mrs. capela

Mourning someone once is a process in itself but mourning them twice is a different kind of heartbreak. The only thing bearable is if they're not aware of it. Let it be tougher on the rest of us, that is fine... because knowing they're comfortable does give us peace. I was talking to a childhood friend of mine and I said when my mother-in-law got to the point that she didn't know who any of us were anymore, still every now and then when there was a smile or a glimmer of engagement with us-- maybe she even knew someone's name-- I swear we could almost get lost in the moment. As if she only had temporary amnesia instead... that somehow she would magically get better.

So now I am writing to you because that's how I cope. Your health took a bad turn about a week ago after you fell. As Dana said as much as this hurts and we are devastated, you will be better off in heaven than living a life you can not remember. 

But here's what I remember. The first time Dan introduced me, you and Dad were cleaning out the Perry Street house. Infamous Perry Street I would soon learn, with the Capelas being one of five families who raised their kids together... different siblings among them are still friends to this day. Anyway it was evening and you were both elbow-deep in everything you were doing, but perfectly kind. Even though there wasn't much conversational exchange that night... we didn't have a meal together or anything... Dan and I were just stopping by. But eventually there were plenty of dinners, a Yankees game, and various specific family events I remember from very early on. 

We probably all remember my first Easter dinner-- but in my defense it's not that stuffed shells were new to me, it's just not my favorite cheese. That didn't stop Dad from asking me what the heck I was doing-- gutting those poor pasta shells. But while I was also of course the only one at the table not eating your cherished meatballs, for some reason Dan didn't say to heck with me. At least my future son would become arguably your favorite customer of all time. And you know stuffed shells and meatballs aside, years later Dan said since I'm short with brown hair, my name ends in an "a" and my middle initial is "M"... I blend anyway. I also remember my first Christmas with the Capelas. I was so excited to get a stocking-- I think it was filled with toiletries, candy, socks... those sorts of things. Whatever it was, I loved it. We bought you a sweater from the mall and the style was a little bit too fitted for your liking, but I learned to shop much better for your preferences. Over the years we would buy one another lots of purple things and for you, I new anything decorative with cows was always safe.

I remember your excitement for all of the milestones... engagement, wedding, baby, birthdays, etc. You were also both at our home together with my parents when Dan & I went to that first pediatric neurologist follow-up, after Hayden's surprise diagnosis. Every step of the way our memories are inclusive of you and Grandpa. You were both always present for school events, like music concerts or Halloween parades. I hear your voice all the time talking to Hayden, "My guy," you would say. Your grandkids were your world. Logan, Kaitlyn, and Hayden pictures everywhere-- and so much thought with the PA house to accommodate having the kids there. And then Abby came along and re-ignited that twinkle in your eye even more. (Thirteen years between the youngest and the oldest, yet somehow their birthdays are barely a month apart.) 

For most of Hayden's school-age years we would spend time together weekly. When Hayden was very little you would be at our home for him one day a week when he got off the bus, and we would usually get pizza for dinner from the same place every week. You always had the NJ12 local news on the television in the background. Maybe, possibly, complaining about the dog. Dad would say with a smile, "Angelina, relax! Relax like a big ball of wax!" He gave Sammie a treat every time you walked in the door and would sort of box you in with the ottomans after you got situated on the couch, to keep her away. Eventually Dana and Rob moved about fifteen minutes away and you would make the rounds to see all your grands! Once a week-- usually stop by our house and then go there. 

When Hayden was around middle-school age, it was sometime during those years that you became a bit more withdrawn and your visits were more routine than anything else. If you spoke you would re-tell the same childhood memories, typically stories about your cousins and about living in Newark. But eventually you weren't really engaging with us much at all. 

But what I can promise you, is that we will forever hold all the memories that you no longer could. 

When you had to be moved to memory care a few years ago and Dad was moving south with you, it was overwhelming from various perspectives. The least of which was going through each room and all the decades of memories they held-- many of which were first moved from Rockaway, and then Hackettstown. Piles of odds and ends were set aside for donation, or even the dumpster. But I wouldn't ignore all that and I would take a moment to go through them, each time we were at the house. Here and there just a small number of things would come home with us. I noticed how Dan started to recognize and appreciate reminders of you that I put to use or found a nice spot for. And then I remember Grandpa holding that woven blanket decorated with the 12 months-- a holiday or a seasonal design to represent each one. It was always draped on the sofa and folded to display the one end that says the family name just above the bottom fringe, near October, November, and December. Anyway, I remember that moment because he looked at me as he held it up to hand it to me, and he said, "you're The Capelas". Now the blanket is often draped on a sofa in our home, too. 

I hope where you are, in addition to regaining time with loved ones who went before you, that you are doing all the things that made you who you were. Whether it be finding all those sales-- from a department store to a yard sale. (I love how you sometimes picked up something purple for me... I still have one of those little purple glass bowls, I use it all the time.) Or maybe where you are, you can clip all the good coupons from a Sunday paper... make delicious food just like your mom did (so I am told)... definitely tell silly but witty jokes-- (I mean the way you and Dan would go back and forth to the point that we couldn't catch our breath, my parents still talk about that--)... and of course loving and watching over your family and grandkids. 

We are not just continuing on without you, because in truth we are all blessed to continue on because of you. I may share the name but you will forever be the Mrs. Capela. I know I hardly speak for myself when I say I will hear your voice and picture your smile often. Thank you for my beautiful family. And by the way sugar doesn't count anymore so please enjoy all the sweets your heart desires! 

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parent or guardian

This Fragile X Awareness Month post is brought to you by equal parts gratitude and grief.

We're in a new phase right now: Guardianship.

According to the law, Hayden is legally an adult now. So that means we have to apply for something called Guardianship in order for there to be certain safeguards in place. Parents can begin that process through a private attorney or through Arc.

The Arc of NJ supports children and adults with disabilities and where we live it's the Sussex County Arc, or SCARC. Guardianship should feel like a relief I suppose, but as a process it is not fun. It is not only lengthy including all the steps, and time consuming forms and evaluations... but on top of that it can be costly. More so if you need or choose to use a private attorney (roughly up to $4k or $5k). But I was still surprised at the many fees (and some hefty!) even if you file without one. It's up into the four digits either way. You also have to re-file every year-- while not at the same level of expense or time, Guardianship is still not a one-and-done process. It also needs to be established in order to maintain decision making with regards to healthcare, and to be able to apply (or re-apply) for other state services, and much more. But the problem is there's a window of time in between when you temporarily lose some of that access as soon as your child turns 18, because you can not proactively have the Guardianship already established. So at that point you're at the mercy of the state's timeline.

I've learned we are lucky that we are able to file through SCARC, but even more so as Sussex County residents (because they also offer Guardianship services for other counties with Arcs that do not). They have been beyond wonderful. I sometimes think about the slogan on the road signs when you cross over the line into the County, and it says "People and Nature Together"... and how that did not sound like something I would want. The first time I saw one of those signs I didn't even know what to think. I grew up in an upper middle class, suburban neighborhood about 25 miles from Manhattan. When Dan & I moved to this unfamiliar County shortly before Hayden was born, and then learned of our son's diagnosis when he was 17 months, there were needless to say a ton of concerns. Among them, was the fact that we now lived in a rural area. And not knowing what that would mean as far as services and support. And we made assumptions that perhaps a different County with more population, could mean more money, and therefore better resources. We were wrong. Instead of a smaller population of people per square mile translating to less local services, for the most part its meant a little less struggle to compete for providers and availability of said services. My mom recalls this coming up in conversation at one of the specialist appointments early on in our journey, and in response to our concern they said I wouldn't be so sure. And commented that it may work to our advantage.

The Guardianship process itself is a difficult pill to swallow, though... the whole paper trail... I hate the wording.... we are listed as plaintiffs in the manner of an alleged incapacitated person. Our son.

Establishing Guardianship is streamlined for everyone... even a person having been born with a medical diagnosis of fragile x syndrome, for which there is no cure. It's further absurd that persons with disabilities are also required to register with Selective Service, even if their disability would not qualify them for military service. Filing for Guardianship for some people, should automatically cancel out having to register in the Selective Service System.

For as much as Hayden doesn't understand, he also notices nearly everything. He has seen these big envelopes arrive in the mail, he's seen me filling out forms, and he has overheard me on the phone. I also had to try to explain to him why we were going to have a virtual conversation with someone we didn't know (evaluation by a SCARC-appointed psychologist as part of the process), And then I tried to explain why he was leaving school early one day for an appointment with someone else unfamiliar to us, as part of this thing I kept calling "Guardianship". I chose to say something along the lines of... we have to make sure the state knows that we're taking of you, because some people when they're your age can make other adult decisions. Your Guardianship is to make sure they know we're helping you with those decisions. It was not that exactly, but when he still seemed a little bit confused I said that his aunt did the same thing for his cousin a couple of years ago (my niece with Down syndrome).

We had a lot of hiccups with the Physician Certification portion which I don't have the energy to get into. However, if you are a parent who is going to be going through this in the near future, I will gladly explain and answer any questions I can. I am eternally grateful for the moms who did the same for me! At this point I am just hopeful this necessary evil will be completed soon. We will be in receipt of a hearing date and when the case is filed, a court appointed attorney will be assigned to represent Hayden.

This doesn't feel like a happy occasion to me, but I use this blog primarily for awareness so that's why I'm here! On that note, since Hayden's birthday is a week before Fragile X Awareness Month, we happen to be going through this Guardianship process during a lot of awareness being promoted. And World Fragile X Day is coming up on July 22nd! Be sure to post on social media and tell people why! You can wear green, or any other color in the NFXF logo. You can share informative social media posts from the National Fragile X Foundation's page or photos from FRAXA's page-- they coordinate with people in different cities to have landmarks illuminated in blue or teal for awareness on World Fragile X Day as well.

As in previous years, Hayden has his annual page to support the NFXF. Donations can even add up to a chance for Hayden to win some fragile x swag! Another way to participate in the awareness is to simply share his page through this link!

From grief to Guardianship to gratitude... this is certainly a different parenthood journey than we expected. Yet right on par with both the likeness and uniqueness of Hayden.

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