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