Sleep is not over rated. It gives fresh perspective and new life, there have been times that I have gone so long without sleep that I can’t think straight and don’t really know what’s up or down. ( I have even sported bruises after walking into walls)I find if I get bad news, frustrating news or just ‘non’ news (like a good ‘wait and see’) I need a day or two to recover from the emotional drain it leaves in it’s wake. Today, faster than usual I have woken up feeling a little better. Yesterday, Josh expressed a desire for apple juice (this is a common refrain from him) but yesterday the difference was that he added a word that most of us use without thought, a word we all use in 90% of our daily language, a word difficult to teach, a word that connects things to each other. Yesterday, Josh used the word AND. He wanted Apple Juice AND cookies. Sounds simple right? Yet, the word AND is not something I have taught Joshua. It’s a hard concept to learn and I have been so focused on teaching him words and pronouns that the word AND just didn’t factor in. This morning, the first thing Josh said to me was ‘Josh AND Kaper stay home today’. I asked if he wanted to go out and do something and he no. Funny isn’t it? How a simple, everyday word like AND can not just connect words in a sentence but can connect an epiphany to my non caffeinated brain?
Listening to Josh talk about things, to hear him use a connector word that I haven’t taught him made me realize that even though he’s not getting the therapy he needs right now, he IS still making strides, he’s still learning new words and now, now he is learning the beginning words that connect a sentence. Whatever pathways in his little brain that have been damaged from the stroke are slowly being knitted back together by the hand of God.
I have read a lot about the plasticity of the brain, I have heard some pretty amazing stories of kids and adults who have suffered severe brain damage and still come out as if nothing at all happened to them. My prayer for Josh is that he is on that road as well.
Last night, as I racked my brain for new things to try for Josh, Tim looked at me with a true kindness and said ‘you’ve done everything you can, you need to let it percolate for awhile and see what happens, see what your contacts come up with’. That frustrated me and I expressed that to him and his response was this ‘you need patience’. Yes, I am once again introducing that heinous character trait that I lack, the one that God has been telling me for two weeks now that I need to strengthen.
I was sitting there yesterday dealing with a few things, the camp rejection, a letter from the Cardiologist about what we need to raise awareness about in regards to CHD awareness (another day, for another post) and then I recieved a letter from the rehab hospital where I was asked to allow Josh to be put on the list for the Canadian registry for kids with Cerebral Palsy and I felt like screaming?! All this work, all that I have been fighting for for the past 4.5 years and they don’t even have his diagnosis? He hasn’t got CP so why would we get a letter about the registry. It made me wonder if they had put his chart in the wrong pile, it made me question if he was on the list for speech after all. As I read the letter from our Cardiologist I began to see these mountains that need to be climbed in the way that we handle CHD adults, or just simply how desperately we need to be graduating students to be specialists in CHD. Its’ a lot. There is a lot to do. Teaching Josh to speak, getting him to school and helping him to be successful there. Navigating the system to ensure that Josh is getting all the help he might need both now and later. Yesterday I allowed discouragement to worm it’s way into my heart, to feed my doubts and question my ability as his Mum to do all of this. I questioned if I should just give up. I questioned if maybe I wasn’t the right person to be helping to raise awareness for CHD, I questioned my ability to teach him to talk, I questioned my ability to properly parent my son.
I was a terrible student… I mean really!! I hated school!! I would rather DO than learn about doing. I would rather practice than study theory. I would rather create a photo with my camera than read a book about creating that same image. So when it comes to Josh I feel sufficiently inadequate.
However, hearing Josh say ‘AND’ yesterday and again today has made me realize that my job is not for him to learn… it’s for me to do my best at teaching. If he learns, it’s not because I did it… but because HE did.
The main thing I am realizing? AGAIN… is that this is NOT ABOUT ME. This is about Josh, it’s about his healing, it’s about his fight, it’s about what God is doing in and through his life. I am simply here to guide, play taxi and pray. I think every morning I need to start the day reminding myself that God has this. Disappointments come in life, they happen. There are kids out there right now that are dealing with worse. There are parents who have more on their plate, we ourselves have had to deal with worse, we have had to sit beside and pray for his life while he was blue and lifeless, and if God can bring him from there to here, then my guess is that he can bring him a lot further and that Tim is right. I need to be patient.