The moment a child is born, life is changed forever. We all know that. We’ve heard it over and over and if you have a child, you’ve experienced it. It doesn’t matter if it’s your first child or your fifth- life changes. With Brynlee, life changed in a lot of unexpected ways. Her entrance into this world not only changed my life, it flipped my life upside down. In an instant, the path that Justin and I had worked for hard to follow- the jobs, the bedroom layout for our children, our plans for the future- became full of obstacles and turned into a rocky hike. I had worked for almost 5 years turning this blog into my business and poof- I had to let it go. Instead of a work at home mom, I became a full-time work at home nurse-mom. Don’t get me wrong. It was an absolute blessing that I worked from home and that we were use to living off of mostly one income so it was no big deal for me to stay home with Brynlee. We would have been in a huge bind if I had a full-time outside of the home job because you can’t exactly leave the hospital with a trach/ tubie baby and put them in daycare.
Online journals have been home to me since I was a preteen. To truly know my heart, you have to read my words. Writing has always been my therapy. I have shared Brynlee’s journey on Facebook, but I have quit opening up here. Life is full of hard things right now- things that go well beyond having a child with a feeding tube and a trach. I’ve never shied away from sharing the hard things, but since Brynlee’s birth, I have not been quite as open. Several times my feelings were hurt when people suggested that I should just be happy with what I have. Most do not intentionally mean to come off as insensitive, but little comments here and there have caused me stop sharing the hard things. For instance when Brynlee’s reflux was so bad that she was losing weight and near lifeless, I made a comment about how feeding time sucks for everyone. Because it did. Pumping your boobs off then putting your milk into a bag to be pumped into your daughter’s stomach where it would not stay but instead would shoot out of her mouth and nose in projectile form sucked. And someone commented that she is just a little blessing and I need to be sure to count my blessings. That person didn’t mean to hurt my feelings, but that comment caused me guilt as if I should not complain about Brynlee’s issues simply because she is alive.
That said, I’m seriously sick of holding in all of the bad things. It’s wearing to share the good things, to celebrate the happy times, but to keep all of the difficult things to yourself. So I will no longer do that. If that makes me a complainer or ungrateful or whatever, I don’t care anymore. I need to write. I need to release the hard things. I need to scream out on paper when everything sucks.
So here it is:
My husband’s former boss? He sucks. His lack of compassion and insensitive attitude sucks. I’m not sure I have ever been so hurt by someone I’ve never met face-to-face but the way he treated my husband for something that was totally out of our control (a sick child) was despicable. I hope I never actually meet him. I also hope that one day I can forgive him for causing my family such stress when things were already at their worst.
Photo by KC Photography
Cigarettes? They suck. And if you smoke around me, I’m probably going to think you suck in that moment too. My dad has terminal lung cancer and people light up around me like it’s nothing. It’s not nothing- it’s like a punch in the face. It’s basically saying that you don’t mind that my dad is dying because it won’t happen to you. I am a former smoker. I know how hard it is to quit. I also know how hard is to be 25 years old with your best friend in the world battling a cancer that is not curable. So there. Take another puff and think of me. Not to mention that I have a child who breathes through a hole in her neck meaning whatever she breathes in goes directly to her lungs- there is no filter. Why would anyone smoke around me!?
Having a child who cannot eat or breathe normally, who cannot make sound, who will never nurse at the breast OR take a bottle? That all sucks too. That doesn’t mean I don’t love her. I love her with a fierceness that you will probably never understand. It means that it sucks to watch her hurt, to watch her work for things that should come naturally, to send her off for surgery after surgery. It’s better now that it was- no doubt, but the constant anxiety is the worst. Knowing all the she faces in the future, knowing there is always another surgery around the corner, another trach change- I am thankful for those things because they are the reason I have her, but I wish life wasn’t a fight for her.
Photo by KC Photography
It feels good. It feels good to get it out.
So I’m back and I’m going to write and I’m going to let it all go. Because if I don’t, I’m going to go crazy and I don’t have time for crazy.
I have 3 little ones who need their mama to be mostly sane and in order to be mostly sane, I have to let go of the negative. In order to let go, I have to get out it out. So if that makes me ungrateful or a whiny whatever, so be it because above all of that, I am a mama and they need the best of me.