Posts Tagged ‘Friday’


… Recovering in a manner that is nothing short of a miracle.  And SHE is the focus of this blog entry.  Issy is important.  Issy is special.  Issy is the one that needs support, along with her father.  Issy is the one that deserves prayers.

In a situation that could have already ended tragically, this sweet girl is showing strength and improvement day by day.  Her father, Matt Stapleton, posted on the Team Issy Facebook page on Sunday with this amazing, incredible update:

…On Friday, after three days in the ICU, she was still unresponsive and had confirmed brain damage. After not seeing any changes in her condition, it was decided Friday evening to remove Isabelle from the ventilator. She responded by breathing on her own for the rest of the evening. The following morning, she awoke from her four day “coma-like” state asking questions, making requests, and quite incredibly, showing signs of the amazing young woman she is. For three days, she was hooked up to machines and showed very little progress. Fast forward 24 hours and we are out of the critical unit, completely independent, and beginning discussions about the extent of her brain damage. She has smiled and is now walking and talking. It is nothing short of a miracle. While she still has several obstacles to overcome, we are extremely hopeful with this unbelievable turn of events. … [go to FB to see the full update]

If you’ve watched the news or are in the Autism Community then you’re likely aware of who Issy Stapleton and her father are.  Issy is a beautiful 14 year old autistic girl that was in a coma for several days when it was unclear if she would survive or come out of the coma.  The coma is due to carbon monoxide poisoning .  Issy has suffered brain damage due to the carbon monoxide poisoning which unfortunately was not an accident, but a murder-suicide attempt by her own mother.  Issy still has a long road ahead of her, but luckily she has a loving father and family who are there with her every step of the way.  A father who adores her.  Lissy is resilient.  She’s SMILING in spite of what she’s been through.  She’s responsive.  She has been able to make requests and show her personality when Friday, she was in an unresponsive coma.  She’s out of the critical care unit as of Monday, September 9th 2013.  This is joyous news and truly miraculous.

Lissy is alive and smiling.  She’s alive and her family is happy that she’s alive.

WARNING:  What I talk about next may be a trigger for some because it does involve discussing attempted child murder.

I also feel like I need to address the fact that the woman that gave birth to her recovered well enough from her own carbon monoxide poisoning to be in jail on charges of attempted murder, being held without bail.  It pains me to even admit that I occasionally used to read her blog.  I won’t share the link because I don’t believe she deserves any further attention, and there’s absolutely no excuse, explanation, understanding for what she did.  There’s no one to blame except for her.   Period, full stop, nothing anyone can say to get me to empathize with her.  This is one topic that I AM closed minded about.  If you believe differently, I honest to God don’t want to hear it.

There has been discussion around the internet about Safe Haven laws for situations such as Lissy’s except for the fact that only one of her parents to end both her daughter’s and her own life as a permanent solution to a temporary problem.  She did this on her own… Matt Stapleton by all reports was surprised at his wife’s actions, concerned by a message she had left him that prompted him to go search for them.  This is a woman whose husband is a school principal and knows the school system.  Do I even need to point out the implications of putting a special needs autistic child into the state foster system at 14 years old?

When you have two parents in the home and one is feeling “battle fatigued” and symptoms of post traumatic stress disorder (oh, have I been there) then communication with your spouse and others in your support network is imperative. SHE HAD THAT.  She didn’t call 911.  She didn’t call a suicide hotline.  She didn’t call her psychiatrist.  And rather than viewing this as the system failing her with a temporary setback, she stewed on the those issues for a couple of days and she deliberately chose her actions.  Actions which clearly stated,

“My way or no way at all.”

No, I can not identify with that at all.  I can not empathize with that at all.  Not when it comes to parenting, and not when it comes to parenting and advocating for an autistic child.

And so Issy deserves to be known for how amazing she is.  Not for the burden her mother had to carry in her advocacy.  Issy deserves to be known for her strength and her smiles and her love for her family.  She deserves to have it known that her father has been fighting for her since he found her, that he’s been by her side praying and asking for prayers from everyone he knows and those he doesn’t.  I wonder if he realizes just how many lives his daughter has touched.

I pray every day that she continues to improve and gain strength.  I pray that whatever brain damage she has, it’s minimal.  I pray that her community rallies around her and her father.  Amen.

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There’s a catch in my throat that won’t go away.  It’s as if my body is currently set to the default of Ready To Cry.  I laugh a little more loudly than I should at things that are funny… or are trying to be funny.  I laugh at every silly thing my daughters say and do, even if it annoyed me before Friday.  Laughter sounds and feels strange to me, right now.  It feels out of place.  It feels wrong.

Today it’s a drizzly, freezing cold day.  It actually feels like the weary world is weeping to remind us to slow down for a while.

At the same time, I know that for my children I need to keep my smile.  I can’t hide it or be stingy with it.  I can’t jealously guard my children and tuck them away from the world.  I can’t let my anxiety get the best of me.  I need to show them that even if we don’t feel especially happy right now, we can still feel joy and anticipate happiness in the near future again.  Maybe even now.  But then again, I have that luxury.  I can pick up my eldest daughter from school and get my other two daughters off the bus.  There’s no one to tell me that I can’t take them home ever again.

As a human being, Sandy Hook weighs heavily on my heart.

As a mother to a seven year old, Sandy Hook has decimated my heart.

All too easily, I can imagine being a Mother of Sandy Hook.  The children there are children of Connecticut… of the nation.  The women who gave their lives that day are heroes, every single one of them.  They gave their lives for every child that attended their school, giving them precious moments to try to get away.  Those women could easily have been my own daughters’ teachers, who show my children care and love and compassion every single day.

And so as I sit here this evening, writing this entry after a very somber work day, I watch my children watching TV with their dad.  I watch one of my daughters putting together a new game she received as a Christmas gift over the weekend.  They should all be doing homework.  I should be on top of them, nagging their butts to get going and finish so that they have the entire night after supper to relax.  To be honest, I won’t feel guilty if they don’t finish it tonight.  I’ll feel guilty if I force it by going into bitch mode.   At the Christmas party over the weekend, I didn’t make sure that they ate a good supper before filling up on cupcakes, chocolate, cookies, and chips.  For breakfast yesterday I let them have reindeer ornament “pops” that we made (look it up on Youtube or Pinterest; marshmallows, chocolate, pretzels).

Don’t worry.  The sugary part of my current parenting won’t last the week.   Okay, fine, and neither will the “not forcing the homework” part.  I’ll make sure that I half-heartedly encourage them to do it tonight.  And tomorrow.  But I won’t enjoy it.  For now, I’m going to parent irresponsibly.

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Puffs

 

If it’s not the girls, it’s me.  Over the past month two of the girls were sick with their own thing, and now it’s me.  I felt it tickling on the way home from Thanksgiving festivities.  I knew it was a good likelihood last week, I’ll admit it, but only because I had a really bad pain flare-up and the girls were sick.  I lost a good couple handfuls of hair and my eczema flared up.  My appetite has decreased while the pain my joints and muscles has increased.  It’s been harder to stay asleep too.  When all of these things start, it’s no surprise that my immune system would crap out.

 

So far it’s mild enough that Mucinex-D maximum strength is working.  Thank God he created the person who thought up Puffs Plus.  I love those things.  I also love the Ricola people for their Cherry Honey drops.  They had the least amount of menthol in them, and no eucalyptus.

 

If you pray, pray that this remains a crappy cold.  A sinus infection this early in the season would suck, and I’m not ready for that.  I don’t want to be sick.  I don’t want to take sick days.  I don’t get paid for sick days.

The Mister has to work tonight, so maybe I can convince the girls to go to bed early.  Then I can sneak a heater into my room with some green tea and a book and DVR my Friday night shows so that I can watch them when I crash tomorrow.  I’ll bribe the girls with pizza and hot cocoa.

 

 

 

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Manage My Pain Lite app

I have an app on my phone that helps track my fibromyalgia symptoms.  I added it last week.  It’s called Manage My Pain.  I got the Lite version, which is free, but still very detailed.  It has things in it that I didn’t think of or forgot were related to fibromyalgia.  It’s a great app.  I just have to consistently remember to enter my symptoms as I have them.  I found the app on Google Play. [edit: I forgot to mention that if a symptom isn’t already suggested in the app, you can add it in to the list yourself. It’s very easy to add things into the app as needed.]

Speaking of symptoms, the fatigue has been hitting me like a Mack truck.  I feel it hit me at 2:30 and if I don’t lay down to nap, I find my eyes burning and nodding off.  It’s a good thing I’m waiting for the paperwork right now to go through in order to go back to my new job.  It’s been going on daily since Friday or Saturday.  When I get the nap, you would think I wouldn’t sleep through the night but I’m still sleeping very solidly through the night.

Chronic Fatigue … I wish I could shake it.  It shakes off briefly when I do an activity, but it reaches a point when I can’t ignore it and the distraction of the activity, the momentum of the activity simply doesn’t work.  Everything becomes too heavy, tired, slow, aching, and so necessary to simply sleep.  CFS.  It’s hard to explain to people that it’s not laziness.

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English: Animated global map of monthly long t...

I’ve been lacking in posts for the past week because I’ve been a bit busy, and because since school started back up after the holiday vacation it’s been difficult for Gracie.  I’ve also had an increase in pain issues with the weather changing to colder temperatures.

She’s not eating well and is much pickier than usual, and when she does eat she’s not eating much.  She seems to be adjusted at school but when she’s at home the anxiety is visible.  She’s been a stimming machine.  Her sweet little doll face and its little baby voice … the same words and questions and phrases reassurances over and over and over and over and over and over and over and over and over and OVERRRRR! I adore her to pieces, and I love it when she’s happy and verbal. But the perseverative behaviors are killing me and I don’t think I can really count the stimming as being “verbal.”  Of course, hearing her giggle when she’s stimming silly words and phrases makes it tolerable longer but you can only listen so many times before it just becomes am annoying meaningless sound.  Shouldn’t I be able to tolerate that?

I’ve been hearing a lot of, “I don’t like that! No one likes you!” when she doesn’t like being chastized or has been told something she dislikes.  I had her eyes tested this past Friday and it turns out that she’s farsighted and needs glasses.  She’s wanted glasses for a couple of years now because she loves how she looks in them.  This works out, I guess! Because of her seizure disorder I made sure to add in the Transitions Lenses so that she doesn’t have to change to sunglasses.  Her eyes are so sensitive to the sun and even with medication she still gets absence seizures with bright, bright sun and strobe lights from low sun through the trees.  She’s been very upset that she has to wait for the glasses to be made.  You can’t even say the word “glasses” in any context or The Glasses Saga continues with a half hour episode of drama.  I have to ask her if she wants her chocolate soymilk in a CUP, not a glass.  Yeah.

This is one of those times when a better concept of time would be greatly helpful.

Oh! What fantastic timing! The optometrist’s office just called and the glasses are ready!

We’ve also been getting Eldest Girl back on track (again) with her school work and homework.  She’s realizing that getting her work done and getting good grades feels good.  That’s progress.

As for the pain… let me just say that I hate Winter.  I know, I know… I live in New England and I ought to suck it up.  I’ll tell you something, though, I have never liked Winter.  I’ve tolerated it (barely) my entire life because I haven’t had a choice.  I was born and raised here without any input.  🙂  My entire family, as well as my husband’s family, lives here so we have strong ties here.  The chances of getting The Mister to agree to move to a warmer climate are slim at this point in time.  I may have to wait until I’m old and creaky creakier.

Below freezing temperatures are not kind on my body.  You would think that with some extra padding aka fat on my bones I’d be better insulated.  😉  Nope.  Frigid temperatures still manage to tighten up the muscles and make my joints and bones feel brittle, sore, bruised, and battered.

My point is that after several days moving to weeks of gradually decreasing temperatures including a few days of temperatures in the low 20*F’s and teens with wind chill factors in the 0*F’s and below it’s so hard on my body.  It can get much colder, which is always worse, but as it is we’ve been spoiled.  I’ve been spoiled by the “extended” Autumn temperatures and have been grateful for them.  For instance, no snow! It’s been raining since around midnight last night when if it were just FOUR degrees colder it would be snow that I’m glaring at out my window! It’s snowing (or was) just a couple of towns over.  We’re lucky that it’s not icing out there right now.

I keep saying I’m going to do this, but I need to get my gratitude journal done.  I have one in drafts that I keep forgetting to finish.  It’s time to rejuvenate the positive language.  I just realized how negative this entire post sounds.

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