Little white lies...I think I tell them every day, I don't want too, but they slip out anyway. It starts with stuff like "Mom is Santa Claus real?"
And I hedge with "Santa Claus is what you believe."
And I thought maybe I should tell them the truth, and so I tried, I really did. When the Tooth Fairy missed them I tried to tell them, "You know there is no Tooth Fairy, it's just me and Dad." You know what I got in return?
I got laughter, "You're funny Mom, she'll be here tonight." And so she came that night and my wallet was a bit lighter the next morning. So me and the Tooth Fairy have had a discussion, no teeth can fall out during this furlough. Everyone seems in compliance so, so far so good.
And it's not that I think that Madison at least hasn't been clued in at school, I'm sure she has. She knows deep down that the things of magic and belief are not in fact real...I think. I mean she has an idea about the truth, she'll let slip that certain Christmas presents from Santa...she'll say they are from her parents. So she knows, but she won't admit it. So I guess she's telling me a little white lie back when she doesn't admit all she knows. Sydney? Who knows what that kid is thinking. She's so logical that I know she must have her doubts, but this is the kid that has a book on Faeries that she is certain is real research...so she may need more time.
And believe me, it's not that I haven't looked at Madison and even Sydney and been tempted to spill the beans, to let the words come tumbling out. I know that at some point the kids at school will tease them if we aren't careful...so I say a lot of things like: "It's what you believe and sometimes you have to believe in the idea of something..." Blah, blah, blah... I promise politics are not in my future.
But why do I hedge, why do I have such a problem? Part of me doesn't want to be the one to take the magic away. There is a large part of me that doesn't want to be responsible for the complete loss of the magic that comes with belief. And then there is part of me that hopes and prays that if they still believe in this kind of magic then they'll still believe me when I tell them that their brother is all right, or is going to be all right. I have this soul deep fear that if they stop believing in one then they'll stop believing in the other and I need them to believe. I need to believe.
With all the genetic testing and the research going on right now to do everything to stop Down syndrome, I think a part of me is searching for a way to save my son, to keep him from being the last generation of children to be born with Down syndrome. I don't want him to be alone and I don't want the research into how to improve his health and quality of life to end. It's really that simple. I want him to be okay, I want others to believe that he is okay as a child with an extra chromosome and worth the work and effort to keep researching into ways to make his life better - today and tomorrow...all of his tomorrows.
At the same time, I have a son who is vulnerable and fragile in his immune system. I can try to hide in the world of the positive for days on end, focus on all that is going right, I can mark the days on the calendar for all the ones that have him healthy. I can do that. But then he'll have a seizure and I have to look at my girls and they're asking me if their brother is going to die, and all I can do is say: "No, the paramedics are here, and we're taking him to the hospital. Everyone is going to do everything they can to keep him here. We'll get him through this." And inside I pray that I'm not lying and that there is not some reckoning coming with my name on it that I won't survive.
He is still having esophagus issues, it's effecting him in some negative ways. Things are burning, things there might be damaged...we're trying new medications. We think that that's what's going on but we aren't sure. We know he's retching more and where venting off the pressure in his gut would work before it isn't working so much now. So we believe that the pain in his esophagus is the issue - but the retching can unsew a fundoplication and I promise you, that makes you very nervous. And when the girls are staring at me, Madison with tears on her cheeks, Sydney with her hands wringing and tears in her eyes: both asking me if he's all right, I'm looking at them telling them: "He will be, just wait, we just have to calm this down and I think he will be." And the whole time I'm praying that we can calm it down this time. That this will be the last time, though I know it won't be. Even now, I hear him with this cough, this rattling that comes from fluid going down the wrong way, phlegm maybe getting caught...not sure. He doesn't quite know how to clear it out, but my Bradley is a fighter, and he'll keep fighting. He'll keep fighting and I'll keep right on beside him, pushing him forward, pushing him back towards the side of health and away from illness. I just hate to lose, and every time he gets sick it's a fight to bring him back; to win each little war. I can't live with anything less.
So I guess I don't lie to them as much as I thought, I guess it's more of a stretch of the truth. I ask them to suspend their disbelief and I try to make whatever I say something they can live with if I'm wrong. I always tell them we can only pray and hope and do all we can to keep Bradley okay. Sitting beside Sydney in her bed as she tells me she is afraid for Bradley, that he'll have another seizure and die, I hug her close and make a plan. I tell her how we have a video monitor (a new one that works now and is not water-logged), so Dad and I can see him. If the seizure happens, we can get there, and now we have a medication to stop it if it goes on too long...so we have a plan to make sure that Bradley is all right. That's all I can say, it's all I can do, and it's what she needs to know so she can sleep at night, it's what I need to know so I can sleep at night...and that's what I can live with.
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