Some things on my mind...

My head and heart is so full of thoughts and feelings right now. I think that I need to get them out.
First I am so so sad to hear about one little girl that I have watched go through this SMA journey. She has been in the hospital so many times. Not all because of sickness, merely the effort it takes to live with SMA. They were just released from the hospital after a month long stay and now she is back to having the same symptoms. The family just doesn't know if another hospital stay is bearable. Little Tabitha might not make it through this one. I am sick to my stomach. What a cruel thing this is! Everything just became a little more real. That haunting feeling that is always on the back of my mind was pushed forward. With how well he has been doing, it's easy to forget that part. Well maybe not forget, but hardly think about. I am not ready to lose my Jonas! I am not ready to make those awful decisions that we will someday have to make. My heart goes out to this family.

Second is the idea of getting an in-home nurse. We have been approved to select our own nurse and have them paid to watch Jonas. There is no problem whatsoever finding a nurse, we actually have two wonderful people in mind. It's am I ready for that? I think about leaving Jonas and I feel really guilty. I feel like I am abandoning him. We do everything together. It's no problem leaving him with Whit and I'm not opposed to leaving him for a night. The idea of regularly leaving him just so that I can go do 'something' seems so selfish. What would I do? I have no money for shopping, so that's out. I'm not one for hiking in the woods by myself. I feel so silly doing things around the house while someone else sits with Jonas. I'm too much of a control freak and that bothers me to have a professional nurse come clean my house. I just don't know!!
Regular moms don't get a break from their kids. They don't have nannies (well I guess some do, but..) that come and watch their kids so that they can do whatever. Why should Jonas get the raw end of the stick?

Thirdly, on a more positive note, I was thinking about those of you who have left comments. Thank You! It's really nice to know that someone out there is really listening. Please don't be offended if you haven't commented...this is not a hidden agenda message, seriously. I like to hear from people and I've never really been sure the best way to let you know that I read your message. For instance..Erin, my cousin, that is so neat that you found our blog. It's been a really long time, but it means so much to me to hear from you. Cathy Groves, whom I've never met, you have made some of the most meaningful comments that have touched my heart. All of Whit's coworkers or families he's helped at Primarys, such a kind gesture to have you think of us. Gygi's, my cousins, you know I look up to you so much and it makes me feel like I've done something right when you approve. Ali, my Disneyland partner, you are so sincere in all your comments. Brooke, Laura, I'm glad that you'll still talk to me even though we never see each other. Of course all my SMA moms who know exactly the journey that we are on and understands every feeling because they too are experiencing it.
I want you all to know how uplifting YOUR comments are to me and how everyone of you helps me to keep going and to be the best mom that I can be for Jonas.

Those are my thoughts in a nut shell. Will you pray for little Tabitha. Pray for Jonas too.. that he will not get his daddy's, uncle Taylor's, or Arica's colds. Not after such a long run of really good health and not right before the good weather comes.

(please, please, now that I've said this. Don't feel like you have to comment. :) )