For those of you who have gone through losing a baby, or raising a kid with special/high needs, or, for that matter, raising a typical kid, have you ever found yourself just putting along, doing great, doing what you need to do to get your kid to school/therapy/doctor/surgery/playdate, secretly just thrilled with yourself for dealing with life so well? It almost gets to the point where you're patting yourself on the back, saying "look how well adjusted I am! I've taken all these lemons and I've made the best darn lemonade I've ever tasted!" There's a goal to work towards, and you're kicking a** and taking names, right?
Well, what happens when you meet that goal?
I found out first hand what happens to me. Since the new year, I've been thinking I was feeling better about Eli, feeling better about Seth and all of his issues. We were heading toward a surgery date and we had met every goal in an amazing way. Eli's birthday came, and I handled it great! We had fun, we thought about him, it was easy peasy. No crying. No freaking out. Seth's surgery came. We survived it. It sucked, blood came out of his ears and mouth and nose, but he got through it and he feels great. His surgery is over. Activation is Monday. We move on from the critical making the implants happen stage to the intensive therapy and mapping maintenance phase. While still critically important, there is not the same sense of urgency there was with getting the actual surgery done. We raised the money we needed and are blessed to have the money to cover Seth's surgery, if the hospital ever sends the freaking bill, which is another story.
All my goals have been met. Seth is poised to experience hearing in less than a week. I should be ebullient.
I am more depressed than I think I have been since Eli died.
It was like I was on autopilot for all of this time...do what we need to do. Seth survived being born, unlike Eli, but then he was very sick. In critical condition. My husband is, how do you say it...not good with stress. Neither are some others in my family. From the moment Seth was taken to the NICU, I found myself spinning everything, trying to find the silver lining. Looking back now, it shocks me to see how sick Seth actually was. He was in persistent pulmonary hypertension. He couldn't breathe on his own. His metabolic levels were all so out of whack they thought his liver was not functioning. He was sick. I never once let myself own that.
Then, he got better. Except, of course, he was deaf. That one threw everyone for a loop, and so I spun that, too. I threw everything I had into getting his everything sooner, faster, better than the norm. If the standard was aids by 2 months of age, I wanted them at one month. If the standard was speech therapy beginning at 6 months, I wanted it at three. I was advocating for Seth the way I never was able to for Eli, and it worked. He was aided at 6 weeks. Therapy began at 3 months. He thrived. He received implants at 8 months. He was diagnosed with hypotonia (low muscle tone) so we began therapy for that. I never stopped to think about any of it...just did what I needed to do to get Seth what he needed. In many cases, I had to push against the system. Sometimes just being nice didn't work, and I had to be a bitch.
It is only now, when we are coming out of the surgery stage and I am able to finally take a deep breath, that I realize I am falling apart. My life, my marriage, and my house are in shambles because I have been eating, drinking, and sleeping Seth and Seth's care. I miss Eli. Now that I don't feel like I am in emergency mode with Seth, Eli's loss is hitting me harder than ever, and as I talk to my husband, I realize we are speaking two very different languages. Like many people, we are stressed. At the end of our rope financially. He works to jobs, I am with the kids all day every day. It's not ideal, and of course we take it out on one another. We have dealt with Eli's loss so differently from each other that sometimes when he talks I have to shake my head, and try to remember how he was before Eli died. That he wasn't always so angry, so bitter. I understand it...I have lived it too, but I am so sad and feel so defeated that he can't find the joy that was there in Eli, too.
To be honest, my faith, keeping very busy, and Ava and Jace are the only things that kept me alive after Eli's death. Even so, I was not in a good place. I was convinced that I had singlehandedly caused his death. The guilt I felt and truthfully still feel is overwhelming. Now that I am not burning the candle at both ends, trying to get Seth what he needed, that is all crashing back down around me and I am struggling. I love God. I have been faithful. He is my redeemer and I seek to glorify him in everything I do. But can't enough be enough? Isn't losing a baby and having one with high needs enough? Why does my marriage have to be falling apart at my feet as well, in spite of my best efforts to honor it? Why do we have to be within a hairs breadth of losing everything we have every month? I know I am whining. I know I am. But how much does He want from me? I thought I had given it all to Him already, and now I feel like I'm being torn down to nothing.
I want to believe that He'll build me back up stronger than ever, but it is at this lowest point that it is so easy to let Satan in. I know I am whining. I know that it would be easier to delete all of this and write another post thanking God for testing and strengthening me, but it's important to me that everyone know that I struggle too. Having faith does not make me perfect, and I still question and rail against God in times like these. I know how blessed I am, but it is hard to feel it right now. I am under attack, in a very real and serious way, and I would really appreciate your prayers.
Friday Fellowship - Amanda Jones
1 day ago