Most of yesterday was an emotional roller-coaster. I was mostly sad and frustrated, crying once or twice. I went to bed last night in a decent mood because I surpassed my original goal of raising $1500 with an unbelievably generous donation from a family friend.
This morning was a completely different story. I woke up feeling exhausted, both physically and emotionally. I was cranky too, lashing out at everything this morning, yelling at and throwing my clothes around the room because some of them don’t fit me correctly yet. I was also being bitchy to Tyler every time he tried to calm me down.
I think this explosion of sadness yesterday and anger this morning was a culmination of several things: frustration from Austin not eating much the last few days because of his antibiotics, the fact that he’s already on antibiotics for his lungs at 2 1/2 months old, anxiety over Austin’s appointment and chest X-ray today, and the fact I’ve been trying SO HARD to keep a brave face on these last few weeks.
My whole life, I considered crying a flaw, a weakness. I became very good at putting on a front that everything was okay, when in fact everything was not. I’ve gotten a little better at opening up about my worries and frustrations, but to this day, I still hate crying! I don’t know if that will ever change.
It’s kind of hard even admitting that, but the whole point of this blog is to try to be as brutally honest as possible to give people a real look into our lives with Austin’s CF. I also want to share all of my true thoughts and feelings so that other parents of newly diagnosed CFers will know that all their feelings are perfectly normal.
I’ve been lucky to have connected with other parents of CF children who have shared their stories and have told me that they felt exactly the same way I currently do. Their personal experience and advice has been absolutely priceless, because honestly, they are the only ones who truly know what we are currently going through because they have all been there.
Today Austin weighed 10 pounds 1 ounce. He is in the 0.9th percentile for weight. UGH. They want me to start waking him up in the middle of the night to *try* to make him eat, which sucks because he sleeps so well and this will teach him to wake up.
He also had his very first chest X-ray, which he did SO well for! Austin didn’t cry once and the whole process went by pretty quickly. His X-ray showed mucus and hyperinflation of the lungs due to the infection he is currently fighting off. We will be starting him on another nebulizer medication, Pulmozyme, early next week. Just another thing to add to our already long and complicated routine.