Today was our first appointment with the geneticist. We were to find out the results from the test for a metabolic disorder. From there, we really had no idea what they would do.
The appointment was set for 1:30, so we left a bit early to go and get the delicious Gus’ Hot Dogs to take to the park for a picnic. We had a great time at the park eating, laughing, and watching the trees blow in the wind. After teaching Asher about cleaning up after yourself at the park so the next family could enjoy their picnic, we headed off to the doctor in plenty of time.
Once we got to the doctors office, we settled in for the wait. Asher ran all over the waiting room giggling and doing his notorious “whale call”. It was ok because there was only one person in the waiting room to bother, and she didn’t seem to mind. 15 minutes pass…20 minutes pass…30 minutes pass… By this time, Steve was getting a bit irritated, “This is ridiculous!” We were taking our parental turns playing with Asher in the waiting room when I realized we had been in there for over an hour! Finally, after an hour and a half in the vacant waiting room, they called us back to a room. Steve and I figured out a little game to play with Asher while we waited another 20 minutes for someone to come into the room. The genetic counselor came in to get a history, and by this time, I was good and pissed off. I tried so hard to think through the red fumes in my mind.
Once she told us he did not have the genetic metabolic disorder (YIPPIE!), got our history, and left the room, we had to wait another 20 minutes on the doctor. Now, it seems, Asher may have a chromosomal disorder. We were going to have to go through another battery of blood test which would take a month to get back. Thankfully, though Steve was raging mad, too, he could understand what she was saying. I was so blooming ticked that I could hardly understand her thick accent.
After 2 and a half hours in this office, we never once received an apology for her extreme tardiness. Not only did we have this long wait with a tired child, but we still had to go to Children’s to get his blood drawn. It was already 5:00!
I have gotten to the point in this journey that I’m not terribly concerned about what is causing the issues with Asher. I just want to help him through whatever he needs during the day. I want to help him to learn how to communicate with us. I want to help him to be a stronger kid. I want him to find happiness in this sometimes frustrating world. I trust the doctors to do what they know best, and I will most definitely be a very involved parent in the decision making process. However, today, I realized that the “Why” is not as important as the “How”. How can we help him? If figuring out “why” will help him, so be it. If not, lets just do what we have to do to help him.
He is in speech, occupational, and physical therapy. He has wonderful therapists through early intervention who are incredible with him. He really does love them. Mommy appreciates that they are loving and instructive, and furthermore, on time.
The events of today would have tried even the sturdiest of wills. Though we are not medical doctors, we are people, too. We have professions, hobbies, friends, and families just like the doctors. We are worthy of a bit of respect. And, I can guarantee, Steve and I are much more concerned about the well being of our child than all of his doctors and therapists combined.
Maybe I should have waited until tomorrow to blog about this day. Maybe a good night’s rest would have tempered my rage over being disrespected. However, if you are a normal “people” like me, you a probably shouting a big, “A-MEN” to this blog. And, if you are a doctor, thank you for your years of learning to help us cure our meager bodies. Please remember though: we are people too, ya know?