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?

Good Will…

Hunting that is.

(Please forgive the profanity in the scene above. I am not wanting to offend anybody. It was just a part of the scene.)

There are many reason why I love the movie Good Will Hunting. The scene above is just one of those reasons why it makes the movie my favorite. There is a reality and harshness to this movie that finds a way to always move my soul.

I am realist at heart….I would rather deal with the harsh reality of life than shy away and live in a world of lies. I pretty much believe you can overcome anything as long as you face it head on. Does this make life easy? Not really…there are some really sad things that happen in this world. Things that make you sad, things that really hurt. However that sadness and hurt is always there even when you don’t face it….so I would rather face it head on and deal with it so that it doesn’t run my life.

This is probably why I love Good Will Hunting. For me the movie is about that very thing….Will finding a safe place to deal with the sadness and hurt of his life so that he can overcome it and move on. About the relationships new and old that are in his life that help him deal with it. Within these relationships it shows the different facets of love….love that is honest, love that is tough, love that is tender, love that triumphs, love that is loyal. It also shows the reality of what happens when a lie is shown as love and what it does to the heart of a child.

When I was 19 I went through a time when all I did was stay home and cry really. Not like an unhealthy depressed cry but an I am healing cry. I had begun to face the hurts and pains of my life and Good Will Hunting was a means in which I could process those feelings. I basically would go to work, come home, watch Good Will Hunting and cry. I don’t have a lot in common with Matt Damon’s character, I wasn’t beaten as I child, I didn’t grow up in foster homes, I am for sure not a super math genius extraordinaire. It wasn’t necessarily his particular pain, it was just pain. It mended something in my soul to watch him over and over deal with his pain and as I mended I found strength and I began to look more and more at what was driving me in my life. At the pains and I began to go after them head on. That really began my journey to healing and it strengthened that realist inside of me.

It has been about 15 years since Good Will Hunting was released. It has about 13 years since I watched everyday for 3 months. Yet still today when I watch the movie, it stirs the same things within. It strengthens me, helps me remember the hope of healing, and always encourages me to keep going after what hurts the most. That life is not a black-hole of pain silently guiding my way into more pain….but a world in which I live. A world where I am embracing everything to the fullest.

p.s on a side note…it has some pretty funny parts in it also. For those of you who have watched it…how about them apples. For those of you who haven’t watched it…please do.

Favorite Song and Such

So maybe two things this morning.

1. After my random blog yesterday I decided it was time to bring a little discipline to this bloggers life…so my goal for the next 30 days is to write 1 post a day.  I spent countless minutes yesterday finding a guideline of sorts to help me in this endeavor. I am a little nervous….consistency is not my strongest suit. I tend to be an emotional writer more then anything.  However life is not made up of emotions alone…there is the day to day which is also an important part of our lives.  And truth be told…one day I want to write a book about my girl. I want to be able to communicate on paper the beauty of where we came from, and how she came to be and what we have learned from her.  She has changed this world for the two years that she has been here and one day I want to write about it.

Here is to practice and discipline.

2. Here is the first of my 30.

Music is such a powerful craft. The ability to move people with sounds and words…to create a connection between a song and a moment is amazing to me. People who have the gift of music…the ability to almost see the world in a song blow me away. I have moments when I am completely lost in a song and I am grateful for their gift…for their ability to be able to say in a song the words that I couldn’t quite find.

When I began to think about what my favorite song is…I actually felt a little bit of a panic come over me.  How am I supposed to narrow it down?  How am I supposed to pick one song out of my collection that moves me the most….that speaks of me the most.  I opened up Itunes on my computer in hopes that it would bring clarity but as the screen came up and the black titles began to fill the empty whiteness…my heart began to beat faster and my hands began to sweat.  There were so many artist…so many songs….so many that reminded me of a moment….a time in my life…a feeling…a memory. So many which have become a part of who I am today.

Although overwhelmed I knew I need to find a resolve to find something…just one song that maybe I listened to the most….that maybe moved me the most.  As the resolved settled, in my mind began to work.  I breathed in and out….and just thought…what is one song that is a go to song.  A song I play when I blog….a song I play when I am processing….a song I play just to play.  And although I have lots of favorites,  Tom Petty, Zac Brown Band, Sherly Crow, a couple Tori Amos songs, John Mayer, Joss Stone, Norah Jones, I could go on and on.  There is a whole hip hop/R &B, pop side I have yet to touch…there is one song…which I love.  One song which is just good all the time. A song that although it is 7 years old…doesn’t feel old and I still play it on repeat sometimes.

Fix you by Coldplay….it still hits that place in my heart. I still restores this hope. I can still get goosebumps listening to it.   This song is magical to me….in my humble opinion it was written under divine inspiration.  A song gifted to us through an amazing musician and his amazing musician friends.

Thanks Coldplay for making a song that continues to move and restore hope…years after it was written.  You are my favorite song.

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