There are things as a mom that are different for me than for those who don't have EDS. That's not to say the emotions I have aren't the same or similar to those who have other genetic issues.
I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.
My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.
I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.
Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.
About Me
- Queen Slug
- Little Town, Midwest, United States
- Just your average 30-something mom with EDS & Poland's Syndrome.
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3 comments:
I think there is more than one guilt in being a disabled parent with a genetic condition:
Of course there is the guilt that it is *genetic* and if your kid has it, they got it from you. Even if you didn't know you had it at the time of conception (and most of us have no clue) there is still guilt there.
I hope this helps some. The issues you face are difficult, but know that you are not alone.
-OSM
There is the guilt of anticipation: knowing what they may have in store, and the desperate attempts to try and forestall that potential trainwreck(s).
And then there is the guilt of being a mom with a disability: Having to say no to relatively simple requests because you simply cannot do them. This one does get worse when they get older BTW, because they either get angry; "why can't we do X? Billy's mom does it all the time" or else they understand; "It's OK if you are not feeling well, Mom" -which in a way is worse.
I don't have all the answers, but I do know it is important to forgive yourself for the stuff you can't do. And to make the most of your time with them on the "good" days. Or even the bad ones! My kids often like to just sit with me on the Big Bed and watch the Disney Channel, and that's OK.
hehe
I brain-farted and put the last paragraph somewhere in the middle in my last comment. Methinks I need some coffee...
OSM
It is nice to know I'm not the only mom facing these types of issues. If your getting thru it, then so shall I. The having to say no guilt is big. That one can cut to the heart.
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