I started a new facebook page mainly trying to spread some awareness as I learn about EDS and the other issues I’m learning I have.
How I found out about EDS.
From the time I was little, I always remember walking around with what felt like a bad sprained ankle. I was always twisting it, so I had no idea it wasn’t sprained. I also have hips rotated backwards, so my feet and knees stick out to the side. I could never run very well. I’d end up twisting my ankle. Even with all that, I never went to the er nor the doctor often so I didn’t think anything was wrong.
I also have always had a nervous habit of bending my pinky fingers sideways to my pointer and just holding them in that position, it was something to do with my hands (I have also had anxiety since I was very young) and I lived by the belief that everyone could do it. My thumb can lay flat against my wrist/arm and I can turn my feet backwards so they’re straight behind me. No one ever told me that (along with the aches and pains that went with being hyperflexible) was strange.
Fast forward, I just had my first baby. I developed severe pre eclampsia over the course of less than a week and had to have her at 28 weeks. We were in the NICU and while she was there, I welcomed every study they asked me to do. One was testing flexibility. That was when I first heard the phrase “hyper mobile” and scored almost the highest score you can get. It blew my mind because I thought you only were flexible if you could bend your pinky to the back of your hand (I can’t, mine goes sideways) and if you could touch your toes or the floor (my hip dysplasia along with arthritis makes it too painful). I started looking into it and found it was, in fact, odd.
Fast forward five years. Baby 1 is now 5 years old. We took her to a specialist due to very early onset scoliosis. I showed him my joints and he said it looks like Ehlers Danlos. I had my doctor confirm it a few days ago.
In a way, I’m glad I didn’t find out until after I had all 3 kids. I am really not sure if I would have chosen to have kids had I known about this (and others I’ve been diagnosed with that I’m going to go into in another post).
It feels almost selfish, although the specialist said my oldest doesn’t appear to have it- and I’ve had several professionals confirm there really isn’t a great test for hypermobility type EDS- it goes off appearance mostly. I mean, genetics are a crap shoot anyways but it feels like I put two kids on this planet to deal with (mostly mild- at times up to severe) pain for their lives.
The pain gets easy to manage. I wouldn’t know what to do if I woke up one day completely pain free (I’d love it, though). When you’re born a certain way, your body compensates and conditions itself. You adapt to chronic pain so you know nothing about normal. It still isn’t something I’d wish on my kids and I hope neither inherit it, my oldest’s specialist said she doesn’t appear to have it, but I’m watching my toddler’s feet. So far, they do seem to stick out and that seems to be one sign.
Being a taboo parent- I don’t want sympathy. I just want to be able to talk about all my kids.
Being a special needs parent shouldn’t be as isolating nor as awkward as it is. If you have been through a long term nicu stay, it should not be met with awkward sympathy nor should it automatically shut other parents up. I mean, yes, back when I was living at nationwide children’s hospital alone with only my infant, it did get depressing to see how many people came and went. It was a bitter sweet thing to see so many people make the going home announcement while I was wondering when would it be our turn but she’s out now. She’s out, she is healthy and most importantly she’s a survivor. We don’t want sympathy for what she went through. We’d rather have excitement that she made it.
Of course, when you’re the parent of a special needs child meeting other parents who are comfortable around your child is also a challenge. My daughter is and isn’t special she is now 6 and in 1st grade, she’s able to read starting to write and her speaking is finally starting to make more sense. It still gives me anxiety when she’s around other kids. We’re trying to teach boundaries but she’ll still go up and point out an animal or character she really likes on a kid’s shirt. I’ve seen nervous looks on kids’ faces. I do know the ones who are around her on a regular basis like her. When she was in preschool her classmates got excited to see her and I’m still recognized as her mommy. I guess it’s projection from when I was made fun of as a child for walking and talking so different. There are obstacles dealing with lifestyles as well. We see several specialists throughout the year and a few therapies for 1 hour 2 times a week, add that to school work and toting around a fully healthy toddler and meeting people is even harder. I haven’t found baby and me classes near me nor have I found mom meetups like I have read about. Maybe my town is too small, maybe we’re all too busy or maybe I’m just not in the right network to find them. On top of having a premie with a nearly 1 year nicu stay, we also lost our 2nd baby to a deadly birth defect called Anencephaly.
If you think a long term NICU stay is stressful, try being told that this baby, the next baby, the one that you really want to add to your growing family, the baby that you were really excited about is not going to survive. Not only that, but the baby has a severe birth defect that affects the way the baby looks. You read online and you look up the condition and everything that you see is just people disrespecting the babies calling them such horrible names and everything. It just ends up being too much and you are even afraid of mentioning what the defect is called. Amazingly; on the same day, in the same room, in the same hospital, another woman ended up getting diagnosed with the exact same condition. I went home that day, looked it up on Facebook and found a large support group for the defect. We were discussing where we were from and she and I just happened to meet. We spoke on Facebook and teamed up for the March of Dimes. We both do the march every year in both of our babies’ honors. I bet it’s going to be a lasting friendship because of the way that we met.
I’m at a point now with trying to meet people that when I talk about my 2 living kids I feel guilty if I don’t mention one whom I lost, but when I mention her, it brings awkward silence. I have been reading more blogs and more posts and seeing more pages in social media that are trying to break the silence of baby loss and make it less of a taboo subject, but until that day I guess just mentioning that you lost a child will bring the conversation to a close.
It’s not that those of us who have lost babies are wanting sympathy we’re just wanting to find a way to keep the memory and to mention “Hey she was alive, she was here but now she’s not.” It really shouldn’t be so difficult for people to bring up in discussion and it shouldn’t be difficult for those of us who are raising babies who had an extremely rough start; or those of us who have gone through the nightmare of losing a baby to meet other parents and actually have conversations without the conversations turning morbidly serious. Yes, my daughter almost died multiple times. She and I both did. She did have an extended NICU stay and she did have to have multiple surgeries but she’s here now, she’s alive, she’s healthy, she is very happy so why should we be expecting sympathy? And I mean yes, my middle daughter would be 4 years old, she would be going into preschool now, she is not here but she did exist- she was born, she lived and she died. It has taken us a while to accept it. It happened and we had to accept it. We can’t just live in the past and still be depressed with 2 living children who depend on us and depend on us to teach them how to handle the cycle of life and death.
Why does it make people so uncomfortable to discuss? Why does it kill conversations when you’re just trying to mention your other child’s existence or are joining a conversation about pregnancy? I try to keep from mentioning my first 2 pregnancies when I’m speaking with a woman who is pregnant with her first and nervous but talking to friends, I don’t understand why it’s either “I’m sorry” or another way of showing sympathy when the first little girl is healthy and happy now. Skinny, but healthy.
I hope the efforts people are making work and one day talking about less than perfect pregnancy experiences aren’t the taboo subject they are. There are women and men suffering in silence and talking openly helps people newly walking that path see they’re not alone.
Sometimes dreaming is too personal and too close to home in it’s message for even the most talented interpreter to interpret.
That is normally where those of us who offer our services come in. I have yet to be told a dream I couldn’t interpret, until now. I had a strange dream last night and even though I can interpret the symbols, the dream seems to be giving me a deeper meaning and I’m unsure if I should attempt to interpret or if my subconscious would bend it to what I would want to hear. I would normally ask, but in my circle, I am the dream chick.
I wrote that a few days ago when I had the dream. Since then I have managed to figure the meaning out. The point still remains, though.
It’s about the same as it is for reading tarot or other divination methods. I’ll read for myself for practice but I still will go for a second opinion. Tarot, dreams, all the other methods of divination can all be great tools but they can easily be lost when you’re trying to do it for yourself.
Why is Facebook so much like a drug?
If you research “give up facebook,” “I want to quit facebook,” “I gave up facebook,” or any variation, you will find tons of articles, blogs or forum posts about people giving up facebook. Some people went as far as deleting and others just deactivated for a little bit then went back. There are tons of posts about facebook fasts but why do so many people want to give it up, only to slide back like a drug addict?
I can only speak for myself- I have been guilty of making a public announcement, getting close friend and family’s phone numbers or adding/following them on other social networks, deleting but creating a new profile- promising the next time will be different. It never is. I say I’ll start with just close friends and family-and my number will stay below 50. I’ll do well for a few weeks or months- then I’ll start getting requests from coworkers, former classmates and old friends I hadn’t thought about until I saw the name and I’ll add. I’m not sure why I feel guilty if I don’t accept a friend request from someone I know- I feel like I’m insulting them and I don’t know how many people take the network seriously so I am also afraid of deleting them. I do not want real life drama from deleting someone on my list, because real life shouldn’t be controlled by a website.
My last time deleting, I was very pregnant. I got sick of the site and deleted it.
Then I had the baby. While I was in the hospital, I was running through the list of everyone who wanted to know about when I had her, it was such a random list of family members I do not see often and former close friends I also don’t get to see often, I ended up recreating so I could neatly update. I went through the list and only added the people from the list. That small, intimate list lasted a few months- then requests started coming in. I know I could have easily denied but it has gotten to the point where I feel guilty for rejecting, even an old acquaintance I never liked- unfortunately there are no people like that. I actually like the 122 people currently on my list. I have been going through trying to get less than 100, but my list of exceptions is a lot longer than my list of deletion criteria but I don’t understand why deleting is so hard.
From what I have read in other blogs and forums, a lot of people use deletion as a last resort, only when people personally disrespect them. I also see posts about people cleaning up their list and deleting people who never talk to them and I understand that. During my last major deletion (went from over 150 to just over 130), I posted (people say that’s an annoying post) and asked anyone who didn’t care about what I post (updates mostly on how my kids are doing along with random rants dealing with either things I’ve saw or read and pictures of my latest pillows, my kids or my cat) and I got 0 people to delete me off their lists. I got more people who liked the status to keep me on their lists and on top of that, I’ve had a few people who never spoke to me mention they love the updates (my oldest was 3 months premature with an almost 9 month NICU stay- she’s 6 now and catching up in a lot of ways)
It has taken me nearly a week of writing this. I have deleted my business pages and my sale group, deleted local yard sale pages and am turning it into a more personal account. I’m currently deactivated for the next week while I do a paid one week diet trial.
I’m also trying to challenge myself to write- even a little bit, daily. On my breaks at work, I’ve been writing what I can and during my off time during nap time while my oldest is in school, I grab a notebook and try to get some extra writing done. I have a finished rough draft for a fantasy novel I’m rewriting and editing and I am also working on some writings I’m hoping to submit to some sites. I’m hoping taking a break from facebook will boost my off time productivity.
For me, facebook is a major time-suck and on top of that, it reminds me of the social life I no longer have. Not through my own fault nor any one else, my friends live all over the place and we all have either kids, full time jobs, are in school, married or some combination of the above and as late 20 to 30- something adults, it’s hard to get together to just catch up. Facebook is a great thing in some areas, I have got back in contact with my whole former group of friends from middle school and talk to my friends from high school and college occasionally and it helped me and my long time best friend who was like a sister, as well as family who live out of state so I am not deleting it, but I am deactivating for weeks/month at a time. So far, I’ve been deactivated this time for a few days and before that 2 weeks. The more I do it, the less I want to see when I’m on and the easier it gets so this may be the break that helps.
Thoughts from staying home with sick kids
So, for the past few weeks, we have been dealing with sick kids. They started with innocent colds. I came home from work about a month ago and started to develop a cold. It turned to bronchitis, which has been my norm since I was my oldest child’s age- six years. I’m now getting over the cold and never needed medication. Two weeks ago, they started getting colds. The colds turned briefly into fevers but my youngest had an appointment today and I wanted to hold off. My youngest’s fever peaked at my parents’ house last weekend but they quickly fixed it. I considered taking her in earlier but every time I thought about it, her fever was gone and she was playful. On Sunday, my husband had been feeling sick so I finally talked him into going into the ER. He found out he had pneumonia so I left work early and we took both girls to the ER. The results were that my youngest had pneumonia and my oldest has a sinus infection.
I took yesterday off work to help my sick husband take care of the sick girls and was off today. Today we had my youngest’s well child, both ER follow ups and my oldest had a dentist appointment along with that, my oldest had speech and occupational therapy and Tuesday is grocery shopping day. I swear, between bleaching down the kitchen (bathroom is next), throwing out any expired food, rearranging the food in the cabinets and cleaning all the table/counter tops, dusting, sweeping, vacuuming, dishes, making sure both girls ate as much as I could get them to eat and drink, I feel like I’ve had no time to myself. Even after they went to bed, I had an online tarot reading to send and the finishing touches on cleaning the kitchen. Now I’m still in that boat- I’ve been gone all day and my husband is doing the bedtime ritual so I’m finally getting a moment- before vacuuming and dishes once again. I can’t wait until all antibiotics are given and my girls are back to their playful and happy selves.
I’m trying this whole blogging thing out… again
I’ve always had issues sticking with a blog. I’ll start one, then it will just sit around for years until I finally remember it exists or try to create a new one and can’t use my main e-mail address.
Lately, I have been challenging myself to write a tiny bit every day. I have 2 finished rough drafts- 1 novel and 1 short story. The novel, I’m working my full OCD on because I am hoping to get it published traditionally. I also have a project I put together about 9 years ago testing self publishing.
In this blog, I’ll be posting random things I’ve been writing. I’ve written topics from getting married young to child loss to having young kids, special needs kids and random short stories that pop into my head so there is no one subject I’ll be posting about.