Bad Mama

April 16, 2007, 6:11 am
Filed under: Disability, Parenting

A couple of weeks ago, a very dear friend of mine had her son evaluated for speech delays. What was expected to be an appointment that concluded with, “he’s fine, just a little delayed, here are some ways to encourage his language” ended up with a series of appointments and evaluations and a diagnosis of autism.

When she was telling me about what was going on, she said, “Now I understand you a lot better” and what part of my heart was not broken by the diagnosis shattered completely. I did not want her to understand me better, not like this. I don’t want anyone to have to. This has gotten me thinking about what, if anything, someone could have said to me when Peanut was born that would have brought some comfort. There isn’t a lot, but I have learned a few things through my own experience and that of hearing from other parents of children that have extra challenges.

  1. This sucks. It doesn’t matter that it could be worse, it still sucks and you are entitled to think so. And parents of kids (as well as the kids) who are pointed to as examples of “worse” don’t really appreciate it.
  2. I don’t know anyone who was originally comforted by the idea that “God placed this child with you because He knew you could handle it”, but some people do eventually find comfort in those kind of beliefs. It’s okay if you don’t, however. I have found that many parents end up with a different relationship with their faith after they’ve had time to adjust to their new reality, and quite often it is stronger than it was before. In the meantime, it’s okay to be very angry.
  3. You may be very angry about a lot of things. Anger at your child’s doctors, and your OB who told you everything was fine. Anger at your partner, your friends, and even at your child. This is part of processing your grief. It can be a very useful emotion when things need to get done. I don’t know if it ever goes away entirely, but it certainly improves.
  4. It is possible to both grieve and to still think your child is the best thing since sliced bread. You are not being disloyal to her by being sad. It helps to understand that what you are sad about is not your child today, because she is the same kid she was yesterday. You are sad because her future life is going to be different and more difficult than you expected. It was going to be different anyway, but you are facing that disappointment a lot more suddenly than most parents do. Maybe that’s a blessing, even though it doesn’t feel like it.
  5. There is a difference between people who mean well and just don’t know the right thing to say and those who are truly clueless (Trust me, if I wasn’t grateful she was alive I would have given her away). When you do not respond politely to something that was offensive, the ones who mean well will be embarrassed to have said something dumb, and will probably learn from it. The clueless ones get mad at you for not appreciating their insight. The important thing is to encourage the well-meaning people to understand that no one expects them to have all the right words, because the “right” words are different on different days. We all say dumb things sometimes.
  6. And the most important thing is that it will be okay. As sucky as it is, it isn’t the end of the world. Humans are pretty adaptable, and you will adjust to your new reality. That’s not to say that seeing “normal” families and kids will not be hard; it is. But it does get easier, in part because you begin to see your child again as a whole person that wouldn’t be the same without her challenges. I still struggle with this, but seeing adults with Peanut’s condition that are happy and healthy helps me to remember that everyone has challenges, and while hers are more unusual than most they are certainly not insurmountable.

It’s early and I haven’t had enough sleep. These are the thoughts that were running through my head and keeping me from sleep. If anyone else has something to add, I’d be interested to hear it.


2 Comments so far
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Thank you for this post. You said it all “just right”. I’m sitting here nodding in agreement as I read.
I appreciate you putting these emotions and thoughts into words….

Comment by Donna Murray

You see, I have been trying all day to think of the right thing to comment. The words won’t come together in a series that makes sense to anyone but myself. I apologize in advance if stupid things ever tumble out of my mouth.

At first, I remember feeling sorry for you, wondering where you would get the strength and patience to handle the baby you were going to bring home. Then, I realized feeling sorry for you was wrong, it wasn’t the way to look at it. Peanut is who she is because of how she was born. She wouldn’t be the same without her physical differences. Since she is truly amazing, intelligent, and just about the cutest damn thing I have ever seen, I can’t imagine her any differently.

With the increase in birth defects and autism, and other diseases and defects that we have seen in the last 10-15 years, the term “normal” may need to be altered. Who defines normal anyways?

Comment by Jen

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