The Development of Independence

Originally posted on my Facebook page. Follow there for more mini posts. When our daughter was 2 and 3, she was really a breeze. Laid back, sweet tempered, I was so glad we got to skip out on the Terrible 2s and 3s. Umm...yeah, no. We didn’t get to skip them. Turns out her health …

Advertisement

Processing Power

Originally posted on my Facebook page. Follow there for other mini posts. For the last several years, I’ve beat myself up for being weak, for being pathetic, for being incapable of handling the things I used to. I look back to our daughter’s first four years and how much I was doing despite the lack …

You’re the CEO: Taking Charge of Your Special Needs Parenting Story

I mentioned in my Welcome to Your New Job post, that you are now the CEO of a small business known as: Your Kid. Maybe it’s Your Kid, Inc. or Your Kid Corp. Whatever. You’re the CEO. And I meant it. Yes, you’re also Mom (or maybe you’re Dad. I’m too tired to make this …

Her Story is Not My Story

Okay, so this has been one of the biggest struggles of coming back to write again. Evie’s story is NOT my story. It’s hers. And while, of course, her story has greatly impacted how my story has gone, it’s still not my story. When she was little, when she was struggling so badly, we wanted …

Disney World Wish Trip Tips

I wanted to compile a list of tips for those who are planning a Wish Trip to Disney World. These are either things we did and were happy we did or things we wish we had done.  One of my friends has a great tips post as well, so check out her advice. We found …

Hospital Life Tips and Tricks

Since July, we’ve been in the hospital something like 4ish months total. Ugh. But I’ve figured out a few things to make life a bit easier when you’re living in the hospital. Hopefully this helps someone else during their longer stays. These aren’t really in any particular order.  Except the first one. That one is …

The Means Cannot be the End

When Evie was first born and we initially thought she was a typical child, we had very specific goals for her: breathe through her mouth and nose, eat by mouth, hit milestones in a certain order and time frame, learn to talk, etc. When we had her diagnosis confirmed genetically, our goals shifted. Not smaller …

Just a Little Cold

That's a phrase we hear a lot. It's just a little cold. I've talked before about how regular old colds can affect Evie, but I thought I'd show you not just Evie, but also some of her CHARGE friends with just a cold. Only one person in our house is sick. The rest of us …

Trachiversary

I think most people would find it odd for us to celebrate the day Evie got her trach, but it was the first day we really met Evie.  June 9th, a Thursday was supposed to be Evie's surgery to place her gtube.  A few days before, the surgeon came in the room to take a …

Just Intensity

Usually in life we gauge experiences on a kind of scale system. The good versus the bad. The sorrow versus the joy. We determine if something was overall good or overall bad by which was experienced more. And typically the two balance one another out some. A very good experience is lessened some by the …