I will not apologize for my feelings
when stepping on them
made you uncomfortable
I will not apologize for my feelings
when stepping on them
made you uncomfortable
I will wait because I know the one I have been created for will be worth the years I’ve spent in solitude putting myself back together.
You are not him.
Or maybe you’re just not him yet.
We’re both going through some things and just figuring it all out.
Oh how I wish we could be going through them and figuring them out together.
But there is a reason for this distance.
There are answers in this silence.
Maybe one day we’ll meet up again at the right place and in the right time in our lives.
Or maybe we won’t.
And if this is where we part, then let me wish you all the best and send you on your way.
Maybe you are just another bend in my journey that leads me where I’m meant to be.
A journey that leads me to the someone that was created and waiting for me.
So here we are again with a thought that wants to turn into words and no where else to write them.
For a minute I let something in my head. I let it consume me and make me feel confused, sad and small. Then I remembered who I am. I remembered how hard I’ve worked to get to where I am. I reminded myself that in the grand scheme of things, this is a blip on the screen and in a year this probably won’t matter.
For a minute it stung. I guess because it showed me that I wasn’t as ready as I thought I was and there is still work to be done to get to that point.
Two things I don’t give away easily: my time and my vulnerability. Because they are precious to me and I don’t want them wasted.
These things are emotionally expensive. And even though I’ve spent years building the emotional capital, I don’t think I can afford this yet.
It’s a numbers game and you’re not supposed to put all your eggs in one basket. But I don’t have the time or the energy to carry around a bunch of eggs in a bunch of different baskets.
So I’ll accept the moment for what it was and I’ll appreciate what it taught me. I’ll keep working on me and one day, I might be ready again.
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.
One year, one week and five days.
That’s how long it’s been since I graduated.
That’s how long it’s taken for me to finally utter the words
I GOT A JOB!
After I graduated I went through what can only be described as absolute financial hell. I lost over a third of my income. I went through a series of job rejections. I ended up on food stamps. At one point things were so bad that I would let my daughter stay up late at night, so that she would sleep late during the day in order to conserve food. We were down to a meal and a snack per day. Things were grim.
Then I got landed a job with a temporary agency. I started working at my old school as a financial aid technician. Slowly I started clawing my way out of absolute poverty. This is the closest I’ve ever been to financial stability. I’ve managed to establish some savings and even start paying on some student loans. I’ve been able to afford the little things that on the surface don’t matter but deep down they really do. I was able to buy my daughter everything she wanted for her school dance. I was able to pay for car repairs from savings and still have money left over.
The only down side is that I’ve been rather miserable. I hate my job and I hate my boss. She’s probably the worst boss I’ve ever had. She’s basically a condescending bitch that has never learned how to be an effective leader. Every day I go to work and waste 8 hours of my life doing something a trained monkey could do. Most of the time I do absolutely nothing. Even when I am doing something, I’m not doing anything that I went to school to do. I have still been applying for other jobs and still going on interviews. I keep getting the standard “You have no experience” or “You’re over qualified”. None of the jobs I’ve applied for are things that I really want to do. They have just been jobs that pay a decent wage.
But that’s all changed now!
Today I got the call with a job offer. They even offered me a higher starting salary than we discussed in the interview. Words cannot express how excited I am. I feel like I’ve finally arrived at where I’m supposed to be. I finally feel like everything is coming together.
I’ve spent most of my life not having a clue what I want to do. This past year has been such an incredible learning experience. I got to spend a lot of time just learning about me and I finally have a clear picture of where I want my life to go. Even better, I feel like I’m finally making steps in that direction!
I only have one week left at my job. Then I’m off on a new adventure in a new career.
It’s been a long time since I was this happy.
My little girl had her first real dance a couple weeks ago. She’s been to a couple school dances but they were just casual after school things. This was a fancy dinner dance. She had been looking forward to it for weeks. We spend two days shopping for the perfect dress, shoes and accessories. She took all her stuff to school that day and the little girls in her after school program helped her do her hair and makeup.
All the little girls were very excited for her. They’re all a lot younger than her (K-5th grade) and they’re at the age where they dream of going to school dances. Jessica loved being put together. By the time I got there she was absolutely glowing.
I drove her to the school and walked her to the door. The girls were all squealing with delight over glittering dresses and sky high heels. The boys were all awkwardly pulling at collars and ties. Parents were fluttering about like paparazzi.
In the middle of it all there was Jess. Twirling and smiling, she was absolutely caught up in the magic of the evening. We were entering a world neither one of us had ever been before. She was heading into a dance that had nothing to do with special education or her ALE class. This was all regular students and regular teachers. I was entering a world where parents drop their children off at 6pm and then pick them up at 9pm. This seems normal for parents with regular kids. But when your kid has Down’s this is completely out of the question. Jessica has never been with strangers. She’s always been with me or family or her class or daycare. This was my first time letting her go. My first time letting her be a regular teenage girl.
She walked into the glittering decorations and I stood in front of the door not really knowing what to do. One of the teachers invited me in to take pictures. Jess was already at a table chatting with a group of girls. I called her over and she says “MOM! You’re EMBARRASSING me!!!!” She reluctantly let me take a picture then told me to go home.
I sat outside for a minute. I worried about her being included. I was scared she would be sitting alone in a dark corner trying to break into the “normal” world. I forced myself to get in the car and go home.
And I waited.
I’m not sure time has ever passed so slowly.
When I got back to the school, the dance was still in full swing. One Direction blasted on the speakers as a hoard of teenage girls screamed “THAT’S MY SONG!!!!”
As I stood in the shadows hoping for a glimpse of my baby a girl came and asked if I was looking for Jess. She said that Jessica was having a great time. She told me Jess had been dancing nonstop all night. I fought back tears and told her that I had been worried Jess wouldn’t be included. She smiled and told me that everyone loved Jess. She said Jess had initially been worried that she wasn’t beautiful. All the other girls were in really formal gowns and Jess was in a simple dress. After the girl assured Jess that she was beautiful, it was all forgotten and Jess decided to jump in and enjoy herself.
Around that time the shimmer of a white skirt caught my eye and I saw Jessica dancing with a group of kids. I managed to sneak a picture of her. It’s not a clear picture but it’s probably my favourite picture. I look at this picture and it’s hard not to feel so overwhelmed. There was my little girl just being herself. Her happy go lucky in love with the world self.
I walked out of the dance and let her have the rest of her evening. This wasn’t the place for parents. This was for 8th graders enjoying their last dance as kings and queens of their school. Next year they will be freshmen in high school and back to the bottom of the pecking order.
I sat outside and marveled at the young lady my daughter is becoming. She is bold and fearless. She’s 14 years old and she has Down Syndrome but she’s doing something I never could at her age. She went to a social function and didn’t care that she didn’t have a date or a group of friends to go with. She wasn’t shy or over self conscious and she didn’t give much of a toss what anyone thought of her. She was just a girl that wanted to go dance and have fun. This is one of those things the Down’s couldn’t take away. There are a lot of things the Down’s robbed from us, but this wasn’t one of them.
This was a night where a young girl taught her mom that it’s okay to let go and that she’s going to be just fine in this big world.
I picked up Jessica from day-camp today. I stood there watching her play Just Dance on the Wii with kids half her age and size. I don’t think Jessica even realizes the difference. These kids are on the same level as her and they’re her friends. I think the kids are at that age where they know that she’s different, but can’t figure out why. They love being around her because she’s a teenager, in junior high yet still likes to play little kid games with them.
We got in the car and she started prattling on about her day and she usually does. This is where the autism kicks him. She has a life plan and she repeats her plan every single day, multiple times a day. Any every time she goes over her plan, it’s like she’s telling us for the first time. She’s going to go to high school next year. She’s going to be 14 and in “nine grade”. Then she’ll be 15 and in “ten grade” and then 16. When she’s 16 she’ll get a computer. Then she’ll do “gradulations” after “twelve grade”. I go a long with her plan. All these things will happen. Though I’m not sure the computer will be pink with flowers, but she’ll certainly get a computer. Maybe it’ll have flower stickers.
But then she continues her plan. She’ll go to college. She’ll go to St. Mary’s and study math and science “just like you mommy”.
That’s when I get a lump in my throat. I try to fight back tears and suppress the anger at the damn 21st chromosome that will roadblock this plan.
When you’re pregnant you have all these hopes and goals for your baby. You dream of making sure they have things better than you did. You want them to know that the world is wide open and that they can do and be anything they want. And then the doctor tells you that your daughter has Down Syndrome and it’s like her potential was cut off before she was even out of the NNICU.
We have to work on her transition plan. They sent home assessments where I ask Jessica where she plans on living after high school, where she plans on working, if she plans on going to college etc… And it all just seems so cruel.
I’m friends with people that have kids the same age. They’re doing the same transitions, making the same plans, but they don’t have an extra chromosome holding them back. While I’m genuinely happy for these kids and their parents, it still stings. It still feels like she’s been robbed, like she’s had her dreams taken away before she’s even been allowed to dream them and that hurts. It’s even more painful because she doesn’t know.
She’s going to finish high school and expect to go to St. Mary’s and I have no idea how to tell her that it’s not going to happen.
I went to school and got degrees because I wanted to be a good role model for her. On the day I graduated when she said she was proud of me, it was the greatest moment of my life. And now my little girl wants to do what I did. She wants to be like me and I feel like I just set her up for disappointment.
There isn’t a “What to Expect When Your Kid has Down’s” book and no one ever tells you about this part.