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 goes...my 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.

Summer is bringing it.

We are thoroughly enjoying our 100+ degree summer days, and the beginning of our monsoon evenings. A lot of people complain about the heat here, but I don't mind it. At least not until maybe September. Then I'm done.

Summer is bringing it with some pretty awesome stuff lately.

RESPITE

We got respite hours! Actually, that happened months ago. But we haven't used it until now. We don't have nursing, mostly by choice, I haven't really looked into it. Our house is too small to add a stranger in the mix. We like our privacy and it's just too invasive for us. It may be needed in the future, but not now.

As for respite, that was definitely needed. If not just so I could get out of the house and get some groceries. But I was still not comfortable allowing a stranger in our house to be alone with Christian. Of course, that person wouldn't always be a stranger, but still! Also, the respite provider can't technically watch Lola, as well. So was I supposed to go do fun things with just Lola in tow? No. We're a family, and I have a huge problem with leaving Christian behind if all of us are going. One night the coordinator for respite said we could get hours for a date night. Yippee! But what about Lola? I'd have to find an additional sitter for her. And that sitter would watch Christian anyway. Respite wasn't making sense for us. In fact, the only thing that respite could provide is assistance while I'm home or while we go on an outing with just me and both the kids. It started feeling like more of a headache. Do you see my dilemma?

That is until...my mom signed up to learn how to be a respite provider!!! And now she's our respite provider. She's not a stranger. The kids know and love their Nana. It has been pretty close to perfect!

ANNIVERSARY

We're almost at the three year mark. Yes, it's been three years since we got to keep Christian! And are we celebrating? Of course, we are! That is a day for celebration and Christian is reason enough to celebrate. More to come...

BIRTHDAY BOY

Mama has been trolling Pinterest for ideas for the birthday boy who will be...drum roll please...four years old! He's not a baby anymore. Still looks like one to me with those big ol' cheeks. Okay, so he's not a baby anymore. And, okay, so his birthday isn't until the first of August. This is the thing, last year I was jaded and said screw this birthday party crap, we're going to Mexico. I had a moment. I don't ever want to miss the opportunity to celebrate Christian again. So there will be a party, alright. One that involves Pinterest ideas and a month to plan and buddies like him and...dinosaurs. Also, maybe a jumping castle, but don't tell Christian, K?

SUPER AWESOME THINGS COMING UP

I'm not elaborating yet but just know that some super awesome things are going down. I'll just throw a few words out there...L.A....Crossfit...July...ISR... Yeah, it's super awesome, I told you!

REFLECTION

So summer is really bringing it like crazy but I can't help but feel like my hand has been slapped. Remember my post about God? Well, I just got word that a little girl Christian went to school with grew her wings. I don't know why and I don't know details but I can't help but have such a mixture of feelings as her family grieves her passing while we plan for amazing things ahead. It's like a sign from above saying - Stop acting like a brat. I don't mean to sound incredibly narcissistic about her passing, but it's how I relate and make sense of this - that kids like ours, fragile little souls, can so easily be gone tomorrow. What I'm saying is that it was like perspective delivered to me on my doorstep. I don't feel bad about feeling thankful for our current path, though. Not in this line of work.

WEIRD

Christian hasn't had one of his big seizures in a few days. Isn't it backward that I'm so used to seeing them every day that when he goes without them, I get concerned? Welcome to this line of work.