The next morning, I called for our next steps. Doctors offices are special. I think there should be a private line for those moments that you really need a little extra grace – when your child is in crisis and you call for an appointment because you need to be seen yesterday. Unfortunately, the person on the other end of the phone that day did not get the memo.
“Our first available appointment is in January.”
Are you freaking kidding me?!?!? This was not an option. I may not have the power to heal. I may not know the tests to run. I may have no knowledge of the body systems that are not operating up to their full potential, but I knew one thing. I am momma and you WILL help us.
I called the village. I called the pediatrician. I called family, co-workers and co-parents. If you answered my phone calls that day, you received the wrath of a mom on a mission. There was no way we could wait until January for a diagnosis. Her energy was gone. She was so fatigued that she could hardly keep her head up to function. She was so terrified for the symptoms to become fodder for public consumption at the high school, that leaving the house became a task of epic proportion. “What if?” became the measure by which all plans were made.
There were a few things we knew to do. We could meet with teachers. We could run blood work. We would make a plan for make up work. All of these seemed reasonable and normal. That’s what you do when your kid is sick, right? You keep pushing forward and asking for help and seeking experience from those that have gone before.
In moments like this, your village is confirmed. There is little time for extra phone calls and certainly no energy for small talk. Your days are consumed with survival. Literally, it starts with questions like can she make it to school this morning? Would it be better to try and go for 4th & 5th period so she can attend a lecture in chemistry? I know she cannot eat, but what about a smoothie? Would that help her keep some energy? Every. Little. Decision. It all matters. It is all significant. And when you spend your day making little and hard and important decisions, you have very little left for carpools and weekend events and dinners out and drama.
But the village that gets you. Oh, the village.
They are wise. They are honest. They are true. They don’t ask the same thing over and over. They show up with smiles and no demands. They say things like ‘please DON’T come to this’ or ‘let me do that.’ And on the day that the teacher that isn’t helpful sends a crappy email or the 5th doctor says they can’t see you for weeks, they wrap you in a Coke and take your youngest on adventures. All of these villagers are my angels.
But there comes a day. A day when the everything that was, is no longer. When you look at the unknown that is tomorrow and you realize that what we saw as next, just weeks ago, looks very different now. This day was real.
Because you think that the talent and creativity and brains and work ethic and determination of your fierce family unit will be able to power through whatever diagnosis may come. And sure, we are still standing, but we look a little different now. One of the hardest days came when the reality of “normal” shifted.
Unable to complete a full day of school for almost 2 weeks, we began to face the reality that 7 1/2 hour school days, participation in 2 varsity extracurricular activities and 2 AP classes did not allow for healing and rest. Just keeping doctor’s appointments and having tests run were preventing success in traditional school. While doctors had clearly said that she was not well enough to attend classes and they would gladly excuse them, the bottom line was that keeping up was not happening.
I was driving to Austin with a friend when Lucas received word from the school denying her homebound services and requesting to have access to her medical records to properly clarify the services that they could offer to accommodate her needs. That was the decision maker. We have a great public school system. We feel beyond fortunate to have great educators and leadership in our district. Our children have been challenged and have gained so much from their schools. They worked, until they did not.
No school can be expected to meet the needs of thousands of students. It is just not possible. And until that point, our kid’s needs were met. But on that day, I knew that the situation had changed and we needed another choice. So as a team, Hilbrich strong, we made the decision to change course. And I need to be really honest here. It was one of the toughest days. It was one of those days that as a mom you know that this is going to be a significant moment, one way or another. What had always been a place of success and giftedness had become a place of illness and stress. It was time to choose a different path. A path that felt lonely. A path that would be second and third and fourth guessed. But I knew we had to do it. So, we did. Together.