Wow it's really out!

So my typical excuse that I've been too busy to blog is valid but not my primary reason this time. I guess I have just been scared to put it in writing. I had plenty of time while we were in the hospital undergoing a battery of tests and then just kind of hanging out being monitored but I restrained the urge to share in fear of not making it to the next step and then having to potentially share a failure. I felt good after they capped his trach the first night and monitored his sleep because I felt like breathing around the trach while capped was probably harder than breathing without he damn thing in the way (which would be the next test). So when we woke up after our first successful night and the team showed up to tell me it was coming out it finally hit me... This was really happening... This moment I have been living, breathing, fighting for the last 3 years for was here and we were finally the deserving recipients of an amazing life change. This was heavy.

All of the talk, tests, hopes, disappointments, new hopes, etc all lead up to this moment. It was pretty anticlimactic actually. We simply took it out like we do every two weeks when we change his trach except this time we replaced it with a cute little ole band aid. This invasive, terrifying wound they sliced into my baby's neck 3 years ago...and now an Elmo bandaid??? I wish it was just as easy to erase the post traumatic stress disorder, anxiety and other strain all of this caused in our lives but it kind of worked the opposite for the rest of us. To me, when Brody's trach came out it was like ripping off the bandaid on our lives instead. That huge one we had used to hide under. We allowed those little pieces of plastic in his body to manifest our own baggage and fears around the boys conditions and allowed them to be excuses to lose ourselves.

The relief I felt the second we walked in the house without his trach- I can't describe. There were times I felt imprisoned by it all and now I feel so free to really live again. Brody's response has been amazing too. Even though it's all he ever knew-I think he always knew that he didn't need it forever. He has had so much energy and no inhibitions about him and he is the kid we always knew was in there being concealed by his conditions. He is b-a-d!!! And we love every second of it. He loves being thrown around by his daddy who now can do so without worry about devices falling out or hurting him. He loves cartwheeling and wrestling with his brother. He loves sleeping without equipment and being able to ride in the car without a back seat escort. He has the freedom to be a kid without a nurse all over him restricting his every move.

By the way, he threw it in the trash can himself.

We have a long long battle with voice ahead of us... And feeding is still no walk in the park! But for now I'm just taking it all in. I feel like at 3.5 years old I can finally be their mommy and not their nurse or their therapist. I can take both of my kids out without an escort and be alone in my home with them and play and be silly or just snuggle without an audience or interruptions for meds and treatments. As elated as I am about this sometimes I also get sad about how much I missed out on while they were sick and in and out of the hospital while everyone else was having these normal experiences with their kids. We are making up for lost time though and every day is something new.

I am beyond lucky to have both of my kids alive and as well as they have ever been. I don't take a second for granted.

My blog has come to have quite the following. Knowing how many people tune in to hear updates and cheer us on has kept me going on some of the worst days. Without feeling that accountability to all of you I wouldn't have felt like I needed to write new entries and without this outlet to vent and document this process I would have lost it a long time ago. Thank you for your support and love.












































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