I worry. A lot. A lot a lot.
I worry how how this is all affecting Sarah. Let me go back for a minute.
When Lukas was born, I was elated that his birthfamily had chosen us to be his parents. But at the same time, there was a sense of sadness because I knew for Sarah - nothing would ever be the same.
When health issues with Lukas cropped up, I felt that guilt again.
We are often on high alert with Lukie. If he starts to wheeze, we worry. He missed more school than he went due to illness. And now, he's at doctor's appointments, therapy sessions, and on daily meds. We watch him closely, analyzing everything from his sitting posture to his communication.
She acts out. Does stupid stuff to get our attention (both negative and positive). All of this impacts her too.
And through all of this, she still doesn't quite realize that there is something wrong with her brother.
He's just her brother. Her baby. Her Blukas. She loves him with a fierceness that I am in awe of. I wish she'd learn not to try to sit on him - but we're working on that. (She loves it when he sits on her though!)
But she is fiercely overprotective. If one of her school friends comes within a few feet of him when we pick her up from school, she'll protest. One time another kid accidentally knocked Lukie down and Sarah said, "DOn't hurt my baby!" She also watches over him at playdates protecting him from the big kids and tattling on those that bother Lukas.
So I'm concerned how she will react someday when people make fun of her brother for being different. I'm not naive enough to belive that this WON'T happen. It will. And she's a scrappy thing with love bursting at the seams for her baby brother - and she's not going to stand for it.
We had planned on having Sarah home for the summer. Her school is very intense and I thought she needed a break. I also thought our bank account needed a break too. But today, all of that changed.
She was home from school sick and went with us to physical therapy and speech. Complete. Disaster.
She was needy. She wanted to participate and play on all of the "toys". She would talk for Lukas in Speech and retrieve the things he needed to during PT (to get him to walk). It made me realize 2 things:
1. She really does notice the things he can't do and compensates for him.
2. Having her home this summer isn't going to work.
Nothing about this situation is fair. Trust me. I want and desperately crave for it to all be okay and be fair. But it isn't. That isn't reality right now.
But it is not fair to send the message to my sweet girl that her needs are not as important as her brother's. And that is what having her at therapy sessions does. Physical therapy and speech were just an hour total. Having her sit through 2 hours of ABA therapy and 1.5 hours of driving seems insurmountable.
So she'll be in "school" this summer. And while it isn't what I planned, it is best for her right now. It allows Lukas and I do our therapy stuff and grab her early in the afternoon and hopefully squeeze some fun out of this summer after all.
Here are my 2 trouble makers in action. Sarah was supposed to be in timeout, but Lukie came to sit with her (in solidarity?) and things got a little out of hand. Love these two more than anything.