Thursday, September 12, 2013

Max goes to school, and a health update

It's been a while since I last updated and so much has happened. Max turned 2 in May. We celebrated at home with family and a Lightning McQueen cake. Max was thrilled. At the time, he hadn't even seen either of the Cars movies, but he knew he loved Lighning McQueen. Fast forward to now and he has two Lightning McQueen shirts that he rotates wearing almost every other day, shoes, a backpack and a lunch kit. He also has Lightning stickers that he puts all over his legs almost every day. So the jury is still out whether or not he likes Cars.

Max started school this week and I was absolutely amazed by him. Being in the shadow of Clare, I guess I never realized how social Max can be. He introduced himself to almost 5 kids as we were walking to his class. He went right into his room and when I kissed him good-bye not a tear was shed. His teachers told me that he was encouraging other kids in the class that were crying by telling them, "Don't cry! It's going to be alright." What a sweetheart! I think he would go to school everyday if he could, but I still love having him around on the three days he doesn't go. We spend our time running errands, going to the library story time, and playing around the house. He loves to build with his blocks and we chase each other pretending we are racing cars.

Before school started we went to see Dr. Kyle for a six month check up. Max did great with all of his tests (ekg, echocardiogram, etc.) He even had to run around the office to see how much his blood oxygen desaturates when he's active. His normal blood oxygen is around 85. When he runs it drops to 70. As a mom, it's a little alarming because he shows physical signs of desaturation. His lips become very blue. His fingertips become cold and of course he is breathing really hard. It was reassuring to be able to show Dr. Kyle and have him look me in the eye and say, "That's completely normal, for him." The only hiccup for the appointment was that his blood pressure was high. We followed up the following week with the pediatrician and it was back down to his normal. (Little buddy was anxious during his appointment!) Max definitely had a lot of questions during the appointment this time as his vocabulary has exploded in the last six months. We were looking through his photo book once and he saw a picture of him riding around the Cardiology floor in a wagon and he said, "Oh. That's when my heart was hurting." (He was 10 months in the picture) I guess I knew his questions were coming, but I hadn't prepared what I was going to say to him or how much I would tell him. I just kept reassuring him that his heart is special and everything is going to be just fine.

Today I received and e-mail from Dr. Kyle updating us about his meeting with Max's surgeon. He said they are ready to start the pre-surgery work up. The whole process could take weeks or even months, so nothing is going to happen soon. He also made it clear that they are going to open his heart during surgery to see if they can fix everything and give Max full function of his heart, but more than likely it won't be possible and he will have a Fontan (or use of only the right side of his heart). So basically, it's going to be a long complicated surgery.

For whatever reason I took this pretty hard today. It's not new information. We have always been told that more than likely he would go the Fontan route, but there was always this small sliver of hope. I have held on to that hope since the day Max was born. It was hard to read those words today. On paper. So permanent and so final. I've prayed for total healing even when it seemed, in my mind, outrageous to do so. It sounds insane, but I struggled to ask God to completely heal my son. Why me? Why us? I don't need a miracle to believe. I can just trivialize all of this and put it in a neat box in the depths of my mind. I can simplify it and act like it's just one more small hurdle to climb over on the road of life. That's pretty easy to do. Relying on myself is easy for me to do. But it's not what I need. I need to be humbled enough to not just ask for God to heal my son, but to beg for healing. I need to be humbled enough to say to God, take all of it. Take my fears. Take my anxiety. Take all of it and quit allowing me to try to just rely on myself. I can't do it. Faith is humility. Faith is trust. I need to be humbled enough to trust.