I have been thinking about identity recently. My identity. I have been entering into some new social situations that I would have felt completely comfortable in years ago. I now find myself averting eye contact and waiting for the escape. Small talk is not my friend. If the kids are with me, they become the visual expression of who I am. Because even though I know I can work to make things different, my identity has morphed into theirs. I am caretaker, therapist, nurse, insurance manager, chef, bathroom attendant, laundress, etc. I spend most of my time making sure they are well cared for and loved. I am realizing that I have been solely identifying myself as the mother of Waverly & Oliver who have Sanfilippo Syndrome. And while I love being their mother and caring for their every need, I have to cultivate me.

I am in the early stages of figuring out what this will look like. I have a very part time job as a patient representative on a board. It has been wildly fulfilling to finally have something that is totally and completely mine. However, I am mindful of the fact that I would not be able to have this position without the experience of parenting two children with a rare disease. I am going to delve into the world of a small group soon to get to know a few other women and do life together.

One of my fears is that when Waverly & Oliver pass away, I will not only have lost my children but also myself. I want to have things, no matter how small, to count on. People to stand beside me who know me. Opportunities to step back into the real world even if in short bursts. I have no idea what grieving the loss of both of my kids will look like. And I don't think there is any way to even partially prepare myself for it. Yet I want to do what I can to ensure that I am not gone along with them.


Kassie said…
Glad you are cultivating you. Not only will YOU benefit, but it will make you a better you for Matt, Wavey and Ollie!
dawn said…
I totally get this! I think when you're in a situation that commands a lot of your emotional resources it's easy to define yourself by that situation. Praying that you find opportunities that connect with the core of you.
Anonymous said…
I have reached out in the past as I follow your blog. While it is not the same I have lost my mom in the last few weeks and I had been all those roles you are. Take time to remember for sure that you are first their mom. I have been so busy caring for my mom I forgot how to just be with her and didn't realize till she was gone. We will all feel the loss of not having our kids around at one point although not like you will and not as soon . I remember when I first got married a couple that told me they do date night every week and really focus on them as couple because one day there kids will go their own way and they want to make sure they have a relationship that hadn't turned into only surviving because of the kids, this is important for all couples although I know we have trouble finding that time as I know you must as well. I too have trouble making me time but know just how Important I should make it. It's hard for all of us you especially to reach out if our comfort zones but I know the reward will show itself In the end. I think of you and your family often and pray that you will find comfort in the wonderfulness that your kids are and always will be
Anonymous said…
I'm getting puppies! Let's plan on regular walks together this fall! You'll have to show me the doggie owning ropes. nm
Heidi said…
As I have done life with my kids and my husband I have learned that I need to carve out space and time for me just to be me if I am going to best person I can be for my family. I did not know who I was or what I wanted because I was so caught up in caring for everyone else first. It hasn't been easy and it sometimes means sitting in discomfort for a bit. Sometimes it also means allowing others to sit in their discomfort as well. I have just learned to try to accept myself and others where they are and trust that I'm doing exactly what I need to do for myself in the moment.

You are doing your yourself AND your family a huge favor by creating something just for yourself. Get out there and be your awesome self!! :)
Rebecca A said…
I will never understand what your going through. I know as a homeschool Mom it's so easy to just put all my time and effort into homeschooling.

A few years ago I started taking a college class at the local Community College, it helped me tremendously to understand I was more than just a homeschool Mom.

I am very proud of you!!

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