Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Well, meh.

Can I even consider these posts part of 31 for 21? I’ve fallen so far behind.

Life has not been easy around these parts the last couple of days. That sounds dramatic. On the immediate side, everything is fine. Sarah is happy, healthy, growing, and adjusting to her new sleep schedule (in her own bed…sniff…sniff…), Dec and I are happy and healthy and preparing to move, and life is pretty good in that way.

But there are things that are going on that are just stressing me out and stretching me thin, and it’s hard to deal with these things when they all happen at once, you know, no matter how minor.

The first one is that Sarah’s mother has asked, her words, for us to “back off”. She doesn’t want any more contact with Sarah. No pictures or visits or updates. This is, obviously, draining. Perhaps not unexpected even though the arrangement we had set up when Sarah was ~3 months old was different, but still draining. I lost a friend, but more importantly, Sarah lost her mother. Even if she wasn’t going to fulfill a maternal role in her life, she was still important!

So there’s that.

There’s also the matter of my sister, which is something that I keep struggling to talk about on this blog. My sister has special needs. I don’t want to go any further than that in the interest of her privacy, so we’ll just go with that: she has special needs, both medical and developmental, that will require someone to care for her for the rest of her life. She’s fifteen years old, functionally 5-6 in most areas.

She is a wonderful human being and I adore her. I’m glad she’s my sister. But my parents are going away for three weeks (and yes, this intersects with our apartment hunting trip. Yes, we planned for this. Yes, everything is under control) and dropping her off tomorrow afternoon, and that kind of stresses me out.

Not because I don’t want to take care of her, not because I don’t love her, but because it puts things into perspective. My parents will have to take care of her until they are too old to, and then that responsibility will fall on me. Which was fine two years ago, but now I have Sarah to contend with, Sarah who will also require some degree of parenting for her entire life. She may have more independence than my sister, but how much more? Will I really be able to handle two adult children?

And then there’s the other question–who is going to look after Sarah when we’re gone? She has no adoring older brother. She won’t even have an adoring younger brother. I don’t know what the options are going to look like by the time this is something we’re going to need to worry about, but it still scares me.

That’s the thing about this journey. There’s so much more uncertainty and fear. No matter what there are bumps along the way, but there are not quite as many bumps for those with neurotypical children. It hardly seems fair, but what can you do about it? Nothing. Just like every other hard part of this, you have to pick yourself up and keep moving forward. That’s all that you can do.


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5 thoughts on “Well, meh.

  1. I’m sure this thought isn’t really that helpful, but the good thing is that you are young now. I’ve heard from a lot of people that the ones they choose to care for their children are not always family, but very good friends. I am sure that you will have people beating down your door to take care of Sarah. More likely than not, you’ll be pining for the days she was back at home with you. I am sure this is a heck of a lot to be dealing with. So in the absence of any solutions and most likely no reassurance, I will just send you my thoughts for support and strength.

  2. the future is always the scary part. Try to just enjoy now and take deep breaths.

    Or at least that’s what I do…


  3. Andrea on said:

    There will be people as Sarah gets older who help to care for her. At school, maybe at home, maybe a day program after she is done with school. Some states have programs in place that support the ability to live independently for people with special needs. The young woman I care for, and will care for for the rest of my life if I outlive her mom, lived in New York as a child. Her mom tells me that in upstate NY where she lived, the school support system was the best she’s ever encountered. It beat what’s available here hands down. I do not know about the other supports there, because my friend wasn’t old enough to need any of it. Here in Michigan it’s pretty good. Contact me on BBC if you have any questions, my sn is apeppersmith.

  4. I’ll PAN you on BBC about this but I have an idea/thought. šŸ˜‰
    Also, I’m so sorry about Sarah’s mother. And though it may not be much, as a mother of a child who does not have his biological father, I can tell you that at the end of the day, it is not what your child doesn’t have that matters. It matter more the love and care that is provided by those IN their lives.

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