kids cried because they got fruit instead of fries with their happy meals. No, I will not boycott McDonalds with you over this, nor will I share your post and ask my friends to never go there. IT DOESN’T MATTER!

I had to learn to step away again and take a moment. I’m glad that these moms have children that can cry when they get the wrong order. I’m glad that these moms don’t know the pain that I carry with me every day. I wish that no parent ever had to lose their child. For that reason I am able to be happy that these people annoy me so much and make me want to scream at them. It’s still very hard to keep my composure though when I know what really matters in life and how fortunate these people really are.

I guess my perspective has changed a lot over the years. Casey has taught me to be thankful for everything and she has taught me what really matters in life. I like to think that if she had been healthy and my life had been different that maybe, just maybe, I wouldn’t be one of these clueless moms that drive me crazy. I hope that I would be one of the more compassionate and caring people.

If you have a friend or family member with a child that has special needs, or one that has lost a child. Try to keep that in mind. You don’t have to edit everything you say, but try to appreciate what you do have. We all have bad days, and we are all going to complain about things from time to time. Take a minute and realize what matters most to you. At the end of the day if what matters most is still there, it’s not that bad.

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