Category Archives: Parenting

Some words

I have 52 drafts in my blog. 52 times that I opened my blog and then gave up because I just couldn’t figure out what to say. That seems to be the story of my life. Eager on the start only to fizzle out and quit. Follow through has always been my weakness. Procrastination always gets the better of me and I resign the attempt to the black hole of “later”. I think it would be fair to say that one of my bigger flaws is always thinking there’s going to be more time. There always seems like there is so much time.

Until time runs out.

So here I am. Three years, three months, two weeks and two days from the last time I was able to finish a thought. It’s hard to believe how much has happened in what seems like such a short amount of time. My daughter is almost grown now. I’ve been promoted several times at work. I bought a house. I’ve made some incredible friends. I’ve been able to manage the depression and anxiety without medication. I’ve helped rescue a lot of dogs. That’s not to say that the past three years hasn’t been without its challenges. The kid’s dad stopped paying child support. My mom and I had a huge falling out and we’re just now starting to speak to each other again. And I got sick.

Since 2003 I’ve been treating life like one big “How to be an Adult” check list. I went to school. I got degrees. I started my career. I bought a home. I tried finding a partner, but failed too hard at dating and crossed that off the list. The next thing to address was my health. For years I’ve put my health on the back burner. Circling that black hole of “later”. I was always too busy and too broke to go ask a doctor why certain things were happening. But I was never too busy or broke to google my symptoms and diagnose myself with a hundred different cancers. Have a symptom? WebMD has a cancer for that. I went to a few doctors and got the same prescription to “take birth control pills and lose weight”. I’d start a pack of pills but then the side effects would kick in or the money would run out and I’d give up. My symptoms would get worse, I’d get depressed. I’d gain more weight, get more depressed and give up even harder.

Then my symptoms got worse. Eventually I couldn’t ignore it anymore so I found a new doctor. One very painful endometrial biopsy later and learned I have Complex Atypical Hyperplasia. There’s several different types of hyperplasia. I have the one that’s almost cancer or already cancer. Turns out WebMD wasn’t too off base.

So here I am. Two days from surgery. A total hysterectomy. I just turned 36. I thought there would be more time. I thought I would get my life together enough to meet someone to build a family with. I thought I could have another chance at motherhood. I thought I could give Jessica a sibling to look after her when I’m dead and she’s elderly. I thought if I did the right things and checked off the boxes on my list I’d reach that point where I had enough to offer someone and get a chance at happy ever after.

I thought I’d have more time.

And then time ran out.

I’ll never have a chance to experience a pregnancy that’s met with “congratulations” instead of “what are you going to do?” and “it’s not mine”. I won’t get to feel a life grow inside of me again. It’s easy to convince yourself that you don’t want something when you just think it’s not going to happen. I’ve spent a long time telling myself I didn’t want to have more babies because I was scared to have another kid with Down’s. But when the door actually closes, when the bridge actually burns, suddenly it starts feeling like the only thing in the world that you want. Suddenly everyone is pregnant and there are babies everywhere. People laugh when you say you want another baby. They dismissively say “no you don’t” like they have a clue and it hurts. You stand in front of the mirror pushing your stomach out remembering what it was like to have a baby bump, running your hand over the memory. You pour over your only child’s baby pictures and wonder how the hell 17 years went by so damn fast. Where did all the time go?

I’ve found myself falling deeper into my well of self pity drowning in the sadness of what I’m losing. On the outside I make jokes and laugh and pretend that I’m okay. But inside my house when everyone is asleep I fall apart. I get sad and angry that I have to go through this. It seems cruel and unfair. I get scared thinking about all the things that could go wrong. I panic wondering will happen to my daughter, my dogs and my house if I don’t wake up from this. Then the loneliness kicks in when there’s no one to hold my hand or hug me and tell me that this is all in my head and that everything is going to be okay.

Tonight is the last night I’m allowing myself to be sad, angry and scared. Tonight when everyone is asleep, I’ll lay in bed reminding myself how incredibly blessed I am. Instead of letting my brain think about about what I’m losing or what could go wrong, I’m going to focus on everything that I’m gaining by having this surgery. I’ll no longer be in constant pain. No more periods that send me to the emergency room. I won’t be at risk for endometrial, uterine or ovarian cancer anymore. No more painful biopsies. I wont be as tired all the time and my brain won’t be as foggy. I’ll be on the right mix of hormones so I can better manage my PCOS.

Tonight I’ll wipe away the tears. I’ll take a deep breath. I’ll fall asleep knowing that even though time has run out on me having more children, this surgery is going to make sure that I have more time to spend being a mother to the daughter that I already have.

And at the end of the day, I think that’s a win.

 

 

 

 

 

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Adventures in Welfare

Dear Texas.

Go fuck yourself.

Yea I had to get that out of my system.

When I was studying working poverty in school a lot of the material came from case studies. It was a common theme in these case studies that the application process for government assistance was a complicated labyrinth of paperwork leading to a lengthy wait for approval. Many people could go from barely getting by to homeless in the time it took for a food stamp application to be approved.

When I was in the hospital for the first surgery I applied for emergency medicaid. I was denied because my income was too high. At the time I was an unemployed student and my only income was my daughter’s child support and social security.  Apparently the state of Texas thought a monthly income of less than $800 was sufficient to finance a $30,000 hospital bill.

So imagine my shock when I was approved for TANF and medicaid.

[cut to back story]

When I applied for the food stamps I checked the TANF box just as a “they’re going to deny me anyways, but what the hell” sort of thing. Later in the process of applying for food stamps (technically it’s called SNAP, but I’m about sick of acronyms) I learned that if a person received cash benefits (TANF) then the state will recoup those funds from the absent parent.  In other words, if I accepted TANF then I was agreeing to forfeit the child support. Given that I’m getting $360 a month in child support, it made no sense to give that up in order to get less than that in TANF.

At this point I asked if I could just cancel the TANF application and keep my child support. Surely the state would be well up for not paying out cash benefits right? I was informed at the workforce orientation that withdrawing the application for TANF would also withdraw the application for food stamps and I’d have to start all over again. So I agreed to just go through the motions figuring they would deny me anyways. A week later I got a call from the welfare office and voiced my concern about the child support issue. The man contradicted what the workforce office said (these are two entities that really need better communication skills) and told me that TANF had nothing to do with food stamps. He said that I could withdraw my TANF application and keep the food stamps and my child support. He would mail me a form, I’d mail it back and bob’s your uncle. Problem solved.

No.

Somewhere in the span of three days my application for TANF was approved! Now I have talked with a lot of women in worse situations than mine who couldn’t get approved for TANF because their non existent income was too high. It’s common knowledge that it’s virtually impossible to get cash benefits in the state of Texas. It completely defies precedent that I was not only approved, but approved so quickly.

Time for some number crunching. Currently I get $360 a month in child support and $268 a month in Social Security. The state had already approved me for $300 a month in food stamps. With the TANF approval the state was giving me $110 a month in cash assistance and $200 a month in food stamps. I was losing $360 just to get $110!!

I called the welfare office and tried to get them to cancel the application (the form hadn’t had time to arrive in the post)  and take back the benefits but alas there was no hope. The best they could do was deny the benefits for September, but August was a done deal. Immediately that knot was in my stomach as I freaked out about how we’d survive August if we lost that much money.

I ended up filing a formal complaint. Apparently this formal complaint was against the man that worked up my case. I thought it was just going to be against the office in general. So he called me pretty pissed off that I was filing a complaint and trying to talk me out of it.

Surprisingly I got a child support check for the beginning of August. My guess is that the payment was processed before the child support office was made aware of my TANF approval. So I was fortunate to be able to pay everything that needed to be paid and have a few dollars left to put gas in the car.

The moral of the story is that the myth of the welfare queen is bullshit. There are no women sitting back raking in piles of taxpayer cash. No one is doing so well on welfare that they can choose it over working. Welfare is temporary. There are time limits on how long people can receive benefits, so the myth that women are spending their whole lives on welfare is bollocks! There are caps on how many children will be considered when approving the benefit amount, so the myth that women are just having more kids to get more money is also bullshit. The fact is that sometimes bad shit happens and people (mostly women) need a little help to get through it.  I didn’t apply for this because I was a lazy cow that doesn’t want to work. I applied for this because I had gotten to the point where my daughter was only getting one meal and a snack during the day and there was no where else in the budget left to cut.

This is only temporary. When I start getting really depressed about this situation I have to remind myself that this is only temporary. That a year from now this will just be one more experience that I look back on wondering how I ever made it.  Just like the broken relationships, the surgeries, the insanely hard semesters at school, this is just another hurdle that I will eventually get over.


Red Pill Blue Pill

There was an article about a father whose daughter had Down’s. He was a scientist and a mathematician and upon accepting his daughter’s diagnosis, he dedicated his life to studying the condition. After years of research he’s entering into clinical trials for drugs that will help treat adults with Down’s to improve memory functioning.

This leads me to the grand question. If someone developed a cure for Down’s, a little pill that would delete the extra 21st chromosome, would I give that pill to my daughter?

When you have a kid with Down’s you inevitably run into two or three groups of parents. The ones that the Down’s is a total blessing (the crusaders), the ones that think it’s a total nightmare and the ones that don’t have an opinion one way or the other.  I tend to jump back and forth between the last two.  I’ve never thought of this as a blessing. Not once. It’s always felt like a barrier that’s kept my daughter and I from really connecting. It doesn’t keep me from loving her, it has nothing to do with that. I think that’s an important distinction to make. It has nothing to do with how I feel about my daughter, but it has everything to do with how I relate to my daughter.  When I found out Jess had Down’s it wasn’t me I was sad for, it wasn’t my own loss that I was grieving. It was hers. I was so heartbroken over every possibility that had been taken away from her. And as open minded and optimistic as the crusaders want to be, the diagnosis of Down’s comes with instantaneous limitations.

But that extra chromosome comes with more than just certain physical characteristics like those curved  pinkie fingers, and those characteristic flat eyes.  It comes with little personality traits that are unique to kid’s with Down’s.  She’s unfailingly kind, trusting, and forgiving.  She has her bad days, just like any other kid, she can be a total pain in the ass, but unlike kids without Down’s, Jess doesn’t know how to hold a grudge. She has no concept of shame, or inhibition.  In Jessica’s world everything is happy and fun. There’s no such thing as anxiety, Santa is always real, and it doesn’t matter what label is on her jeans.

If there was a pill that could delete the extra 21st chromosome in those 3/10 affected cells, would it annihilate those lovely traits in exchange for giving her the ability to read, write, do mathematics and function at age level? If it did, would it be worth the trade off?

And what about Jess? What would Jess want?

I see how frustrated she gets when she doesn’t understand. I see how sad she gets when she longs to be included with the other kids. She knows she’s different, but she doesn’t understand how she’s different. It breaks my heart to see her struggle so hard with things that seem so basic. Simple addition and subtraction seems so monumental to her, spelling and reading are so hit and miss. I don’t even know if it would be possible to find out what Jess would want. Would she want to change? How would we even begin to find out? It’s barely possible to communicate effectively with her on anything of an abstract nature.

I would be exchanging my Jessica for another version of Jessica. Who’s to say the other version of Jessica would be better, and who’s to say my Jess would like being the other version of Jess more? It’s an ethical mine field. This isn’t a cut and dry “if there was a cure would you give if to Jess?” question.

But when all is said and done, I love my daughter, and I more than anything I want her to have the best chance at life possible. Unfortunately, being mentally disadvantaged isn’t the best chance possible, and so if someone had a cure I think it would be wrong of me to deny Jess a chance at a life free of this disorder.  And while there would be things I would miss (and even writing this blog, and thinking of theoretical possibilities is bringing tears to my eyes) about my darling perpetually youthful little girl, she would deserve an opportunity to really grow up and live her life.

And so I will continue to support Down’s research in hopes that one day they will develop treatments and therapies to help increase functionality. I doubt there will be a cure for chromosomal mutations, but if there’s a possibility that an Alzheimer’s drug can help my daughter learn to read, write, and do math on grade level…it’s a step in the right direction.


Cooking with my daughter.

Defrosting chicken in the microwave. 

Me: Go push start on the microwave

Jess: What numbers do I push?

Me: None. Just push start.

Jess: Yea but what numbers.

Me: No numbers. It’s already set, just push start.

Jess: No numbers?

Me: No numbers.

Jess: Just start?

Me: Just start.

Jess: Yea but….

Me: No but. No numbers. JUST START!

Jess: But…

Me: START!

Jess: I pushed it.

Me: THANK you.

Jess: No big.