April has brought not only showers of rain, but showers of hard times as well.  My son got very sick again the last of March and continued into april.  We spent the first 3 or 4 days of April in LeBonheur in Memphis, another day in our local hospital, and then 8 days at Nationwide Children's Hospital in Ohio.  Not one of the doctors we have seen are able to tell us what is wrong with him.  Up until now, we thought he had Intracranial Hypertension. That has been called into serious doubt.  Up until now, I could tell people, "At least he doesn't have anything that will take his life."  It has crossed my mind, that although whatever illness he has is not likely to kill him, we don't know that for certain anymore, and the uncertainty is heartbreaking. 

I feel like the rug has been pulled out from beneath me, I am wobbly and confused.  Making the smallest decisions can be difficult and tend to take more thought than I care to give them.  I am overwhelmed by otherwise simple tasks.

I have looked over the house and declared on more than one occasion it was a disaster and needed to be cleaned.  I have found that the state of my home is a pretty direct reflection of my state of mind. It seems to big of a task to take on, so I am doing things slow and trying to be easy on myself and my family.  Yesterday, I went to the grocery store and a friend came to visit in the evening. She brought her two youngest kids with her. It was a fabulous distraction. Tonight, we had pizza and I straightened my daughters' hair with a flat iron. 

Maybe tomorrow I will fold the clean laundry or go get my youngest the birthday present we did not get around to getting for.

Tomorrow is the first day of May.  I am lifting my glass to it with this thought, "Bring on the May flowers."

I had to take my son to Columbus, Ohio, to see a neurologist who specializes in his condition.  It is a full eight hour drive on its own, and when you add a five year old on some serious diuretics and a mommy who has a  bladder that acts like a five year old on diuretics to the mix, you take 10 hours to get there. 

I am generally the whiny one who thinks that going through a drive through will be easier and faster rather than packing sandwiches for everyone whenever we go anywhere.  I like a sandwich okay, but cold slices of meat on bread is not my idea of a meal. 

My wonderful cousin made the drive with me.  She wanted to make sure I did not turn into a hysterical, slobbery mess in front of the doctor got all my questions answered.  An added benefit of bringing her along for the ride is that she travels ALL. THE. TIME.  As in she will say she is going to go running with you tomorrow, but then she won't show up because she will actually be in Tim-buck-to, which she won't think about when she makes the offer, even though she is due to leave as soon as she gets back home.....

Anyway, she knows how to eat cheap on the road. Well, not only eat cheap, but eat GOOD!  So, I am here to offer her wisdom mangled by mingled with my own.

• Do not premake the sandwiches.  Keep the bread seperately from the other fixins'.  This way the sandwiches will be fresh and the bread not soggy.
• Bring what you will eat.  If you love PB&J's then bring bread, peanut butter and jelly. 
• Package fresh fruits and veggies, ready to eat in zipper bags, in individual portions, so whoever wants it can just reach in the cooler and get it.
• Bring a cooler! 
• Bring bottled water or other clear drinks.  If the kids spill water it is generally not a big deal to anyone who did not get wet in the process.  (Drinks packaged in pouches or boxes are generally not a good idea because kids tend to squish the liquid out through the straw, trust me on this.)
• Do premake salads and wraps.  Package them as single servings in Ziploc bags.
• Only use brand name zipper bags.  The generic tend to leak.
• Bring plastic forks (for the salads), paper towels, a regular bath towel (for the serious messes), and a box of baby wipes. 
• Bring yogurt in the plastic tubes, string cheese, baggies of cheese crackers, graham crackers, and single serve bags of cookies for easy snacks.

Here is you a couple of ideas for some wraps.
Ceasar Salad Wraps
Tortillas, Flat Out Bread, or some other kind of wrap that you love
Red Pepper, seeded and cut into strips (optional, but I LOVE it!)
Cooked chicken, chopped
Romaine lettuce
Ceasar Salad dressing
Shredded parmesan cheese
salt and pepper

Spread some dressing on the wrap.  Top with some lettuce, chicken, pepper strips, parmesan cheese and some salt and pepper.  Do not overfill, go easy on the toppings, otherwise it will be hard to wrap. 
Fold the bottom of the wrap up over the ingredients about an inch or so.  Flip one side over the whole wrap and roll up while using your fingers to tuck in the sides as you go. 

Red Pepper Avocado Wraps
Red Pepper, seeded and cut into thin strips
Avocado
Lime juice
Red pepper hummus
Alfalfa sprouts
Baby Spinach
Turkey slices
salt and pepper
Wraps of some kind

Peel the avocado, half and slice it into thin slices. Dip the slices into lime juice.  Spread a nice layer of hummus on the wrap.  Top with avocado, red pepper slices, sprouts, spinach and turkey. Sprinkle on a little salt and pepper.  Again, go easy on the amount of toppings you use.  Wrap up and place in a ziploc bag. 

Now, a quick update on my son; The neuro is questioning the diagnosis of pseudotumor cerebri.  We are to take him off all his medication and see how he does. If he gets better, we will assume the PTC diagnosis was correct but it is gone now and the medicine was keeping him sick.  If he stays the same, we will be doing an arteriogram.  He has had some really good days as of late, so I am really hopeful. At any rate, we have found a wonderful doctor!!

1 package of rigatoni, penne rigate, or other smallish noodle
3 cans of crushed tomatoes
1/2 cup of water
1 tablespoon of italian seasoning
1 tsp of salt
1/2 tsp of pepper
1/2 tsp of onion powder
1/2 tsp of garlic powder
1 pound italian sausage, casings removed
1 package of italian & herb Philly cream cheese
2 to 3 cups of mozzerella cheese

Start heavily salted water boiling for noodles.
Meanwhile, pour tomatoes, water and seasonings in a pot with a lid.  Bring to a wild simmer.  Put a lid on the pot and let it go, just stir it occasionally.
Start browning your italian sausage.  (If you had the time, you could actually break it up and put it raw into the sauce and let it all cook together, but I did not have the time or the inclination last night.)
When the water for the pasta is at a full rolling boil, pour in the noodles.  Cook them for as long as the package says to, minus 1 minute.  :-D  Stir the pasta right after you put it in the pot and once or twice during cooking, but do not stir it everytime you look at the spoon or the pasta.  The last thing pasta needs is for you to be whacking at it with a spoon all the time.
Pour the cooked sausage into the sauce and drain the pasta.
Now that everything is cooked, it is time to assemble.
Get a 9x13 inch baking dish.  Put the pasta in the pan.  Spread the cream cheese over the pasta.  Sprinkle a cup or so of cheese over the cream cheese.  Pour the sauce over this.  Sprinkle on the rest of the mozzerella and put it in the oven.  Turn the oven on to 350.  It will cook as the oven heats up.  You are not making a cake so it doesn't matter if the oven is cold when you put it in there.  When the cheese is melted and starting to brown and the center of the dish is hot, it is done.  You could even put it in the microwave if you wanted to and had a big enough microwave. 
My family loved this!

I am sitting here at 1:30 in the morning at the children's hospital with my son.  Because my son can not sleep and therefore I can not sleep I had nothing else to do, I opened up the trusty laptop and decided to write a blog post. So here it is:  Ten Facts about Your Child and His Hospital Stay

1. The IV will always be placed in the most inconvenient spot. 
2. Your child will complain about being tired, yet refuse to sleep.
3. You will, at some point, decide sleep is for the weak. 
4. When the doctor makes his/her rounds, it will be after your child has finally "got snuggly" and is getting some serious shut eye. 
5. Because you decide to follow the advice of the well wishers, you will try to sleep when your child sleeps.  To do this comfortably, you will remove the most offensive undergarment you have on - the bra.  For whatever reason, this sends out an invitation to all the doctors, residents and med students, to come and visit your room.  If you are anything like me, this will cause you to hunch over to the point you resemble Quasimoto with his arms crossed.  Hospitals rooms are cold.
6. Hospitals sell burgers for the same price fine dining restaurants sell rack of lamb.  You will pay it, living off Mr. Discover, and cringing when you think about having to make small monthly minimum payments on lunch.
7. There is no such thing as regular meal times while you are a guest of the hospital.  For instance, I ate breakfast, lunch and supper at 9:30 last night. 
8. The food at the hospital is not the whole grains and  fresh food the USDA encourages.  My potato soup was made from instant potatoes, the sandwich was processed deli meat, with processed cheese on white bread.  It is like the hospital is saying they will get you in there one way or the other.  I do have to say though, the chipotle mayonaise was a hit with my taste buds, as were the Dibs ice cream and barbecue flavored Fritos!
9. A 5 year old on lasix will wet through any pull up that is on the market today.  *He will do right after he or you falls asleep, while you don't have a bra on, and when the doctor is due to stop by at any second.*
10. The fold out cot, bed, recliner, or couch in your room, will take a master's degree in engineering to figure out.  At one point of trying to figure out how to make it long enough to sleep on, you will just consider making a pallet on the floor.  You will decide against it though, because sleeping on the floor (with no bra) will broadcast the extra special super signal all over the hospital and nearby towns.  Everyone will visit you, including the hospital social worker.

I went swimsuit shopping with a friend yesterday.  I loaded my buggy with heaps of dresses, shirts, and one swimsuit, as if I was born to shop, and indeed even enjoyed the act of stripping to my undies in a  public closet with a full length mirror that, perhaps, could be concealing a secret video camera.  (It kinda says something when you don’t feel violated at the thought but just feel pity for the hypothetical person on the viewing end.)  I did this shopping with no liquor, wine, pill, or anything else to numb the senses.  At the risk of losing the 5 readers I actually have, I will even say, DO NOT try that yourself, I do not believe I will attempt it again.  Anyway, I found myself trying on clothes with one of my thin, petite friends and tried desperately not to compare my figure to hers and was pretended to be HAPPY that the dress that fit me like a too small glove, looked FABULOUS on her.

I tend to stay positive about the things that life offer.  At any given moment you could call me and when you ask how things are going, I am going to tell you that they are great.  My house may be on fire, I may have the kids locked in a closet (a joke, people) or the apocalypse could be happening, but darn it, things are going to be great sooner or later, right?!  Might as well start the ‘great’ now.  It is kinda like that whole ‘fake till you make it’ theory….

My son is sick, well, not sick exactly – he doesn’t have cancer or a fatal childhood illness or an ongoing infection that we can’t cure – and I am grateful for that. But, the knowledge that there is something wrong with him, is at times more than I can stand.  Last night he had the worst headache that he has since he got out of the hospital in November.  I got home from my swimsuit shopping and he was teary eyed because he had a headache and I wasn’t there.  I set aside the intense mommy guilt and sat down on the sofa, with him on my lap.  I patted his back and rubbed his head and neck and kissed his head, and told him I was sorry his head hurt and that he would feel better when he woke up.  Just one of many things I promise because I am praying that God will make good on it.  My son is catching on to this, however.  Not to long ago, he came and told me he had bad dreams, I explained bad dreams were not real and could not hurt him.  I told him that he could pray and ask Jesus to take his bad dreams away (Hey, it works for me!).  He came to me the next morning and told me very succinctly that it did not work.  Darn.  What can you next?  I told him to just keep praying and try to remember that the bad dreams are not real and they can not hurt him.  He got up this morning and he did not feel better upon waking.  He did feel better after being up for around an hour, but his head still hurts on and off. 

When he is symptom free, it is easy to think that there is nothing wrong, that a prescription isn’t the only thing keeping my baby boy active and ‘normal’.  It is easy to pretend that I don’t have all these feelings of, well – I don’t know if they have a name, that attempt to suffocate me at times. Then when he does have symptoms, and all of that threatens to come up to the surface of my day, I cope by pretending that I don’t question whether or not he will ever be better, I pretend that I am and he is strong enough to withstand it.  You could call me and I will not mention that I nearly sobbed when I ordered my mocha latte (extra shot of espresso please!).  I will tell you everything is fine and I will never mention to you that it isn’t, really, isn’t.  Not because I am being fake or disingenuous, but because that is the only way I can keep my sanity intact while questioning every parenting and life decision I ever make or have made.

If you are a “real” life friend, and you know me at all, you will know that I do NOT want you to call me, I do NOT want you to mention this blog post and I DO want to be left alone in this matter.  I want to stay in this cocoon of pretending that I am not so darn mad at the world that I can not see straight and everyday I question the God I believe in.  I want to pretend just for a second longer that I don’t feel guilty for this because I know of children that will not live past this year, maybe not even past this summer, and it seems that their moms and dads deserve these feelings more than I do because they would give their left arms for their child to have the illness mine does, rather than the life sucking illness their child has. 

So, there you go.  A snapshot of the “real” me.  It is not pretty, it is not funny, it just is.  I am me and I am flawed and faithless.  I am weak and in need of the God I question. 

I have clean hand towels. The bathroom is still organized. There is still a stock of toilet paper and hand soap. So what is the problem?

My dh has removed the flushing handle we all know and love, and has replaced it with a button. In the interest of lowering our monthly payment to the utility company water conservation , he has installed a flusher button that will do a half flush for ... ummmm ... number 1 (as designated by the etching of a single drop of water on the first part of the button, to a full flush for number 2 (as designated by the 2 drops of water on the bottom of the flusher button.

I am fully aware that the most simple machine in my home has become techno savvy and a potential embarrassment for all who dare sit upon the throne. Ahem...

Good news! I may have figured out how to post to the blog from my phone! Yay!