I don’t want to talk about it

We are home from Cleveland. We actually got home on Saturday. We had a drive home that was un-eventful for Ryan and very sniffly and angry for Micah and me. We stopped at our favorite haunts, ate too much junk food and talked a bit.

I didn’t want to talk. I still don’t, but we had to process the trip. We both had to sit with it before we could share it. We had to fall apart and then get our tough shells back on, because once we share it, then the questions and phone calls will begin. All well intentioned and well meaning, but those conversations will make us deal with our news and live in our news, and I, more than Micah, am just not (even now) ready to talk about it.

We are dealing with it. We are caring for Ryan as instructed and talking to her Teachers and Therapists as we need to, but to be honest I haven’t spoke out loud to anyone yet. Even those who I know love me the most.

I have been accused of making all of this about me, of becoming a shell of my former self, of relishing being a pity party and that haunts me as well.  When you share your life, some people feel free to be really mean and judge you and quite honestly these cruelties, veiled in concern have affected me more than I would like and so I am afraid to share, because in the scheme of things that we have been through the news isn’t that bad.  The bad is that it is more fucking bad news and I am so exhausted from getting bad news and being afraid all of the time.  I am tired of having to be strong.  I don’t need pills or a Doctor to help me with this

I need the bad news to stop and I need to embrace my child who has a feeding tube, asthma, Autism, crucial parts of her brain missing, who is non-verbal and globally (which means a ton a ton a ton) delayed.  That was enough, more than enough and I accepted it. I just want her to be a fucking grocery store bagger one day, and now that may not be possible and I can’t bear it.

I don’t need to know that her new EEG is showing that her brain is spiking as she sleeps.  That these spikes are seizure pre-cursors and will require more meds, not less.  I don’t need to hear that the spikes aren’t letting her rest enough and aren’t allowing her development to increase. I don’t need to have to go back to Cleveland for monitoring again this summer and follow up with blood tests (due to increased meds) in between.  I don’t need any of it.  I need enough to finally for once and for all be enough, because our enough is more than enough and more than most people will ever have to go through with their kids at all, and she is only 4.5 years old.

I don’t need the judgements, or the faces, I don’t need the I’m sorry’s. I need the bad news to end and for now, I need privacy and latitude and an embrace, not platitudes and words regarding Ryan’s warrior status or ours.  Despite what some trolls have said, I don’t want all of this attention, I want none of this to be happening, I want our lives to be so typical and so boring, that no one pays much attention.

I have always shared and over shared so I felt obligated to do so here, because I know that we are loved by so many, but even that makes me cry as I feel the weight of all of your disappointment for our family and I feel like we have let you down. That you are mad at me for not seeing a problem, for not knowing, for not being able to fix it

Her chances of remaining seizure free are not as good as they were before.  Her ABA therapy schedule is being doubled and I am just trying to be her Mommy and make sure that she is now and remains the happy easy going girl that she is, because she is what is going to get me through this


image image image image

Surgiversary, party of three

Yesterday was the two year anniversary of Ryan’s brain surgery.  We didn’t have a big party, or bring a party to school. We just celebrated at home. I am superstitious and didn’t want to over celebrate until we find out if she is still seizure free later this week.  So I planned on asking folks to wear purple and doing nothing more.

RM has also been very crabby, pulling at her ears and warm lately. So we took her to the Doctor yesterday & our gal has an ear infection and a skin infection.  What a day to party, but an anniversary can not be, will not be, stopped.  Ryan recieved support pictures of so many folks wearing purple, flowers and a handmade doll from other loved ones and to mark the occasion Mommy and Daddy got her a few purple things too.  Daddy is not too happy with Mommy because a purple bikini was in the mix.

So we still weren’t going to do anything, and then I was in Target & saw purple plates, purple cake mix, even purple cheese and tortilla chips and well I just had to.

So I did it up, just for us. We ate in the dining room wearing purple, Ryan in her dress from last year and I pulled out the party trays, I hadn’t put then away yet from Christmas, so really I just dusted them off.  Why have such nice things if you don’t use them.

Micah doesn’t have a purple shirt ( I know) so he festooned himself with Ryan’s accessories and we ate take out, purple cake, blueberries, blackberries with cheese and drank purple Gatorade.

image image image image image image image image

Party, Surgiversary style!

 

 

 

 

Apres Ski anyone?

Unless today is your first day reading this blog you already know that  I love all things Bravo and making up fashion theme weeks for Ryan.  So why not combine them!

It was cold this week, so I decided to do an Apres Ski fashion week. I like the name of the show Apres Ski, and Whistler seems amazing but the show was kind of eh, and the people not likeable. Ryan’s sweater wardrobe however is on fleek (See I’m cool) and she is very likeable so we needed to share in all of her ski bunny glory

image

Monday right before she got yogurt all over herself

image

Tuesday, gorgeously awaiting her ABA Therapist

image

I called this one Snow Kitty

image

A lovely ski bunny

image

Purple poncho handmade just for Ryan, her favorite Christmas present and of course, purple for Epilepsy

 

 

 

Tights week

A made up celebratory fashion week,  sure, but very fun and adorable on the perfect model, none the less.

I am loving Mozart in the Jungle on Amazon Prime, reading a great book about the Foster care system, eating crackers with jalapeño cheese spread in bed, and I took a shower today. Ryan is taking a nap, later I am having dinner at a friend’s house, life can’t get much better!

Enjoy your weekend! We are buying a LAPTOP!!!!!!!!

image image image

 

The privacy pop, wah wah wah

IMG_2365

VIDEO ABOVE!

So the privacy pop obviously won’t contain her safely at night, but at least we found out that the concept of a safety bed was a hit. A Huge hit! She likes to be enclosed. She fussed when it was time to get out.

i bought the Privacy Pop a year ago, and then we bought a twin sized aero bed at Christmas. For this or any other bed tent to work, it has to travel and we will always need the aero bed.

We only had it up for a day, and then we took it all down and she was sad. She was just getting so close to flipping the whole thing, or slipping off of the mattress, and getting stuck between the floor and the netting, that for Ryan (me) it was too dangerous.

So im back to the drawing board, for a home & travel bed option. Our Doctor is working on the appeal, I am looking in to more affordable alternatives and fighting a speech eval. Bill for $500, from April 2014 that just showed up. love it!

Ryan’s Surgiversary is coming up. Two years!!

An explanation and tears


I want to tell you all about Disneyland. We had a great time and I have been holding off, because I took almost all of the pictures with my real camera, and I can’t access those from my iPhone. The same goes for her first successful trip to the beach and our other CA adventures.

image

This is what she wore to Disney, the pictures I took to hand out to Security.

image

The hotel

image

Dana Point

image

The Dining Room, finally done and decorated for the Holiday

Then there is Christmas and all of the activities we have done around that. All on my real camera as well.

My tooth had to be pulled, on the 23rd and now I think it is infected, so the pain has persisted, but it is less. I am calling the Oral Surgeon tomorrow 😖 And it didn’t stop me (along with a painkiller) from joining Micah for the new Star Wars movie in 3D that afternoon.  When the surgeon said the molar needed to be extracted I said, how much??$43.00 and will I be able to go to a movie? Brightside, I could go to the movie and my pants are looser, since I can barely eat.

Christmas Mommy tears were shed. Working so hard on Christmas and having a child who does not “get it” is heartbreaking.  The dreams of getting to make your child’s eyes light up with wonder and excitement die in our house. The events are just another day, the Christmas Eve crowd (even though they are family) overwhelms her and I end up opening every single present while she runs wild, plays on her IPad or watches Frozen. Christmas morning, She did not care about the kitchen that I made her and then I felt like a big ass hole for not just buying her another light up toy with music.  The tears flowed and Micah didn’t cry, but he was right there with me, so at least I didn’t feel alone and he didn’t try to make me feel better. He was really excited and childlike about his gifts, so that made me happy and we just chilled the rest of the day.

image

Christmas Eve jumps!


image

The headband didn’t last

image

Grandma gave me a Frozen wand

image

At least it looks nice

image

Ryan Christmas morning, happy on her I-Pad and Daddy loving his gal

Now back to the grindstone and phone blogging!

Coming in 2016, a new PC and hopefully I will straighten out all of the cockamamie pictures.  If I look from my phone they are straight if I login from Micah’s computer some are sideways.  Can you let me know how they present to you and where you are accessing the blog.  Thanks and Happy New Year.

 

pain

Other than being burned, tooth pain is the worst pain in my life. (Ryan was a c-section)

last week I got a temporary crown put on, the next day it popped off, leaving the nerves exposed. I could not get an appointment to fix it until today. Micah has been out of town until last night and I have been miserable. Salt water rinses give seconds of relief, Advil and Alleve on rotation help a bit. Sleep barely comes and yet I feel weirdly fuzzy from the pain.

Micah got home last night and I took an RX for pain relief and I swear to god, 12 hours later I was still groggy and pain free, a state I couldn’t risk being home alone with Pickle.

image image image » Read more

WTF, I’m going to swear a lot in this one.


The title is my pre-apology for all of the swearing I am about to do.

I am really angry. So angry that I am exhausted from it and so frustrated that I am about to start balling.

I want to ask that you just let me vent. I am not looking for help, or a saviour, I am looking to unload some of this anger, on this blog, my safe place.

I hate the state that I live in, I hate the governement that taxes us to the nines and doesn’t help us, I really hate insurance company’s and  I hate that I feel like we have to pick Ryan’s future or her present.

I hate that the world tells me to take care of myself and to put myself on the list, but taking care of myself costs $, $ that then can’t go to Ryan and her therapies. So maybe I won’t have anymore cavities, or holes in my mouth, but that may mean missing 20 private speech therapies. So maybe she will never speak.  The brain is a mystery and no one can 100% confirm that the above statement isn’t true.

I neglected myself and my oral health specifically since Ryan was born. I have always had cotton candy teeth and I find comfort in sweets. Because as a side note, I can be fat and be a great and present Mom to Ryan, but I can’t be drunk and be a great & present Mom to Ryan, so this is the safe space that I am using to ask all of you to stop telling me to drink a glass of wine for stress relief. Micah travels for work, and I HAVE to always be SOBER.

This is also the space that I am using to tell you that even though Micah has an amazing job and we should be Comfortable, we are not. Our love and our light Ryan Margaret costs 1/4 of Micah’s take home pay a month, just to keep going, status quo.

I can not work, with her therapy schedule and his travel schedule, what job can I get that pays me more than a special needs babysitter costs????

I want to go back to school, so I can do freelance work, but of course school costs $$$&&. Fucking money.

Today I found out I need to have two crowns and one tooth extracted.  Maybe we’ll splurge and I’ll get an implant.  Our post insurance out of pocket is $1,500.00  I have already paid $$500.00 for all of my fillings.  So that is ten speech therapies already and 30 more to be missed.

Today I also found out that Ryan’s safety bed was denied  An 11k bed we can’t afford without insurance.  I’m going to fight, but I’m getting tired.

Who needs sleep? I can get a bed that has an alarm when she gets out of it and a motion alarm from our home security system set up outside her door.  Those may keep her safe, but they will likely guarantee that our house will be ringing all night long, because she will not stay in bed. Who needs sleep??

My bloodwork to make sure that my thyroid is ok, because I am losing my hair again just set us back for $250.00 out of pocket or five therapies missed.

And here is the big rub. We have to fucking get Ryan two insurance policies next year.  The private plan we have for this year isn’t going to have her Doctor’s (3 of her 4 Specialists) or the best children’s hospital in their network in 2016.

She needs those Doctors, but she needs this private plan too. The private plan pays for her ABA therapy.  That therapy is helping her so much we can’t lose it. So for all of her medical stuff she is going back on to Micah’s group plan and for her therapy and prescriptions she will be on the private policy.

Great right and hopefully it will work out, but it will also cost us a fortune.  Hundreds more in premium a month and thousands more in deductibles a year and out of pocket maxes.  We always reach our out of pocket maxes.

What is the real cost? To me it is Ryan’s future, there is no way we can fund a special needs trust for her, much less set one up.  So what do we do??? We carry a shit ton of life insurance on both of us. That is the best we can do right now.  It costs us a couple of hundred dollars a month, or six more therapies.

So what does the state say? Oh that Micah makes too much $ for us to qualify for anything.  They have never asked us what she costs, they have never asked me what we need? (a Medicaid card)

the Fed’s say you can claim medical on your taxes if it is 10%+!of your income, we always just fall a little short.  So zippo there.

We lost our laptop fire claim too.  We bought what we thought was an official HP replacement battery, they said they were, but it was a lie and it was fraud and I’m tired of fighting.  P.S. Don’t buy laptop replacement battery from anyone but the manufacturer, because when it blows up in your lap, no one will take responsibility.  And the world will tell you, that you are lucky that it wasn’t worse.  So that must mean that it is okay that a  laptop blew up in your lap, burnt your leg, cost you thousands in damages, because it wasn’t so bad and Ryan was upstairs after all.  Why should fraudulent companies do what is right and safe? You are a cry baby ninny to expect them to.

So I’m pissed, but wait this is all happening for a reason right? Oh no wait, God wouldn’t give me more than I could handle?  Well soon I’m going to handle being bald and toothless, while I use my phone to blog, maybe that is the lesson that I am meant to learn.

 

 

Running

Yesterday we were headed to the beach.  As we were leaving the hotel, Ryan was being Ryan and she was running along the hotel’s sidewalk.

Luckily my camera was on Sport mode, and I finally captured Ryan joyfully running.   There are a bunch of shots, and it probably covers only about five seconds.  The girl is fast.

I’m thinking of making a flip book.

IMG_4815 IMG_4816 IMG_4817 IMG_4818 IMG_4819 IMG_4820 IMG_4821 IMG_4822 IMG_4823 IMG_4824 IMG_4825 IMG_4826 IMG_4827

Equine Therapy!

Equine Therapy Video

Click Above

Someone loved equine therapy in CA.

IMG_4676

Ed & Grandma D help Ryan get ready to ride

IMG_4688

I love being up here, but I don’t want to hold on or sit up straight!

IMG_4724

I may need an extra helper to keep me on the horse, but hopefully not for long. Thank you Miss Trudy

IMG_4735

Grandma leads Smokey so he doesn’t go too fast

IMG_4768 IMG_4770

Ryan is lucky enough to have a Grandma who is in to horses and has a horse. Grandma D set it all up for us, and though she needed two people to keep her on top of the horse, Ryan absolutely loved it.

She didn’t like sitting up straight or holding on, but she loved being up there.  She could have sat up straight and she definitely could hold on and should only need one person holding her.  We know that she will get there. She has the physical ability, she just needs some more practice. Which Micah and I have already agreed she will get as soon as we sign her up back in IL.

The Therapist would ask her to pat the horse to GO, and after only asking Ryan a few times and subsequently showing her, with hand over hand, Ryan got it!!! She understood, and she started tapping him in the exact right spot every time he stopped.  Or Wo’d!  She got it!!! She comprehended, something we can never take for granted.😂

One of Grandma D’s friends helped hold Ryan on the horse, she said that you could physically feel Ryan relaxing and getting in to it.  We are so proud of our gal, and grateful for the opportunity.

 

« Older Entries