The weekend before last I met my two sisters in Washington D.C. for our first ever girls weekend away. I have been envious of Billie who does this from time to time with her friends. She has been such a great role model for me in terms of how to deal with all of this, times two no less, with grace and self care. So when my little sister suggested it, instead of feeling too guilty to go and too worried to leave Dave and Ellie on their own, I went. It was a milestone weekend on many levels and a healing thing between the sisters. Ellie also got even more attached to Dave and gave me the cold shoulder for more than one day....upon my return. But that is another story.
We went to the Natural History Museum looking for Ben Stiller, who sadly wasn't there though his dinosaur buddies were. I can't wait to take Dave and Ellie there. It is so clean and everything is completely accessible and viewable from wheelchair height. The Boston Science Museum which is not as clean or as accessible sure could take a leaf out of the Smithsonian's book!
One thing that really struck me was an installation of a Neanderthal male skeleton. It showed that he had a severe head injury. The back right side of his skull was bashed in. However, he lived many years beyond his injury and the notes on the installation said he was well taken care of by his Neanderthal mates. This was some proof my heart needed. Amy Mullins in this wonderful talk references that Neanderthals would carry their wounded and disabled for many miles and kept them alive and with their groups. Here was proof of that. What does that say about their society? Life was tough back then to be sure and yet they took care and effort and scarce resources to keep their own together even after horrible injuries. What does it say about our society who for years locked similar individuals up in institutions and created an entire infrastructure that is less than accessible to all? The proof of Amy's reference gave me hope. So when I call this post "the price of admission" I am referring to all the things we do for Ellie and others do for her to help her be with us. A T-ball game complete with volunteers to help push the chairs and engage the kids. A room on the same floor as the major activities of the house so Ellie can always be with us and we with her. A $7,000 voice output device that MassHealth paid for so Ellie can talk to everyone because she can't make her mouth and vocal cords do her bidding in order to speak. It's the price of admission. I am happy to pay it. We have been very fortunate to have found advocates who work tirelessly to this end because in today's society there are many barriers. I was delighted to find evidence that in the distant past, there once was a society who happily paid it too.
This Sunday Ellie played her second T-ball game of the season and got MVP with 6 runs and a positive attitude...kind of. She didn't like the wind or the slow pace of the game. She wanted to be slightly more hands on - like literally get to touch the baseball and throw it. Her favorite thing is batting and then "running" to the bases. It's all go, go, go! We just received her voice output device and I think I need to program it for T-ball to say things like: "Batter, Batter!" and "Let's get the ball!" and "Go, go, go!" This year so far the game was moving a bit too slowly for her. We recently saw Ellie's eight year old cousin who also experiences sudden bouts of boredom. It's always awesome to see my niece, who I adore because she's great, and she affords me the "typical" kid comparison (though truly I think she is exceptional and words are so darn limited - but I hope you know what I mean) always teaches me loads. Turns out eight year olds have low boredom threshholds and are given to spontaneous bouts of sulking turn whining...;-) Ellie, engaging in said behavior, in this sense is acting her age. Ya gotta love that.
T-ball overall has been very, very good to Ellie and us. So far she has a glove signed by Ben Affleck and a ball signed by Big Pappy. Not bad for an 8 year old. The pictures are of said signed glove and Ellie celebrating a run with her two buddies. The volunteers from the high school leagues are awesome and Ellie gets a lot of attention. We get to watch and take pictures and cheer her on like mad! It feels as close as we are ever going to get to a typical outing and so it's a novel and fun because I get to chat with other moms and dads and no one pulls the pity face. We are all in the same boat and have an hour of little league T-ball like some many other parents. It's just that our hour is an unexpected gift due to the efforts of Marie Shea who started up the whole thing. Thank you Marie!
We are at the magical over 4o pound plus mark and have to quickly get our act together regarding home adaptations and a wheelchair van. I hate those words "wheelchair van". But nowadays they are not the hollowed out deathtraps they used to be. Turns out you can convert any minivan into a wheelchair van for about $15-30k and sometimes find a used one... see here. If that doesn't raise your blood pressure, then you can also figure in the cost of converting our back covered patio into a downstairs room for Ellie. A room that will fit her bed, wheelchair, and an adapted bathroom with a ceiling tract.
So it goes.
Today we met with a lady from an agency that helps parents navigate these expensive waters to raise funds and find the right people to help. It's a whole lot of help you have to get to do all of this. I am overwhelmed. Sometimes it's hard to ask for help. Edgar Schein's lastest book, Helping: How to offer, give, and receive help. goes into the differences between the helper and the helped. It's a good read on many levels especially in light of my career as an organizational psychologist on one side of the helping equation and my life on the other side of it as a parent of a quadriplegic kid.
To reframe, the good news is that Ellie continues to grow and develop. I kid you not when I tell you that in the first months of her life we counted her weight gain in grams. Grams. Do you realize how little that is?! Each gram she gained was an affirmation of life. One tiny bit of mass that was building up her tolerance to this physical world.
Last year she gained 10 pounds which is 4535.923 GRAMS!
In retrospect to have the issue that she is getting tall and heavy is a fantastic problem to have. A really great one. Once I get over the heart stopping cost of it all and go into creative problem solving mode I am sure between Dave and I and all this guidance we can work it out. The start of things is sometimes when they seem the most challenging. I know from my students that learning is hard and I now have to learn this whole new vista of conversion vans, home modification loans, door sizes for wheelchair access, side loading versus rear, etc. What is that new mantra everyone is saying, stay calm and carry on...yep, that's about right.
Those of you who are reading this, if you have direct experience, please weigh in on your thoughts regarding rear or side loading vans. Which do you prefer?