We might not be there

When you have a child you never worry about them outliving you. Heck you hope they do. I have big plans for Abby. Not huge ones. I don’t expect her to mediate world peace, I am not hoping she has a Walton family, I just want her to be a productive member of society and happy. Being happy is important.

As with so many milestones, Bridget is different.

Of course I want her to be happy. I want her to demand world peace (seriously, who is going to tell her no?). Yet I worry more for Bridget. Actually that is not true, I worry more that Bridget will not be independent and therefore Abby will need to care for her if we are gone.  Not that we plan to be gone, David comes from a family that lives to be 100 (me, not so much–I’m from the not dead yet family line). Even if he lives to 100 (and has all his teeth and sensibilities) Bridget will be 58 years old.

Holy crap, she will be 58 years old in 2066. Drat I just gave out David’s age, don’t tell him. But at 100 he will may not be able to care for her. Anyone who reads this blog knows I am not one to place limits on Bridget. I dare her to defy them.  But in 2066 will she be living independently? Will she have a job? Will she be able to dress herself? Will she be able to do personal hygiene? Will she be able to pay her bills?

Who will take care of Bridget if I am gone?

This keeps me up at night.

No lie.

I seriously worry if I am gone, what happens to Bridget?

Not that David is not an awesome dad. He is, but I’ve taken care of everything. I’m kind of controlling that way.  Not that Abby is not an incredible sister. She is, but I want Bridget to be her sister–not her burden. Okay, burden is the wrong word. I do not want Bridget to be her responsibility.

We have safeguards in place, I have incredible nephews and an almost niece. Bridget has a village. We have a small town that loves and adores her. But they do not take care of her on a daily basis. No one knows the IEP process, the healthcare process, the therapies, the need to photograph every freaking thing to help Bridget recall her day. They do not know the 14 doctors we coordinate. No one understands how much time, effort and work is involved to make Bridget succeed.

She is succeeding. That is not a Pollyanna outlook. It is the truth. Today she took off her PJs (including diaper) and dressed herself for school.

She independently un- and redressed herself.

That is a huge thing. I am unsure if anyone gets that. But it is huge.

It was a sign that the hours of therapy are paying off but that they also need to continue. It means we have to stop taking the easy way out and helping her when in truth she can do it. It’s one step closer to independence.

I’m afraid of the time when I cannot care for Bridget. I feel guilty that her sister will have to be responsible for Bridget’s care when I am unable. I fear if I do not make Bridget as independent as possible she will be a burden and not a joy to those who love her.

I want Bridget to be the best she can be, I want the same for her sister. Yet I never worry about Abby being awesome and finding her place in this world.  I do for Bridget. I worry that she will not find her place, that she will be seen as different, that she will be “weird” and not a part of her community.

I feel guilty for all of those thoughts. Because I feel guilt I push her harder to be independent, to not show the signs of her disabilities (while I battle the guilt that I am not accepting her as she is), I strive to make her a member of her community.

I worry if I am not here, will there be someone who wants to take my place as her advocate?  

I know Bridget will rock her world, I just hope the world will allow her to set the beat.



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