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...