Life with holoprosencephaly
Today we went to see all of Nathan’s baby friends. We had a wonderful time.
Here is a video of Nathan playing with the ball this morning. He is getting more and more hand coordination!
And some photos of the party.
And some photos this morning.
He put his hand in his mouth by himself!
Nate’s doing great.
He had a wonderful couple of days with cousins Jacob and Natalie.
Here are a couple of videos:
And another
And some photos:
Cousin Katie
Floating in the pool
Nathan continues to do well. He had his 6 month immunizations today so that made him a bit uncomfortable, but in general, he’s okay. We are pretty sure the problem was with the medication for GERD. So, so far so good.
Today someone said to me they felt really sorry for Nathan’s condition. It took me a second to understand why he would feel sorry. I guess that’s how far we’ve come.
When I got pregnant, Owen and I always talked about our “worst” fear being that our child wouldn’t be “intact”. Then when we got the diagnosis we just wanted him to live.
Now, it doesn’t matter what his skills or ability are, whether he develops typically or not at all. All that matters is his happiness. His peace.
I feel like the most fortunate person in the world to have Nathan. If someone asked me right now if I would take it all back I woudln’t. No way. I love my boy. He’s perfect just the way he is. He exudes so much beauty, so much joy. So much strength.
So our path may be different from a “typical” child’s path. But it’s so joyful, so powerful, so full of lessons.
So…I can understand how someone could feel sorry. But I guess it all depends on perspective.
I feel fortunate. It’s not because I have to and I’m just trying my best to deal. I genuinely feel so fortunate. With all my heart.
So. Last thing I do at nights..is appreciate my boy, appreciate his presence in my life. And first thing in the morning, with the first “Aguuuuu” and smile, I give thanks for another day with him.