Nap is too much to ask

Can anyone tell me how my son can be totally exhausted at 10 am and yet, when I put him down at 11am, he is wide awake. He plays and talks in his crib for over an hour. Finally I give him 15 more minutes before I am going to finally accept that my monster is not going to nap. He falls asleep 10 minutes into my wait. Of course now, it's time for him to eat so I must hook his feeding tube up and try not to wake him. If I would have fed him after his afternoon feed, he would have still played and then napped until 5 and been up until 10pm. Ugh! 

He is lucky he's so cute!

More than I can handle

Well, yesterday was a long and exhausting day in Madison, both physically and emotionally. On top of Simon enduring 3 shots, a blood draw, and x-rays; we met with his geneticist. The good news is that they found another child with a documented case similar to Simons genetic disorder. Simon has 20 extra genes on his XQ22. This other boy has fewer but the ones that he does have, Simon has too. Which means that Simon will likely have the same "symptoms" as this other boy plus other affects as well. So Simon already presents with feeding issues, and muscle weakness. This other boy and Simon share developmental delays and small heads due to lack of brain development. They expect that Simon will have seizures, autism, and intellectual disability (mental retardation). 

His challenges are going to be physical and mental and although we have been through so much physically with him, I was hoping to avoid mental issues. It is so extremely hard to know that my child will have to struggle in this world, even more than I anticipated. I just want to protect him from the cruel ness of this world and right now I am still in the anger stage. I just want to take the pain he will endure in his little life. 

I feel alone, although I know so many go through this all over the world. I feel like I don't want anyone to know because I want to protect myself from the hurtful and insensitive comments people make at times like this. I know people mean well but a mother looking at this future doesn't want to hear that it will be alright, or you never know, things could change. No one just mourns with you, they want to fix something that can't be fixed. Which is the hardest part as a mother, I CANT FIX IT! I can take him to therapy and help him but there is no cure. Oh, and yes, I know that God can do miracles but I also know that it is not God's plan for everyone to be "normal". This may be the path that God has for us and our son and that realization is going to take a lot of time and faith to wrap my head around. 

God is our strength and I am so thankful He can be my Comforter too. He doesn't downplay my feelings or make me feel like my fears aren't real. He just stands next to me and holds me while whispering encouragement to me. Tis more than I handle, alone, so I expect this to grow my faith.