Sunday, April 17, 2016

The grief of blogging...

When I lost my mom in August, something happened that I wasn't prepared for.  I lost my voice.  Not literally, but in the way that I have always been a strong advocate for Max, and I found myself unable to speak up.  I felt so much that my emotions were just on the surface that I avoided conflict at any cost.  That caused a few major things in Max's team to slip.

That's the thing when you have a child who relies on you for everything.  Your voice is their voice. Your arms are their arms.  Your hands are their hands.  Your strength is their strength.  So when I was faced with the grief of having lost my mom after being her caregiver, I didn't want to do it anymore. I felt too tired.  I felt too sad.  I felt too insufficient.  I felt too insecure. I felt too EVERYTHING! I didn't WANT to be a caregiver anymore.

Now, don't think I was curled up in a ball leaving Max to his own. Of course I still gave him everything I had.  We were still happy in the sad times. We've been excitedly looking to big sis's future after high school.  We have gotten by with Steve traveling an insufferable amount. We have worked hard at our jobs, and charities, and new adventures on the horizon.  We get up, do all the things we do to get by; therapies, school, making food and medicine, and doctor appointments.  But at the end of the day I would collapse and wonder how I got through another day.

For our anniversary, Steve and I got away for a trip without Max.  This was the longest time we've ever been away from Max and the first time we've ever left him with someone day and night.  His nurses stepped in to cover all the night shifts and one of his previous nurses stayed during the days to give us this gift to be together on this special trip.

While we were away, I recharged. Steve and I were able to reconnect without all the nonsense of life getting in the way.  I remembered I was brave, and strong, and smart.  I remembered that there is one thing I know better than anything else in this world...and that's taking care of Max.
I also remembered that sometimes I have to cut myself some slack.  It was earth shattering to lose Mom....but I'm okay. And Max is okay.  I am trying to move out from the heavy wet blanket I've been wrapped up in the past 8 months.

In the past couple of months, we've shifted his school help and have landed on a great team for Max. Yes, it's frustrating to be at the end of the school year before we get the ball rolling on it all.  But, the rest of 6th grade will be good, and it's going to be a great 7th grade year.  Max has been so proud of the work he's putting out in the past two weeks.  He loves to learn and he loves to do work.

We also had to shift a few things with his medical team.  No one was's just Max is growing into a man boy and we needed someone who fits better with this point in his life.  I questioned myself constantly about leaving one provider to another one.  I didn't want to rock any boats or upset anyone -- mostly because I didn't have any fight in me to explain my reasons.  But, as it turns out everyone we deal with at our hospital are professionals and helped us through the transition and we're in with a great new team...go figure.

So here we are.  The grief of blogging is starting to subside.  With the blooming of flowers, and longer days we're able to get outside with Max and brush off the winter.  Hopefully that will mean a lot more moments to share here.


Unknown said...

I enjoy watching Max grow. Thank you for sharing him with us.

Unknown said...
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