Autism Spectrum Disorder, Autonomic Dysfunction, Brain Damage, broken heart syndrome, Chronic Illness, Dysautonomia, Invisible Illness, Mom Guilt, self care, Stress

I have to really push myself to leave home now and I don’t know if that will ever go away

We just returned from a weekend getaway to Pittsburgh.   We went to see one of our favorite outlaw country artists, Chris Stapleton.   There is something to be said for hearing those songs played live, especially if the artist is good live!  It was a splurge.  It’s our 35th anniversary this month, and we had excellent seats.

Why does it always feel like I’m leaving my daughter behind?😟

We had a great time, but getting there can be rough for me.  I almost always cry a little initially.  I feel like I’m leaving a big piece of my heart behind.   It always has been this way for me, though.   Emily is by no means a burden…She’s our beautiful little wounded songbird.   We have always instinctively known that she would need extra protection.   this has been how our life has been lovingly (and sometimes challenging) flowing since she was about six years old.      I have identified that when I leave this home….it always feels like I am leaving my daughter behind.  How can I possibly have fun when she is so not having fun at home?    It’s heartbreaking for me as her mother that she cannot do the types of things that she used to really enjoy.   She is so young.

Both of my kids share my passion for music.  Emily is my classic rocker and was becoming a fast concert buddy before these conditions struck her down.  Def Leppard. REO Speedwagon, Tesla Concert 2016 This photo was the last concert that we attended together in 2016.   Def Leppard, REO Speedwagon, Tesla baby!    She was mainly suffering from bladder issues, headaches, and body pain.  That was enough.  (Those sunglasses stayed on long after dark, and we moved way back from our front row seats)  POTS would strike very soon.   Soon, she would be collapsing on the floor and fainting.   I do not recall the number of times that 911 was called or how many times I have followed an ambulance.

Def Leppard came back to Hershey the following summer, and we tried to take her.    By the time she endured the very long walk from the car to the stadium, had our tickets scanned, and purchased some food, she was toast.   We had to leave.   I felt so bad for her, and I really, really hate POTS and everything that it has taken from her and all of us.

Def Leppard was coming back last summer, but Covid hit, and the show has been postponed until 2022.   I’m not sure what I was thinking about buying us tickets.   Perhaps I’m like her Father and refuse to give up hope.   In some respects, she is so much better than she was at this time five years ago.  But in other respects, she seems weak and like she is deteriorating.   She just cut her beautiful long hair after 25 years  😥   That was a tough day for me as her mom.    We laugh that she will be sporting headphones and sunglasses if she can attend it.    I’m pretty sure that it would not be a good idea for her ever to be exposed to thousands of people, so it will likely not happen unless the situation improves.

It can be very challenging to get myself to relax when we’re away.    We tend to hover within a 4-hour radius of home in case of an emergency.    Anything further than that, especially by plane, just gives me major anxiety, and we’ve been helplessly in Florida while there was an emergency at home.   I know I will never leave this continent in our retirement years, so I’m thankful we’ve seen Hawaii twice.

What I’m trying to convey may not make sense to many reading this unless you are a parent helplessly watching your child suffer daily.  It is a real and very crippling feeling that I have as a mother and get every time I go away.   I think it is part of my grief process.  This is not what I envisioned for her when she was born.    In some respects, I do feel like l have lost parts of her to these conditions.  Sometimes, it feels like I somehow took her health for granted.     We all take simple tasks and activities for granted, such as showering, dressing, cooking, driving, and even working.

I know how these conditions work….there is no planning far into the future.   You never know what may be lurking around the corner.    I’m working to make the best of the situation we have been given and create an atmosphere at home that we don’t need a vacation away from.     We are somehow managing to achieve that,  and I feel pretty content at home.    We can live semi-independently and coexist in our home as two couples.      Yet we are close-by if she needs us for anything.

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