Actions vs. Words….what’s more important?

“You know what’s more important than stuff mom?” Isaac asked

“What baby,” I answered half-heartedly as I zipped between the rows of comforters and pillowcases surrounding us.

“People, mom.  People that are like 3 years old.”

“What buddy??” I responded as my feet stopped moving and my eyes paused from glancing over everything.

“3 year-old people like Katie Grace….they are more important than stuff. So can we stop shopping and go home so I can take care of my sister.”

“Your right buddy lets head home.”  It was all I could say without tears.

For the second time in a week, I realized I just might be doing something right.

Let me explain.

You see most of the time it feels like Charles and I are walking around a dark room trying to find the dang light switch. Every once in a while we find a flashlight or the moon comes out and sheds some light in the room. Most of the time though, we are just making it up as we go. There is no manual to brain damage and even if there was, each child is so different it could only help so much. How do you raise not only your special needs, medically fragile child but also raise a perfectly healthy one?  How do you buffer the pain of it all and not hide reality from them?  Yeah, we don’t know either.  Except per the conversation above maybe we know more than we think.

The first time I thought I might was doing something right was when we had a parent teacher conference with his Kindergarten teacher last week, and she mentioned that he had been talking to her about his sister.  Charles and I were a bit shocked, we very rarely hear of Isaac talking to other people about Katie Grace.  Of course we begged her to tell us what he said. She told us, he basically told her that his “sister was probably going to die this year” and “that we got a new machine for her, it won’t heal her but it will help her.”  And I was again shocked. His awareness of what is happening blew my mind. He is only 6.  How on earth did he get such a good understanding?  How was he able to verbalize it so well?  He doesn’t mention these things to us!

Many times our conversations look like me stumbling through words to try to figure out how to explain to him what is happening.  Or me figuring out how to say it without profusely apologizing for this painful thing that I can’t control.  Sometimes it looks like me just smiling through the tears, wondering where the flashlight is so I can figure out how to navigate this dark room.  Not often does it include such a mature understanding as he gave his teacher or me that day when we shopped.

As I sat to write this I realized that although in the logical parts of our brains Charles and I have no idea how to do this, our actions are paving the path for Isaac.  The minute we invited the only one who conquered suffering into our walk so that we might also be conquerors, we became the best examples for our son.   It isn’t the correct words, the deep conversations, or the reasoning that is holding our son during this time, its our example. As parents, we want to be able to fix it, to have the answers so it doesn’t hurt, to be able to explain away pain….to help ease. We can easily spend more time figuring out how to help our children avoid pain…then teach them to deal with it.   All of this done with our actions and not our words.   When we put on our pretty faces and say everything is fine, when the tension or stress or fear or pain, is so thick it chokes all who are near, we aren’t teaching our children how to deal….we are teaching them to hide.  Let’s face these things.  Lets speak them out.  Lets be honest about them so that they can loosen their hold and not run the day.  You need 10 minutes to pitch a fit….take it…..and then move on.  Don’t divulge every detail but share with your children…..show them how to process the feelings of life and move on.  There are so many times I have looked at Isaac and just told him my heart is sad today. I am talking to Jesus about it because it will help my heart but today is a rough day.  The tears didn’t stop right away but through them I smiled.  I had sad feelings, which led to a little bit of a rough day, but I stilled smiled, I still loved, I still talked to Jesus, and that is what Isaac saw.

One day he will be the parent who feels like he is walking in a dark room trying to find the dang light switch. My hope is that he will already have the knowledge that it isn’t always about finding the switch but about finding the light.  In finding the light we realize….we just might be doing something right.

Ashland or Bust

We have lived in Redding almost six years now and have had yet to venture up to Oregon and cross that state line. Ashland, Oregon is only about two and half hours from Redding which is just about the same as Sacramento….a drive I have done way to many times!

Charles and I kind of decided last minute that we could totally do a day trip up to Ashland so we did! It was fantastic! Katie Grace did great…Isaac did great… And it was amazing to be away as a family.

We visited this awesome place called the ScienceWorks museum..it is basically heaven for kids. They can touch everything and learn how thing works and why they work! Isaac loved it. Katie Grace wasn’t a fan of all the lighting and stimulation but she held her own for her brother😀

 

 

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Daddy playing in the bubbles
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This little hand❤️❤️❤️

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Charging equipment…it happens 😂😂

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Found a bathroom with spectacular autumn lighting…so I took a selfie!
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Isaac’s new friend
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Burning fires turned the sun red! Isaac thought it was the neatest thing.
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Gotta love Notthern California

 

Christmas in pictures

Whew!!
We made it through Christmas! It was amazing and busy and relaxing all at the same time. I hope you all had a fantastic holiday.
Here are some pictures from our Christmas morning!

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An open letter to my son

Sweet boy,

Let me start this letter with a thought that hit me today as we struggled through the first part of this morning. It dawned on me that you could be aching too. That although you don’t have words like grief and anguish, you do have feelings as such and you sense when momma is wrangling with pain. You may not have a blog or journal…but you paint it with your actions. I am sorry it took me 3 weeks into December to catch on. Thank you for always being gracious when I do and finding a way to fling wide the gates of your heart and let me in again. Turns out I needed waffles from IHOP and Just Dance 2014 just as much as you this morning.

I have come to terms with the fact that I am not a perfect mother. I find a sense of peace with that to be honest, because it might be the one place where we are pretty normal. You see son, there is place within all mothers who worry that they don’t do enough. That they aren’t enough and that their lack is going to ruin their precious children. I like most mothers, worry that I am not enough. It is okay though cause once again, that makes us normal.

There are places though my sweet boy that we are not normal. This journey of grief and life, that I fight….it is not known by all. A million doctors appointments, oxygen tanks, pulse oximeters, suction machines, g-tubes, various nurses in and out of the home, various case workers, and teachers…those things are not known by all. Some know, some have the same experiences you are having. Some kids know what it is like to be pushed to be quieter, stronger, more patient, more understanding, more careful…just more. But not all.

What I want to tell you today is I am trying. I am trying my hardest to make sure that you are more than just the older brother of a special needs child. I am trying to make sure that her living doesn’t cost you your childhood. A part of my fight with grief, man child…is for you also. It is so that you can run carefree. So that I am available for IHOP dates, nuggets and fries,  memory games, soccer games, Christmas recitals, and play dates. As you enter into adulthood, my heart and hope is that I have run this race well enough for you to be able to say, ” I have been changed because of WHO my sister is….not HOW she is.”  I want you to be able to have enough relationship with her to know that WHO she is in our family changed us, not HOW she came or HOW she lived.  Somewhere in me, I know the way to show you that, is to experience it myself.  It is to be the example to you, of seeing her for WHO she is.  It’s being the one who tells you, “oh, look at that face, Katie Grace isn’t happy”.  Or “Oh my gosh she is smiling, come here son look at that big smile. Do you want to try peek a boo?”  I know it is to invite you into her.  There will be some doors with her that we will not be able to open, and as we grow older I want to be able to show how to go through those doors with the Lord.   How to find Jesus and have him show you, when you can’t see on you own.  He is the only one who can show us.

If you can hang in there with me.  If can continue to give me the grace. I promise I will do my best.  If you can withstand the random moments of tears….uncooked dinners….many movie nights…and not so scheduled days.  If you can tolerate the sometimes shorter fuse and unreasonable expectations, that sneak up on me…I promise I will do my best.  My heart is for you son. My heart is to see you be the best you, to give you tools to manage and conquer life.  I promise you, it will not be every December I cry while we sing Jingle Bells….or I leave Christmas present shopping to the last-minute (well that one might always be true! lol).  I promise I will continue to grow.  Next year I will be ready for December, so that we can have hot apple cider, and make a popcorn string while we sing Christmas Carols.   And the next year we will do more. And the next and the next.

I can’t stop the grief from coming, or from sad things happening.  I can fight though.  I can be a good example to you of what living and dealing with grief is. Of what laughing through tears is really about. Of what finding love amidst the pain looks like.  I can continue to keep on keeping on so you have the tools to one day in adulthood be able to say…

“I am who I am today because of WHO my sister and family is.”

I love you man child and all that you bring. I wouldn’t want to do this journey with anybody else.

Love

Mom

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