I wish I would have kept up with this blog a little better than I have. There are so many things I would’ve written. I guess it’s a good time to bring my blog up to speed on a few things and then begin the new year fresh with a list of plans, goals, what have you.
Let’s see. My son, Tyler, graduated from the University of Maine with a Bachelor’s degree in finance with a minor in political science and something – I forget – but he found an internship with a financial business before he graduated. They weren’t offering one, mind you, he just approached them and asked if they might have an opportunity and they created one for him. Then, when he graduated this past May they offered him a full-time position. They’ve sent him to couple of training conferences and paid for him to get certifications. He is doing well. He found himself an apartment downtown close to work. He’s a grown ass man now and I am very proud of him and his accomplishments.
I am proud of Jamie, as well. Earlier in the school year last year she had some boy, friend, and grade issues and I started to heavily monitor and crack down on her phone and social media usage, and talked her through some difficult things. This year, her grades are up and she seems to be better adjusted to high school and teendom overall. She’s turned into a “quiet one” with some close friends. Unlike me, she has so much more freedom and opportunity than I had at her age. She has been in the same school system since kindergarten and lives so close to the school. I wish she would realize how lucky she is to be able to take advantage of being in such close proximity to her school.
It’s been a long road with Sarah but she is currently doing well. We have been through it all with her. Multiple heart caths, open heart surgery for aortic valve replacement, acute renal failure, ureter repair, another heart valve replacement – her pulmonary valve this time, sleepless nights, poop smearing, endless diaper changing, feeding, walking, chasing, crying, and questioning the meaning of life and karma…
I used to work full-time at the hospital and made decent money for someone who learned on the job and worked her way up from receptionist to genetics secretary/transcriptionist to coordinator of genetics specialty clinics with only a partial college education. I worked with parents of kids like Sarah. When I became pregnant I remember having a fleeting thought and saying to my co-worker, “working in genetics has been a real eye opener, I never knew all of the things that could go wrong, I hope working here doesn’t jinx me.”
A few months later, an ultrasound showed heart and kidney defects. Soon after, an amniocentesis confirmed a genetic disorder was to blame. Ring chromosome 22. I believed karma was at work, here. I had jinxed myself. Here I was, becoming one of the parents I worked with. These parents were usually divorced and stayed home with their kids because appointments and therapies had taken over their lives, and they barely made ends meet.
I worked until Sarah completed Kindergarten. She went to regular daycare and then when she started preschool at United Cerebral Palsy, she went there half a day and daycare the other half. She had all of her needs met except for speech therapy. For this, I left work for a couple of hours once a week to pick her up and take her. (This was fun: Drop off hub, drop off Sarah, go to downtown parking garage, bus to work, two hours later, bus to garage, pick up Sarah at daycare, take to speech therapy for one hour, take back to daycare, back to garage, bus back to work for the day.)
After Kindergarten though, we didn’t know what the heck we were going to do with her. Summer school only ran for five weeks, for three half days per week. We didn’t find this out until about mid-April. I weighed the options and decided it wasn’t worth it for me to work just to pay a special caregiver – one I could trust with my non-verbal, special needs daughter – so I quit my job to be home with her.
Ron was doing fine supporting us on his income but I got to the point where I wanted to get out of the house and wanted to earn “fun money” for us. So the following year, I found a new job, just part-time, and that worked out well with Ron’s new schedule. I was there for a month shy of three years.
When I started there, I felt empowered having a job I didn’t really need. I negotiated my starting pay, I negotiated a different starting schedule over the summer and then the regular schedule once school started. I was motivated to take over the office. I wanted to do great things, I wanted to move up.
Then I was promoted. It didn’t take long before I realized I hated my new position. I no longer felt “cut out” for ambition and an upward-moving career. Things were rough at home. Ron’s schedule changed again and he was working overnights. We had to be quiet during the day when we were home, which is impossible for Sarah. During the summer, Ron worked all night, slept for a few hours then had Sarah in the afternoon when I went to work. By winter, Ron had stepped down and went back on days. We needed my income now, but I was calling out for sick kids, snow days, trying to juggle kid coverage for school vacations. Things were stressful. I stepped back down into my old position. Then summer came around and we were faced again with “what do we do with Sarah?”
I interviewed a couple of girls from Care.com. Babysitters for special needs kids want a lot more money. I was only working part-time as it was. I could only afford a babysitter if I worked more. I didn’t trust anyone to do the job anyway. Not worth it. I quit with my last day being Friday June 13th. One month shy on being vested in my retirement account, too. Dang it.
It was so worth quitting my job, though. We had a wonderful summer. We went for walks, went swimming at the beach – one of Sarah’s favorite things to do, went to the downtown music festivals and some of the Waterfront concerts. Another thing she loves – music.
The big thing we worked on was potty-training. Let me remind you, she is eleven. She had gotten to the point where she constantly had her hands down her pants when she peed and even when she pooped. If you didn’t catch her in time, she had what we lovingly call a “poop storm”. Those are dark moments I would rather forget. We worked over the summer and now, she is on a potty schedule, stays dry most days and pees on the toilet almost every time we take her. Sometimes we catch a poop but when we don’t and she goes when she’s playing in her room, she’ll come out to get changed.
There was a time when we couldn’t have company over and visit, couldn’t get a word in without interruption, without getting grabbed by the hand to walk up and down the hallway. She was constantly moving from the moment she woke up until the moment her head hit the pillow and that’s no exaggeration, and she needed constant attention. There was a phase where she had to wear a helmet because she would constantly smack her head or bang it on the walls and windows as she walked around.
But now she’s so calm. Christmas was relaxing for a change. She will sit and flip through a magazine or examine a toy for what seems like hours and I will tell you, between the potty training and the calm demeanor, she’s like a whole new kid and life is a lot less stressful.
As I was writing this post, Sarah came out from her room, went into the kitchen, opened the fridge, got out the jelly, took it to the counter by the toaster, and made the sign for eat. She’s been doing the sign for eat for the past few days now and she never really took to signing before. This, along with everything else, is a huge step in independence for her. You have no idea. This is huge.
Through all of this, I have been taking classes full-time as well. I couldn’t do this without Ron taking care of Sarah every moment he’s off from work. I have one more semester to go for my Associate’s degree. From there, I don’t know. I don’t know if I’ll be able to find something in my field that coincides well with my home life, but I’m hoping. There are remote jobs. That’s part of why I went for CIS. That and I enjoyed it in high school and I just love working at the computer, creating things and making things work.
I don’t know if I’m doing this more to have a career I can work around Sarah or because I’ve tried several times and failed, and just want to be able to say I finished a degree program. Even though it’s not a Bachelor’s degree, I’m finishing something successfully. So far, I’m pretty proud of myself and of Ron, too, for putting up with me.
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