A heart to heart . . . from deep within my weary Spirit. It's been a tough few weeks. Heck, it's been tough ever since school started - when the schedules changed. We all know that schedule-changes are just plain hard. They are especially hard on children. Changes in schedules are even harder on children who are under extreme stress, children with things like PANDAS.
This week, I met with Henry's teacher as well as the principal and other staff members of the elementary school where the boys attend. We had Henry's IEP meeting, and it went incredibly well! IEP meetings can be incredibly stressful for parents, even when they turn out well. As a momma, you want to make sure that your child is receiving every opportunity possible. You want to ensure their safety, security and happiness while at school. As a parent, you want to make sure that your child has opportunities to learn and grow in a healthy environment, despite any disabilities they might have. So, the days leading up to the IEP meeting are complicated, emotional and stressful - at least for me. You can imagine how grateful I was to have such a good meeting with these precious women!
At the IEP, I found out that Henry is bench-marking in his class. He is doing INCREDIBLY well! He doesn't want to do homework and he doesn't want to study for spelling tests (truthfully, he hasn't yet studied for a test), and yet he is excelling. Henry's also learning to make better choices at school, and he has a patient teacher who is determined to help him succeed in the classroom and in life. It is ever-so-clear that God wanted us to STAY in this house so that we could stay in this school.
Henry was thrown-off today for some reason and he ended up running from me and running from the school, while I was there to drop him off. After running to and from our home a few times and then back and forth to school, it was evident that Henry just couldn't make it through the day in the classroom. I tried it all, even petting the neighborhood cat several times (which was a true sacrifice for me, ya'll!). The secretaries saw that we were having a hard time getting into the building, so they sent Henry's teacher out to try to encourage him back in. Even his kindergarten teacher, whom he adores, came out to try to love on Henry and get him to come to school today. These ladies encouraged my heart and reminded me to breathe in the midst of Henry's outburst. I am so grateful to have their support. I know not every school would be this way, and I certainly don't take it for granted.
Life is hard and busy when I'm caring for Henry. It's very intense, although I don't expect everyone to understand. I didn't understand, although I thought I did. Mental special-needs and behavioral disorders are so much different than physical disabilities (like not being able to walk, talk or eat - like our Girls). I've always had compassion for families, mommies in particular, whose children suffer from these things, but it's a whole new ballgame when you are living it and trying to parent through it all. That being said, I rarely can use my phone. I don't get chances to call people back and many times can't text you back for several days. Emails are now the same way, as my time on the computer late at night has diminished. I'm now too exhausted to stay up, especially when we have a night nurse (thank you Lord for night nurses!!). I know I frustrate people, even my family, in not communicating well and believe me, it drives me nuts too!
I WISH I could do better with Henry. I WISH I could better take part in life, having the energy I used to. I just don't. Maybe it's my age, maybe it's my IC but it's probably just a messy combination of life and all it's current circumstances. I just want to make sure people know that I still love them, even if I can't be as involved as I once was. And when I don't call you back or don't answer your messages, it isn't because I don't value or appreciate you or what you have to share; it's just that my hands, heart and mind are too full for anything else at that particular time. I'm asking the Lord to make straight my priorities and allow it all to fall into place the way that HE sees fit. I'm asking Him to open my heart to how He sets that all into place too,
We have some big tests coming up for Henry, starting this coming Monday. We start the week off with a sleep-study and end it with a sedated MRI. I'm not sure how Henry will handle these changes in schedules and environments. It pains me to even think about it, really. Doctors and nurses, poking and prodding, different beds, different lights . . . would you keep Henry in your prayers as we face these things?
I want to thank everyone for your patience with me - for your patience with our entire family - as we still learn to navigate PANDAS and all that comes with it. We will always be learning, and that's okay. All parents do that, right? All individuals do that too. Life is constant learning, and that's a good thing. Holy Spirit, may we be more aware of the things you are trying to teach us, making us more like Jesus. With every situation, may we learn to rely on our Father for wisdom and guidance. Lord, be near to us!
*Enjoy a sneak peek at Lucy's bday photos (we celebrate her FOURTH birthday this weekend!):
