Time has slipped past again. What a wild awareness of how priorities can be switched, rearranged, and completely forgotten. The last couple of weeks, my evenings have been spent fighting Liam to go to sleep. He has been getting 90% asleep and then waking himself up or getting uncomfortable somehow leading to his eyes popping open and we start the dance all over. A thought came to me the other night, a friend once shared she had read or heard that a child starts to break away from a connected consciousness and starts to become sovereign around two. Liam is turning two next month and I am curious if we are getting to witness this in action. Plus, there is another heart beat in our home now, and change is brewing. What a gift to have this little being remind me to ground, breathe, and relax, if I get wired, he feeds on that and we end up with pinches, tears, and a fussiness that is usually not present. I laugh because each time I think I am getting a hang of this mommy thing, the rules change, and I am at square one again, thank goodness, I am always up for an adventure!
There hasn't been much movement in getting Liam into the feeding therapy other than we have 3 letters of medical necessity that have been given to the DDD coordinator and we have requested his primary care provider to refer Liam back to the feeding evaluation. Each time I think we are done with this feeding therapy, another door opens and in we go!
With this new little being, we are wanting to gather information about how this little one is doing. I was confused with a blood test thinking that I was receiving a full panel of screens but in reality it was just for Down Syndrome. As I wrote before, the fear of a child having Down Syndrome is minimal since we know the joy that Liam has brought us and we already have connections to support a child with Down Syndrome so this screen wasn't exactly what we thought. And then there has been so much information about how Iceland has almost a 0% Down Syndrome population due to genetic testing and terminating positive pregnancies and my heart drops. All the false positives that were terminated and all the joy that is not present in our world. I also understand there are huge burdens for some children with Down Syndrome, and isn't that a possibility for any child? Being at Phoenix Children's Hospital I met mothers with 'typical' children diagnosed with terminal cancer who had been there for months, other conditions for frequent visits for testing or follow ups, therapies to be rehabilitated or habilitated. I guess what comes to me is that there are no guarantees. And why would one diagnosis be singled out to be terminated? A friend shared, the fear of difference, could be a reason, and that makes so much sense to me. My desire for adventure puts me in situations to meet differences, to stay curious, open minded, and open hearted, but some do not have that same thirst. So with all of this news, I am trying to stay curious, not take the decisions of others personally and to truly enjoy the absolute joy we have in our home!
