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Tuesday, July 3, 2012

Clearing something up.

After writing last week's post about getting respite hours, something has been nagging at me.

My words.

I feel like I need to clear something up. Nobody said anything to me about it but I feel like I came off a little judgy about nursing care and respite without meaning to. So here it feelings about the subject of outside help.

First, let me tell you my story. I know you already know, but I want to be completely honest and forthcoming about my thoughts on the matter. And everything I write on this blog is from my perspective, our family's experiences, and our walk in this world. So I might offend from time to time in getting that across.

Next, I want to say I know a lot of families, a lot of families, that use nursing care and respite and that's what has helped shape some of my opinions on the matter. Those families are families in our boat, just like us, walking the same path. I love and respect those families and watch in awe as some of those families pave the way for me.

When Christian was in the hospital, nurses took care of him around the clock. Never could I have imagined it would ever be necessary for him in the future. I was just trying to get through to the next day.

Learning to "take care" of my son again was a paradox for me. I always knew instinctively how to take care of my babies. So to have someone have to teach me how to take care of my son was almost an affront to my own instincts. But, yes, there were things I had to learn that involved tubes and suctioning and medical ports and therapies and all kinds of things that weren't exactly "instinctual" or very natural at all.

I'm not sure when it happened but at some point I realized that this is the way I would be parenting my child. Not taking care of a patient. Not rehabilitating a broken child. Not trying to make him better. Although, all of those things were, in deed, involved. This was the way I was to parent my child. It would look different in comparison to parenting my other children. But he was still to be my baby that needed loving and caring and mommying. So I took the reigns with ferocity and vowed that nobody was going to have to teach me anything about my son. I didn't say it out loud or anything, but it was implied.

The prospect of introducing a nurse or respite care provider into the fold honestly stresses me out like mini heart attack style. I've never applied for nursing. There was a short time in the beginning where there was a mix up stating we were required to have nursing in order to go home. (Pshhhh!) That was soon remedies and we never looked back.

Fast forward three years and it still causes me stress. Our house is small. It's just enough for us and the thought of adding one more person (who I barely know) to hang around and take care of my child in our small space is mini heart attack inducing alone.

I've also heard horror stories. I've heard good stories about wonderful nurses, as well. But those aren't the ones we remember, right? Those stories alone are enough to make me never, ever want to mention the subject of in home nursing again. No, thank you.

I also have a huge problem with having to explain ourselves to anyone. I don't want to have to explain what I feed him and why and how much. I don't want to have to explain the decisions I make for him. I don't have to do that with any of my other children, why would I do that for Christian?

I do realize that every household is different. I acknowledge that some people choose or have to work outside the home and rely on nursing care for this reason. It's an entirely different conversation and I'm not discounting that at all. I'm just speaking for myself and from my own situation here. I'm not challenging anyone's lifestyle or choices, trust me. The fact is that the majority of parents of special needs children I know can't work full time away from home because is it just too difficult all around.

And the whole subject of taking Christian with us versus leaving him with respite or nursing - I don't think I quite articulated myself well last time I mentioned it. Of course, I don't take Christian everywhere. Some things are just not great for him. And a lot of times he's not in the mood. In these instances, maybe I'll take Lola and Christian stays with Daddy. We split up or we all go together. I just can't imagine myself on a family outing - all of us minus Christian. It makes me sad.

Someday that may be a reality. I'm sure others may think -

Well, what about when he gets heavy and he physically can't come with you guys? Will you all just stay home for the rest of your lives or the rest of his?

I don't know. We may have to face that in the future. If there is one thing Christian's life has taught me it's to live in the now. Worry about now. Do it now.

There are many things I won't be able to control down the road. There are many unknowns. So the things I can control when it comes to Christian, I will.


Alicia said...

First, I love you. :-)

Second, YES, YES, YES, and YESSS!!!

Third, we have never used a single nursing or 'respite' hour and we love how things turned out. I know Christian and Rissa are WAY different, but things have a way of working out how they need to.

I am so like you. I can't imagine having a roommate whose job it is to take care of my kid, instead of me. Broke my heart to think about. And we looked into it. Wasn't available when we brought her home but it was a possibility after. I just couldn't stomach the thought. I've had roommates. In college. But that time was over. Our life was ours! This was my kid and I was going to take care of her, no matter how little sleep I got.

Anyway, I fully understand your take on nursing and respite care. I hear you and I back you up, fully!

Yes, live in the NOW!!!

God Bless,


Erin said...

I understand where you're coming from. We have nursing for Aidan daily and respite hours are available if we want or need them. We've had nursing care from day 1. There are days that I can't imagine not having it and days that I wish we didn't. I hate, hate, hate going out with Russell and our other children and we have to leave Aidan at home. I always feel that void of him not being with us. I'm sure that people that see us regularly don't even know that we HAVE another child. Aidan doesn't tolerate going out in public much. Russ works a weird schedule and I can't take all 3 kids with me to the grocery store. I haven't figured out how to grow a second set of arms to push a grocery cart and a wheelchair or his stroller and wrangle 2 small children who want to run all over the place. I had to give up some control of taking care of Aidan. There are nurses that I like and ones I don't like so much. I hate change and when we get new nurses, it takes a while before I'm comfortable leaving for any length of time.

I definitely appreciate your honesty. It just shows that we're all in different places and we're all different in how we handle our circumstances and none of us are wrong, we just do what works for us.

Anonymous said...

I am not judging, as you deserve respite care more than anyone I know, IRL or online. But I have to ask the obvious: do you notice the paradox of liking privacy, doing things your own way without interference and using your mom as a respite care provider? I'm making the assumption that that is what it is, since you mention "signing up." Your mom could give you respite care without the government and/or insurance company being involved at all. I'm examining my own feelings in this, because I'm not sure why I have any feelings about it at all -- but it I'm not clear on why Grandma has to be in an official role to provide date night care when in fact if she is qualified, she should be able to be just grandma who occasionally watches the kids, special needs or not. But going through official channels means you give up that privacy voluntarily.

I know you have strong reactions to things and I always hesitate to offer my opinion on anything here because of it, but families help one another regardless of special needs.

ShaunaQ said...

Alicia - Love you, too!

ShaunaQ said...

Erin - Nursing care can be essential in your daily existence and that may be in the future for us. Every family is different and in writing this blog I thought about families like yours and really hoped I was respecting your position while stating my honest feelings. We all have our own situation, family dynamics, support systems (or lack of), etc. and we all do the best we can!

I love you, tribe sister!

Cathy said...

I have followed you since Christians accident - and wanted to say Hi once again. You're doing what's right for you and your family, which is the way is should be. I'm proud of you for knowing what you want and for DOING it. You're an inspiration for Moms everywhere :)

ShaunaQ said...

Anonymous - thank you for your comment and concern on the matter of respite. One thing I didn't make clear that I should have is that there is a difference between respite (4-8 hours a week) versus nursing care (higher skill set, 12 hour shifts a day every day). I mention this because my feelings about nursing are specific to nursing care. We just started using respite hours that are available to us and my mom is providing. She has always been Nana to my kids since my first son was born. That has and will never change.

There are different levels of interference by doctors and government entities that are a necessary evil. This is also true for nursing versus respite, hence my explanation of the difference between the two. We have to see doctors we wouldn't normally see, order equipment and justify that order to people we don't know. So, of course there is interference into our family's privacy. I'm just saying I'd like to keep that to a minimum so we have some semblance of a "normal" life. With respite care that is easier to do. With nursing hours, there is a new level of privacy I would then be voluntarily giving up.

Finally, yes, I admit I have strong reactions on my blog. Two reasons, the main one being that this is my son, my child, my life, my family I'm talking about here. So I absolutely have strong and protective reactions. Unless I was a robot I don't think I could be any other way.

My other reason I may have had strong reactions to commenters (and this is few and very far between, if that is what you are referring to) is because they post ANONYMOUS. That is a huge pet peeve of mine. Seeing as you have posted anonymous, I have no idea if I know you well, if you're family, a friend, if you're coming from a place of support and love, or if you are someone just trying to cause conflict. I'd like to think you are someone who cares about me and my family, and if you are I apologize in advance, but I don't know how to react to a challenging comment other than on the defense. I understand blogger is not user friendly sometimes. But I ask that you sign your name in the body of the comment so I at least know who I'm having a conversation with. I'm sure you understand my feelings on this.

ShaunaQ said...

Thank you, Cathy! And thanks for continuing to follow our journey!

Anonymous said...

I have been through nursing care and with anything there were positives and negatives.When I finally stopped having nursing it was such a relief to have my house back.

I applaud you for your honesty and relate to so much of what you say. Like you, there were reasons why I chose to do things a certain way that people from the outside may not fully understand, yet what I chose to do worked best for my family situation.Take one day at a time and continue to follow your instincts on what is best for Christian. Nobody knows him like his mom.
One of the best comments I received was from one of my nurses. She said I was the hardest mom she ever worked for but also the best mom she ever worked for.Keep doing what your doing. Your a great mom and Christian is so blessed to have you in his life.

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