Friday, July 3, 2009

Fireworks are pending

I feel rather out of the loop since I have been on vacation. It's amazing how quickly the days go, and how you can lose track of news, and more.

Jude is doing well. He is frustrated because he is really wanting to hold his head up, but isn't able to. He is trying though, and I hope someday his body will cooperate with what he wants to do. I can really see the frustration in him that a normal stroke victim suffers from.

I am going to keep this blog short because I am working on a long blog. For awhile now I have needed to email the in utero MRI doctor who originally said she predicted Jude's outlook would be bleak. I needed to tell her that at only 19 weeks she was right in saying he suffered a bilateral bleed. There are many things I need to tell her, and I just need to find the right words. I am sure it will be a tear jerker for me so I am going to take my time. I will post it as soon as I get finished.

Before I got I would like to tell everyone how happy I am with Jude's new therapist Leah. I am afraid I cannot be here for his ECI meetings because of work. I am thrilled when I come home to new therapy items, instruction sheets, and words of encouragement from her. It's so nice to find someone that truly cares about Jude. Sometimes (not always) in the medical field the individual administering the therapy/diagnosis loses track that the child they are dealing with is indeed human. They begin to think of the baby, child, or adult as a stationary object, and lose track of why they went into the field. Luckily Leah, seems to have a genuine heart, and I like that!

Each year we can always see fireworks from the city's Independence day performance, outside Emily's window. This year I took Jude up to her bed so we could watch the brilliant display of color streaming across the summer sky. I stayed for a few minutes, and I noticed that Jude really didn't have any idea what was going on. I imagined him as a healthy 10 month old scooting across Emily's bed, and pulling himself up on the side to peer out the window. I smiled and gently kissed his head and fought back tears. I was thankful for him being in my arms, but I wished for more. As Ellen has frequently pointed out on her blog, it's okay to have moments like that some time. I have to remind myself that it's ok to cry every now and's okay!! The good news is we were all together as a family, and again we have a perfect view of wonderful fireworks from an air conditioned home. Smiles!

Have a wonderful, and safe fourth!!!

1 comment:

Annette said...

I know just how you feel about getting the weepy days. I get them too. The days when you look at your little one, and something breaks the illusion that you build for yourself, and makes you see that they are not just the same as all the other kids, and they probably never will be. It's those times that I greive for my little girl and the struggles she will face. Luckily, days like that are ususally pretty far apart and most days I am able to enjoy my amazing Katie for all the gifts she bring into my life.