Someone tore my heart out...

After 8 weeks of missing storytime due to medical issues, today Benji and I finally made it to the library. Unfortunately, we were met with a sign that storytime was cancelled for the week due to spring break. Who knew that 3 and 4 year olds need a break from a 45 minute, once a week session? Hmmm.

So in order for it not to be a complete loss, Benji and I sat down to read some books.

Correction, in a whole library full of germy books, the kid only wanted to read one book. "Diapers are not forever" jumped out and grabbed his interest. You've got to be freakin kidding me! Any book but a potty training for a kid not structurally capable of being continent.

So as we, scratch that, I struggled through the book while trying to creatively insert the names of his cousins (Gavin and Tanner) into the text, Benji called my bluff. He started inserting his name into sentences like "Benji pee like daddy" and "Benji wear big boy undies."

Sigh.......

Why doesn't someone just come rip my hear out? It would be far less painful.

After this I am irrationally angry at the people who keep this buttless wonder alive. No, it's not their fault that he was born with no behind and no ability to pee. But where are they when my kid is compelled to read books about getting out of diapers? Like I said, it's irrational.

In true little boy fashion, we had to read the book three times. Then we played in a funny tent thing that actually sort of terrified him. Of course, the trip wouldn't have been complete without one last reading of the book once I declared that it was time to leave. Another mom sitting nearby commented that she wished her three year old was so interested in potty training. I may have growled at her...

After this trip to the library that started out so innnocently, I have determined that:

1. I fully expect Benji's urologist and surgeon to magically appear at my side whenever situations that will make my child feel like he is a lesser person occur. It would be great if they brought our favorite ostomy nurse with them too.

2. I fully believe in censorship.

3. I am devising a plan to return to the library alone and check this book out and discard it in the nearest dumpster. $17 in library fines would be much easier on the soul.

Irrational, eh?

just pics....

A plea for a a friend

During our past three years, which we prefer to call "our adventures in trying to NOT kill Benjamin", we have met more families of children with medical needs than I care to admit. Really....I would need more fingers to list them all. Not just the other VACTERL kids either, but kids with serious organ failure, undiagnosed genetic disorders, kids receiving pallative care, and kids who will not live to see 2011.

If you are one of those people who is naive enough to have a daily post on Facebook about how perfectly healthy your children are, how awesome your life is, how much God loves you or how shiny the new SUV is in your garage, I hate to be the horror show that ruins it all,

BUT,

there is a whole lot of suffering in this world and lots of that suffering occurs in very cute little children, under the age of 18. Who never did anything wrong. Who never have known a life without pain and illness. Please read on...

If you are one of those of people (like our relatives) who know there are children out there, like Benjamin, who are missing organs, who spend most of their holidays (birthdays included) in the hospital, who are at the mercy of doctors who are either still trying to find a way to help them or are just waiting for the right moment to come along when they can help them, have lived in the horror movie with us, but may not feel there is anything you can do about it, please read on....

One of those very cute children, who is not much older than Benjamin. is Zachary. Zachary is five and in kidney failure. He started kindergarten this year, only to be too sick to keep going after a few weeks. (Those of you who are related to me can most likely read between the lines and know what I am thinking, yes that is my worst nightmare.) His family is looking for a new kidney. To clarify, his family is desperately looking for a new kidney for him. And, thousands of people who know him or his family are looking for a new kidney for him. Alot of the responsibility of finding a kidney falls on the family and word of mouth is the best way to do it.

Zachary's family is at the point where they are even looking for people to be part of a kidney swap, or paired exchange. Never heard of it? Well.....a scenario would be if kid A's aunt gave her kidney to kid B and kid B's aunt/neighbor/friend/altruistic stranger gave their kidney to kid A.

By the way, the Aunt Shelley of kid C (who is currently sitting on my lap reading Clifford for the 47th time) is the only person I know who is exempt from this post and that is only because she is busy making a human being from scratch. ;)

Due to a previous transplant from his father at the age of 11 months and all of the ensuing medical care, Zachary has a high number of antibodies in his body. Therefore, the people who have come forward have not been matches, but that does not mean that there is not a donor out there for him. It just means the right person has not yet been tested.

So...if you've ever thought of being a living donor, now is a great time to pursue testing. And in case you've already started to talk yourself out of it:

-No you do not need to be "young" (age limits are pretty generous, I must say),

-No, you don't need to live in Minnesota even though that is where Zachary lives,

-No you will not have medical bills from donating (no hospital costs are incurred by a donor),

-No, you do not need to "save" your second kidney in case you have one fail (if you have one fail- chances are they are both toast anyways- so no need to hoard your organs!)

-No, I can't take the time off from work. (sure you can- it's surgery and that is what medical leave is for!)

-Yes, you can not being growing a human being currently.

So, if you are that altruistic person who can not stand the thought of there being a five year old in this world who can not go back to kindergarten because he needs a new kidney, please go to Zachary's site and look at the instructions on pursuing testing for living organ donation.

www.help-zachary.com

Thunk, thunk, thunk.....

Glenn often jokes that someday Isaac will see his head go rolling by.

And the noise it will make will sound like

thunk,

thunk,

thunk....

on our hardwood floors.

Really, this child is hopelessly disorganized. He has no sense of time. His mind is always somewhere else. I pity the woman who marries him. He will never remember a birthday, Valentines day, or a a "we've been dating three months anniversary." Poor lady.

No worries though, he has always been like this.

As a baby he was erratic. I learned to pump breastmilk if he decided to not eat at regular two hour intervals, because in ten hours, when his toes were no longer interesting, and he decided he was hungry he would want about 18 ounces of milk.

As a toddler, he would color for hours and then wet his pants. Not because he was't toilet trained. He was just busy.

As a preschooler, he needed to be physically picked up and carried to the dinner table. We were all ready to eat and he was still insisting that he had just had breakfast. Yep, 10 hours ago.

At age 8, he loses everything.

Glasses.

Pants.

Shoes.

Braces.

MP3 Player.

And the list goes on and on.......

When he is in college I imagine calls home asking if we can replace textbooks because his roommate lost it/the dog ate it/beer was spilled on it, all while it is right under his couch.

So last night when he lost his pajamas for the third time this week, Glenn swore he heard something going

thunk,

thunk,

thunk....

Night Terrors may drive me to drink!

Some parents in this house sleep right through night terrors. Some do not.

I fall into the second category.

And don't get me wrong, I don't think we should both have to sit up for what seems like hours on end while our little man screams in agony over what is going on in his little brain, but really what is one to do at 5 AM while your kid howls like a banshee?

Well, call me a bad mom...but I have resorted to turning my ipod up very high, lying down in the bed with him, and dreaming of a tropical vacation. All this was interuppted when Isaac woke up shortly after, tears in his eyes, convinced that wolves were going to eat him. Then the dog, hearing that everyone was up for the day, decided it would be a good time to need to pee. Really? Why don't we just go get Will up too and we'll have a 5 AM party?

You would think we could have at least one kid who doesn't experience night terrors. Or nightmares about wolves. Or a dog who does not need to pee everytime a floor board creaks in our house.

So, at 8 AM when Glenn got up for work and I was STILL up, he asked how Benji did last night, and my head may have exploded,

Just call me Julia!

Since it's just Benj and I home alone while the big brothers are at school, the days are kind of long. I have taken to trying out new recipes while Benj plays with his Imaginext toys. While this blog entry is really going to be about cooking, let me sidetrack and say that Fisher Price has some issues. There is not a single female super hero in their collection of mini crime fighters and villans. Where is Cat Woman? Bat Girl? Get with it FP!

But back to cooking, while I am still far from being Julia Childs, I have been enjoying the Rachel Ray cookbooks. And of course the "lazy spoons" that perch on the side of pans.

Yesterday I traumatized my children though as they saw me put cornstarch in soup to thicken it. In our house, cornstarch is used soley to add carbs to Benji's formula. They saw me take the container right out of the cupboard where we keep Benji's meds and formula. I might as well have dumped half a can of amino acid based, vanilla scented enteral formula into the pan.

Isaac freaked out.

Will was less vocal but did declare that he was not eating dinner if I was making it with Benji's formula.

After a lengthy discussion on how formula has nutrients and cornstarch has carbs, they still didn't buy it. Isaac asked me why we couldn't just have soup out of a can. Uh, because it isn't dad making supper!

So, very little Wild Rice soup was eaten by the boys. Isaac picked out the chicken and peppers and left the soup. Will just left it all and declared he was not hungry. Glenn and I thought it was great though.

At 8PM when Will decided he needed chips, I said "no." I don't think any of my children have ever gone to bed without food before. But I told him "no", and offered an apple and milk instead. Apparently that was insulting to him in light of the fact that there were Doritos in the cupboard and off he sulkily went, mumbling about being soooo hungry. I felt bad for about half a second. Really though, it's not like he is the one who is Mr. Hypoglycemia. This morning he got up early and ate breakfast at home. I commented to him that he would have free time at school being he had already eaten. Oh no, he was planning on eating breakfast twice to make up for being so hungry last night.

So, lesson learned: when I go whip up some food that isn't from a can, I apparently need to time it better so that the children who can read don't see any of the ingredients added.

But before I do that, I need to contemplate an email to Fisher Price. When will Bat Girl be expected on the shelves of Toys R Us?

There will be no diploma in sight....

Yep.

Benjamin flunked out of feeding therapy.

After 6 months with this therapist he has made no progress. Before that he had done the same thing with the previous therapist that he had seen for a year. It isn't about the therapists. It isn't about Glenn or I. It's about the fact that Benjamin's spirit is totally committed to whatever type of therapy modality we throw at him. His body is not yet there.

Somedays, Glenn and I don't think it will ever be there. Mainly that's because we have been doing this for three years now. Everytime he has a medical crisis, we react, we make sure he is safe, we manage to somehow balance the hosptital stay and the shuffling of children/pets/bills/and caregiving that it entails. And each of those medical crises sets him back even further developmentally. He becomes more sensitive to sensory overstimulation, adds on more meds, and we have more and more unanswered questions.

Glenn and I knew this was going to happen. We have been talking about it for a few months now. Our stance has been that it makes no sense to stress Benji out over food when we struggle to get him to tolerate jtube feeds most days. We declined an offer to pursue a 2 week intensive inpatient feeding stay. We stressed over whether we would appear to be bad parents if we declined the service. When a colorectal doctor told us to do gtube feeds to "see how much he can tolerate", we blatantly refused. He's not the one who has to sit on the couch half the night with a child in severe abdominal pain from breastmilk- one of the most easily digestible foods. When Benjamin recently ran out of formula during yet another South Dakota blizzard we gave him regular infant formula for a day through his pump. Holy cow. There was a reason three years ago why this child need special formula and apparently that reason is even more pronounced now.

We want off this roller coaster before we go off the tracks, but not so much that we will risk his health and make hasty decisions.

None of this whole "sick all the time/always in the hospital" thing necessarily equates with VACTERL. We know other families with VACTERL children his age who have not been in the hospital for YEARS. Here, we are feeling a sense of accomplishment when he goes 8 days. Our personal record, 5 weeks, left us with a sense of real pride that we were taking really good care of him. That is, until it all came crashing down.

I remember a somewhat dorky gi doc at the U of MN gave us some analogy a couple of years ago about horses and zebras in the gi world. I don't know exactly how it went, so if anyone else reading this has heard it, please let me know. It went something along the lines of Benjamin being a "horse", just a run of the mill kid with more than his fair share of birth defects and missing parts, who was sick alot. He didn't meet the criteria for any nasty "zebra" sort of things because either there was no pattern to his illness, symptoms were too few, symptoms were too numerous, his vomit was the wrong color, and other various reasons. We walked away thankful that we had the horse, because as everyone knows, zebras are hard to domesticate. Whew! God threw us a bone there.

After three years we have decided that perhaps we are trying to ride a zebra and not a horse.

As I typed this I just realized that my use of bad anologies must stem from a need to make sense of what makes no sense. So as this little half horse/half zebra feeding therapy flunkee lays on my lap with his glasses falling off of his face and his feeding pump humming next to us, I don't know if I should be happy that it is this good for him or distressed that this may be as good as his life gets. I see a mental picture of him, completely naked, covered in tubes and lines, in the NICU with three complete strangers in attendance at his emergency baptism. Beautiful, huh? We never thought at that moment that we would still be doing this three years later.

He doesn't eat, he can't empty his own bladder, his intestines were not designed to ever work, needs a few thousand dollars per month of medical equipment and supplies, he gags alot, and on average is hospitalized anywhere between 2-20 days per month.

But......

He appreciates every small beautiful thing he sees, cries over caterpillars frozen to the cement, enthusiastically licks the dog back to return puppy kisses, cheats at MEMORY, plays hide and seek with a stuffed Diego doll, and wakes up every morning to loudly proclaim that he needs a kiss. Today he went up and hugged a complete stranger crying in the lobby of CCHS as she found out her infant needed one of those cranial remolding helmet/torture device. I wanted to do the same for the poor woman, but exercised restraint because we can't go around in life hugging complete strangers. Benjamin flung himself on her leg and said "it's okay, I cry too."

Is that such a bad life?