Although we've had some really special and sweet things happen, it's hard for them not to be overshadowed by the heavy cloud hanging over us. I CHOOSE to enjoy the good things while they are here; to be happy when we can, to the fullest extent, because I know how heavy PANDAS is and I know how taxing it is on us.
For a long time, I've been really patient with Henry. God has given me a heart for him - the baby God clearly told us to have! He knew what He was doing by placing mercy within me as a spiritual gift, because I need to exercise that SO OFTEN with Henry Mac. During flares, it's almost constant defiance that he cannot control. I know many say, "Just make him obey" or "Make him do it; you are the parent". But it is so much more than "just" making him do things. This is a disorder that messes with his mind. I never know when He will turn around and hit me or run outside with the dog (which happens quite often, even though we try out best to keep this from happening!). It's walking on eggshells 24-hours a day, and I am more weary than ever.
I've said that behavior disorders are harder to me than most things we have dealt with concerning the Girls, and I still do believe that. It's come to a point that I physically feel, almost exactly like I've been staying in the hospital with one of the girls for months on end. That's how tired I am. That's how worn I am. That's how taxing this is on all of our family. It is a constant battle in every way.
It's like I have so many plates spinning and none of them can stop. I keep dropping them, and they chip and crack, but they still spin. Life goes on. Lucy's busy life cannot stop because of PANDAS. Conner's life cannot stop because of it NKH or PANDAS. We are just learning to deal with it; I'm learning to keep things spinning, but I'm afraid I haven't been doing a good job. I apologize if I haven't been able to get back to your texts, phone calls or FB messages. I'm doing well just to keep my house clean and to know where my kids are at all times. Thank you for giving me grace as I try to prioritize and keep my family above everyone else.
Really, I just want Henry to be healthy, safe and happy. That's what we all want for our children, right? I know Ellie Kate is all of those things and more, as she is with Jesus. And I know that Lucy is stable and very happy at this point, even though she still is having tummy troubles. Conner is happy too, and changing into a wonderful, thoughtful young man. But for Henry - I don't know what else to do to help him, and that's why we are continuing to seek help from many different angles, including from doctors and clinics from out of state.
Please pray that our patience for Henry will be multiplied. Pray too that we will have absolute clear direction and insight on how to help our Precious Little Boy. Mike and I long for peace in our home. It was there - it had come into our house after Ellie's death - and now it feels like it's been stolen. Lord, restore peace to us once again!
Conner and Henry at the Thunder Game
Lucy and Henry at our friend Emmy's Birthday Wish -
the Cinderella Movie
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