Tough Thoughts

Nate is now almost 4 months old and I still struggle quite a bit from day to day. Some days I adore him and other days I just want to hit the rewind button and try again for a typical child. Today is the latter. I have just never faced a "trial" that I didn't see the end to...right now, having Nate seems like a huge burden to me. He still isn't smiling (very, very infrequently, but never at me) and that is really taking its toll on me. It's the first real test of how patient I can be with these delays he will continue to experience. I just feel like I will be able to connect with him more once he starts smiling...

Last night, Bob and I were watching Gray's Anatomy. A father was sitting by his 6 year old daughter's bedside and basically waiting for her to die. I said, "That would be so hard to lose a child." and Bob asked very insightfully, "Which one?". Ouch. That hurt. It hurt because it is truly the kind of tough thought that runs through my head each day. I have to admit that it was easy to recognize that it would be devastating to lose Cody, but part of me felt it would be a relief to lose Nate. What kind of parent thinks that way??? I just can't help it....it's there and I'm admitting it. So many in this community of parents who have children with Down Syndrome say that our children with DS will bring such joy into our lives, but they haven't said when that will happen. I'm waiting and hopeful.

-Danielle

"Naked" Time

So I read recently that it is good for babies to have as much skin exposed as possible. We've had some warm weather recently, so I thought I'd give Nate a chance to maximize his sensory input with some naked time. Unfortunately, he still has the grasp reflex going on and hasn't learned how to let go. You can see this in one of the pics where he is grimmacing as he pinches himself one more time!

I am doing a lot better with Nate's physical therapy - learning that it's stuff I can do while I'm doing other things and not feeling as overwhelmed. I try to move him through many positions throughout the day (back, tummy, side-lying, supported sitting) and am working hard to encourage him to interact with toys and to develop both sides evenly (he tends to like to look, kick and move to the left). I've been a lot more intentional with his therapy lately and can see the difference. In this picture you can see him reaching up and interacting with 2 different toys - big deal!
The little guy still isn't smiling much, but I can really see the smiles in his eyes and hear it in his coos. Fortunately, we get a lot of smiles and laughter out of Cody!

-Danielle

Early Intervention

Therapy with a 3 1/2 month old? Yes, we're doing it and it's very important. Right now it feels TOO important and I feel terribly behind in the work Nate and I should be doing together. At this point the county sends over a physical therapist 2x/mo for an hour and a special ed teacher 2x/mo for an hour. The PT works with us on ways to help strengthen Nate's low-tone body and the special ed teacher works with us on ways to stimulate his brain and ways to integrate Cody into the process. The time with these women is very valuable. I'm not necessarily learning anything that earth-shattering, but I'm finding the consistency of their presence helps keep me accountable to spending time working with Nate (I don't want to be the one who didn't do the assignment!) But, right now I just feel overwhelmed. I feel like this is the easy stuff and I can't even find time to get it done. Yes, I could do these things with Nate each day, but then who does the laundry and dishes??

Okay, one day at a time, one day at a time. Breathe.....

Worn Out

I haven't written in a while and don't have the time to right now, but I wanted to get this video up. Nate had finished his physical therapy for the day and was playing on his mat and just passed out. It was so loud but it didn't affect him. Oh, be sure to catch Cody talking about "sitting on the potty" - he's been practicing lately.
I'll write more again soon!
Danielle