It is So Much Work

I need to choose my words carefully.  I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools.  For children with special needs.  These … amazing resources.  They give life (literally) where life would not have survived.  They change lives. 

- In the literal sense… Alexander’s feeding pump has saved his life.  His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it.  You have no idea how hard that is to actually say. Because the reality is I hate that thing.  I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it.  Alexander didn’t use the pump regularly until last spring.  You can read that post HERE.  And…. then he just didn’t eat enough.  Went way down hill….. This past summer, there were days where he was not oral at all.  *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained.  I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve.  Sometimes older children are scary.  But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part.  To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child. 

Don’t get me wrong.  Alexander is the hardest worker I know.  He puts more energy into sitting up than I put into any activity.  And often I find it ** tactless ** when parents of children with special needs whine.  This is a little different.  It is not a whine.  It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.


In case you missed it … Alexander is eating now. And I mean eating like a champ.  He is almost 100% oral.  I say almost because he is probably just shy of his caloric mark.  Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach.  (In all honesty…. easy)  There are other things that go into it… but you basically figure out  the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy.  And now… It is a ton of work.  Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in.  Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter?  How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload?  How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea.  It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow.  It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

* The same respect, every piece of physical therapy equipment takes so much work.  Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating.  We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice.  It is labor intensive and … work.


It is really a labor of love.  I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son.  But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore.  So much work.

So next time you see a parent of a child with special needs.  Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it. 


Thanks Shell…. For letting me Pour My Heart Out.

I haven't had a Carb in a week and it makes me grumpy

I think I might be losing my mind.  I dream about bread. And cookies. And cake. And real Pepsi…. With all the fat and all the caffeine.  I hate to diet. It makes me grumpy and… well – it makes me grumpy. And if it doesn’t make me skinny ASAP – it’s going to make me grumpier!  So, I should have dieted right after I had the twins, but I didn’t.  Then I started to lose weight and guess what? I got pregnant with Alexander.  I’m a stress eater, so this year has not been kind to my waistline.  Anywhoo----I’m particularly grumpy right now at a person I’ve never even met.  Dan – I’m talkin’ to you.  You think you are so great with your 50 million viewers. And, yes, you’ve got me hooked with your great posts.  And, yes, I WANT to have a blog as awesome as yours. So, yes, - I DID read your other blog.  Several times.  In fact, if you see all the traffic from my blog coming up on your stats – it is probably actually me coming to check out your words of wisdom.  And – I know your last blog post was directly aimed at me.  I know you were telling me to spruce up my blog if I ever want to hit the big time.  So - I haven't posted this weekend and it is because of DAN.  I’ve been trying to teach myself html code.  This is about as effective as when my dad tried to teach me mechanical advantage. Because – seriously – it is so confusing. So here is the deal:

1. I’m going to try to write the code for my background myself.
2. If I lose my blog… I’ll be back. And – I will send you a personal message .. Dan.

But I still have some awesomeness in me. And it is in these pictures I snapped tonight.  My awesomeness is really 3 little squirts that are beyond words…..

 Yes, they look like newborn feet... but these are his 1 year old feet.  He still wears size NB shoes.

 Yes, it may look like a Medieval Tourture Machine... but his stander is still getting use.

Addison and I painted our toenails together tonight. SO fun! 

 Momma and Addison with our feet painted up!

 Bet you are glad you don't live in this house.  Or at least this playroom.

FYI... we did clean the house. And the playroom.  And I'm going to work on the blog.