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...