In anticipation of summer vacation, we are experiencing some wonderfully carefree afternoons, evenings and weekends. My children have that excitement in them that only comes from knowing that school is almost out for summer. SK knows that she is nearing the end of her regularly scheduled therapy visits as well...it's a fun time of year.
Our girl has been seizure free ever since we went up on her medication...praising the Lord for modern medicine here. It has been a good couple of weeks for her, thank you for your prayers concerning these seizures. On a different note, I mentioned a while back that we thought the Medicaid program had found a nurse for Sophie Kate...well, it hasn't quite worked out. We have been through 4 nurses since then and to say that they are not reliable is an understatement. So please pray for this situation, I know that God has the perfect nurse already picked out for SK...we just really really really want to meet her.
Back to the good stuff...we have had some good weeks lately. Our girl is smiling so we are smiling. She has changed my way of thinking so much. I have said before that she is a priority organizer and it is so true. The time we have on this earth is short and there is no guarantee of tomorrow. Sophie Kate makes me think of the frailty of life as well. Sure something could happen at any moment to any one of us, I get that, but I have felt the frailty of life and I have experienced the extreme realness of that when it comes to my daughter.
I don't mean to go down a dark road here, but it is genuine in this moment. I don't think I will ever look back on things and wish that I had taken SK to more therapy visits (no offense at all to our wonderful therapists, we love you guys). I don't want to wish away every moment I have with her and the boys. And by that I mean not being in the moment, looking forward/wishing for the next vacation or focusing too much on getting through a certain appointment or waiting/wishing for the end of school, things like that that take away our focus from the most beautiful things going on right in front of us. When the day comes that I am called home I do not want to wish that I had done this or that...I want to have done it, I want to do it now.
I want to play a game with them. I want to hear their laughter and see their smiles. I want to watch them swim and play outside. I want to talk with them, while they will still talk to me. I want to watch a movie with them and read to them before bed. I want to love them, pray for them, teach them and watch them grow into young men with a heart for God.
I want to hold her and smell her. I want to talk to her, sit with her and smile with her. I want to experience things with her and I don't mean expensive material things. I mean like sitting outside in the swing with her while we watch her brothers play. I want to sing to her, I want to involve her. I never want her to be left behind.
The best days we have are the ones when we are all home together, no schedule, no agenda. I don't want to take these days for granted...they are heartbreaking but hopeful, difficult but joyous, exhausting but so worth it.