What I Don't Need

I finally figured it out. I know what I need. What I have needed for a long time and will need for the future: A Guide to My Life. Ah, yes. That would be perfect. I know what you are thinking...."there is no such thing! There are no guides to life, you just live it as you can." You are wrong. There must be a guide; a guide that I do not have access to, but that so many other people have in their possession. I know this to be true becuase there are so many people that want to tell me what I should be doing, how I should be reacting to all of this, where I should be going, believing, working. Here are a few things that people have the guide for:
1)  I have people that tell me that Sophia should be sitting differently, that she shouldn't be in her Nap Nanny anymore because A)  she's outgrown it, B) it was recalled so it can't be safe, and C) its not good for her muscle tone. And I smile sheepishly, and say, "yes I know". And I say, "We are working on it, I'm sorry." But in truth? We are not working on it. We are not throwing it away or putting it up in the closet. We do not limit her time in the Nap Nanny and we don't intend to do so in the future either. And you know why? Because my daughter loves it. She loves the Nap Nanny. It cradles her just right, it cradles her in a way that my arms, her mommy's arms, cannot. And that is saying something. She loves it, she loves it, she loves it.
2) I should accept more help for Sophia and get out of the house more. Sure, that sounds great. I'd love to. Let me just crush all of her medications, labeling each one, and pack them in a bag. Let me get a few syringes together, put Miralax and a measuring cup in a bag, and throw in a box of formula. Let me add in cold packs because everything can spoil and choose two extension tubes for her button. I'll pack two extra outfits because she is just as likely to throw up or have a poop explosion as not. I'll throw a couple blankets in a bag too, because she changes temperature rapidly and because she has a hard time regulating temperature, her extremities stay cold. So for good measure, I'll pack her heating pad too. Two regular diapers and three overnight diapers should work just fine. Overnight diapers in case she starts to have a blow out, you'll want to put that kind on her because once she's had one blowout, you can expect two more in succession. Chapstick is needed because her lips stay super dry, a few pink sponges to wet her mouth, and an unopened container of diaper wipes. Her nap nanny must go to, for reasons mentioned above. Oh, and I'll bring Sophia too, since thats kinda the point. Now, I'll bring her to you, and watch your face as I begin to describe the process of delivering medications and feedings. I'll explain how the feeding extension tube works, how to lock and unlock her button. I'll go through a list of do's and don'ts, likes and dislikes. I'll answer your questions, of which there will be plenty. I'll show you how to mix the miralax and formula, water and meds. I'll describe her movements versus her seizures, show you were her seizure medications are located, and basically raise your anxiety level to high alert. I'll explain that should she code, you know, her heart stop beating... she does not have a DNR so tell the EMTs that she is full code; this will be their first question after you tell them she is a hospice patient. I'll give my girl a kiss and tell you that you will be just fine. By this time, I'll have about an hour before my scheduled time to return to pick her up. So, I'll run to the grocery, speed down the aisles, and rush back to your house to pick up all this crap and load it into my car. Oh, and I'll pick up Sophia too.
3) I should be working. I just can't have a life without work. I'll be too isolated from the world, I'll lose my intelligence, I won't stay up to date on life events and current topics. I'll be too sad by staying with Sophia each day, watching her deteriorate, seeing her decline. I'll go crazy. Okay, but let's say that I do work, I keep my job/go get a job. But you know what? YOU FIRST. I can hear you now, "excuse me, but I have a job!" Oh, okay. But I want you to have a job like I would have a job. So, tonight, stay up til midnight and set your alarm for 3am. Get up and give your daughter medication, change her diaper and hang out with her for an hour. Go back to bed and set your alarm for 6am. Get up, give your daughter medications, change her diaper, and hang out with her for about an hour. Go back to bed and set your alarm for 9am. Get up, give your daughter medications, change her diaper, and hang out with her for----- oh wait, you are now at work. Hmmm, okay. Well, switch shifts. Work 2nd shift....nope, your husband works that shift. Maybe just hire someone to take care of your daughter? No money, oh, okay. Thats quite a problem then, huh. No sleep, no money, no nursing care. But lets say for giggles that you did have nursing care. So now you can work (you still aren't sleeping but this is a minor issue). Your daughter has to go to the hospital so frequently, and gets sick so your spouse needs the extra support so frequently (pesky debilitating, terminal illness), that you no longer have any time at work: no vacation, sick, holiday. So every time you miss work, you don't get paid. Your bills still come and believe me, the medical bills are mounting so high you can swim in them. You want to actually spend time with your child? Like quality, "my daughter feels good today" time? No! You can't. Because you don't have any work time saved up, because you used it when she was in the hospital fighting for her life. So, when life as we know it ends, we won't be able to say, "I sure enjoyed that vacation we took to get away from it all", or "I'm so glad that we had those memories". But don't despair, you will be able to say "I still have this job and I am so glad that I was able to pay for my daughter's Life Flight to the hospital".
4) I should work on more therapy with my daughter. When she is awake, and in a good mood, I should fix that by applying pressure to her legs, arms, back, neck, feet, ankles. I need to use her awake times, not for cuddling, snuggling, and mother/daughter time....I should use it for therapy. So what if it means that we will never have "normal" memories of our time together. So what if I have to wipe tears from her eyes, drool from her mouth, and watch her face grimace from the stretching, pushing, pulling, straightening? Tell you what....each morning when your child wakes, put them in a position that is uncomfortable for them. Until they go to sleep. Then they can take a break. You can console yourself by repeating the mantra that "it is good for them". Good luck with that.

These are just four of many instructions in this little guide book that I wish I could get my hands on. If you see one lying around, please, send it my way! Until then, I'll just keep messing things up and doing things wrong. I'll keep thinking about putting my daughter first. I'll keep thinking about her happiness and comfort in this horribly painful life into which she was born, and doing my best to give her a good day. I'll keep thoughts about "terminal" and "fatal" and "end of life" out of my head and just think that I have a one year old girl that means more to me than anything or anybody in this entire world, that I have to make memories with her because I won't have her forever, because I will outlive her. I truly hope that no one has to experience this life that I am living because those that cast judgment, that think I should be doing something that I am not, that think I should be at work rather than spending an afternoon with my child, will certainly change their perspective should our roles ever come reversed. So, on second thought....if you see that guide book lying around....keep it as far away from me as possible.