Guilt and Hope

I find myself asking my son the statement question “okay,” ALOT!  Like when I am telling him to do something he has a choice about the matter.  “Isaac we are going to bed in 2 minutes okay?”  “Isaac we are cleaning up in 2 minutes okay?”  Isaac it’s time to shut the tv off okay?”  It’s pretty constant for me.  My mom and I were talking about it yesterday and she was telling me that sometimes this can be a sign that maybe you are still mad at your parent for something, so you are not able to be a “mean” parent.  Therefore you are constantly asking your child if things are okay.

And its kind of sad for the child because it sends them mixed signals.  You as the parent are telling them something and then asking them something as if they are an equal all at the same time.  It confusing.

I was pondering this yesterday:  Am I still mad at one of my parents so that I have to be the nice parent?  Or is something else.  And to be honest I am still not sure why. I didn’t quite figure it out but what I did realize is I feel guilty about Katie Grace for Isaac.  I think I have failed him as a parent because I couldn’t and can’t protect him from what we deal with with her.  He suffers a loss with her also and there is nothing that I can do about it. I feel guilty.

I have had these moments when I have watched him watch siblings play together.  There is this longing in his eyes. I can see this piece of his heart come up out of him and he just wants to be a part of a friendship, a bond, a sibling pair.  He wants to run, he wants to play, he wants to talk.  He wants that connection with a peer.  And he would be amazing at it.  He already is an amazing older brother, I couldn’t imagine what he would be like if she were “normal.”  I am pretty sure he would be that brother that takes his little sister and plays in the mud with her, and chases her, and talks to her. Together they would build castles and tell stories and talk about life. And she would do everything he does.  She would want to sit where he sits, plays where he plays, be where he is.   They would fight over toys and get bugged by each other…I would have to negotiate arguments and disgruntled moments.  I would have to teach him how to be gentle with his sister and how to protect her heart.  He would have to learn to share and be the bigger person.  She would have to learn how to share and be the bigger the person.  I would be writing a completely different post about what having two kids is like, and the relationship that they have.

But I am not and they are not.  Instead he is practically an only child.  Asked who his best friend is and it’s me.  Asked the difference between his peers and adults, he doesn’t really know.  To him adults are his peers.  Pre-school has helped alot.  It has given him a grid to see thing differently with but at home he is still an only child.  And I feel guilty.

I wish I could just fix it for him.  I wish I could just have an instant sibling for him. Someone to connect with and play with.  Someone for him.  It’s not that I don’t love being his best friend, I love being his best friend. He is amazing. He is tender and kind and funny…sometimes a little snooty but overall an amazing guy.  It is just hard to see his heart-break. It is hard to watch him long for something that I can’t give him. I can’t fix Katie Grace , I can’t make her be the sister we had all hoped she would be.  I can’t make her his best friend or make her talk to him or play with him.  I can’t fix those things. I can’t change the fact that we lived at the Ronald McDonald house for a month and were completely displaced.  I can’t change the really sad days when momma just cried.  I can’t change that one day I am going to have to talk to my boy about death, I am going to have to help him grasp an understanding of death and life in death that some adults have yet to grasp.  I can’t change all those things. I can’t protect him from that sadness or that loss.   It makes me sad, and I feel guilty.

I don’t have an answer either.  I don’t know what I am going to do or what to do.  So I just keep on walking, I keep on getting up everyday and making it the best day that I can.  I remind myself that although he isn’t having a normal sibling relationship, he is getting to be a part of something very special with his sister.  I remind myself that although my heart breaks for him not having someone to play with, I have witnessed him talk to her and create some kind of relationship with her.  And I have to believe that that relationship is more special and life changing that anything else I could have hoped or planned for.  I have to believe that just as Katie Grace has come into my life and changed me for the better, it is the same for him.  I have to lean into the Lord and place Isaac’s heart in his hand and trust that He will hold him through the sad parts.  I have to believe that the Lord will give him a supernatural understanding of all that has passed, maybe even an understanding that will help form him into who the Lord has him to be.  I have to believe in something greater than what we are walking through.  I have to believe because otherwise I am just left with the guilt.  Guilt grows no one, guilt doesn’t do any good, and it surely doesn’t draw us closer into relationship with each other or the Lord.

My hope is that one day, the guilt just goes away.  That as I wake up each day and find the hope, it takes up all the room in my heart and the guilt quietly packs its bags and moves out.  And when I am having the conversation with Isaac as he is older, I can tell him the story of hope and guilt and how in the end….hope always wins.  Love always wins.

My start to this week..

basically looked like this:

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a very tired and not feeling well little 4-year-old falling back asleep after being awake for only an hour.  He really is so cute and pitiful while sick. Everytime I take his temperature he says…”Momma am I still not feeling well?”  Oh my sweet boy!

And also like this:

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a very awake and feeling just fine puppy wanting me to know that she is ready to play at my next earliest convenience.  I am still trying to figure out how to let her know that playing with her will not ever really be convenient…especially at 7 in the morning!  Coffee is the only convenient thing at 7 in the morning.

I am hoping this cold/flu will last only a day or two and then we will be back to normal.  However, I am a realist enough to know that is only hoping.

Here is to a week of lots of snuggles and movies.

Logical

“Hello,” I say holding the phone up to my ear.
“Hi. This is Jen from O2 air. Is Katharine’s mom available?”
“This is her.”
“It is time to do another overnight test for Katharine.”
“Really? Another one.”
“Yeah, we have to do them every 6 months.”
“Um I wonder if insurance companies are aware of how much this doesn’t make sense for parents.”
“What’s that,” Jen asked questionly.
“Well, I don’t know asking a special needs baby who is on full-time on oxygen to stay off oxygen all night doesn’t make much sense to me.”
“Oh, yeah,”Jen responded once it hit that I wasn’t upset with her.

Well it doesn’t make NO sense to me. I get it the oxygen companies need to have the numbers to prove the need. I get that part. I am just thinking in this day in age that is the best way they have to do it? Like really you want to take my already needing oxygen child and deny her the oxygen she needs so that you can justify her needing oxygen. That’s a bit hard me.

I can understand why it isn’t hard for the insurance company. They aren’t there in my house in the night. They don’t get up with her when she starts blowing snot, or watch her face turn to an ashen color. They aren’t there watching her heart rate rise or watching her struggling to breathe. It wouldn’t be hard for me either if I wasn’t there.

I am there though. I am there through it all. I am up with her in the night and I am knowing what the lack of oxygen is doing to her. I am watching her labor to breathe and to be honest…my momma’s heart has been through a lot but that is more than I can take. When you can’t help someone because it is completely out of your control is different then when you can help someone but you kind of cant. It is a different kind of helpless. It’s why I wish insurance companies were more logical. Like let’s not have someone who already hurts…hurt more.

I knowing this is dreaming but how about they trust me. Like you seem like a reasonable parent and someone who actually doesn’t prefer to have their child on something that they don’t need to be on so we can trust that if you daughter needs it…she actually probably really needs it. No questions asked just trust. Now I know that this probably won’t happen….it might have happened a LONG time ago but not so much in this day and age. Maybe one day we can get back to there. Maybe….but until then I have to have my doctor write Katie Grace a note…that or watch her struggle.

I am going with a doctors note.

Craft Day Saturday!

I have big plans for today….and none of them include me stepping foot outside of my house! I love days like that. I have got sewing projects lined up and my heart is so happy about this! Pajamas pants for my boy…starting to cut the squares for a Valentine’s type of rag quilt….and hopefully the start and finish of one of these!

Fabric Pennant Banner

Fabric Pennant Banner Tutorial – your homebased mom.

I have been trying to figure out how to fit one of these into my place of dwelling for maybe 3 years now. I wanted one in our first apartment….when we moved I wanted on in our second apartment and when we bought our house I thought….for sure I can figure out how to fit one into here!!! As soon as the Christmas decorations started to come down…my mind began figruing and planning for the next holiday. Now Valentine’s Day isn’t necessarily a “holiday” but it was the perfect excuse for more DIY projects…and a PENANT BANNER!

Hopefully by the end of today…this fabric:

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Will look more like the picture above and it will be ready to be beautifully hung over our fireplace come Feburary 1st!

Happy Saturday to you and yours!  And if you are spending the day crafting like me and mine!  Happy Crafting!

If you could..

I am not one to regret. Not that I don’t have times of regret…moments that I look back on and think “ooh I wish I had done that differently,” I for sure have those. I just think those moments are necessary to a wonderful life. It is those moments I believe that help us become better. It’s those moments that teach us…things about ourselves, things about life, and things about the people around us. Regret is one of the reason why if I could read a book containing all that happened and will ever happen in my life, I wouldn’t. ( I have to read it cover to cover if I read it. ) I think that there is too much valuable information and experiences in the living of life, to have it taken away but knowing what is to come.

Now don’t get me wrong, does it sound sweet to know what is coming up?? Yes! I am a planner…I love to know! I love to know how to plan so I can know how to respond and how to feel. I love knowing what to expect. Not knowing is not easy for me. And you can bet it sounds sweet to know what happens with my Katie Grace. It would be amazing to just know, how long is she going to live, what will it look like, will it be graceful and beautiful and sweet. Or does it get ugly and more painful and I watch her slowly and painfully die in front of me. What doctors do I take to her, how helpful are they, how many more hospitals visits..etc. etc. I would LOVE to know the future of her life. I would LOVE to know how to plan…..how to prepare my heart. So reading the book sounds sweet!

Then there is regret and what it teaches me. I look back at the first year of her life and think I could have done this better. I have regretted not getting a nurse earlier, or not figuring out she was allergic to the food we were feeding her earlier. Those things would have been nice to have in place a lot earlier then we got them but I learned with them. I learned myself and my daughter in the process. I don’t regret now. I don’t look back and say I was awful because I didn’t or I should have known. I just look back and say okay, I learned and all I can do is keeping learning. I can keep doing life and learning along the way.

So maybe it isn’t regret but learning that I would miss if I read the book of my life. I don’t mind learning, even the hard things. They aren’t fun, they aren’t easy but they are a necessary part of life. I don’t regret moving to Georgia and disappearing into the depths of a family cult basically for three years. I learned A LOT! It would have been easier to learn another way but I didn’t choose that way. And it is okay. And on top of that I got Charles David and two of the most amazing kids out of the journey; a journey that isn’t even over yet. I wouldn’t want to miss out on all of that by knowing ahead of time what is to come.

I for sure wouldn’t read the book.

What about you? Would you read it? Would you want to know?

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