1. Spine surgery 2.Life lesson

Another visit to the hospital. D went this time! It was with a new doctor who we were referred to for a spine surgery consultation. The best we were told. Matt's spine is twisting terribly, and apparently it twists much like a race track, causing the muscles to deform around his vertebrae. Operating on it could mean 3 months in the ICU, a likely chance of contracting pneumonia, and a great chance of that being fatal. We're not going ahead with the surgery. Truth is it won't really improve his life much, it'll just make him straighter, make positioning easier. Have you seen him lying down lately? He's shaped like an S! It's common in these kids, the doctor says, typical really. It's just that Matt is such a severe case. (yeah, we know!) We need to wait and see if the baclofen pump helps relax the muscles around his hips, and hopefully slow down the curving of his spine. Surgery may be our only option one day, but for now we won't cross that path.

On a more personal note:
When Matt was born, I had all the hope in the world that he would be healed. I thank God for that hope. I don't regret a single day of it. It helped me get through some of my roughest moments. I still believe in a God that is able to do anything, which means I still believe God could heal my son, if He so chooses. I have come to realize though, that that may not be on this side of heaven. I'm okay with that (yet I will never stop praying for it).
I searched hard for a purpose in Matt's injury. Was it a punishment? A lesson? People love to try and figure this out, and many have suggested to me that I likely needed to learn something. I think they need to make sense of it, I understand that, however I do disagree, thankfully. It doesn't mean that I don't have stuff to learn, I have SO much to learn, and I will try to learn whatever it is I can from this. It's just I don't believe that God works that way, let's just leave it at that.
I've never been a "why" person, but I have prayed constantly that the purpose (whatever that is) of Matt's injury would come into fruition so that he may be freed from his suffering. Matt hasn't been healed but I figured out something and it was HUGE for me. I am a slow learner (it took me 7 years) but I have been given the greatest gift of understanding something and I never thought I'd be able to say it. Having Matt has been such an enourmous blessing in my life. A gift, a privilege, an honour! That God would trust me with Matt humbles me beyond understanding. That God would give me the chance to see life differently has blessed me abundantly. I would NEVER have chosen it, and if I could erase time, making it so Matt would have never had to struggle and suffer, I would do it. That isn't possible, so instead I accept this as it is and in many ways it's been the most beautiful GIFT. For life on earth is so short in the view of eternity and having him has made me feel richer, fuller and, in many ways, happier. Many of you probably don't understand this, I don't really either, but it's true. Despite the constant heartache (and there is ALWAYS heartache) and difficulty that comes with having a severely disabled child (and it is very, very difficult) I praise the LORD, for His plans are so much greater than mine.

Baclofen Pump

We went to the hospital on Monday for yet another visit, met with a bunch of doctors hoping to improve his life some. They would like to put a baclofen pump in him. (Baclofen is a medication that decreases the spasticity, he takes it orally now, but this way it is delivered in smaller amounts throughout the day with an overall better effect). The device is the size of a hockey puck and it sits under his skin near his stomach. It has a tube that goes around to his spine, where the medication is distributed. It gets filled as needed, every few months I believe. It's strange sitting in there, even though I have done it a hundred times. 9 people starring at me and Matt, asking many questions about him and his life, wanting to know again how it all began. I don't like it. It's worth it, of course, if it helps him even a little. I had to go out to fill the parking metre, I was so glad as I was choking back the tears, I took a drink of water and a deep breath before going back inside, it helped somehow. I know people don't see him as I do, as a precious little boy, whom I have all the dreams and wishes for, as any mother would. Somedays I feel like I have failed him, unable to make him better, not able to give him a fair chance. I live with the fact that I couldn't even bring him into this world safely. Logically I know it wasn't my fault, that's why we go to doctors, but still, I failed at the first chance of protecting my son. I know there is a purpose, maybe I won't know it until I'm in heaven, but I will know it one day. I'm sure it's very remarkable. I know his life has changed me, how could it not! Someone once told me (a few years back) that "someone" wondered why everything was always about Matt for me. Why? Because it is. It simply is.

The Beginning

I suppose I should start this blog by telling the story of Matt, how his tough entrance into this world started a journey we never expected to take. Matt was born 7 years ago, in the fall of 2000. He suffered from a preventable brain injury due to lack of oxygen during his birth. He started to seize almost immediately after he was resuscitated. Had the doctor used a fetal heart monitor, I would have been given an emergency cesarean, and his life would have never been so tough. I wish so much I would have known more going into Matt's birth, but we can't look back, so we focus on today, and hope for an easier tomorrow. He has spastic quadriplegia cerebral palsy caused by hypoxic ischemic encephalopathy. He is completely dependant. I am his mom, and I started this blog for many reasons. A little for others, a little for Matt, but mostly for me. So that those who want to know what's going on can just look, and to give me a way to tell Matt's story, one day at a time.