A Change of Heart

On Friday when we received a very mean and judgemental comment on our blog from an anonymous person, I was hurt. No, I was crushed. This person decided to judge Jeff and I on our care for Nicholas (or lack thereof, in their words). As parents who love our child tremendously and who do anything and everything we can to be proactive about his care and his daily struggle with SMA, I felt like I had the wind knocked out of me when this person decided to tell me how horrible a parent I was because my son does not yet have a bi-pap. Do I think a bi-pap is important in the care of SMA? Certainly. Do I think Nicholas will need one eventually? Yes. It is something I think about often but his pulminologist does not think it is necessary for him at this time. Will he need it in a few months? Maybe, but I cannot make that decision on my own. I trust Nicholas's doctors. I fight when I feel it is right for him and push to get him things he needs, however, I also have to trust that his doctors are also doing what they think is right for him at this time, too.

So after reading this comment I felt dejected and deflated and started to realize how many people there are in the world who just want to hurt others. People who have been so hurt themselves that all they want is for others to experience the same pain. I started to question our decisions regarding Nicholas's care, I started to feel like maybe I wasn't doing all that I could for him. I started to think about all the unnamed people reading our blog and judging us from afar and I began to feel overwhelmed. As an optimist I tend to see only the good in the world and the good in others, but now all I could see was the bad, the mean, and the ugly.

My saving grace came Sunday evening when I found an online link to one of my favorite shows which I happened to miss on television while I was at a family dinner. Tonight's Dateline NBC was about a family down on their luck-a single mom with three children, two of which suffer from SMA-and a community who comes to help them in their time of need. After watching the video, my optimistic self began to emerge again. Not only are people good, but I think that for every rotten apple, there are hundreds of perfectly sweet ones. It makes me realize for that one awful comment, we have had hundreds of really postive ones. We are so loved and supported by countless family members, friends, SMA families, and people in our community. It made me realize that we are really, truly blessed.

Click the link below to take a look at how a small town came together to help one family: It's called Circle of Hands and it's an hour long program, but broken into smaller parts, so you can watch it all at once or in 10 minute sessions. Enjoy! http://news.mobile.msn.com/en-us/videos/detail.aspx?uuid=31ed788e-57a6-4758-ae49-605f8faf7fd2

No Longer Public

Our blog will not longer be public, due to obscene comments by an anonymous individual. If you would like to continue reading our blog, please send me your email address and I will add you to our invited readers list. Thank you for understanding.

L-O-N-G

Yesterday I went to Costco for some groceries and decided to pick up some clothes for Nicholas as well. I bought him some PJ's and some summer outfits and was surprised when I found he needed a size 2T! He's growing so much, especially in length, that it's getting hard to remember him being a tiny little baby. He's is definitely on his way to becoming a big boy now!

His PJ top reads, "Dad says I'm in Charge" which Jeff and I thought was so funny because while we have a set routine and Nicholas has such a laid-back attitude, lately he's become a very picky eater, so at mealtimes he is definitely in charge! Jeff and I will often give him several food choices simply because we want him to eat. However many choices he has, though, often he just wants yogurt, crackers, and Pediasure. Oh well, as long as he's eating something we're happy!

Happenings

I have been severely neglecting our blog lately...so it's time to catch everyone up. This first photo is one of Nicholas practicing the joystick on one of his toys. Because there hasn't been a power chair at Shriner's for him to practice on for several months, this toy has been helpful in getting him use to the joystick motions.
This is a photo of Jeff's finished truck project. He lifted his truck and converted it to 4 wheel-drive. It took him about 2.5 weeks to finish and now all it needs is new exterior paint. I think he did a great job!

Here's a picture of my two sick boys. Jeff couldn't muster a smile, but Nicholas always grins for the camera...even if he's feeling yucky. It was a short-lived virus-all three of us were congested for about 48 hours and Nicholas is still hanging on to some of his phlegm, so he's been getting suctioned everyday to take care of the excess.

One of Nicholas's silly grins :)


Last week I received my master's degree certificate in the mail from Washington State University Vancouver! I was so excited to receive that piece of paper. I am officially done with school!

Nicholas has been wearing his brace for the majority of the day now in order to keep his spine as straight as possible. He loves playing with his pegboard stacking blocks. He sticks his fingers in the small holes and pulls them out one by one.

Therapy with Julie. She wore cute bunny ears to try to get Nicholas to lift his arms and grab them...only it looks like he was more interested in his cousin Zoie who comes over on Wednesday afternoons now for early release.
After Julie wore the ears, Nicholas got to put them on for awhile.


Last Thursday-Sunday my wonderful co-worker, Jamie, and I went to a religious education conference in Anaheim, CA. We had a wonderful time and enjoyed soaking up some sunshine! We got to eat dinner with my bestie, Lyndsey, we attended several awesomely inspiring classes, went to two amazing masses, walked to Disneyland (but didn't buy tickets because spending $97 for 5 hours in the park seemed a bit crazy), ate at yummy restaurants, and met some lovely people. The highlight of the trip was listening to a keynote speech by Mitch Albom (the author of several books, most well-known for Tuesdays with Morrie). He was so inspiring and so well spoken that the two hours he talked seemed to zoom by. There were over 40,000 Catholics there which makes it the largest Catholic conference in the world. All in all we had a wonderful time and while I enjoyed a break from the normal routine, I was so happy to get back to my two guys on Sunday!
Also, Nicholas turned 22 months while I was gone and since I have never missed a monthly birthday...Happy 22 months sweet boy!

Spring

My favorite sign of spring is this beautiful tree in our front yard. It makes me happy to sit on the sofa by the picture window and take in the beauty of spring!