It’s been a time of lots of transition and life changes recently, and some days are harder than others… as many of you have read. That said, I want to thank many of you for the kind words and support recently. I also want to clarify something: I am not as critical of myself as it may simply come out in some posts. I am indeed my own worst critic, and a harsh one many times, but many of the observations and emotions around Huntington’s and my mother’s death are not to say that I think I wasn’t a good daughter or sister… that I didn’t do enough. I was/am, and I did. I know that. However, being there for those we love is not always pretty or altruistic. There are those times when I resent the whole thing. I don’t feel like the loving daughter/sister/mother/whatever, that I’d like to be… even if I know that in the big picture, I’m doing a pretty good job with a really lousy situation. Around Mom’s birthday this weekend, I was just sucked into the depressing and distinctly overwhelming reality of Huntington’s: there is not an end in sight. For each person I love, who suffers from it, there is then their kids (people I love so enormously, I can hardly bare the thought) to wait and watch with. There is the constant knowledge that the witnessing, the caregiving, did not end with my mother. That horrible 50/50 always looms in Huntington’s families, and it’s hard to not always be wary of the next shoe that you know will drop. There is potentially a very long line of this disease, that I feel tied to. I am tied because I love them, and I would be nowhere else. But some days it is really an awful lot to accept and deal with. So thank you for reading those posts and offering kind words, but be assured that I am as ok as one can be, living in the Huntington’s world.
And so I went for a walk:
It’s amazing what can go through your head in one hour. On my walk recently, it seemed that so many of the people and things I passed sent flashpoint thoughts to my brain. Most were quick observations, brief ponderings. I didn’t linger on any one thought more than ten minutes, and most no more than two, no matter how deep or how shallow. It was good to walk briskly, take things in and let them go. Remain silent.
Choices. Options. The path.
Transition. Change.
There but for the grace of goodness… And yet, I couldn’t help but think that this homeless man is resting on a beautiful little beach, with the sound of the waves to sooth him.
Take chances. Weigh options. Test limits. Use caution sometimes.
Boundaries. How do I mark mine? Who/what do I welcome in, and who/what do I keep out? Boundaries. (For the record, Luke’s marks his constantly!)
Youth. Fresh starts. Love. Longevity.
Beauty. Continuity. Patterns. Constant change.
Where do you go to think? Do you prefer to talk it out, or think it out? Which scenes make you think? Share your thoughts in the comment section. Hit like and make my day.
TALES FROM THE MOTHERLAND 
I think I fall in that category of people thinking you were being too hard on yourself. Get it. You’re neither a bad daughter or mother or sister. It’s a trap we fall into. How many men worry they’re not being good sons, fathers, brothers? You’re amazing. You’ve had an incredible year, filled with many challenges, fun and sadness. A walk is great. I seem to get many ideas when I’m on my bike or in yoga class.
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Thanks Lisa. I always appreciate your kind, candid feedback. Namaste!
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Love the photos – they come alive with your captions!
I am a walk-on-the-beach person. Must be those ions. Off-season is the best, I’m not a fan of beach crowds. But really, walking anyplace out in the fresh air will do the trick. Luke cracks me up – my dog does the same thing, only a daintier little girl version!
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I’ll always be a beach person first, but the woods where we live is a close second and a more frequent location. Off season, when it’s quiet and isolated definitely makes me very happy! thanks for reading Val!
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I’m so sorry your family is affected by this horrible disease. I can only imagine the pain of knowing so many others have to wait and wonder if they’ll be next.
While it isn’t the same, I can relate on some level. My (only) little sister passed away when I was 10 from Leukemia, I have been dealing with Lupus for 18 years, and am now faced with the care of my ailing mother. It’s so painful to watch her give up on living… a little more each day.
Walking in nature is always good for the soul, but for really heavy days, I choose the beach. The ocean has a way of soothing and refreshing my spirit in ways nothing else does.
Peace & Blessings to you & yours. ~<3~
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Thank you so much for your kind words and thoughtful comments Remy. It is much appreciated. As for your experiences, trust me: there is no competition when it comes to pain and suffering. We each have our own sorrows and journey, and one is rarely worse than others.. when it’s your life under the microscope. Losing a sister at such a young age is so traumatic! While we all eventually heal from loss (or, most of us), it never really leaves us. My father was killed nearly 40 years ago and I still think of him and miss him. It is just part of who I am now.
I imagine it must be incredibly hard to manage both your own health and your mother’s some days! Like some many other illnesses, stress can have an amazing impact on Lupus, and it’s hard not to feel stressed when caring for a loved one… especially if you see them letting go and giving up. That said, I remember when I really “got” that my Mom was done fighting, and she just wanted it to be over… Strangely, it brought some peace. If you read some of the posts about that time (last Nov and late Dec), you’ll note that my Mom fought until the end, to some extent… but she’d given up on so many levels long before then. I had to accept that and just be there for comfort and closure. I hope you can find some of both.
Thank goodness we both have places where we can work out some of this. Peace of mind is a precious thing! All my best to you, and thank you so much for taking the time to read and share.
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Sometimes just taking a walk helps to put things into perspective. You are doing a great job – don’t forget that, OK? Thinking of you!
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Thanks Jean. I feel like I’m doing ok, but thanks for the cyber hug! Such a great community out there and always much appreciated. 🙂
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Reblogged this on The Huntington's Chronicles.
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