Our new reality

Everywhere you look or listen right now is Covid 19.. corona virus.. social distancing.. wash your hands wash your hands wash your hands... stay home if you're sick...just stay home...

It's really nothing new for us.. it's been taken to drastic measures but it's how we live our life.  Everyone at our doctor's offices and Children's hospital love Madilyn's "bubble" when we go there.  For several years now we have used her weather cover for her stroller as her germ bubble when we are in places like that to protect her.  It's now her comfort zone... it's our reality.

Since New Year's we've been inpatient twice and to more doctor's and lab appointments than I can count at the moment.  We've had scans and more lab tests than ever searching for answers...  Hematology recently did 2 genetic tests searching for an answer to her blood problems.  The JAK2 Gene Mutation and the JAK2 Exon 12 Gene Mutation.... the nurse called me yesterday and said that both are negative... the next step they want to do is bone marrow testing.  We don't want to put Madilyn through bone marrow testing... at this point it's irrelevant because with all of the virus stuff going on our hospital is basically shut down other than emergencies.  None of our clinics are seeing patients like Madilyn because it's not an emergency.  Even if it was an emergency Madilyn would probably not be seen because we have Advanced Directives in place already.  They are doing everything they can to help us manage symptoms remotely and are in constant contact with us so that's a plus.

We've made some recent med changes and it's helping with sleep for now and we're working our way through a list of options to deal with her headaches until we can finally see Pain Management in June (hopefully).  We were referred to Neurology and with the current situation I'm not sure when that will happen.  We've also started using CBD ointment to help with the pain in her feet, back and legs and it's helping.   The good news is that with these things in place and with all the help home with us the abuse is greatly reduced and I always have someone here for immediate intervention so it's very livable right now.  The Sasshole is super excited to have everyone home too... constant entertainment for her... and relief for me.  Now if it would just be warm enough to get out in the stroller or on the deck that would be amazing!

Regardless of other people's opinions of the virus and steps being taken... it's how we would be living either way so I just scroll right on by... we need to remember to be kind to one another.. reach out to our loved ones and practice social distancing and great personal hygiene.. I went to the grocery store yesterday and as I was spraying my cart with my hand sanitizer I noticed a woman that was trying to figure out what to do because they were out of the wipes so I kept my distance from her but sprayed her cart too.. it's the little things....  I was not so kind to the woman in the produce department shopping that was visibly sick and not covering her mouth to cough though.. or the guy that was with her that wasn't any nicer.(I won't even get into the conversation they were very loudly having) complete disregard for anyone else..I told them how ignorant I thought they were (from a safe distance) and that she could at least use some common sense and cough into her elbow and cover her fucking mouth... she didn't care.. she thought it was funny... people like her are why shit like this goes on...  use some common sense people... please....

Life for most people is drastically changing right now and we have very little control over it... my only suggestion is to learn to live peacefully... pick one project per day and tackle it... move your body, there's tons of free videos out there and I shared some on my Facebook page).. drink your water...eat healthy (grocery stores are NOT closing)... don't hoard toilet paper or food.... and breathe... play a game with your family.. read a book... life will be back to chaos quicker than shit so just live in the moment.

I had an appointment scheduled for almost 2 months prior to all the virus stuff and contemplated not keeping it but I'm happy I did... I was one of his last appointments before the state shut them down for social distancing... I'm so thankful I kept it... it's Madilyn's very first pair of pink fucking shoes......

The Ugly Truth

We have been through so many tough times with Madilyn.... so many things we thought we'd never make it through but we have.  I've shared so much and at the same time so very little of what our life is really like at times.  Since Madilyn got sick in early October we've been on a super fast downhill slide.  It's going so fast that we often feel like we're going crazy and question our own perspective on what's really happening.
As the sleep issues escalated so do the behaviors.  It made us all feel incredibly insane.... and broken.  Dealing with all of the new health issues combined with all of the behavior issues just became too much for me.  First I need to state that we have some super amazing and supportive people in our lives.  We have a tribe of some of the best people we've ever had in our lives.... but there was an aspect of our lives that I did not let them in on.  I would make comments sometimes and try to make light of the situation at home... but I was never truly honest with them.  There's a fear that comes with that kind of honesty... a fear that people with think badly of you, or judge you... the biggest fear of all is that it will be too much for them and they will walk away. 
This past Friday after 2 months of never sleeping more than 3 or 4 hours max at a time... months of broken sleep and heartbreaking medical issues.. I snapped.. and so did Madilyn.  There's an abuse problem.  It made me feel just as ashamed and broken as the abuse in my first marriage did.  I desperately tried to hide it.  I wear long sleeves to cover bruises and scratches and I don't really talk about it.  There are very few people who ever get to actually witness it. 
Madilyn was so escalated by Friday morning... days and days of not sleeping at all... her aggression was through the roof.  Her screams make you wish you were deaf and her unbelievable strength when she's that escalated makes me feel like I'm being beaten by a full grown man instead of the tiny little being that she is.  There's no stopping her, there's no ability to reason with her.  All she knows is she's hurting and I'm her person and I'm not fixing it.
After about 5 hours of repeated beating and screaming I called our care team sobbing and begged for help.  She could hear Madilyn in the background and said we needed to come to the ER to be admitted.  She made me promise I would call someone for help as soon as I hung up.... I've never done that... my people were not here.. I had no other choice.
I called my friend to get my work shifts covered and to tell her what was going on.. Madilyn was screaming and I fell apart... I could not stop sobbing.. she immediately sent another friend over and she got my shifts covered at work... My friend came in and simply ran interference between Madilyn and me.  She let me cry.. she let me walk away and did everything she could to distract her.  Madilyn came at me and was kicking the shit out of me and hitting me and she told me that if I needed to go in the garage and smoke a cigarette she was fine with it.... I think I apologized a million times for how awkward she must feel in the middle of this situation.... she simply reassured me it was fine.  Another friend showed up and just held me while I cried and together we put a plan in place for when these things happen.  Like it or not, this is our life.
All 3 of my friends have repeatedly checked on me and reassured me how much they love me and that they are right there for anything we need. 
Friday was the first time I've ever put Madilyn in the playpen begging her to stop because I was afraid I would hurt her.  I walked away with her blood curling screaming and took a shower... and sobbed my heart out and prayed like crazy to a God I'm not sure I believe in.... right after that is when I called for help.
People read in the media about a special needs parent that snapped and hurt their child and they judge them.  They find out about a parent that walked away and they judge them and say nasty shit about them.... on Friday... I completely understood both.  I reached out.. not everyone has that option.  The life we live is very isolating.  People walk out of our life on a regular basis.. or tell us they'll be there and they're not.  We hear all the time... just ask, we'll help.... not understanding how hard it is for us to ask.
My husband has heard more times in the past two months that I can't do this anymore... he has heard a million times while I'm sobbing that I feel so broken it hurts... what a failure I feel like because I wasn't able to help her... nothing can take away that feeling.. all the reassurance in the world doesn't take away the pain...
We spent 3 nights in the hospital... by Saturday at noon time after only sleeping 2 of the last 24 plus hours Madilyn stopped.. it was like someone flipped a switch and she became pretty non responsive and just had a glassed over look and was vomiting.. just opening her mouth and letting it pour out... she stayed that way for about 30 hours.. it scared the hell out of me.  We ended up determining that we thought Madilyn was caught in a migraine cycle.  One that finally shut her right down.
We've always questioned if she lived with daily pain.  Our care team always said they didn't think so.  With all of the new blood issues coming to light they now say that she definitely does.  We've been referred to the Pain Management team at Children's to determine the base level of daily pain she lives with and to determine if it is migraines she is dealing with. 
We had extensive talks about bone marrow testing vs pet scans..... we had an honest and open conversation about what Hematology is looking for... they think she has cancer that is not yet showing in her blood.... we had conversations about the Advance Directives that were put into place prior to her lung procedure last month... we've been having incredible hard conversations that no parent should ever have to have.
We also had a very honest conversation that our team does not think Madilyn's health situation will improve... it will continue to decline... BUT we are taking steps to make it more livable and to bring her more comfort.  We are hopeful to have more happy times and to hear more giggles than screaming and crying.
We are grateful that the new med has brought some sleep even if it's only for a short time.  We are grateful for the happy giggles that started our morning today.  We are going to remind ourselves to live in each moment.... find the positive in every situation... and remind ourselves to breathe...
I'm no longer looking at Friday as the worst moment of my life.... I'm looking at the positive that came from it.... I'm thankful and so beyond grateful for our tribe... I'm thankful our "secrets" are out... and I'm hopeful that being honest about it can maybe help one other person that is living a life that involves any type of abuse....
We have a big meeting with Madilyn's team on Thursday to discuss the next steps on our road.... until then I'll focus on finding some new pink fucking shoes...