Sometimes I choose to live in the comfort of our home pretending that the rest of the world has the same challenges that we face. When we are safely at home the stares, comments and reactions of others don't exist. Sometimes I feel completely philosophical about Caleigh's disabilities. I'm ready to talk about it at a moments notice. Sometimes I want to act like every kid in our neighborhood uses a wheelchair.
This weekend Caleigh spent the night with her Mimi & Pop. This is a rare occurrence and she was really excited about the sleepover. That night at home I missed her presence terribly. The next morning Eric went to work so I was alone in our quiet house. I slept in exactly 30 more minutes than our usual. I muddled around doing dishes and cleaning up the kitchen. I didn't turn the TV on. All was quiet. I briefly thought about going running but decided to eat breakfast instead. I sat on the couch for a mere two minutes and couldn't take the silence. My good ole brain started going. What on earth would I be without Caleigh? What if she was gone tomorrow? I wouldn't know what to do with my life. My thoughts of the "what ifs" are stirred by little Emerson and her mother Erica this week. Both have lived in a hospital, away from the rest of their family, for 4 years now with Emerson being on the brink of Heaven so many times I've lost count. I often think about Erica and her struggles. My heart feels for her on so many levels. The hope she holds for her daughter's survival is extraordinary. At the same time I wonder who will Erica be when Heaven calls on Emerson?
Often I wonder if parents, just like myself, lose their identities in the care of their children. I'm truly different since Caleigh's diagnosis during pregnancy, and it becomes more apparent all the time. Crowds are now difficult for me to handle. Social situations are awkward at best. My bubbly persona that once described me only peeks through every now and then. I was the girl that was always happy. Always smiling. I can still smile and laugh, but my motives are different. The results have changed. I'm definitely more cynical and snide about certain things. Where before I was naively positive. My empathy for others and their needs isn't what it should be; isn't what it once was. My rational is jaded. I'm not walking around crying all the time, but I definitely have a more serious nature about me now.
Coming off of a three week intensive physical therapy session you would think that we would be continuing those exercises and practicing constantly. Quite the contrary. There is always something else on the list to do. Something more important to move onto. Caleigh doesn't just not walk. There are a multitude of areas to work on; not just one. It's difficult to think about the equipment and the exercises that need to be worked on daily. When you break it down and do everything on that list there really is no room for driving to and fro, living and being a family. How much is too much? I think I've reached a plateau of sorts when it comes to the importance of what has become a rigorous schedule.
With the ever changing tasks at hand "finding myself" has taken a back seat. I find a day or two free and let my mind wonder to projects that I've always wanted to do. By the time I realize I want to implement them the chance is gone. An example being that I used to love photography and everything that encompassed it. Now photos are a way to document Caleigh's life. Very rewarding, but different from what that love previously was.
"I don't know how you do it?" is spoken to me weekly. I've realized that I do it because I just do. I put everything else on hold and just do what needs to be done. I whine on this blog occasionally, those close to me get to hear it as well and then I get back to what is important. Caleigh.
"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson
This weekend Caleigh spent the night with her Mimi & Pop. This is a rare occurrence and she was really excited about the sleepover. That night at home I missed her presence terribly. The next morning Eric went to work so I was alone in our quiet house. I slept in exactly 30 more minutes than our usual. I muddled around doing dishes and cleaning up the kitchen. I didn't turn the TV on. All was quiet. I briefly thought about going running but decided to eat breakfast instead. I sat on the couch for a mere two minutes and couldn't take the silence. My good ole brain started going. What on earth would I be without Caleigh? What if she was gone tomorrow? I wouldn't know what to do with my life. My thoughts of the "what ifs" are stirred by little Emerson and her mother Erica this week. Both have lived in a hospital, away from the rest of their family, for 4 years now with Emerson being on the brink of Heaven so many times I've lost count. I often think about Erica and her struggles. My heart feels for her on so many levels. The hope she holds for her daughter's survival is extraordinary. At the same time I wonder who will Erica be when Heaven calls on Emerson?
Often I wonder if parents, just like myself, lose their identities in the care of their children. I'm truly different since Caleigh's diagnosis during pregnancy, and it becomes more apparent all the time. Crowds are now difficult for me to handle. Social situations are awkward at best. My bubbly persona that once described me only peeks through every now and then. I was the girl that was always happy. Always smiling. I can still smile and laugh, but my motives are different. The results have changed. I'm definitely more cynical and snide about certain things. Where before I was naively positive. My empathy for others and their needs isn't what it should be; isn't what it once was. My rational is jaded. I'm not walking around crying all the time, but I definitely have a more serious nature about me now.
Coming off of a three week intensive physical therapy session you would think that we would be continuing those exercises and practicing constantly. Quite the contrary. There is always something else on the list to do. Something more important to move onto. Caleigh doesn't just not walk. There are a multitude of areas to work on; not just one. It's difficult to think about the equipment and the exercises that need to be worked on daily. When you break it down and do everything on that list there really is no room for driving to and fro, living and being a family. How much is too much? I think I've reached a plateau of sorts when it comes to the importance of what has become a rigorous schedule.
With the ever changing tasks at hand "finding myself" has taken a back seat. I find a day or two free and let my mind wonder to projects that I've always wanted to do. By the time I realize I want to implement them the chance is gone. An example being that I used to love photography and everything that encompassed it. Now photos are a way to document Caleigh's life. Very rewarding, but different from what that love previously was.
"I don't know how you do it?" is spoken to me weekly. I've realized that I do it because I just do. I put everything else on hold and just do what needs to be done. I whine on this blog occasionally, those close to me get to hear it as well and then I get back to what is important. Caleigh.
"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson
14 comments:
I can totally relate to everything you just said. I really think it's harder for parents that only have one child...that is medically fragile/special needs. You no longer have a link to the "normal" world. Your life is consumed by what most consider "abnormal". It's true. And you totally lose yourself. People say, "You need to take time for yourself. You HAVE to!!!" I would just like to know where that time is going to come from?!?! Seriously. I totally know where you're coming from. I've always been cynical...just now I have a reason to be.
.. this past week I've been trying to figure out what my 2 year old needs for services next year, OT, PT, Speech. And I find myself thinking well I could ask for a lot of therapy and maybe that's the way to go since he really needs it.. and then thinking what about playdates? and the playground? and .. hanging out in the backyard looking at the lighting bugs? It's a balance. and right now the scales are tipping in the lightning bugs favor.
You are doing the right thing. What is right for you, what is right for your family is always the way to go. And your heart is always there.
and one last thing, kids change us. we are forever changed.
ditto.
Thanks for the honesty Holly. I was just telling Curtis about an hour ago that I hate going to events and having everyone ask, "how's he doing?" It's asked in such a way that you'd never ask the same of a typical child. I know no one means harm, but I'm so over it. He is who he is. I appreciate the concern, but can we focus on something else???
That being said, I think it's time for a girl's night:-)
You push on so beautifully... you really do.
"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson
My favorite quote! I wear a bracelet, never take it off (except for MRI's!), that has that saying on it! Have worn it non stop for approximately 6 years now!
You are a strong woman, and I give you my applause for how you grab life and go, even if it doesn't show!
I completely relate to this...the old me is completely buried most of the time. But with years and years of looking after Smiley - and possibly my aspie boy as well - stretching ahead I do stuff that will get me out into the world again, even if it's letting my hair down with other special needs parents who understand. Oh and when I was doing an intensive programme for Smiley I advertised for volunteers in the local parish newsletter and had a rota of 30 coming to the house twice a day to help. I don't know if that is something that might be possible for you?
This post is so honest and moving. And, the photos of Caleigh help keep a smile on my face as I read it even though my stomach turns at what you say because I can so relate to it.
I did a similar post lately - on wondering. I think our lives can be so much more than therapy and progress towards goals and so our family is more of an out and about living life with therapy and goals as a side note. I think having two children is really a blessing for us - helps us keep it all in a bit better perspective.
But, when we go to parties and Emma wants to SO BADLY play with the other children and it means that we are in the thick of the children so she can be, well, that gets hard, too.
Here's to hoping more of the "old" you comes out and that the new you keeps things in balance. It's such a hard rope to walk and so easy to tip in one direction and not "right" yourself!
Thanks for your wonderful post! My special needs kiddo is 2 and the youngest of 6 children. Balancing the needs of my oldest 5 and my youngest leaves me drained and scattered. I often feel like I do no one justice at the end of long days.
I'd never trade my life for anyone else's, and I feel blessed by each of my 6 kiddos! But in quiet moments my thoughts are much akin yours...
You blog blesses me sooo much! I appreciate your sharing your and Caleigh's journey with us.
Jenna
I love this, I'm glad that I'm not alone. I don't think I could write my feelings on this subject any better if I did it myself! My son is two and a half, has CP, short gut, TPN dependent, vision impairments, & a few other dx.... I get "how do you do it?" almost everyday- I'm answer is always "how would I not do it?" it's my son, I'll do anything do him! :) Love your blog!!!
Snap.
I understand totally what you are saying - I used to be very bubbly. Now I have to force myself and sometimes I just can't. My social skills are awkward.
Great post.
Oh boy did this hit home. Sometime it is really hard not to let that sadness seep through.
The paragraph on your personal differences since your pregnancy spoke volumes to me. It mirrors almost EXACTLY how I feel, and I really don't think my husband, or anyone else gets it. It's something I don't necessarily *like*.....it just IS. And I've never realized that other people might feel the same way. Thank you for sharing and making me feel less alone and a little less "weird." =)
Love and hugs to you.
I'm pretty confident that i like the post-Charlie me more than the pre-Charlie me.
That said, I have to regularly remind myself that our lives can't be just about therapy. I watch other parents who do it all and I know that I can't. It was a hard pill for me to swallow, but I really think it's a balancing act--like you said, I can't do everything they suggest--there aren't enough hours in the day. I just do what I can and hope that it's enough.
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