Some Days....

Some days my heart just breaks. Over and over again.

It breaks for my innocent little baby. This poor girl is teething, has granulation tissue around her G-Tube so it requires cleaning and steroids daily (which she does not find very pleasant), and now I take off her helmet to find a blister.

You know what is so aggravating about that? I just took her to the clinic yesterday for her helmet. She had developed a rash on her forehead that was there for over a week. You know what the guy (I don’t know what he’s considered, a doctor? Therapist? ) said to me? If something like this happens again, don’t wait so long to bring her in.

Wait. Hold up. You only work a day and a half a week at this clinic. I don’t know where he is the other days. I would have no problem bringing her to any other clinic (especially since we’re at Children’s Hospital usually once a week and there’s one right there!!) but I was not given that option. I was told bring her in at your next scheduled appointment.

You know what the worst feeling is? Not trusting the people who are taking care of your baby. Now, I have the upmost respect for everyone in the medical field, BUT there are SOME people I’ve come in contact with over the past 6 months that probably shouldn’t be in this field. (I’m not necessarily talking about this specific individual). Seriously though, I used to think doctors and nurses were these amazing people. I’d say about 80% of them are, but 20%--man—not so much. They’re human though, so you can never expect people to be perfect J

Some of these individuals are like family to us now. Specifically Arianna’s nurse and in home therapists. They are some of the most amazing women I’ve met. They get just as happy for her victories as we do, and just as upset when we hear some not so great news.  They fight for us. They fight for her. Those are the people that make all of this that much easier.

My life is nothing like I would have ever expected it to be. You hear these stories about how these things happen to everyone else, and think it can’t happen to me (actually I totally feel like I knew this was going to happen to me, but I’m also super paranoid). My life flipped upside down. I’ve lost a portion of who I am. I have become a better person in some ways. I’ve become a worse person in some ways. I just know that there are days where I think back and wonder how I even made it through.

Some of the hardest days I find myself smiling the most because I know if I don’t have on that smile, I’ll lose it. I will have a mental breakdown. Or down a bottle of wine. Either way, it’s not healthy. Some days I just want to be a mom. Not a nurse. Not a caregiver. Not someone who argues with doctor offices and insurance companies.


This little girl is so amazing. She’s my inspiration. My strength. I see her struggling during tummy time, but she keeps pushing through. I know she is going to do better than anyone expected. I know she’s going to continue to amaze me daily. She’s my little trooper J

So, that's it. I warned you some days are worse than others. And the result of a bad day is a complete ramble :)

I wish I could keep her this little forever <3

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