As requested...and well deserved since you all listen to me complain about how tough things are...here is a "typical" day in the life of a disabled mother. Some things may be TMI...but I want you all to know who I am.
Steven wakes me around 6:30am. He carries me from the bed to the couch because as Carter grows, I feel more and more unstable holding him while in my chair. I have limited trunk control and sometimes feel like lifting his weight causes me to lean forward too much. So, depending on what time Carter ate last, Steven will prepare a "just in case" bottle and burp cloth, along with other necessities (phone, pacifier, seahorse, tv remote), and put Carter on the couch with me...I usually hold him on my Boppy. Its hard to pick him up from his lounger on the couch because of my balance issues. When he weighed 4 pounds, it was a piece of cake...now he is much bigger and harder to scoop up with one arm, since I need the other to stabilize myself. I also have limited fine motor movement, so my fingers don't work well. My fingers on my left hand hyperextend, while my right fingers are kind of closed. Steven leaves us for work at 7 and Carter and I are on our own until my nurse arrives at 8.
By law, my nurse is not allowed to touch Carter or anything that has to do with him. I will not comment on her level of involvement with him, but lets just say I'm pretty much on my own. She helps me a lot, but I help him. I am very thankful that she is my friend as well as my nurse. She picks me up when I get down on myself. She always tells me not to second guess the way I take care of Carter...that I do a great job. That means a lot coming from someone who sees it first hand.
My mom comes home from work at 9, but usually goes to bed right away because she just got done with a 12 hour shift. I hate waking her, but I am unable to change Carter's diapers because I can't close my hands to hold his feet up and wipe, so I need help with that.
I do all of Carter's feedings and have figured out how to maneuver him up on my shoulder to burp. That may not seem like a lot, but for me it was a huge feat that I was very proud of. In the meantime, if I need help with my own care (bathroom, shower, etc.) I have to wait until I can either put Carter down or my mom can take him. My needs often can't be met because I can't just put him down and pick him up as I want...I have to wait for help.
At 4:00, my nurse leaves and Steven arrives home. I continue to feed Carter and try to keep him occupied so Steven can relax or go on the computer. Evenings are much easier because he can relieve me if I need it or help with Carter if he needs something. If its bath night, Steven does that. This is very hard for me because I desperately want to be involved in things like that, but it is just not safe for me to be holding Carter while he is all slippery...my fingers don't work enough to know that I have a good grip on him.
We try to get to bed around 11pm. Steven carries me to bed and goes to put Carter in his crib...also something I long to do. I'd give anything to rock my baby to sleep, put him in his crib, and tip-toe out. Instead, I lay in bed and listen through the baby monitor as Steven tucks him in and kisses him good-night.
Steven is a pretty hard sleeper, so when Carter wakes at night, I wake him and he gets up to change and feed the baby. I usually lie awake until he comes back, then we fall back to sleep together. 6:30 rolls back around and we start all over.
I am not posting this for anyone to feel bad or sorry for me. I love my life and I am thankful for what I have...but the reality is that it can be tough. Some days are great and some days aren't. The bottom line is that no matter how bad it gets, it could always be worse. Most women in my situation believe they shouldn't be mothers and never get to experience what I do every day. God gave me the use of my arms...so I can hold and feed my baby. I can hug and kiss him all I want...and that is what being a mom is all about. I'm so blessed.
Steven wakes me around 6:30am. He carries me from the bed to the couch because as Carter grows, I feel more and more unstable holding him while in my chair. I have limited trunk control and sometimes feel like lifting his weight causes me to lean forward too much. So, depending on what time Carter ate last, Steven will prepare a "just in case" bottle and burp cloth, along with other necessities (phone, pacifier, seahorse, tv remote), and put Carter on the couch with me...I usually hold him on my Boppy. Its hard to pick him up from his lounger on the couch because of my balance issues. When he weighed 4 pounds, it was a piece of cake...now he is much bigger and harder to scoop up with one arm, since I need the other to stabilize myself. I also have limited fine motor movement, so my fingers don't work well. My fingers on my left hand hyperextend, while my right fingers are kind of closed. Steven leaves us for work at 7 and Carter and I are on our own until my nurse arrives at 8.
By law, my nurse is not allowed to touch Carter or anything that has to do with him. I will not comment on her level of involvement with him, but lets just say I'm pretty much on my own. She helps me a lot, but I help him. I am very thankful that she is my friend as well as my nurse. She picks me up when I get down on myself. She always tells me not to second guess the way I take care of Carter...that I do a great job. That means a lot coming from someone who sees it first hand.
My mom comes home from work at 9, but usually goes to bed right away because she just got done with a 12 hour shift. I hate waking her, but I am unable to change Carter's diapers because I can't close my hands to hold his feet up and wipe, so I need help with that.
I do all of Carter's feedings and have figured out how to maneuver him up on my shoulder to burp. That may not seem like a lot, but for me it was a huge feat that I was very proud of. In the meantime, if I need help with my own care (bathroom, shower, etc.) I have to wait until I can either put Carter down or my mom can take him. My needs often can't be met because I can't just put him down and pick him up as I want...I have to wait for help.
At 4:00, my nurse leaves and Steven arrives home. I continue to feed Carter and try to keep him occupied so Steven can relax or go on the computer. Evenings are much easier because he can relieve me if I need it or help with Carter if he needs something. If its bath night, Steven does that. This is very hard for me because I desperately want to be involved in things like that, but it is just not safe for me to be holding Carter while he is all slippery...my fingers don't work enough to know that I have a good grip on him.
We try to get to bed around 11pm. Steven carries me to bed and goes to put Carter in his crib...also something I long to do. I'd give anything to rock my baby to sleep, put him in his crib, and tip-toe out. Instead, I lay in bed and listen through the baby monitor as Steven tucks him in and kisses him good-night.
Steven is a pretty hard sleeper, so when Carter wakes at night, I wake him and he gets up to change and feed the baby. I usually lie awake until he comes back, then we fall back to sleep together. 6:30 rolls back around and we start all over.
I am not posting this for anyone to feel bad or sorry for me. I love my life and I am thankful for what I have...but the reality is that it can be tough. Some days are great and some days aren't. The bottom line is that no matter how bad it gets, it could always be worse. Most women in my situation believe they shouldn't be mothers and never get to experience what I do every day. God gave me the use of my arms...so I can hold and feed my baby. I can hug and kiss him all I want...and that is what being a mom is all about. I'm so blessed.
10 comments:
Wow, I have always been in awe of you and your determination. I now have more and more admiration for you. I think you are an AWESOME mommy!!! And yes, the kisses and love are much much more important!!!!
I don't know if this will work or not, but I saw a baby bath seat that you might be able to use to bathe Carter. He might have to get a little older and less floppy first, of course. Here's the link: http://tykecoons.com/2008/04/04/product-review-safety-first-baby-bath-seat/
You are a kick ass mom and I truly admire you.
You are amazing! Motherhood isn't for sissies and your extra challenges make it even tougher. It sounds like you are doing a great job and raising the bar for disabled women who may be selling themselves short on what "normal" things they think they can or can't do! You are an inspiration!
Having work with SCI patients I have seen how tough ADLs can be. God Bless you and Steve and may you always have strength to get through your days!!
Carter is very lucky!!
I am so thankful you wrote this post as I knw many of us have wonder just how you manage to get things done. I know I have.
All I have to say is, you are one amazing woman. God knew what he was doing. I know I could not do what you do. I would have been defeated loooooong ago. But you have triumphed.
Carter will have the very best role model of a woman and mother in you better then any of us in my opinion.
I truly have so much respect for you and Steven and how you have chosen to raise Carter. I am a better person and parent just reading your daily trials of parenting with him.
Tahnk you for opening up your lives to us. it is an honour.
Candi: I am speechless. You are an amazing pillar of strength! Much love and many hugs! Jamie
Thank you for continuously sharing your journey with us. I am in awe of you and what an amazing mother you are!
Thank you so much for sharing this post with us. Carter is a lucky little boy! : )
I'm inspired by your strength and simplicity.
.... from a recent Dad...
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