Since Levi was first diagnosed with CGD back in April we have done our best to not treat him like a sick kid. As we have come to realise that this is Levi’s normal, he doesn’t know any different. While other kids can play in the dirt & the leaves, our kids have never known that so don’t know that they are missing out on anything. They have lots of other experience that negotiate those environmental factors and are their “normal”
Just like Levi, we have only ever know what is means to raise a child with a chronic disease, we know no different, this is our life. So it surprises me when Levi is treated like a sick kid by other people. Yes our kids don’t have an immune system that works, though we work around that on a daily basis. It has taken many months of counselling to get into a frame of mind that is positive and to not dwell on the negatives, as life is short. Though it can be hard when you can see your child being treated differently by those around him.
Yes Levi is having a bone marrow transplant, though don’t treat him any differently than you would any other any other 2 year old. He still needs to learn boundaries & manners like any other kid. Obviously Levi will have bad days and he will get concessions on those days, though at the end of this process we would like our little man to be the best version of himself.
The thing that is making it tough right now is when people act like this is the last time they are going to see him. We pickup on that, Levi senses that & it upsets the whole family. Yes this weekend was particularly rough on all of us. This was suppose to be a “quiet” weekend for Levi, for him to hangout in his own environment, as he isn’t going to see the places he loves and feels comfortable for a few months. It turned out a little differently than we expected, with the whole family feeling exhausted and Levi becoming very emotional and unable to express the feelings he was experiencing.
We start the process of BMT next week, though we are still trying to keep Levi infection free, pack-up our life & have some family time in our home. It might sound like a simple list, though we are doing our best to channel ducks right now, appear calm on the surface when we are really stressed out and paddling ferociously.