Over the last few weeks, I’ve been working on an interesting project about kids with disabilities who have siblings. One important topic I had to cover while interviewing families was the need for lifelong care and financial planning for children with disabilities.
We are SO far behind in this area, however, I did notice something about myself while I was writing about kids who will never be able to live on their own – I’m no longer upset by the idea of my children living with me my entire life. It seems I’ve reached another level of my acceptance of disability.
When I was pregnant, I was so thrilled and excited for my baby girl to arrive, but, as someone who’s spent most of her life putting too much emphasis on independence, I made sure that I did all the things I knew I would most likely not be doing for the next 20 or so years: date nights, romantic getaways, etc. Even before Amelia arrived, I mourned the loss of that child-free time, although I did have a certain excitement thinking, “In 2 years, we’ll be enjoying this with our little girl.” Still, in the back of my head I had this comforting mindset that it wouldn’t last and eventually my kids would be in college and we’d be empty nesting.
That’s why I pushed back when I learned my daughter had Down syndrome, knowing that it often required a lifetime of care. I did the same when Zoe got her autism diagnosis. I thought, not my kids, nope, no way, not, not, NOT!
I know that sounds awful, and honestly? It was. It was, in fact, the height of selfishness.
I guess the realities of life and all it’s little crises made me completely forget about this topic until the last few weeks.
I was reading about an in-law suite for disabled family members, and it struck me as a cool idea – and that made me realize that I’m OK living with my children for as long as they need me. Maybe it’s just a little thing, but it’s important. They are growing and learning and struggling and moving ahead and lagging behind, and I suck at gaging how much support they’ll need. I don’t want to cheat myself out of the hope that somehow they’ll need far less support than anyone can foresee at this time but if they don’t, it’s really and truly good by me, as long as they live happy, healthy lives and do whatever they were made to do.
I’m going to be fully honest – part of this, too, is my faith journey. Being a truly, deep Christian means trusting in God for all things, but most especially the stuff you can’t control. Where they need healing, I will do my best to heal them (I’m sorry but eczema and dark circles under the eyes are NOT signs of perfect health). Where they need therapy and skills to adapt to a functioning life, I will train them. Along the way, there will be things that perhaps I cannot change – I mean, a huge percentage of people with Down syndrome get early onset Alzheimer’s. Can I prevent that? Will there be better research someday soon, can supp’s or homeopathy or detox help? Will there be a medication ready when Amelia’s older? I don’t know, but I’m not going to lie up nights worrying about my girl. I’ve done that before, and I find, oddly enough, that sleep is far better! So I leave it in God’s hands and ask Him every night to lead me in what I *CAN* do, and more importantly, what I’m supposed to be doing to help or heal them. Then I let go all the rest.
I’m wondering what others with kids who probably will need ongoing support feel about acceptance of disability? Are you bitter, like I used to be, upset that your children won’t move on from your home, or do you welcome having them in your home for almost all of your life? Or somewhere in the middle? Let me know in the comments!