Wednesday, October 15, 2014

An Atypical, Angry Post

Hi, everyone! We have a bunch of updates about Max but those are going to have to wait for the next post because we feel compelled to write a different kind of post today.

As we've stated many, many times in this blog, Max has a suppressed immune system; this isn't news to anyone. It's why we've spent so much time on house arrest, it's why we use so much hand sanitizer, and it's why even though we get to move to Flagstaff, we're going to have to continue to be so careful during cold and flu season. We know there are people that think we're overprotective. But we received some information today that takes it to another level that makes us incredibly angry. There are people who have told the few who are going to be around Max to lie to us about their exposure to sick people. Even if they've been around someone sick, they were told to keep that information from us so they can be near Max.

I apologize for the language, but what the actual fuck is wrong with people?

I get that some people think we're exaggerating and that Max won't actually get sick or if he does, it's not a big deal. Having a suppressed immune system means that Max's body is not equipped to handle diseases the same way a typical kid can. He will NEVER have a normal immune system because it will ALWAYS have to be suppressed so his body doesn't reject his heart. Getting sick means at the minimum he could end up hospitalized. At the worst, he could die.

Let me reiterate that so we're all clear on what I'm saying: if our son is exposed to an illness because someone lies to us about their exposure, he could die.

The people who think we're exaggerating or being overprotective have no idea they're talking about because they weren't there. They weren't there during the second half of my pregnancy when Jon and I had to rely on Max's movement in my belly to reassure us his heart hadn't given out yet. They weren't there in the delivery room when our son was born and he was gray because his heart couldn't support his body. They weren't there the day of Max's transplant when we spent the day sitting across his hospital room from his tiny bed, watching his renal numbers fall, indicating kidney failure wasn't far away. They weren't there in the weeks following transplant when not one but BOTH of his lungs collapsed. They weren't there when his heart rate was over 200 beats per minute while my tiny son gripped my finger with his hand and cried with fear.

Above all, they weren't there the night the doctors wheeled our five-day-old son away to take him for his heart transplant and left Jon and me standing in an empty hospital room, crying with sobs that wracked both of our bodies. We hadn't even gotten to hold him yet and there was a very real possibility that we never would.

I'm crying as I write this because I'm so angry that some people have so little regard for our son's health that they could encourage anyone to lie to us about their exposure to sick people. I know that I haven't fully dealt with what we've experienced and it's contributed to my own issues that I haven't dealt with because I don't like to acknowledge them. Jon and I tend to whitewash some of our feelings because, in general, we really are positive people. But that doesn't mean we haven't been privately dealing with a lot. I spend a part of every single day afraid. Not just afraid--terrified. We talk now about the precautions and considerations we have to take when Max is able to be around more people and when he goes to school but there is the very real and crippling fear always in the back of my mind that he could die before any of that happens. While we are hopeful and optimistic that Max will live a very long and (relatively) healthy life, we also have to acknowledge that we don't know what will happen and that this could be our only time with him. When we consider that, we'll be damned if we are going to let Max's time get cut short by someone who thinks we're exaggerating or just overprotective.

Max has been incredibly blessed in this situation and we are so grateful for everything he's received, from the medical team to financial donations to the outpouring of love and prayers and more. But just because he's done well doesn't mean that we can relax our vigilance, especially in this first year after his transplant when we are just getting into cold and flu season. We have to live with certain restrictions which is why we wrote a post about our rules. On the bright side, we've been able to see who our true friends are in this situation, the ones who respect our precautions about Max and know that while we love them, things are different now and Max's health has to come first. But we've also seen who is willing to disregard our son's health because of what they want or because they think we're exaggerating the situation.

To those true friends, we want to thank you and let you know how much we love and appreciate you and your understanding. We have to keep Max away from people for now while he's so little and his transplant is still recent so that he'll still be around to get to know all of you later when he's older and stronger. We love you and we can't wait until we can introduce Max to all the people we love so that you can get to know each other.

To those who are willing to lie to us about their exposure to sick people or who just plain don't care about our rules: there is no place for you in Max's life or ours. Our son means everything to us and if someone has so little regard for his health and his life, we don't need them anywhere near us, literally or figuratively. We're not going to risk losing our son for you.

I know this is a much different post than what we usually do and for the most part, it's a very angry post. A lot of these feelings have been building for a while and what we heard today has pushed me over the edge. This post is even fairly restrained from what I'd like to say. We can't control everything but his doctors have told us that the main reason he's doing so well is because of the steps we've taken to protect him and limit his exposure. There is absolutely no way we're going to decrease our vigilance now and if we suspect someone isn't telling the truth about their exposure, we'll have to make the call ourselves and I think it's obvious what choice we'll make.

Our son is the most important thing in our lives and we have and will continue to sacrifice whatever we have to in order to keep him safe.

1 comment:

  1. I am furious that someone would be so ignorant. There is no room for them in yours or Max's life!