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lessons from the craft fair

November 30, 2018

As a special needs parent, the thing I hear most often is “I don’t know how you do it.” Depending on my day and how things are going, I always react a little differently to the statement. Most times I just shrug it  off and make some joke about how I am fueled by lots of coffee and wine, but there are also times where I feel a little defensive. I can’t help but think “I don’t really have a choice, do I?”

 

I mentioned in my last post that I was having an increasingly difficult time processing all of the things that have been going on. I think that I have been in survival mode for so long and now as things have kind of plateaued, I am realizing that this really is my life now and I have to get used to it. That seems silly to even write out because I have been living this all for almost 18 months now, but seriously, sometimes it feels like it is just now hitting me.

 

Nonetheless, the question of “how will I keep doing it?” has been top of mind these last few weeks.  For over a year now I have been “surviving,” but I eventually need to learn how to live, how to take this life that Asher and I have been given and make it work. As a 25 year old, that is a really, really hard concept to grasp sometimes. So, yes, things have been a little more difficult than I would have hoped for the past couple weeks.

 

Then, I had a little reminder hand delivered to me at a craft fair.

 

We were strolling the very overwhelming gymnasium that was home to hundreds of crafter’s booths on a Saturday in November, when the reminder I so desperately needed showed up and stared me right in the face. Sozo Interiors had set up a booth of some of the most beautiful hand-painted signs that I had seen and right there in the center was the one that was meant for me.

 

“I still remember the days I prayed for the things I have now.”

 

12 words, 1 simple phrase that put it all back into perspective.

 

There was a time when I was told that Asher would never make it. There were several days that made up the darkest period of my life where I thought I was carrying a child who would never get to meet me. If I think about it for too long, I swear I can still feel the tears streaming down my face as I prayed harder than I have ever prayed in my life and begged God to let him make it through.

 

THAT is how I will keep doing it. Because the alternative to living this life would mean that I didn’t have Asher. It would mean that I would have never known his strength, and joy and love. Sure, it would mean that I wouldn’t constantly be fearful of what was next or that I wouldn’t have a bag packed at all times for the next hospital admission. It would mean that I wouldn’t know Children’s Hospital of Wisconsin like the back of my hand and that I could live a seemingly “normal” life. It would mean that I wouldn’t stay up late at night wondering how I am going to keep doing it. But it would mean that I would have to give back all the snuggles, all the time wasted doing nothing but staring into his giant, beautiful eyes. It would mean that I wouldn’t have cried  tears of joy when I felt his first teeth because it was one milestone we hit on time and I wouldn’t make every single person who walks into my house watch us practice sitting because he is getting so strong and I am just so proud.

 

So the truth is I have no idea “how I do it,” but I certainly know why I do it.

 

That sign now sits right next to my door, so I can be reminded every time I leave my house. It sits right next to the note reminding me to give meds and the calendar chalk full of appointments.

 

This isn’t the journey that we were just handed, this is the life I prayed for and tough as it may be sometimes, what a life it is.  

 

 

 

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