Stream Of Consciousness

I honestly didn’t realize until today why I have been the weepy mess that I have been these last few weeks. I thought I was tired.  I thought well you have five kids and lots to remember. I am prone to anxiety. I worry to much which is definitely nothing new.  I attributed the constant crying to all things other than the obvious, which after ten years one would think I would have down by now.  

It’s February.  

It is heart month and I don’t mean cupid.

 It is real heart month.  

The hearts who are sick, broken, healing, or in heaven… We honor, celebrate, recognize and weep over all things Congenital Heart Defects. 

I used to be able to post a lot more about it.  I used to write a lot more about it, but I have found as time goes on that well… I don’t have a ton of time for it, but also I think I’ve been avoiding it as well… because after 10 years… words don't come to me like they used to…there is just no time line and I haven’t been able to sit down to write like I used to. Today though, I felt like I should write however un profound it may be.  


I have for sure been quietest this year. I have said it before and I’ll say it again…

Would our minds and hearts know if we had no calendars to remind us…  

Around the time of my Dads birthday and his death I find myself slowly shifting as well.   I realized today that I do the same with Paxton dates. It’s a gradual, beautiful mess of emotion and today was the day it all came together for me I guess. 

Time, dates and calendars can be beautiful things, but also terribly bittersweet things.



Paxton is doing so well and we are so grateful, but as I have scrolled through social media over these last few weeks. Read articles. Quotes. I was subtly reminded that he is not fixed even though he is doing fantastic as I write this.  I read an article about PTSD and how we Mamas of heart babies don’t have PTSD, we have CTSD or Chronic Traumatic Stress Disorder. Talk about an Oprah aha moment! Yes yes so much yes! It hasn’t gone away. It won’t go away. Ever. The fear.  The waiting for the bottom to fall out.  Yes this may sound negative, but in truth, it is our reality.  I think I have gotten to the point over the years that I don't realize the compilation of feelings from reading this article. Or seeing that photo. Or the reminders and "memories" that  pop up until woah it hits me all at once and I realize that every day these last few weeks have just been adding up little by little until you just cry until there are no more tears. My life is a brace yourself for impact and I feel like if I didn’t always brace myself I wouldn’t be able to move forward. 

As a Mom, as Moms, living day to day with this always in the background it can be so very daunting. And no it isn’t constantly forefront as we go about living busy lives, but it is always there, like a screensaver waiting to pop up when it’s been to long.  Not knowing how his story will play out can be paralyzing.  I know it isn’t up to me.  All I can do is be here to help him through whatever comes his way and pray I am enough to get him through whatever lies ahead.  




February. Heart Month.  I have been a quiet mess of emotional tears.  I had an annual with my doctor yesterday and we cried together.  Isn’t it incredible how in the midst of a life of worry that there are wonderful people who will sit in a white sterile room and cry right along side you. A Mama herself and my doctor since college, who said I can’t imagine and I am here and how you feel is OK.  

I think sometimes we Moms of special needs kids and well … all kids really…need to hear that the most.  

There are ZERO guarantees in life… of this I know and I find if I put guilt on myself to ‘cherish every single freaking moment’ when in fact it truly is ok to not be ok I only wind up worse. There is so much pressure to be fine, to suck it up, it is what it is.... but we ARE allowed to have bad days and cry and watch reality tv to get us through without feeling tremendous guilt. Because what I do know and what I have learned the absolute most over the last ten years is that there is no actually getting through those hard times without completely mucking knee deep through them. Waiting it out. Riding those waves…but also knowing, as cheesy as it sounds, that tomorrow is a brand new damn day. I always know that!  So it’s ok to climb into that bed and cry that cry if you need to. Give thanks as well because there is always something to be thankful for, but by god it’s also ok to not be ok.  I have most certainly also learned that even when you can feel so alone that people really do understand more than we realize because good lord aren’t we all fighting our own fights and we need each other.


 It. Is. OK. To be Terribly. Grateful. And. Still Struggling!

For anyone who may need to hear that tonight.


Love and hugs always,

Jenn 

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