Superhero Princess

This year 28 days of March happen to be in the 40 day Lenten season.  For March, this year, Hannah, Mandy and I are being intentional to hike 40 miles to participate in the Epilepsy 40 Mile Hiking Challenge in March.  Much like the most of the challenge will be during lent, the color of both Lent and Epilepsy Awareness is Purple. I am not sure what March is going to give us for most of our hikes.  Today, the three of us went for a walk after dinner and it was 71 degrees.  It is supposed to be 19 degrees tomorrow. After that walk, I went to the Facebook page of the Epilepsy Hike Challenge.  I clicked a button that I thought registered us for the challenge. I have been struggling recently.  The support I felt around the time of Audrey's passing and celebration of life was uplifting to our family.  One of my worries is that Audrey's loved ones and friends have moved on.  Tonight, my Facebook notifications started buzzing when we were playing a board ...

I referenced Jeremiah 29:11 in my second post way back in January. This was one of my favorite tee shirts of Audrey's, because it really defined Audrey.  I know that god has big plans for her.  And seeing the way that she fought so hard to communicate and hone her other skills that were diminished because of her seizures. Jeremiah 29:11 is one of the scriptures I have kept going back to. That day in church, the translation was slightly different than Audrey's shirt.  Words can matter, and sometimes translation can change how things are.  Over the last few months, I have wrestled with these words.    However, let's fast go back to late December and early January.  We made it through Christmas, and on December 26, stores made the switch from Christmas to New Year's tchotchkes and Valentine's stuff.  If I didn't get the hint in the aisles, my Facebook algorithm definitely had me pegged.  Ads for personalized Lego sets were popping up all ov...

Today is International Epilepsy Day. 2 weeks ago, I posted a long journal entry about Audrey's diagnosis and life with Epilepsy.  This is a link to that post. I struggle with the diagnosis of epilepsy.  Epilepsy was such a part of Audrey's life.  For the last 3 1/2 years, Audrey didn't go a day without a seizure. I don't have the same dread with Autism.  Mandy explained that in Heaven, Audrey wasn't sick and that she didn't have seizures.  Hannah once asked us if Audrey had Autism in heaven because "her autism is cute."  Even though Audrey, is in heaven and doesn't have daily seizures, epilepsy is still a big part of our family. I have friends  and family with epilepsy and friends whose kids have epilepsy.  It is still a part of our family's life. Last June, I rode 126 miles for epilepsy awareness. In September, we did a 5k for the Epilepsy foundation. This next March, we plan on hiking 40 miles as a family for awareness. If this thing that hau...

    I continue to struggle with what, when, and how to share. Recently, I’ve chosen not to, or rather, simply taken no action, which has meant not sharing as much about our life or grief, but also has led me to feel somewhat isolated, which doesn’t seem great either. But some parts of grief don’t make for cute blog posts. Some of it is ugly and dark and very messy and hard to hear. Some people aren’t able to hear it or sit in it with you. And, in some ways, our life right now is very insular- we’ve been sick in the past couple weeks which kept us home, and Jeff, Hannah, and I have developed our little routines at home that seem to help us in the day to day (playing board games together, praying together, etc.), though it also does at times feel disconnected from others. I even sometimes find it a bit hard to leave Jeff and Hannah and our home- our home where the memories of Audrey and her presence are strongest. I find it most comforting to be here and with those wh...

Facebook reminded me of this a few days ago.   6 years ago, we decided to be cute in announcing Audrey's upcoming birth.  The Eagles had just defeated the Patriots. Only Child Season ended at the end of May 2018.  My mom kept Hannah at our house until the afternoon of Audrey's birth.  Hannah didn't want to come when my mom asked.  She said she wanted to watch more Chuggington. Once my mom showed Hannah Audrey's picture, she was hooked, and the sisters became became best friends forever. Now, I struggle with helping Hannah.  She has advocated for herself when she needs something.  She has put in the work on her grief.  She has even shown empathy towards others who are grieving. It's me that wishes I had more to help Hannah. While I walk with her, I wish there was more I could do for her.

This is the 2nd part of my Sweethearts post. My first part was my anticipation for Hannah's Dance. The link to that post is here. So, Mandy was doing Hannah's hair, and I was getting dressed.  And then, I saw it hanging on the back of of our bedroom door.  "What is Audrey's dress doing here?" I asked. "Hannah is wearing it." Mandy responded. I took one more look at it and shed a tear.   I was running some errands, getting hair ties, and other items for Hannah and came back and Mandy asked: "Is it okay?" I answered back that it was.  I really wasn't sure.  But it really was. I'm not going to lie, it was pretty emotional. I later told Mandy that I can't believe the fact that I didn't figure out Hannah and Mandy's plan.  They were planning this for about a month.  I should have known since they didn't go dress shopping.  Also, Mandy asked if I was getting a corsage for Hannah.  At first, I said no, because I had gotten one...

 So, I have always thought that Valentine's day was going to be tough.   Tonight is the sweetheart dance at Hannah's school.  Last year, Hannah went to her school dance with Mandy as I took Audrey to her Valentine's dance at the Superhero Center. The girls before Hannah's dance last year I am excited to take Hannah to her dance today.  But I know I will have all the feels today as well.  Last year, Audrey was dressed like a princess.  She had a beautiful dress that her mom and Hannah picked out for her.  She had a beautiful corsage. She loved playing with her friends.  But once the DJ played Disney songs, she stole the spotlight.  She wouldn't stop dancing with anyone and everyone.  It was one of those moments.                                            The dance tonight will be amazing, and hopefully Hannah, Mandy and ...