James is officially 15 years old now, and I don’t know how it happened. How is James 15 years old already? I wish he would stop growing up so fast, but that’s the thing about time. As much as we may want to, we just can’t stop it or slow it down. It just keeps moving forward at a constant pace whether we like it or not. The days turn into weeks; the weeks become months; and the months turn into years. Before you know it, so much time has passed, and you wonder where it all went.

“Time flies over us, but leaves its shadow behind.”

– Nathaniel Hawthorne

I often find myself looking back at James’ life, especially around his birthdays. One memory that vividly sticks out in my mind is sitting at a table in a conference room outside the NICU about two weeks after he was born. Also sitting at the table were Stacy, her parents, my parents, one of James’ NICU nurses, a social worker, and several of the doctors that were treating James.

The doctors discussed all of the information that they had gathered about up to that point, from the tests that were run to discussions with us about the pregnancy.

• • The 2-vessel umbilical cord had nothing to do with his situation.
  • He had a blood clotting disorder called factor 5 Leiden.
  • The lack of movement when he was in the womb might mean that he wouldn’t be able to move on his own later on in life. We would have to wait and see.
  • Muscle tone abnormalities: hypertonic legs (tight) and hypotonic trunk (low).
  • An MRI showed damage on the white matter of the brain, the “wires”. The abnormalities are localized to certain areas of the brain, and they didn’t know what was affected by those abnormalities.
  • They sent blood to test for Leukodystrophy, which is a rare, but serious disability.
  • His chromosomes came back as normal.
  • Palliative care would come in to help us with the transition from NICU to home and with whatever we would need from the hospital.

There were a couple of big questions raised in that meeting that the doctors couldn’t answer: What would his quality of life be like, and what would his life expectancy be? They just didn’t know, but the reality was that his life would more than likely be much shorter than the rest of ours. Stacy and I vowed to give James the best possible life he could have.

For the past fifteen years, our lives have revolved around him. The feedings, the meds, the breathing treatments, the diaper changes, the doctor appointments, and the hospital stays. It’s been a lot of work, a lot of stress, and a lot of ups and downs. Sometimes I struggle with the fact that James is unable to do most of the things that other kids can do. Things like riding a bike or playing catch. He will be 16 next year, the age when many kids will be getting their first driver’s license. That’s another thing that he will never get to experience: the excitement and freedom of being able to hop in the car, roll the windows down, crank the stereo, and drive somewhere…or nowhere in particular.

I am still holding onto my dream of buying and modifying an older Mustang that James and I can cruise around in, but that dream has been put on hold indefinitely. We need to buy a new(er) wheelchair accessible van first, and because there is no possible way that we can pay cash for an $80,000 van, we’re going to need to finance some of it. In order to make the monthly loan payments affordable, we’re going to need to put as much money down on it as possible, which unfortunately means that we will be dipping heavily into James’ medical fund. Once we buy a new van, we will need to focus on building that medical fund back up, which is going to be a bit of a challenge with the additional expense of a car payment for the van. I can revisit the Mustang idea after his medical fund gets back up to a decent level.

Although James has significant mental and physical limitations that keep him from participating in many of the activities that other kids do, it hasn’t stopped him from becoming a rock star. Dictionary.com has two definitions for rock star:

1. A rock-‘n’-roll star or celebrity.
2. A star or celebrity in any field or profession, or anyone who is highly admired.

James falls under that second definition: “anyone who is highly admired”. He has over 13,000 followers on Facebook, and a bit of an entourage at school. When James’ one-on-one school nurse shared a picture with us of James rolling down the hallway with several students last fall, I thought the entourage was a one-time thing. It wasn’t. His nurse shared this video with us a few weeks ago:

You have no idea how happy this makes us. We were a bit worried about how the ‘normal’ kids would treat James when he started high school last year. Seeing pictures and videos of other students interacting with him and treating him with respect makes us feel really good.

For his birthday, he didn’t just get sung to once, but twice. His class sang to him as you can see in the video below:

He also got sung to by a larger group of students. There are two videos of this one that I will share. James’ nurse sent Stacy this two-minute video that is pretty grainy. You can see James starting at about twenty seconds into the video sitting in his wheelchair and wearing a yellow shirt.

There is a much shorter, but better-quality video on his class’s Instagram page:

 

View this post on Instagram

 

A post shared by SHSMCCLASS (@shsmcclass)

Like I said, he’s a rock star!

It may look like school is all play and no work, but I assure you he is working hard in school. No offense to any teachers who may be reading this, but reading a blog post about academic stuff would be pretty boring, wouldn’t it?

We think that for James, school is not so much about the academics as it is for the social interaction with other kids his age. Again, no offense to any teachers that may be reading this. I think that it’s good that James is introduced to various subjects, but the reality is that he won’t use any of it outside of school.

His therapies, however, provide him with tools that he can use in the real world. We don’t often get videos of his therapy sessions, but here is one that his nurse took about three weeks ago of James lifting his head:

When James was a baby, we worked really hard with him on lifting his head. He got really good at it, too Then the infantile spasms and epilepsy showed up and seemed to take this ability away from him. Me, Stacy, and his school therapists continued to work him on the head lifts, and he eventually regained this ability.

That just about sums up the highlights of James’ past several weeks of school, but there are a few pictures that I wasn’t able to squeeze in above. Hope you don’t mind if I just throw them in down here.

If you read James’ birthday party post, you may recall that Stacy bought her and I “Nacho Average Mom” and “Nacho Average Dad” shirts to go with the fiesta theme of the party. James’ one-on-one nurse at school has become more like family, so Stacy bought her a “Nacho Average Nurse” shirt.

Here’s his 10th grade school picture:

Friday the 13th was Hawaiian Day at school:

Is it just me, or does James remind you of Elton John in that pic? I won’t post a picture here because of copyright restrictions, but take a look at the first picture of Elton John in this RollingStone.com article.

Thank You Donors

Before I sign off on this post, we wanted to thank those of you that have purchased shirts for our van fundraiser. We still have a little way to go to have a big enough downpayment so that our monthly loan payments will be reasonable, but we’re getting there. We’re continuing to put money away every month, and with your help, we’ll get there quicker.

If you are interested in buying a shirt—or a sweatshirt or hoodie now that fall is coming—you can do so here. If you would rather make a monetary donation, you can do that here.