Tater’s still stable. There’s really no change to report but that’s a good thing. They tried a couple of things yesterday that seem to be helping him. His blood tests and x-rays look a little better today so hopefully he’s turned the corner on this.
And now for the novel. I realize I sometimes gloss over things in regards to Tater and the extent of what we go through on a day to day basis. The thing is, most of the stuff, while stressful, is pretty much second hand now. Tater turns blue. Okay. We have to deal with it and the stress that comes with it. Stressing about it all the time won’t make the situation go away and only makes it harder to deal. Not to say I’m not stressed all the time. I am. If you’ve seen me lately I must look older to you (c’mon, HAVE you seen the bags under my eyes?!). I don’t mean to downplay the seriousness of it all- it’s just that IT IS stressful. If I can remove myself from the stress of everything when telling other people about it then I find those people are able to process the information without reacting too crazy and making me even more stressed out. I don’t pretend to protect people from all this, but I guess I am practicing self-preservation by not always conveying how freaking hard it is sometimes. I am not being strong. I am simply functioning. In fact, a lot of the time I feel hopeless and when people say I’m so strong I feel like a fraud. I’m simply doing what I have to do. Everyone would do the same. You say you couldn’t but you would. You have no choice in matters like these.
So-Tater is sick and our lives kind of suck right now. But at least I have him and Toser and YB and we’re pretty darn happy in spite of everything. And I get a lot of perspective from other people’s stories and from my dear husband, YB (or Mr. Awesome as he has started referring to himself). It could be so much worse and this is what I’m grateful for:
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I speak the language. The family in the bed next to Tater’s is from another country and their child is just as sick, if not sicker than Tater. They’re just as confused and worried as we are and they don’t speak English. When a nurse comes in and doesn’t have an interpreter, the family really doesn’t have a way to know what’s going on. I’m sure they’ve picked up a few words here and there and they understand way more than they’re able to communicate but I see the poor mother standing over her child and I can’t imagine having to go through all this with Tater in a foreign country. It’s confusing enough for me and I know this language.
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I am legally my son’s mother. A blog I read is about a woman living in Central America with her husband and a daughter they are trying to bring home. She is in the process of finalizing her daughter’s adoption and is running into bureaucratic mess after bureaucratic mess. Legally she is only her child’s foster parent but emotionally, physically and financially she is this girl’s true mother. Can you imagine loving and caring for your child, but always thinking in the back of your mind that child could be taken away from you at any minute?
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I am dealing with only Tater being in the hospital. Another blog I keep up with is
Confessions of a CF Husband. This man’s wife and daughter are both in the hospital with pretty serious problems. His wife has Cystic Fibrosis and is waiting to be put on a double-lung transplant list. His daughter was born 15 weeks early and is in the NICU in the same hospital as his wife. I cannot even begin to imagine what he is dealing with emotionally because just having a child in the hospital is draining. If YB were in the hospital too, I would have to be sedated with the drugs they’re giving Tater.
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I have Tater. I met Michele on an online Clubfoot forum as she was preparing to have a child she knew would have multiple serious birth defects. She lives close by so we met for lunch a couple of times and she’s such a sweet, grounded person with a faith in God that truly could move mountains. She and her husband went to many specialists and eventually decided the best place for the baby to be born would be in Baltimore at Johns Hopkins. So they temporarily moved to Baltimore with their 17-month old son (who might rival my boys as being the cutest around) so they could give their new child the best care possible from birth. When she was 37 weeks pregnant, she went in for an ultrasound and they discovered the baby had passed away. She had gone to this appointment by herself and she had to wait for her husband to find a babysitter in a city they don’t live in until he could be with her. And then she had to go through a painful labor and delivery knowing her child would not be alive when she saw it. She had a little angel they named Bernadette. I went to Bernadette’s memorial service and it was gut-wrenching for me-I can’t even fathom what Michele was going through after all she had already been through. I’m living a life similar to that Michele envisioned living with the baby she no longer has. She would give anything to be in my shoes, at the hospital with a baby who is alive. And yet she still finds it in her huge heart to be concerned about Tater and us. Most people would understandably need to cut me out of their lives after all that. She simply cares (even though she might think I’m a heathen-jk Michele). :)
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I have my family. YB doesn’t have his parents and his sisters live out of state. He has some pretty close family friends and he says my family is his family but I know it isn’t the same. His sister, Leeda, and her boys are coming today to stay with Toser at our house and I know he’s breathing a sigh of relief that she’ll be here. He’s been having to deal with all of Tater’s stuff and worry about work and take care of Toser while I’ve been pulling myself in to a shell and not wanting to deal with anything but Tater and stay at the hospital. YB’s fielding phone calls and visitors and making sure I get sleep while he’s running ragged. All this while not having anyone to really talk to and fall apart in front of. He’s the best husband in the world and I don’t tell him how much I appreciate all he does enough (and henceforth YB shall be Mr. Awesome, because he really is awesome).
I bet you a million bucks these people would be embarrassed if you said they’re strong people. They’re all doing what they need to in order to make it through their life. They function and look around and see where they could have it so much worse and are grateful for their situation, as crappy and sad as it may be. So you see? I’m not strong and I’m always on the verge of breakdown (thanks for picking me up from that last one, JMcGee). I get through each day only because I have 2 sweet boys, a great husband, supportive friends and family and am able to see some kind of perspective.
