So there really is a such thing as 'Too much of a good thing'

Dealing with Loss

I used to hate kids.  Never really babies, I can't say I ever hated babies, but kids.  You know the ones aged ohhhh 12-25.  The ones who should know better but choose not to. The ones who just misbehave, and act like idiots, with no purpose driven lives.  I would see them at restaurants, or at stores, or at the movies acting ridiculous, and I would mutter to myself like an old fart how ignorant and misbehaved these children were.  Me all 10-15 years their senior. Seriously - I should have just sat myself in a rocker and grumbled the day away in these moments.

These past few years, however, I feel blessed to have been enlightened.  Maybe I haven't actually been enlightened, but I feel so much better about terrible kids now that that I have an abundance of ventures under my belt.  I think for once in my life, I'm going to TRY not to grumble.  I'm going to smile sweetly and say to myself, in time.

Let me explain.

Recently I was driving behind a car, speeding around with reckless abandon, and instantly my mom brain kicked in - thinking to myself how I would rip each of their eyeballs out if they caused an accident and my children were injured.  It was in these atrocious thoughts that I noticed his bumper sticker.  Loud and Proud it said "I love Crack Whores". That's right folks, and the driver was maybe all of 18 years old.  What kind of kid in their right mind puts this on their car?  The same kind that drove the way he did. 

Don't believe me?

I had to catch my thoughts, and I had a while to process them because I was stuck behind him for quite some drive. Immediately I associate this young man with all tweens, teens and 20 somethings who actafool.  (Act a fool. If you didnt' know, you can now use it mushed all together in one word.) You can spot them from a mile away, and if you're like me, you would have tried your best to avoid them at all cost so your blood pressure stayed in check. So what is it that makes them act the way they do?  It surely can't be parenting.  I can guess for some of the cases not having a good example is a root cause; but I too was one of these obnoxious kids at a point in my life (I'm not fronting), and my parents did a great job raising me.  So why do we go through these phases?  Why are all kids assholes at some point in their life?

Because they haven't had the time yet to experience the profound loss, struggle, love or reward as adults have.  To struggle through a pain or endeavour greater than the love you have for yourself, is, in the end a reward.  It's these kids and young adults who haven't yet had to experience such grief and hardship, or for sure they would be thankful each day for what they had, and would be focusing on calm and peace - instead of chaos and mischief.  I don't fault them for not having the life experience to understand they don't have to be assholes.  In fact, I'm glad they haven't.  I just wish that it took something other than pain, to make individuals better people. 

Think about it. Inevitably, it's always pain that turns us into something better.

Maggie

With teary eyes I have to tell you about our dog Maggie.  I had hoped to share more pictures but they are tucked in some far away box, in a freezing cold storage unit, and I didn't have the cahon'es to tackle getting them.  So for now, the most current picture will have to do :)

A little over week ago, I made the difficult decision to lay this sweet girl to rest. 

Last month we noticed her breath getting awfully stinky.  Not the typical I just ate frozen poop because I'm a dog stink - I'm talking about green fumes from the mouth ala Pepe Le Pu'. I knew she was due for her yearly dental cleaning, but I thought I had a few more weeks to put it off.  Fast forward a few more weeks and not only was her breathe more wretched by the day, I noticed a small bump on her lower jaw.  Thinking it was an abscess, I called immediately and had her dental appointment scheduled for the next week. 

The rest happened so fast, its almost a blurr.  After I dropped her off, the vet called and said it wasn't an abscess after all - it was a tumor.  Sitting on both sides of her teeth, through her jaw, she was unable to remove it.  Needing a biopsy to determine the kind of tumor it was, she gave me the news that she wasn't optimistic it was going to be benign, or that we would be able to remove it.  Maggie was started on antibiotics and pain meds.  The smell?  It was her flesh dying.  Ugh. There was nothing we could do about it. 

Just a few days later, the mass had doubled in size.  I received the call back that it was cancerous, and in order to remove it we would have had to remove half of her lower jaw bone.  Additionally, she would need radiation.  After all of that, she had 6-12 months to live.  In just a months time our beloved family dog went from happy and normal, to given a death sentence. 

How quickly things can change.

 

I made an appointment to end her misery, and thought I would spend the next week giving her cuddles, but I didn't work out that way.  I had been giving her as many pain pills as I could,but the meds didn't prevent the damage the tumor was doing to her mouth.  The size of a golf ball now, it was literally oozing, bleeding and bubbling.  I was wiping her mouth, trying to make her comfortable, all while knowing the end was in sight. 

Why was I putting her through this?  I was being selfish. I made a call and that night took her in.  Tears in my eyes driving there, tears in my eyes driving home.   She had been by my side for 11 years.  This 3 week old puppy I rescued from the shelter. I nursed her through not one, but both eyes being removed due to a genetic condition.  She "watched" me marry, and have children, and become a guardian over them. 

What a precious gift God has given me. But my, what a harsh reality that ALL THINGS CAN CHANGE.

Too much growth?

So for real guys.  I'm being honest now.  Did you ever think for one second when we started this journey 6 months ago we would have grown 6 inches and gained 10 lbs?  Because I surely didn't.  I had no concept that kind of growth was even humanly possible.  But it is. And we've done it.  Now happily sitting in the 25th % for height and the 50% for weight - Toby is a shining example of the amazing progress that's been made in health care.  He's been on a regimen of nightly shots, monthly hormone therapy, a special diet, and multiple medications to keep his systems in check.  But, what happens if it's too much of a good thing?  Can he grow too much?

Yes, I learned. He can.

When we started our medical mystery mission, Toby had many tests performed to figure out levels of hormones in his body.  I wont bore you with the specifics, but I'll tell you when it came to growth hormone and IGF1 (the hormone that is stimulated by growth hormone), he was barely producing anything.  Waaaaay off the charts low.  It was made glaringly obvious that he was deficient and that he needed the help of synthetic GH injection, most likely for the rest of his life.

Our treatment, as you can tell, as been tremendous!  At our appointment this week, our Endo was amazed at his response to the medication.  That said, Toby's bloodwork was taken again to make sure we were overdoing it.  Genetically Toby is right where he should be, so we haven't done anything wrong - but there are side effects of having TOO much IGF1. Really bad ones.

In young people, IGF1 stimulates bone growth and development of organs like the heart, liver and kidneys.  But as a child grows into adulthood, too high IGF levels increase opportunity for genetic mutations leading to cancer.  And once a cancer forms, IGF1 will promote its growth just like it does for normal cells. Studies have shown that people who grow tall because of higher than normal levels of IGF1 in childhood have a HIGH risk of developing cancer in adulthood.  Retaining a high level, beginning this young, is even a higher risk.

Add all of this info with the fact that new studies now link Lymphoma with patients with Celiac disease, and we have a variable volcano of horrible possibilities waiting to erupt.

My mind wanders recklessly.  Knowing the same treatment that is helping my son thrive, can also do so much harm, if not monitored properly. We'll lower his dose, and take more labs consistently to make sure we aren't creating a breeding ground for horrible things.  But again, I feel this grumble in the pit of my stomach, just as I was on such a big high.  Toby's levels came back almost DOUBLE what they should have been.  Sending my thoughts to the future.  To the young man I hope he becomes.  And to a son who has to put up with so much more because of treatment options we're giving him today.

Growth Hormone for Toby is NOT an option.  More than the fact that he wont grow, his organs wont develop, or his bones and muscles.  He can't maintain his blood sugar, and the core systems making his body function would be severely malnourished.  This I understand and have accepted.  I am not giving my son growth hormone to make him tall.  I am giving it to him so he can live. Over time, as we are watched and monitored, we will be smooth sailing on a yacht of normalcy.  Levels right in the middle, as we perfect his doses.  But until then, I'll always think about the future, and the bad things that could stem from our learning curves. And fear that I'll replay all that guilt that I've forgotten about all too quickly seeing him grow.  Teeter up. Teeter down.

We want with every fiber of our being for our children to have everything they want.  We want them to feel no pain, to want nothing, to need nothing.  But in real life, this just shields them from the emotion needed to give thanks.  It's a teeter totter.  This raising kids junk.  I don't want Toby to go through pain and confusion - but in time- he will learn how lucky he is to be alive.  To have sight.  To have growth. To be "normal". Things I've learned in the past 2.5 years of being a mother.  Feelings bigger than the love of myself, growing my relationship with God, my husband, and my family. Because the thought of losing my children is so profoundly tragic, I don't think I can live with my life not being thankful and positive I have them. One day yours, mine and every other child going through their asshole phase will have a breakthrough moment that will change them for the good.  All of us observers will just have to patiently wait in our rockers, with open arms, for that moment to happen.  I pray I remain focused on seeing the positive when I want so hard to respond to the negative.  Thank you God for all the gifts you have given me. 

Thank you for listening,
Lindsey