Tuesday, February 13, 2018

A Letter To My Boys

Today I felt better again. Better inasmuch as not like I'd been run over, and could actually sustain a thought process over more than 2 minutes. Huge improvement. I actually took Jack on a walk this morning, and that's when I had this kernel get planted in my brain. It's germination period, as it happens, was surprisingly fast. Here goes...

Dear Males In My House,

I am so lucky that each of you is here with me. Because of you, I have a happy life of which I am very proud (Mom, I rewrote that to remove a dangling preposition. You are welcome). I've been thinking about how I've been acting in my own home, my favorite place in the whole world, and I'm not very happy with that I'm recalling. So I'm making you a promise now to stop.

I've been complaining. A lot, right? It is exhausting to clean up after you when you don't care to clean up after yourself. It does make me feel like I am failing at parenting when you don't know how to do these things. I don't expect you to WANT to. I didn't want to when I was your age. I don't want to now. I just know that it has to be done. So I do it.

Lee, you take care of so many things even though you don't recognize it. You set up coffee so it's ready in the morning, a necessary part of me being able to function. You work really hard every day so that we can live here, on Pocomoke, where we LOVE, and even when things are hard you get up and go back in. You make time for yourself in the shop or on the bike (or both) because you know that your brain needs that so you can be present with us when you are here. Then when you are present, you find what the boys like, or need, and you make it happen.

Drew, you are just beginning to really learn where your wings are, and it's really exciting to see them start to stretch! I love watching you learn to show who you are with confidence to the world as you move from elementary school to middle school, and then beyond. You've really started pitching in around the house. It's noticed, and it's so deeply appreciated. I am enjoying teaching you basic things like how to do laundry (from into the machine, through folding and back into the drawers...except for sheets. No one can fold them.) and your cooking skills and interest make me believe that when you leave home, you will not be ordering in constantly or eating only boxed macaroni and "cheese". I hope.

Tucker, you sometimes seem like a knotty shoelace that does not want to untie, but once you get past that first snarl, your good humor shines through. You love a good joke, and you want to share it with everyone you see. You decided late last year to be a part of your community in such a large way, fundraising for families...kids!!!...less fortunate than you, and it makes me so proud that you see these problems and instead of laying blame at anyone, you simply pushed up your sleeves and said, "I want to help." and you did. You are an inspiration to me.

So, despite the fact that I haven't been active in the Catholic Church in many years, I am making a Lenten sacrifice, and I hope it's one that makes me better, and makes you better. Many years ago, I realized as I drove your brother back and forth to day care on my way to work that I was yelling TERRIBLE things in the car at the other drivers while he listened. For Lent that year, I gave up road rage. It was hard, and I didn't always succeed, but I'm far more controlled in the car than I used to be. I hope that my giving up complaining has a similar effect on how I speak, and maybe, a little can rub off on others around me.

I love you guys, all of you.

Mom


Tuesday, February 06, 2018

Warts and All

I bet you were all wondering...when is she gonna write? The anniversary just passed by us, and nothing on the blog.

Well, it's been a really rough year so far. And the year is only 37 days old. I write less often now because it feels redundant and I don't think I have new things to say, and I don't want to waste a reader's time. But here's the reality: things have been really hard, and I don't want to write that it's hard because I feel that you come here to read about strength.

So, anyway, there you have it. I'm going to make an effort to be more authentic on this blog this year, which means that you get me warts and all.

So, one of my boys is really having a hard time. It's not easy being the parent of a special needs child who cannot care for him- or herself. It's also not easy being a parent of a fully capable neurotypical child who cannot or will not behave himself. It's staggeringly draining, physically and emotionally (and occasionally financially). It's hard to not lose your temper all the time when he is being difficult just to be goddamn difficult. Just so that we will see him. Why doesn't he realize that we see him all the time. ALL THE TIME. We're actually pretty good about parental technology around them. We try to draw lines, abide by our own rules. Sometimes we can't, but we usually do.

And yet...no credit is given.

On top of that, I've had several friends lose parents recently, and we've come to realize that we are entering that shifty, ugly period of our lives where there are no more weddings to attend, but an increasing number of funerals.

And on top of that, it's a slow start business-wise this year. That's really not a terrible thing other than it's terrifying.

But today marks 4 years since I stood up in front of a standing-room only church and said my public good-bye to Connor. We still speak to him as we feel it needed. Last week, the night of the "anniversary," Jack the dog had a dream that caused him to try to bark in his sleep. This almost never occurs, and never at night. This time, it was at night, before we feel asleep. I thought to myself, 'Is that Connor reaching out to us again?'   And then Lee said out loud, "It's like Connor is saying hello."

Weird, right?

In the meantime, the future keeps falling upon us, taking us further away from the time when Connor was with us. Pushing us towards the time when our parents may not be with us any more. We all have time on this Earth, but sometimes, it feels like time is the greatest thief of them all.

Wednesday, January 17, 2018

Excavations

So, new year, new approach and all, right?

In the week between Christmas and New Years, we decided to clean out a storage closet that has been terribly abused since we moved in 16 years ago. It took only about 30 minutes to get everything out. It took about an hour to "organize" into categories, and another hour to start disposing of the obvious garbage.  Eventually, we got down to having to go through boxes. My first box was almost 100% Connor stuff, marked Connor 1st Year. Cards from the baby shower. The baby book we kept for 6 weeks until it became apparent he wasn't the same kind of baby all my friends had at home. Cards from his birth. Cards from his baptism. Hospital bracelets.

"Look!" I said, "I found our hospital bracelets from when Connor was born!" His brothers thought it was cool.  I brought them upstairs to go into his memory box in my closet, already stuffed to the absolute limit. Upon closer examination, alone, I discovered that they were actually our bracelets from when he was admitted upon diagnosis of Infantile Spasms. Into the trash they went. We don't need extra reminders of that weekend.

An envelope, tiny, clearly re-purposed from a small card that arrived with a gift from my sister. On the front, I had crossed out the writing and labeled it "Connor's First Haircut 7/20/04" Man, that kid had HAIR. It changed - he was almost a redhead at birth, but then transformed into this light, light brown (or dark, dark blonde, depending on how you look at it). But oh my, I still have part of him here with me. His DNA is in my possession. It makes me so happy, and so sad.

The box held photos (kept) and artwork (tossed - he never really made those items in daycare, despite all the effort his caregivers provided) and PAPER. SO MUCH PAPER.  Almost all of it gone now. One birth certificate, saved of course. THREE birth certificates of his younger brother. Clearly I did not have a good filing system.

Then we decided to take an armchair out of our bedroom for unrelated reasons, and behind that chair were almost all of the things of his that I saved. Now they are on display to us, a day and night visual reminder that no one in the family needs. I probably need to go through those and winnow. Each passing day, month and year gives me the chance to review if I have something because I need it to be with me, or because it has his name somehow ascribed to it. Sometimes, I know it was a knee-jerk reaction to the death when it happened. I'm okay with that. Grieving is unpredictable and a process and a burden and intensely, intensely personal. For us, it will be part of our lives every day, even infinitesimally, until we die.

Drew was asked to make a family tree in one of his classes.  He proudly told me that he included Connor on the tree. I told him it was the right thing to do. No matter what, he is a part of our family.

The anniversary is almost here, again.

Tuesday, November 14, 2017

The Gig

What's become an annual event happens tonight. Quarter Mexican will play a benefit for the Arc of Northern Virginia, which we've done every year since 2014.

That first show was hard. We'd agreed to a show before he died, but we honored our agreement because that is what felt right. Then, 4 days before the benefit, I got the news that I had skin cancer, which wasn't the end of the world but very much felt like 2014 was really trying to defeat me. Our gig was outdoors, it was July, and I was terrified of it for more than one reason. Performing in the band at the point was not only his mother (me, duh) but his aunt, uncle, and godfather. It was really emotional for 2/3 of the band. Friends came out in droves to support the event, and at the end it was fun, but man, was I worried what would happen if I started crying mid-song.

This show is hard because this us the first year I've taken the reins to make it my own event. In some ways it's been really rewarding as I've brought in my new colleagues from the company I joined in February, and arranged to go back "home" for the show. We're performing tonight at Clarendon Grill, almost 20 years to the day of Gonzo's Nose's first anniversary show there, in November 1997.

This show also always brings Connor right back to the very front of my mind. Last Friday, we were at my parents house helping them prepare for a yard sale, and the bed rails my parents had for when we visited with Connor were in the pile of "to be sold" items. I hadn't seen one of those in more than 3 years, and it made my cry unexpectedly. Not so much a trap door as a misaligned brick that I tripped over. Either way, the worst part was that I may have upset my mother with my little outburst.

Last week I also had my first ever appointment with a therapist. I'm not really very interested in therapy but it's part of the process for the family, so I do it.

The road is rough, and lined with the unexpected. We keep walking.

Monday, September 11, 2017

"The Talk"

It's been a very quiet time here, but not because it was quiet elsewhere. It was busy, at times crazy, and I felt like all I would do here was complain and that wasn't worth your time. So I stayed quiet.

No one is quiet today in America.

I woke up today, and the first thought I had was not `It's 9/11' and I think it may be the first one in 15 years where I didn't think about it the second I awoke. Is it that 15 years is the time it takes for the memories not to assault you the moment you are conscious, or that now that we have a dumpster fire "leading" the country, it isn't possible for 9/11 to be the first thing in our minds any more because we are too worried about healthcare, or immigration, or the integrity of our voting process, or education, or basically any facet of our day/life?

I wasn't looking forward to today because today I went in to Tucker's class to talk with them about Connor. I'm pleased to report that Tucker spoke a lot more this year, and far more openly, than he has in the past with his peers. They were all quiet and respectful (yay, Mrs. Ready!!) and had only a few questions. I'm really hoping that this is the last year Tucker needs me to come in with him to do this. Not because I won't, or don't want to, but because I want him to be confident enough in himself to feel free to talk about Connor and to answer questions about him without feeling like he needs an adult to explain everything.

I asked Tucker at the beginning today, "Would you call Connor your first best friend?" and he knit his eyebrows together and said, "Yes." and then proceeded to tell his class how affectionate he always was towards his brother. This is a true thing - he was ALWAYS affectionate towards Connor. Connor never got lip from Tucker. The only human to date who never got lip from Tucker. Another amazing thing in Connor's list of amazing things.



Thursday, May 04, 2017

THEY DARED

Jesus.

They dared. They dared to decimate Medicaid and to institute considerable limitations on pre-existing conditions.

Now I'm seriously considering starting a foundation specifically funding assistive technology for underserved disabled individuals.

And how on earth do I do that? On top of everything else.

I am in the 1%, I know it and I am grateful for all that I have. It never would have occurred to me that I would have to fight other people in my socio-ecocnomic strata so that the disabled community isn't left to wither away.

Shit.

Wednesday, March 15, 2017

Dear Republicans....

I don't want to be judged. This means I spend a lot of time preventing myself from judging, as I grew up with the whole "judge not lest ye be..." mentality. Well, eventually.

But I have to ask, and I'm going to do this in letter form, and it's CRAZY judgy...

Dear Congressional Republicans,
Why do you want to eviscerate and undermine Medicaid? Perhaps you are lucky. Perhaps you've never truly known a person or a family with deep, long-term special needs or disabilities. If that's the case, I am happy for you. I do know what that is like. My husband and I are both solidly middle-class in upbringing. We both attended strong universities, received our Bachelor's degrees in the originally-intended 4 years, and we got to work. Became contributing members of our great society. I made less money than him (still do...but this isn't about gender pay parity). We are LUCKY. We worked hard. We had money when we were growing up, and truly wanted for nothing necessary. Sure, I wore hand-me-downs. But my parents also paid for a private-school primary and secondary education for me, so I'd be a leg up when I attended college. I went to a top 20-ranked University, thanks to that primary and secondary education, and I graduated with a 3.4 GPA at that competitive level. None of which was paid for by student loans, Pell grants, or other funds sourced from outside my family.

We bought a house. We started a family. Then the record screeching happened. Our son was born with an ideopathic seizure disorder that rendered him incapable of caring for himself ever in any way. We signed him up for insurance under both our companies. That meant our healthcare costs were doubled to begin with. And to add insult to injury, we discovered that we, as the parents and legal guardians of our son, did not have the right to pick which insurance would be "primary"...a decision we wanted to make because one plan was clearly superior to the other. Sadly, the insurance companies picked for us, or rather, against us. But we persevered, because it wasn't our son's fault that health care was so messed up.

Then, when he was about 5, we came off the EDCD Waiver list, and he had waiver funds through the state and was signed up for Medicaid. Now he had three insurance providers. Even more complicated, but we applied our combined brain power to navigating it. Moreover, it took more than 6 months to get off that list, and months of paperwork that we had to be mentored and guided through because it's complexity was staggering. We both speak English as a first language. We shouldn't need documents in English to be interpreted for us.

Medicaid made sure our son had diapers. They don't make diapers commercially for children larger than 30 pounds -- then you move to pull-up diapers, which he could not use. The next size up commercially available was for adults. Our son, who never made it to adulthood, would have been up shit's creek (kind of literally) had Medicaid not supplied this basic necessity.

When our son needed a specialized wheelchair for transport to and from school, the cost that was quoted to us exceeded $6000.00. And of course, we could have dipped into savings to buy it, but the three insurance carriers sorted it out and covered it together. We are lucky that a $6000.00 cost wasn't going to break us. But we know this community, and not everyone came from affluence, or lives in affluence now.

These are just a few areas where Medicaid supported my son, and as a result, the rest of our family. We are eternally indebted for this support.

If you think for a SECOND that there were "'death panels" in the Affordable Care Act (and I know some of you do) then you can be damn sure that thousands of Americans will die because their Medicaid will evaporate with your new plan to push that back to the states which cannot afford to make up the lost funding, and they won't have BASIC CARE.

So, how do you feel about that? Do you feel that consigning a disabled person to death because you don't feel that it's fair to be covering them at "your expense" is reasonable? I expect if the answer is yes, that you have never truly known someone disabled, or who is a family member in direct care of a disabled person. That makes you lucky. But it doesn't make you knowledgeable about how difficult every day is for those individuals (many of whom were born into their disability) or their families and caregivers. And it doesn't make you right. The community of the disabled and their families see you...the providers of healthcare in American see you...the world sees you. They see you grubbing after money and abandoning those who cannot provide for themselves...an abandonment of our society.  So then I need to know...

How dare you?

Sincerely,
A former Special Needs parent, and a human first