Now that I have Sadie, I'm still on a train bound for crazy-town...but what I stress about is a little different. Let me show you what I mean...
Sadie is one and a half and pretty much all she does is lay on the floor or sit in her chillout chair. She doesn't do much...will she ever? We have an appointment with the wheelchair clinic this week and, I never thought I'd say this, but, I'm excited to get a wheelchair for her! Why would I be excited??? Because having a wheelchair means a strong, sturdy, supportive way to transport Sadie. Right now we're using a stroller that was fine when she was a baby, but she's coming up on 27 pounds now and the stroller just isn't cutting it for our mobility needs. Secondly, a "real" wheelchair gets us access to certain things and special treatment. When flying, we'll get to seat first, and there will (hopefully) be a little more urgency about having her wheelchair waiting for us in the jetway (instead of baggage claim...ugh). And maybe, just maybe...we'll get a handicap parking permit!!
But what does a wheelchair mean for her future? Remember when we saw that orthopaedist who told us Sadie would never be independently mobile? I've thought a lot about that comment. I've talked about it with the physical therapist, with my mom, with Brian, etc. and I don't see Sadie being independently mobile, I think she will always need a wheelchair. However, what I do see is Sadie being about to get around the house without her wheelchair, be able to climb into the car, and be able to walk from the jetway to her seat on the airplane. Of course, these things will probably require a little assistance. But, if she uses a wheelchair at school, at the mall, at Disneyland, that's okay. (plus hopefully we'll get to go to the front of the line and get on the roller coasters faster!!)
The future for Sadie scares me. Will she be able to talk at all? Will we be able to travel with her? Will she be able to sit ever? Will her hair be long and pretty to disguise her tiny head? Will we have to get a wheelchair van? Will her brothers and/or sisters be embarrassed of her? Will we ever have an empty nest? And what about potty training???
Recently I had a conversation with the physical therapist about potty training. I told her I'd like Sadie to be potty trained by the time she's 10. I think that's a reasonable goal. She told me she thinks potty training is totally doable for Sadie and that we should think about maybe starting when she's 3 or 4. That's exciting...but scary. How will she communicate that she needs to go? Will she be able to sit and balance herself on the toilet? Will she be able to get to the bathroom on her own or will I have to take her in there, strip her, and place her on the toiter? (wouldn't it be nice if she was mobile enough that she could take herself in there when she needed to go?!) See? Scary.
I guess we'll figure it out when we get there.
I also think about my own personal safety. Sadie is over 25 pounds, and growing so fast. She's huge. It's getting hard to lift her from the floor. Getting her in and out of the car is sometimes a struggle. What would happen if I hurt myself? If I can't lift her, who will??? What about when I get pregnant again? I can't be lifting 30 pounds of dead weight. And she's not even that big. She's one and a half...she is going to get so.much.bigger.
The future is scary for all parents, I think. And if I weren't worrying about how to change a diaper with periods and pubic hair, I'd still be worrying about periods and pubic hair. Instead of worrying about teen pregnancy and will she marry the right boy and will she get a college education, I'm worrying about how I'm going to lift her, and if she'll ever be potty trained, and when we'll ever get rid of the tube and she can feed herself. I worry about seizures and hip surgeries and wheelchair vans. But no matter what I am worrying about, the lesson is still the same...I need to just enjoy her now and worry about the future when we get there.