I've been in a funk for months... not being able to put a finger on exactly what it is... is it sleep deprivation? Is it depression rearing it's ugly head? what is it? It finally has a name.. My husband and I were having a conversation Saturday night and it came out... all the things that were stuck in my head that I didn't want to give a voice to. I didn't want to give the thoughts a voice because then they become reality. But Saturday night it just flowed... we had the best date day.. nothing special, just quiet and easy.. no rushing, no chaos.. great conversation... and out it flowed... with no fear of judgement, no fear of how awful it sounded... just relief.... I gave a voice to ALL of the feelings, good and bad, and it just clicked... I am experiencing grief... I said it... I am grieving..
When we got together and combined our families it was rough.. 6 kids from 17-4 is a lot to deal with and a lot of opinions, needs and wants. Add in the exes and it was quite honestly hell a lot of the time and we got through it by always focusing on our dream of traveling when the youngest graduated and moved out. Well, she's graduated and has her plan rolling to move out... we should be planning what country is the first we are going to explore while my husband teaches abroad. A different country every year or two was the plan. We were going to see the world. Instead we bought a house in Sheboygan, Wisconsin.
We were supposed to buy a house last year and I couldn't do it... the anxiety and stress it caused me was overwhelming. I kept blaming it on the big number involved in a home purchase here but that was just an excuse. I had a dream last year, the kind of dream that is so real you just can't shake the feeling it leaves you with. In my dream we were moving into our beautiful new home and I was so angry and sad because we were moving into a home that I hated, a home that we bought for a child that we no longer had and it terrified me. I honestly don't know what terrified me more.. that Madilyn was no longer with us or that we were living in a home that was a constant reminder. It left me devastated and pretty much unable to breathe, and the home search was put off another year because of it.
This year we bought the house... and it's beautiful and I absolutely love it... I couldn't figure out why I have been struggling so much.. and Saturday night in that safe moment it just flowed...I had no control over the words no matter how horrible they sounded... I would not trade Madilyn for the world.. I love her more than anyone could ever understand and at the very same time it's sooooo hard because every dream I (we) have ever had is gone.... and up until this point we have never acknowledged that.
When we got custody of Madilyn over 7 years ago we had an emergency GI appointment because she was so sick.. her doctor looked at us and said "you are doing everything you can and IF she is still alive in 3 months call and schedule another appointment but I'm sorry.. I don't think I'll see you again".... we didn't share that with anyone for years... We spent at least 6 of those years constantly being reminded at damn near every appointment that they don't know how she's alive much less how long she will live. They don't understand how her body even functions because her genetic abnormalities are not compatible with life.... yet here she is. We live our life with her focusing on the moment because we never knew (or know) if we would/will get another one. We are so sleep deprived it's ridiculous and there's no signs of that ever changing... yet when we have the occasional random night that she does sleep you wake up in a panic wondering if she's even alive or if today will be the day that we try not to ever think about. It's a double edged sword and it's devastating and sometimes debilitating.
I honestly don't know what scares me more... the thought of her not being here or the thought of living this way for an indefinite amount of years.... I don't expect people to understand that statement at all... if you don't live a life like ours you would never begin to fathom what our life is like. Yes, we give you glimpses of it via facebook or this blog BUT we get to control what glimpses you get... we control what you see and what you know. I have some very conflicting superstitions about the way certain things get said and about giving our thoughts a voice... I am a firm believer that if you give your fears a voice and release them to the wind they no longer have control over you... and at the same time I had a friends mom once tell me when I said "I love her to death" (years prior to Madilyn)... "from your lips to God's ears... be careful what you say... I quite honestly don't even know if I believe in God but that statement has stuck with me for 15 years... and it bothers me.. so I'm cautious about how I say things... it made me terrified to give my feelings a voice.... but at the same time I feel I have to in order to move forward....
Moving forward in our home means learning to do things we've never been able to... like disciplining the Sasshole... the health ramifications of causing her stress in the past have always dictated that basically she get her way for miles of medical repercussions that I really don't feel like explaining... but we are in an okay spot that we have to delve into the timeout world and hope for the best.... can you imaging living with the never ending three-nager without the possibility of time out? It's like we're stuck in a super horrific episode of Ground Hog's Day..... so away we go... hoping for the best...
Hoping for the best... praying to a God I'm not sure I believe in..... and contemplating buying myself some pink fucking shoes......... because when it comes to the Sasshole life is all about the little pink shoes...
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