New Normal

I always cringe when I think about the name I chose for this blog...New to the Parkers. I was so naive at the time thinking what an adventure having a baby was going to be.  In my mind I only pictured the good kind of adventures. Taking our new baby to the zoo, to parks, hiking, on vacations...I pictured myself as a very active new mom apparently. To give my pre-baby self credit, it has been an adventure but filled with more trips to the hospital than anywhere else. 

As cringe-worthy as I find the name it continues to be fitting. We are definitely in new territory here. As I have been reading about life with a trach kid and talking to others who have experience with this, everyone's favorite phrase seems to be 'new normal'. As in, it's not so bad you just have to find your new normal. 

Leading up to and right after Jackson got his tracheostomy everyone we spoke to was so positive about it. "This is such a great thing!" "He can breathe!" "He has a safe airway!" "Life will be so much better now!" After fighting my initial urge to punch every one of them in the face, I tried to embrace the positive attitude. New normal here we come! I started dreaming of all the ways this could improve his life. We had always kept him in such a bubble to keep him healthy. Hand sanitizer and bleach wipes were our best friend. We avoided public play areas like the plague. But suddenly all my dreams of taking him to do fun things came rushing back. I was determined to make this up to him, as he lay in bed sedated for a week I made all sorts of promises to him to take him to do amazing, fun things. I was determined to make this tracheostomy a positive thing. The first day he got transferred out of the PICU to begin his rehab and our training, reality came crashing down on us and I was the one getting the punch in the face. And the gut. And the heart. He wouldn't be able to go to the grocery store let alone any of the fun places I had started dreaming of taking him to, to make up for this horrible thing that was happening to him. I had no idea just how fragile he was. It was not one of my strongest days as a mom. But I took my selfish moment, mourning the loss of the life we had before. And then forged ahead on our journey of finding our 'new normal'. Our first full day home from the hospital, Hunter and I toasted to finding our new normal and then promptly went to bed at 7pm because it turns out our new normal is exhausting. 

Three days later we were still exhausted but feeling pretty confident that yes we can do this. Our new normal isn't so bad. Then that night Jackson decannulated himself (pulled out his trach) in his sleep and Hunter and I had to resuscitate him. Turns out that trach training and CPR class they make you take is no joke so if you ever find yourself in one, pay attention! After that happened we had people say to us I don't know how you handled that, I don't know how to respond to that except to say you just do. You don't even think, you just act. 

Two weeks later Jackson started having problems with his breathing and they told us to change out the trach to see if that resolved the issue. We couldn't get the new trach back in and suddenly that 'safe airway' the doctors promised us was gone. I was holding it in my hands and I couldn't get it in. I was literally holding my son's life in my hands and I was failing him. This is what our new normal looks like. It did eventually go in, and we were able to resuscitate him, and he is safe now. But I feel myself changing as a mother. I have now watched Jackson go code blue twice in the NICU, three times in the PICU, and twice at home. And my heart is breaking and changing and this is not a new normal I know how to deal with. And I'll be honest it's not one I want to deal with. I want to run away from this. I want to hide from it. I want to turn back the clock and change things. I want to fast forward to a time when I dream this is all resolved. I want this to all go away. I want a different new normal. 

And that is where I am at today. That is the brutal, honest, ugly truth of our 'new normal'.  We try to be so positive if not just for our own sake to protect ourselves from the scary reality but for Jackson's sake. He deserves it. As much as it feels like this is happening to us, the truth is it's happening to him and we're just here to support him. So now that I've let out all the scary feelings that I've been holding inside, I can go back to being positive tomorrow.

And to end this super depressing post, I'll share one story about the lighter side of our new normal. There is a Norovirus outbreak in the PICU so now there is a security guard at the door asking everybody about their bowel movements. If that doesn't just make you cry-laugh about your 'new normal', I don't know what will.

So cheers to finding our new normal! Let's pray it continues to change and evolve past this. And I promise to be positive again tomorrow. 

I'll leave you with this picture too because Jackson hugs are the absolute best and make you feel like it's going to be all ok.