Matthew's 18th birthday has come and gone. As we sit together tonight each of us, Joe, Matthew and I, have come to difficult realizations in the past couple of days. It may have been obvious to those on the outside, but we are just now accepting that Matthew won't get the life we wanted for him back. I kept believing, and my boys kept going along with me, that Matthew would be able to go back to school and finish up his senior year. He might not be able to participate and earn his diploma, but he'd be with his friends and experience some of the fun of a senior year. RCHS is great, they have welcomed him when ever, and however, he is able. The thing is, messages and visits from friends are sparse now. The other seniors are busy preparing for the next phase of life. So is Matthew, but not how we all believed he would be.
Rehab Without Walls is providing his therapy now. We are very happy with them, they come into our home and provide services. The exact opposite of the plan to send him away from home; this is better for all of us though. God puts us where he wants us. Matthew saw his cardiologist this week and his pacemaker isn't working, that's exactly what we want. It doesn't need to work much, 99.3% of the time since it went in, it hasn't had to work. He's been released to wheel himself and his upper body movements aren't restricted anymore. As of March 1 he can begin to lift weights and build up his upper body. We have more follow up doctor appointments scheduled over the next month for follow up with more specialist than I knew existed three years ago. Among them a metabolic doctor. It seems the Serotonin Syndrome Matthew had was exasperated by a very rare (would he have any other kind) metabolic disorder. It means that an entire group of medications can't be metabolized correctly by his body, among them Serotonin.
And still he perceivers. Our son continues to be wholly and completely devoted to God. He's weary, he's in denial often, but he's stronger than I could ever be. Tonight isn't one of those nights though. He's lonely. Its hard to explain to the few friends still in contact, that he can't see them early in the day, even though they have a day off school. His tremors are so bad in the mornings that he can't always get out of bed. Its hard spending so much time with just your parents, having no privacy at 18 when you "should" be spreading your wings and enjoying more independence each day. Then there's the fact that our once strong, healthy, bright and athletic son now has to depend on us for everything; those who have never experienced being a caregiver like that can't imagine, he needs help to take care of every move he makes. It breaks my heart. But when I am coherent enough to think, to look to God, I realize what a privilege it is to still have Matthew here, to be able to care for him, to see how devoted he is to his Father and to be able go through this valley with him. So many health professionals have told us, "its a marathon, not a sprint." The marathon is going to last much, much longer. We are beginning to accept that now, its not easy.