To be perfectly honest I'm not exactly sure where this post is even going to go. My mind has been in a lot of different places right now and I am struggling to find peace right now. I keep going back and forth. Do I go back to school in the fall? Do I wait? Do I ever go back to school? Am I OK with being an LPN for the rest of my career? Is there a way I can honor Millie's legacy that doesn't involve going to school again? Will I be happy with myself and at peace if I decide it doesn't?
As it stands now for the most part I am a stay at home mom. I love it, but there is still so much difficulty. Now, before you go an tell me I'm blessed to be able to get paid to stay home with my kids, I know I am. But do any of you realize why that is? It's because Nora is so medically complex that if I didn't stay home to care for her most of the time, she would have to have around the clock nursing care, which really isn't feasible at this point. We are very grateful for the nurse we have now, but for the most part Nora's care is still primarily my responsibility. And for the most part I'm OK with that. But don't go and think it's easy. It isn't. There are many days I spend hours on the phone trying to make appointments, communicate with doctors and others involved in Nora's care. It's a 24/7 job that I do not get a break from. Even when our nurse is here to care for Nora, I am still the one who does all the communicating with doctors, ordering of supplies, regular housework, and let's not forget that I still have a toddler at home. Life is chaotic.
With all of this going on, my mental health is still a work in progress. I constantly feel inadequate. I feel like even though I'm trying like hell to make sure everyone has what they need, I am still failing. People keep telling me that "no one can do it all." and "you have to let some things go." Sure, that's easy enough to say, but try to live it for a few days. In addition to all of my anxiety, my autistic tendencies make me somewhat obsessive about cleaning. So if my house is in disarray, so am I. There are so many days I feel angry with myself, guilty because instead of playing with my daughters I am cleaning, or on the phone, or trying to do something for myself (like shower) for a few minutes. Sometimes I even feel like I want to hide like the dog does.
I'm not proud of any of this. I am admitting that I'm not perfect. And I know that I am not. I don't strive to be. What I do strive to be is the best wife, mom, and person I can be. It is so easy to get caught up in everything going on here, especially when we don't get out much. Every time we go somewhere it seems like Nora catches something. There are so many people who have said "well you need to....(insert whatever you like here...get away, go to church, etc.)" But let me tell you folks it isn't that easy. Nora is not an easy kid to leave. There aren't many who even feel comfortable taking care of her and there aren't many that I am comfortable leaving her with. Even when I leave her at the hospital sometimes I am scared. Some people can handle her care, but there really aren't many who can. I remember when she was in the hospital how I just couldn't wait to have her home. And I'm ecstatic we've had her home this long. I can assure you if we hadn't done everything we have to get where we are today, the story would be very different. We would be living in the hospital constantly. I have peace knowing that we made the very best decisions possible for Nora. They weren't made lightly and they were difficult. They still are. You can't just pretend that after the decision is made the hardship ends. It doesn't. It changes, but it continues.
I know that this story was written a long time ago. I know that God has His hand in all of this. I know that He is the reason we are where we are today, better than where we started. Without that assurance I can truly say we would not have been able to do this. I do not believe that it was His will that Nora is ill, or that Millie had to die, or that Lydia had seizures. I don't believe that's the way God works. What I do believe is that God allows joy despite the pain, allows us to keep going even when we don't think we can anymore. I can say that I feel I am a better person because of our family's struggles, at least, for the most part. What I am trying to avoid is allowing this struggle to harden my heart, to take away the simple joys I used to take for granted, to make this world a terrifying place.
I am working so hard on so many things. I am working on bringing some more joy to my life. I am working to make this life a beautiful one for my family. I am working to help other families going through similar journeys. Sometimes I worry that I am disappointing Millie, that I am forgetting the lessons she taught me in her short time on earth. At times it feels as if she was never here. But I know she was. Sometimes I long to hear someone say her name just so I can talk about her again. Sometimes I am afraid to talk about her, because I am afraid of making others uncomfortable. It's not that I want to bring attention to my grief or ask for sympathy. I don't want people to feel sorry for me. I want people to know that my daughter lived. She mattered. And I didn't stop loving her when she died. My love for her was only forced to change because her earthly presence is gone. Life has changed, and it will never again be the same.
While I haven't made the decisions I need to, I have a great many things to pray about. I have things that I need to think about carefully and weight out the pros and cons. It's not going to be easy no matter what I decide.
No comments:
Post a Comment