Minus Sugar Coating

I read a blog post earlier today that just hit home. This mom writes her blog daily, most days you see many post pop up (she has a blog and a Facebook page for her blog). All her post are real. She doesn't try to sugar coat her life with 2 autistic daughters. She is who she is no matter if you like her or not. That's everything I've always strived for with my blog. Keep it real and don't sugar coat it. Today's post was exactly about that. She called out another blog written by a perfect mom with perfect kids and their entire world was supposedly perfect. Well she called BS on it. It got me thinking. 

Admitedly I have sugar coated events in the past. I've claimed things such as a hospital stay being not that bad or Liam's condition being better than it was or even that I was handling it all better than I truely was. What's fair in that? If I sugar coat it not only am I lieing to myself but I'm not properly spreading awareness. 

I know I've done this in the past to try and keep myself strong and to just make it through the day but it was unfair to those out there trying to get true info on the day to day life of a child with CDH or chronic lung disease or failure to thrive or any one of his many other complex medical issues. 

The truth is everyday is hard. Some days harder than others. After awhile you adapt and your outlook on what's hard and what's not changes. One day your upset and freaking out because you have to give your child breathing treatments every 4 hours daily and some time passes and it seems so trivial that you don't even think about it you just do it because it's routine. Your routine (whatever it is) becomes your lifesaver in this stormy ocean. You get used to it and it seems like the storm calms when in all reality nothing changed but your outlook. When your routine has to be changed it feels like your back in that storm desperately gripping for that flotation device to have it just slip from your hands until finally your able to grab hold and adapt again just to loose grip yet again. 

That's what this life feels like. I've learned if you can't find the light or some semblance of Hope or something to be happy about you'll end up drowning in it. So yes there are times I'm trying to grasp onto Hope and happiness and it's just barely out of my hands. 

In the past I've wanted everything to be ok that I would make this all seem like it was no big deal. 

Example: having to put Liam's gtube back in when it fell out in public and I didn't have the tool. On the outside I was calm and my brain just reacted to do what had to be done. I freaked out a bit on the inside. But after having to do this for the hundredth millionth time it's just another day in our life. 

It's not easy having a child with complex medical issues. It doesn't get easier but you adapt to it so it seems like it gets easier. 

Plain in simple: THIS IS LIFE. It is what it is. 

Every mommy needs a survival kit to get through it all. Mine includes: coffee and tea to combat the exhaustion, concealer to cover up the dark circles under my eyes and something glittery because glitter or bling makes me happy. 

Iced coffee: a staple to any morning following a sleepless night 

My bling: top one is for our CDH journey. Has Liam's pic in it and a CDH awareness ribbon charm. Middle: says inspire and has a camera and Starbucks charm. I love my coffee and photography.  And the bottom and  for my grandma and dad. I started selling Lockets so of course I had to make myself a few! 

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