Soul Searching

Sometimes I hate blogging because even though I'm not really behind on writing, there is still so much to write about and I have neither the time, energy or attention span to write it all. So, we'll just skip through to the most important parts.

Some happy news? Today is me and Dennis' 3rd year anniversary! Wow. 3 years. So much has happened in those years. Tons of good stuff, some not so good stuff, and some down right soul testing stuff. But we make it. As Dennis just said to me after our discussion when I had a mini-breakdown (to do with LB) "We'll make it through because that's what we do." Couldn't have said it better myself, husband.

Now to the nitty gritty. I could go into this whole schpeal about how our compounding pharmacy screwed us over last week and almost sent Lily to the ER, but I won't because it still makes me really angry. The point is that Lily is fine and the medicine is here. I am still really angry though because they made me question myself and the care that I provide for my daughter. It would be the equivalent of someone that doesn't know you or your situation, questioning you about your job  - if your job entails taking care of a human being. So, I'm angry about that. And I'm hurt because I now question myself every time I give her a dose of medication (is this the right medicine? the right dose?) And I know that I had done nothing wrong.
End of that.

And now onto some soul searching...Be prepared...

I like to think that I handle what life has dealt me.
This blog probably makes me seem like a basketcase but it's my outlet, my way to center my thoughts and my feelings and really, my mind is 100 times worse than this blog. I go from okay with SOD to super angry, to super depressed, to mildly interested, to a sobbing mess at least 10 times a day.
So maybe I handle SOD a little differently than you think you might.

The truth is. It's hard. I really do go from being really depressed about it, to being okay and then to being so angry at life and God and normal people with their normal babies and their normal problems. Oh man, do I ever get angry at you normal people. Sorry, but it's true. I bite my tongue and tell myself that these so-called-normal people have their own sets of problems and for them, those mountains are high enough and if I were in the their shoes I wouldn't be so jealous.
But I am.
I guess that's the ugly truth of it.
I am jealous of the ease of your days and the normalcy of your life. I am jealous that you see your pediatrician for baby well checks and maybe once or twice for a fever or cold. I am super jealous that you cry over vaccinations and declare that "it was horrible!" because your normal baby cried for a few seconds. I am overly jealous of your baby stuffing food into his/her mouth and chomping away happily why you disclaim that "this child will eat anything. I can't get her/him to stop!"

Well, That's not what my mind had planned to write about but lord is it ever the truth. It's a sad and ugly truth but it's how my mind thinks.

Lately I just feel like we don't belong anywhere. I can't tell anyone about my problems because no one understands. Yes, you can sympathize and read my blog and get a glimpse of this hell that we're in sometimes but you never really know. You can never really understand. And what am I even talking about here? I guess SOD in general. Food refusal, definitely.
I am on several SOD boards and even there I feel different. I feel like everyone else's problems are visual and I am so thankful that we don't have to deal too much with that but it seems like no one really has major endocrine problems. I know I don't know everyone on every board but it seems like there really aren't that many children with diabetes insipidus and that's are biggest hurdle.
And then the food refusal board (of two) that I am on no one has to deal with a child that has problems maintaining blood sugar levels. So while you are fine with letting your child get 2oz of milk and skip breakfast because "I just can't get him to eat" I can't do that. My child's blood sugar would crash and she'd have a seizure. And all I can think about lately is when she gets older, if she doesn't get over this refusal thing soon, I can see us at the playground trying to be normal and calling all the kids to eat lunch and some grumbling about wanting to play more, some running eagerly to eat and my child, my Lily Belle, saying "no no no" to anything put in front of her. She would have a huge tantrum and I'd have to be the bad guy and threaten her with her glucameter. "I'll have to prick you and take your blood if you don't eat" Because a threat of a seizure is far worse than being the bad mommy for two minutes.

*breathe*

I needed to dump all that out there. And I apologize if you came here to read something lighter. I'm just having a really hard time with the eating. And with SOD. And with life in general. Most days I feel fine and even somewhat normal despite how abnormal we are but then days like this happen, where there's 6 bites of purees throughout the whole day, a whiny, teething toddler (hello, normal!) and me questioning my sanity and strength.