Superhero Princess

One thing that sucks about grieving Audrey is doing things with Hannah that Audrey never got to do.  There are things that Audrey attempted, but never quite got, like riding a horse. Audrey took therapeutic riding lessons alongside Hannah. We tried everything to get Audrey on horseback, like bringing Hannah's child size Maximus toy that Audrey always rode on at the house to convince her to get on the real thing. She ended up enjoying shovelling horse poop with a friend, and loved the whole horse experience, just never got on the horse. Those types of memories I am sure will be much easier to take than other memories conjured by Hannah's accomplishments. I can only imagine that high school graduation will be an amazing memory and a terrifying moment all in one. But, as I have for the last 19 months, I take things day by day. And on this day, Hannah is experiencing something that Audrey experienced first. When Audrey was six months old, Amanda had a conference in DC. She didn...

Around 3 years ago, Amanda had set up an appointment for us for a meeting with a financial planner.  When we had the meeting, the planner ended up having a daughter who also had infantile spasms (IS) or West Syndrome, the same traumatic form of childhood encephalopathic epilepsy that Audrey had.  We met with him, and it was a very helpful appointment in many ways. We didn't open a portfolio with him, but it was when we learned about the Illinois ABLE Account.  Around this time, we had started questioning if the 529 college account that Amanda, my parents, and I had started saving for would be appropriate for Audrey.  We looked into alternative forms of post secondary education, and none of them aligned what would most likely mirror Audrey's post secondary plans.   529 also has a double meaning to us, as 5/29 is Audrey's birthday, and Hannah does the best job of yelling "Happy Birthday Dree" at 5:29 PM. I am thankful that during and after Audrey's life, Aman...

  It’s been 19 months today that Audrey has been gone. I woke up in the middle of the night missing her so much. Loss is loss for anyone, but it’s so hard and sad that there will never be an answer for missing her and the longing that comes with the grief- it never lessens. I’ve struggled recently to take heart in the faith that had previously brought so much comfort in the past year and a half. We had several events over the weekend from Hannah’s ice skating to hosting people at our home. It was nice for Hannah to be with family and friends and get to enjoy some fun things. Jeff and I had a nice time too, but after it was all over I felt sad that even though we mentioned Audrey a few times, her absence from the festivities was palpable. I kept wanting to take our guests to her room to show them who she is and to have the chance to talk about her more, just to include her in the gathering and continue to let everyone know that she’s so much a part of our family, even if she’s not...

 Johnna- I wrote this birthday message to you three days ago on your first heavenly birthday.  I was afraid to post it because I thought it had too much about Audrey in it on your first heavenly birthday.  The truth is; you had a big impact on Audrey in less than a year, and I know the impact you had on your family was even greater.  Happy belated Heavenly Birthday. Johnna- I wish you a first heavenly birthday today.  I envision heaven as a place where there is no cancer or epilepsy.  Amanda, Hannah, I and especially Audrey were always and are incredibly grateful for the time you spent with Audrey.  You gave her a voice.  You helped so many young kids within the autism community find their voice.  And you also listened.  You volunteered for the Superhero Center, which means so much for Audrey, Hannah, Amanda, and I and all the superheroes that you gave a voice to.   While the heaven I envision is one without the evils of cancer...

 So Hannah has been wanting to hang out with her friends over the break, and we set up a movie date with her friends.  The movie was Sonic 3.  Hannah hadn't seen Sonic 1 and 2, but was super excited to see her friends.   We got there and started the movie.  It started normal, Keanu Reeves was the voice of Shadow the Hedgehog.  Jim Carrey was very bombastic as Dr. Robotnik.  I thought I was in for an entertaining and pretty shallow video game movie.  And then, the flashback to a young girl dying of an accident.  (I guess in Sonic canon, this is a pretty important event).  I started to hold back the tears.  I looked to Hannah- who was a few seats down with her friends.  I was hoping she didn't notice with all the other bright lights and speeding around.  It didn't seem to faze her. As the movie rolled along, Sonic confronted Shadow and referred to Shadow's loss by saying “A light shines even though the star is gone...

So, I spent the second weekend in January in Wisconsin.  It was a nice trip with friends after a rough Christmas break.  The roughness of the break was elevated because I let my thoughts of how I am doing in the present push out some of my time that I think about Audrey.  Its hard to explain to other parents.  Maybe I was and am a bad parent before, but I could go minutes and hours without thinking about my kids (for example while getting caught up at work).  I don't go an hour without think about my baby, but these past few weeks, I have definitely let my current situation dictate my time differently.  I think about this a lot.  Last year, I had a colleague who came up to me and told me that I looked stressed out about something at work.  I felt especially bad, because this was the first time I remember getting stressed out about something that wasn't relating to the loss of Audrey.  I know that will happen, but, again, other parents may not...

Last Saturday night was the eighth Annual Superhero Center for Autism's Masquerade Ball.  It was Amanda and my third Masquerade Ball. It was a great night.  Amanda did a great job coordinating it.  I didn't have much of a role except for doing a few small errands for Amanda. It was a good night, but we were worried about it.  Why?  Because our first ball, we spent time talking to other autism parents and meeting some close friends.  Our second ball, we spent watching a video memorializing Dree Bear.  For our third ball, we are out of the shock we were in two months after losing Audrey.  We couldn't leave early like the first two since,  Amanda was in charge of the thing.  But why did she and I take seats on the board of directors last year?  The easy answer is for Audrey's memory.  I took Audrey's birthday off work last year, and did some small maintenance things at the center in her memory.  Shortly after that, we both we...

Today is my mom's 70th birthday.   We've all had birthdays since Audrey has gone.  Today is the first milestone birthday.  Yesterday, I told my mom, "I can't believe you are going to be 70 tomorrow."  She guffawed at it.  Yeah, I probably should have let with something else.  I can't take back what I said, but if it were up to Audrey, she would have skipped right over 70.  (She didn't like 6,7,8- she went counted 1,2,3,4,5,9,10). As some of us have already had out 2nd birthdays without Audrey, I don't want to feel disconnected.  So, Grandma, Audrey wishes you a happy birthday.  She loves you so much.  Audrey couldn't verbally articulate all the things that make you a great grandma.  She couldn't tell you thank you for dressing up for Encanto for her.  She couldn't say thank you for making her feel loved.  She couldn't say thank you for always including her.  But even though it came out as "Woo," You know what she...

New Year's Eve 2 without Dree.   Last New Year's  was our first without Dree.  We were fearful that New Year's Eve would be super sad.  It was.  But it was also appropriate as we searched all the videos that Audrey used to watch.  We found some funny Frozen videos.  It was weirdly an appropriate way for us to honor Audrey.  Amanda and I have been blogging on this site for one year.  Starting around this time last year, I started the tradition of finding a picture of Audrey and Hannah from the last year that we celebrated that holiday.  Last year I posted this picture of the girls from New Year's Eve.  I was disappointed that there was no picture of Audrey and Hannah ringing in the new year.   Hannah has decided she loves ice skating now.  So we went ice skating with her friend for "Noon's Year Eve"  It was a nice way for Hannah to spend the day. She had lots of fun and was smiling a lot. And then, it comes ...

Our second Christmas without Audrey has been a tough one.  There's been some not so great moments.  Its been difficult to see the joy of the season.  One of the things that got us at least this far has been our friends and family remembering Audrey this Christmas.   Before Audrey was born, my mom and sister were trying to bribe Hannah to find out what her soon to be born baby sister's name was.  They were offering her candy and toys to see if she would spill the beans.  Gradually, Hannah kept slipping more and more information.  Problem was, at two years old, she didn't have the articulation she has now.  By the end of the bribe fest/ interrogation, all my mom and sister could interpret was Hannah's new sister's name was "OJY." Fast forward to last year.  Hannah took the JOY at my parent's house and turned it into OJY. Coming home to my childhood home, it was very comforting to see that OJY is still remembered.  When I walked in the...