Just another Earth bound being: LOVE

Baby, you did not break my heart, you opened it ♥

Happy first birthday in Heaven, we miss you and we LOVE you so much!!

♥ Page ♥ 3/13/10

What can I say baby? I still miss you. I will always LOVE you! We will always LOVE you!! Page, you changed us both forever. We will never forget. You will always be our baby. Our first born. Our son.

It still boggles my mind that I am a mom. I am a mom, to an angel. I do not comfort my baby in the middle of the night; he comforts me when I wake up crying in the middle of the night. No one calls to see how the baby is, they just check in to make sure I am ok. There are no pictures. Only a scrapbook of ultrasounds, one of you alive and healthy and the one that delivered the tragic news you had died. I kept the first few things I bought for you and gave the rest away. I kept the little Phish onesie and the Phish hat, they were the very first things I bought. I kept the sympathy cards. I kept the baby‘s breath from the flowers that were sent. I needed these things, something tangible to touch, something to hold.

I miss you and LOVE you more then I can express in words. You will always be a part of our life. A momma never forgets. Thank you for the little signs to remind us, that we are loved too.

I love you too!

We are in love. We have known we are soul mates for years now, maybe we always knew. Bob has always been there for me, and I will always be there for him. About a week after we celebrated our 3 year anniversary, Bob asked me to marry him. I of course said YES! We happily announced our engagement to our families. There was a lot of hype that summer about 8/8/08, and how it was a lucky day to get married. I wanted a special, magical day to get married too! 9/9/09 didn't sound right for us, and 10/10/10 wasn't going to work either, but 11/11/11 seemed just right. It gave us plenty of time to be sure we wanted to make a lifelong commitment to each other and plan the perfect wedding. The number one is also a great way to represent our unity. "One LOVE" was the perfect theme for a fall wedding...

It also gave us plenty of time to thoroughly do our research. In my research, I sadly discovered it is not in our best interest to get married. This is the part where it gets complicated, so pay attention. I am disabled (totally and permanently). I rely on social security to pay my rent, pay my bills- and well, pay for everything. It’s the only income I get, and it’s not even that much. I am so grateful for what I get, without it I'd be totally screwed. Seriously. I became too sick to work at the young age of just 23, but did not even get social security until I was 27. They determined my benefits by my short work history. I receive both SSD (social security disability) and SSI (supplemental security insurance). By receiving SSD, I qualify for Medicare and by receiving SSI, I qualify for Medicaid. The SSI program is a "needs" based program. I get SSI because my SSD only pays so much (or so little) because of my short work history. Are you confused yet? I am a little- just trying to explain it! But what I am getting at- is that if I were to marry anyone I would lose my SSI, because I wouldn‘t ”need” it. This is because they will consider his income to determine how much I get, and he doesn’t need to make much for me to lose SSI (basically, they say 1+1 = 1 ½ instead of 2). It’s often referred to as the ”marriage penalty.” If I lost SSI, I would lose my Medicaid. If I lost Medicaid, I would lose Medical Motors services that bring me to my zillions of dumb doctor’s appointments. I know what your thinking- just drive yourself! The awful truth is when I need to see my doctors I am often unable to drive myself (due to my disability). If I were to ever need a home healthcare aid (these are things you need to consider when you are disabled), it would cost thousands of dollars out of pocket without Medicaid to pay for it. If I had to have surgery Medicare would pay for some of it, but it would still be very expensive, with Medicaid it would be paid for in full. Medicare has all sorts of spend-downs, deductibles, and ridiculous co-pays, that I hardly need to worry about with Medicaid. So, not only would I lose much needed monthly income (potentially hundreds of dollars), I would lose numerous other services that I need, if I were to marry the person I love. It’s too much to risk, and just not worth it. We would loose what little financial security we have. In fact, according to social security if a couple is ”presenting themselves to the community as husband and wife—they should be considered married for purposes of the SSI program.”*(see below for link) My lawyer said this even includes posting your facebook status as ”married.” Or even casually referring to each other as husband or wife. We can wear (promise) rings, but we can‘t call them wedding bands. There can be no walking down the aisle, no public exchange of vows, no ”you may kiss the bride.” Basically, what it all boils down to is- we just can‘t get married. We can‘t have our dream wedding. We can‘t even pretend we are married.

We can still spend the rest of our lives together. We can still LOVE each other. We can still throw an epic party with all our friends and family. (Just don‘t call it a wedding!)

We can also raise awareness about the ”marriage penalty.” And maybe, just maybe, we can can abolish the ”marriage penalty.” We are not the only ones affected by this; there are millions of disabled folks in this country. How many are suffering financially because they are disabled (and rely on SSI) and married? This can be a real crisis when both husband and wife are disabled. Surfing the web, I found the saddest stories of couples forced to divorce just to make ends meet, because they became disabled after being wed or were uninformed. Other couples have been waiting decades for policies to change. It seems like the ”marriage penalty” is discrimination against people with disabilities. Maybe leftover from the days when it was illegal for people with disabilities to get married? Yes, you read that right, it was against the law for people with disabilities to get married until the 1940‘s. And just like back then, when they changed those discriminatory laws, we can change these policies too. But none of that will happen if no one knows it’s a problem. Marriage is a human rights issue. Marriage should not be about money, it should be about LOVE! But it all starts with awareness. So, now you know ;)

***For the record: Bob and I are boyfriend and girlfriend, we love each other very much and its going to stay that way for a long, long time.

*http://www.ssa.gov/policy/docs/issuepapers/ip2003-01.html