Once again, to begin again, to begin again and to wonder if it is possible to begin again, and to wonder what is possible in the long run other than the daily round.

I feel like I have been very far away.  Every so often during the last weeks, I’ve had the slight impulse to write something, a slight burst of energy. But all energy has been spent doing work for my UU church’s annual pledge drive (“APD”).  I am on the pledge drive team, such an unlikely position for me to take up. It is far out of my comfort level and the changes that have been made to the drive this year have pulled the work only further beyond my ken. However, I’ve had the chance to work on a few parties and thank goodness, parties are in my bailiwick. Two parties in two nights last weekend, and I admit I was quite flattened by exhaustion. The APD has one more big blow out of a party this weekend, and then the work shifts in nature.  There is at least another month to it but no more entertaining.  

And so, I start this way, writing about the pledge drive and the parties because it is where I can start.  At the moment, I am far from she who writes every day and sometimes comes up with something thoughtful.  I haven’t looked at the memoir in months and have only been working on a few thousand words of the novel at a month. I have not been keeping written tabs on daily life or Julia’s doings.  

And so, I am rather dry.

At HILR, I have two wonderful courses this semester.  One on Northern Irish writers responding to the Troubles and the other on Brooklyn.  The first demands a good deal of reading and considering on topics I know nothing about and the other demands lots of listening to personal stories about growing up and living in Brooklyn.  As a late comer (by comparison to the others) to Brooklyn, I am filling in what I know of Brooklyn and so many of the personal stories bear some relationship to my family’s life in Jersey.  The Irish writers class seems to be full of people who have taken other classes with this teacher on other aspects of Irish literature or people who once upon a time majored in literature.  I am neither and as of yet have not contributed to class discussion. I am still hoping to find my place there.

As for Julia, we continue.  I am terribly anxious that she will lose what benefits and opportunities she has as our terrible federal government under greedy republican leadership intends to cut everything and anything that might support her.  Cutting Medicaid and Medicare to pay for more tax cuts for the rich is preposterous to me.  I want to see the greedy rich pay their full share of taxes, pay the same percentage of their six, seven or eight figure incomes that I pay for my meager pennies.

And yet, we continue.  Not sure if I should break this news or if I have broken it yet to many, but here goes: Julia has been accepted to the day program at The Price Center.  

The history: The Price Center is in Newton and offers Community Based Day Programs that emphasize health, wellness and employment. There is a good deal of community activity and self-advocacy training. I have been actively chasing them since October of 2022.  I was able to tour the facility and programs in August of 2024, after two years of advocacy.  Julia did a day-long visit on the 25^th of November 2024. Julia had a great time at that visit.  She came out asking when she could go back and was very disappointed the next time when The Ride brought her to Bay Cove.

It was determined that Julia would be a good fit for the program on 9 January 2025. I was asked to provide paperwork, including her guardianship papers. Julia and I have a Supported Decision Making Agreement instead of guardianship which folks at The Price Center never saw before. That may have held up Julia’s processing although no one mentioned the hold up until I asked about it.  DDS is required to send a contract to The Price Center and someone needs to send me “annual authorizations” to sign. 

Julia’s proposed start date is 3 March, next Monday.  There was a prior proposed start date that came and went.  Today is the Wednesday before the Monday she should start at The Price Center. I don’t know if the paperwork has been sent and signed.  I have not gotten the annual authorization to sign yet.  

Julia left her Transition Program on 13 January 2023, and I have consistently and diligently worked to find an appropriate day program for her since September of 2022. She may start what has been my first choice for a program next week. Every harangue-ing email and phone call has been absolutely necessary to get to where we are today. 

Every parent of a person with disabilities has a similar story, even those who can privately pay for services have similar, albeit less demanding, stories.

And one more thing, if the musk government gets what he wants, Julia’s adult program will be in jeopardy, the school programs she so desperately needed will be in jeopardy, and the therapies, camps, social activities that she participated in will be in jeopardy.  We could lose everything so that musk and trump and other bilionaires can pile up more gold.

Why?

And this just in: I get NYTimes Breaking News which I keep meaning to un-signup for just to avoid musk overload, but this morning’s news is too heartbreaking to ignore especially considering it was completely avoidable: The first unvaccinated school-age child has died in the previous 24 hours in Lubbock, Texas.

If Julia winds up at The Price Center on Monday, there will be celebrating going on in this house; however, we/I/all of us have so much more to do in this country.

Still, we celebrate, catch crumbs of joy wherever and whenever we can.