 Alex and I talk about the future sometimes. We'll be forty soon enough and planning is important, right? We talk about a small retirement condo uptown. A beautiful view of the harbour. We could go down to one car and walk to the nice restaurants. Then one of us says it:
"Are those condos big enough for three people?" It's a legitimate question as the condos are quite small and the second bedroom is often considered a small office. It's the fact that we must ask it that hurts. Will she still be living with us? It seems likely. In fact, we can't picture our future without her living with us, but we wish more for her. We wish so much more. I feel guilty typing that. Sure, she could ultimately run a fortune 500 company, or invent space shoes, or be the first female MLB closer but we have to prepare for a future where her awesome little self lives with us because we can offer her what she needs. Will she read this someday, and say: "Oh, Mom. You were so dramatic. When I come home from M.I.T. for Christmas break I'm going to take you out for a drink." I feel guilty typing that. I know what you're thinking. Everyone's child's future is unknown. We raise them right and we hope for the best. I don't know how to tell you it's different, except to say that she's been given a few more challenges. Challenges I am not sure the world understands. I'm not sure I understand. I feel guilty typing that. So, we plan for every scenario and we worry. We worry so much it hurts. We think about her sister. She is so smart and sweet. She already feels responsible for Kate, in the best possible way, of course. Will it always be this way? Her dad and I hope so. I feel guilty typing that. I've explored these feelings enough for tonight. Thanks for listening. I think I'll take a break and pour a glass or three. I feel guilty typing that.
8 Comments
9/26/2015 04:31:07 pm
As I read this, I think of my brother and his wife. They face a similar situation as their oldest child has down syndrome. I read your comment about Kate's sister and think of my nephew's younger brother who is the same way. He looks out for his big brother in those moments when they're not being boys/brothers. I read your words and think "Plan for the worst and hope for the best."
Kerry Fantham
9/26/2015 04:39:24 pm
I was is the same thing when my son was Kate's age. He is 13 now. I have changed that tune! So much happens, so much growth will happen between now and then. You will be alone with your husband in the future and beautiful visits from your amazing children and you will miss them. But you will be happy!!!
Jamie
9/26/2015 04:52:01 pm
I soooo get that. So much so, that I don't even think about what our retirement might look like, because we have a very handicapped son with sensory issues who is also blind. There is just no fun way to think about that, so I do one day at a time.
annie
9/26/2015 05:11:00 pm
You are doing just the right things. And every parent that cares about his child worries. She and her sister are both amazing creatures, different but amazing and beautiful. Try to enjoy the things that both the girls are showing you. The fact that each shows you a different world, their world, is a bonus.
Yvonne
9/26/2015 09:10:12 pm
We talk about this scenario too. He's 13 and won't be independent so it's us, a group home or his very responsible older sister. We've started talking to a financial planner so we can be prepared for whichever option is in his future
Lana
10/9/2015 01:01:27 pm
I so understand all of your concerns. But with the right help Kate will do great. I know you will leave no rock unturned to assist her. You are wonderful parents. You are doing a great job. Don't ever feel guilty.
Cindy
10/12/2015 08:03:29 pm
I completely understand and I am right there with you. My two youngest, (25 and 27) are now adults with autism and still living with my husband and I. (He, being their stepfather, so these are not his own bio. kids.) I wonder every. day. if we will ever get the chance to be "empty nesters" like most of our friends are now. But I must take it all one day at a time. It seems resources are abundant for the younger ones on the spectrum now. Where we have failed as a country is in not preparing resources for when these kids are adults and need help getting out on their own.
Shonda Crawford
10/12/2015 08:13:52 pm
I am with you. My son was finally diagnosed as Asperger's, in high school, he's 24, now. We're getting him behavioral therapy for ASD and he's working in a Halloween store. He also took welding in high school and community college, and has always been a germaphobe! He received 2 Certificates in Mechatronics, and 1 certificate in Video Editing. He's decided to become a Journeyman Electrician. Easier said than done. He's still struggling with friends and meeting a girlfriend. His older brother has demonstrated that he most likely won't step up and make sure that he will be good, if/when my husband and I are gone. I'm really worried. Taking it one day at a time! Miles to go! We want nothing more than for him to be on his own, but reality is pointing another direction...good luck, best wishes! Your comment will be posted after it is approved.
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