I'm sorry (words you'll never hear me say)

I'm NOT sorry my daughter makes you uncomfortable. That is YOUR problem, not hers, not mine, YOURS! GET. OVER. IT.

There, I said it.

I am a very sensitive person. I wear my emotions on my sleeve and hate when others are hurting or uncomfortable, especially if it is my fault in any way. I have no problem apologizing when I've done something wrong (and as many will attest, even if I haven't done something wrong I'll still say I'm sorry for the situation they are in because I really, truly am sorry that they are in that place at that moment.)

With all of that said here goes a post that I have been thinking about writing for a while but just haven't been able to get the words out just right. Lets see if today is any different.

When Lil Bug was born with Spina Bifida we were sad. Not for us, but for her. We knew that her future was filled with surgeries, weird glances, inappropriate and/or insensitive questions, and, quite bluntly, ignorance on the behalf of the rest of the population.

We take great measures to build Bugs self esteem and be confident in who she is. We want her to fully embrace herself, not be embarrassed by it. Sure, she is only 4 years old, but she is not ashamed in the slightest that she walks differently than her peers, that her head is not perfectly symmetrical and that she doesn't use the bathroom like every other person that she knows.

We are completely honest with her too. We have explained from before she could even understand that she was born with a hole in her spine and that is called Spina Bifida. She knows she has a shunt that helps the fluid drain off her brain. She can explain why she wears AFO (leg braces) and why she can't be around magnets. We don't complicate it...we just tell her that her leg muscles don't work the same as mommy's and daddy's and so God gave us tools to help her walk, such as her AFO's and her walker. In her beautiful innocence, she accepts it. Sure, she has questioned things...any intelligent person would...but she accepts that she is perfect just the way she is.

Now, for the part that people don't understand and have a hard time "dealing" with...the fact that she is cathed rather than pees on the toilet and *gasp* has to have a forced bowel movement rather than just going naturally. So what?!?! I don't get why that matters to one single person other than The Designer, Lil Bug and myself (and perhaps her sister and grandparents).

Every day at 8am, noon, 4pm and 8pm we cath Grace to empty her bladder. If we are late or don't do it completely, it almost always results in a urinary tract infection. Even if we do it right, she has an increased chance of an infection because every single time we have to introduce a "foreign" object to her urinary tract, thus increasing the odds for an infection.

Every night at 7pm we have to give Bug a suppository. Doesn't sound like fun, does it? We give her the suppository, read her a story while she lays down for about 5 minutes and then she has to sit on the potty for 1 hour...EVERY. SINGLE. NIGHT. We bought her a potty seat with a padded top because that is a long time to sit. We also decided against having her sit on the real toilet for now because who wants to sit in the bathroom for an hour? So, we sit her on the potty, put on 2 cartoons, one after the other, and let her relax.

Recently she has shown interest in learning how to cath herself and to "help" with placing her suppository. She is proud of herself for learning these things. And she should be. These are BIG accomplishments for Lil Bug. She has no idea that talking about these kinds of things is taboo in the "real" world. She doesn't have to know. The minute she learns that talking about these things is a no-no or that people aren't comfortable discussing it with her, that is the minute she loses her innocence on the subject. That is the minute she becomes embarrassed and perhaps her self esteem lowers a bit (or a lot even). I don't want that to happen. So, yes, we totally plan on teaching her what is appropriate to discuss publicly and what is not ok. However, we are not there yet. For right now we are just enjoying our sweet, innocent, proud, confident daughter just the way she is. And, if her saying something too grown-up for you makes YOU feel uncomfortable...guess what? I don't care because that is your problem...not ours.


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Please know that this blog post is not really intended for everyone that reads this but I needed to vent in a safe place. I don't have a lot of people to talk to about these things and I figured it doesn't hurt to vent here with friends and strangers alike and perhaps you may just walk away with a tiny bit more understanding of what it is like to be my Lil Bug.