AB(i)L(E)(ity) to connect

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, Amanda always thought about and pushed for these things for us and for our girls.  We started the process of converting Audrey's 529 into an ABLE account.  I always (and do) take a little bit longer than Amanda to get on board and into these things.  I was just starting to get on board about 3 years ago to the day.  I know that because it was during the mid March School Improvement (SIP) Day that I took a course led by a representative from Teachers Retirement System (TRS).  I know it was 3 years ago, because our Mid March SIP day is tomorrow.

When I signed up for this seminar on TRS, I was in my 18th year of teaching.  Slightly over the hump closer to retirement than starting.   This year is my 20th year teaching.  As I took this class, my mind started to perseverate towards one thing I heard in the presentation.  That was after I passed away, Audrey would be awarded a 50% monthly death benefit for the rest of her life. That made me feel pretty good as I did not know that before.  It also made me think about the fact that Audrey would probably be living with Amanda and I for the rest of our lives.  Thinking about it in that way really sucks.  After that meeting, I really started thinking about Audrey living with Amanda and I for the rest of our lives.  I thought about that many times over the next 6 months before Audrey's passing.

In addition to the terrible loss that we endured, Amanda and I now also faced the reality that our retirement would be the 2 of us, not the 3 of us.  That too, really sucks.  And I have not really grasped (or have the capability) to think about that much yet.  Not because I can't stand Amanda (it probably is the other way for her though :)) but because even though it was only really a short 6 months thinking about it, I'm not really ready to think about something like that that is still more than 10 years out.

Like I said earlier, Amanda has always been better than me at pushing the buttons to get stuff done for Audrey, Hannah, and our life.   Amanda has been the same positive force in my life after Audrey has passed to.  Amanda has several initiatives on the burner that honor and remember Audrey for the amazing soul that she possesses!  With that said, Amanda took two of the very procedural parts of planning for Audrey's life and she converted them into parent education programs at the superhero center.

Amanda had called the gentleman that had a daughter who has beaten the symptoms of IS, and he got her in touch with Amanda so that she would have that contact lead a seminar on the importance of the ABLE account.  That awesome, packed crowd was yesterday.  I felt connected to the event, as I got to provide childcare alongside Hannah, Amanda, Superhero volunteers, and even an old student of mine.  But Amanda was able to parlay our struggle of getting Audrey set up with something appropriate into an opportunity for other superhero parents.  That has been especially hard lately, because I feel disconnected at times, that I don't understand what parents of kids with severe special needs are going through.  But it does make me especially thankful for my partner, Amanda, who before Audrey passed, pushed just as hard.  Amanda never settled for anything less than the most Audrey could do.  We did (and do) awesome things as a family.  Amanda pushed us to go to South Dakota and everything we could as a family so Audrey and us could have that experience.  And we were (and are) better off for it.



Audrey LOVED that trip.  She was herself, and we love that trip so much, and I am so glad that Amanda had us push our comfort level to share that time with Audrey.

And Amanda continues.   Next week, it will be a seminar on the PUNS list which is a waiting list for individuals with disabilities to receive services as an adult.  Audrey was on the PUNS list since she was two.  I hope next week, more kids who will need those services an adult get on that waitlist so that they can receive services when they need them.   Audrey would have wanted it that way.  And Amanda is making sure that Audrey's friends have access to them.  I am grateful for Amanda's AB(i)L(E)(ity) to connect those services that she advocated for during Audrey's life to Audrey's friends parents.

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