If all else fails, call your mom…

For as long as I can remember I have loved and believed in the quote,

“If God brings you to it, He will bring you through it.”

Sometimes however (ok, maybe all the time) I need my MOM to get me through it too. I called my mom and through my tears and with a shaky voice broke down and admitted that sometimes it is hard to be Jax’s mom.

Let’s go back to a routine dentist appointment for Maya and Jax.

Maya, well, she’s easy. Walks in on her own, excited actually. Doesn’t even need her mom; she’s the patient after all. Answers the questions, follows instructions for x-rays, gets her teeth cleaned and claims her prize with her golden coin at the end. No cavities. No problem.

Then there is Jax. Well, he is hard. He likes going to the dentist now. No more tears. Walks back on his own. His turn for his first set of x-rays. He is so big now. Follows all the instructions, asks cute questions, etc. I watch and wait. The worry growing stronger and stronger. I know it is coming. I’m sure they will see something. With all of the antibiotics, numerous other drugs and fluids he was given as a baby and then being on oxygen and other supports, he had a greater chance of having dental issues.

Then, it is confirmed. One cavity and others to watch. Instantly my heart breaks for him. I know this will likely mean a trip to the hospital but don’t want to admit it or even ask it. You see what should be and is routine for other kids, just will never be for Jax. I ask his dentist, “So with his heart condition what does this mean.” The response is, “Should be ok. We might have to do some antibiotics in advance. No big deal. If you just want to call his cardiologist then confirm with me, we’ll be good.”

For a moment, I sigh some relief. Only for a brief moment however, deep down I know his dentist has no idea what his heart condition truly is. So off I go to call the cardiologist. Leave my message and wait for the phone to ring.

“Cardiac monitoring. Jax is the type of kid that I want to have cardiac monitoring. I think he will do ok but if he were to get in trouble or his heart stop, I want him to be in a place that can be prepared to handle that and respond.”

Those words from the cardiologist feel like the weight of the world to a mom who would give anything for there to be a cure for this awful thing called hypertrophic cardiomyopathy. Most people have never heard of it, let alone know how to spell it. I’d like to be one of those people sometimes.

So for a couple of weeks the telephone game continues and our cardiologist calls the dentist then the dentist calls me. As suspected dentist says, “I am sorry, I really didn’t understand Jax’s condition. I am glad the cardiologist called and I am glad he was honest with me and let me know how we need to approach this.” Then with a softness in his voice, that of a dad, he says, “is it ok if I ask what the plan is for Jax in the next year or so.” I smile and say, “Yes, it’s ok. The plan is the same every day for the rest of his life until they find a cure. Take his medicine, monitor him and pray his heart doesn’t stop. There is no surgery to fix it and at this time no cure.”

It should just be simple. 1. Go to the office 2. Fill the cavity. 3. Go home.

Instead. 1. Go to the hospital. 2. Put my son “under”. 3. Go home.

Three steps that couldn’t be more different.

So, the next call is to my mom.

“Mom, I know God doesn’t give us more than we can handle and I know He picked us to be Jax’s parents for a reason but sometimes, mom, I just need to say how much this SUCKS! Do you know how hard it is to have a kid with a heart that could stop at anytime, especially one that doesn’t look sick. I try not to be crazy over this but mom, it is just too hard today.”

She listens. She says I know this is hard. She says I worry every day about him too. She lets me cry. She can’t fix this but she is there, always there.

I tell Mike when he gets home. “He has to be put under. He is going to be so scared.” Later Mike ask me, “do you think Jax’s doctor isn’t telling us everything about how bad it is?’ I look back and say, “I don’t think so, I just think it is what it is, a very serious heart condition and they don’t want to take any chances if something were to happen. But, we’ll ask again at our next appointment.”

Then we both stop talking about it. We don’t have to say more. We both hate that he has it. We would both give anything for a cure. Our eyes look at each other the same way they did at the hospital when they took him from us to go to NICU. We didn’t say anything then either. We just held each other and cried.

I knew that day when Jax was born that God would get Mike and I through it. I also knew I would need others along this journey. Thanks Mom for answering the phone, that’s exactly what I needed.

All my love,

Lezlie