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!

21 Months-Old

And brushing his teeth like a big boy!

Nicholas got his first "real" toothbrush and toothpaste today. We had been using the infant toothbrush for way too long, I think! Anyway, he seems to like getting his teeth brushed better and he loves the taste of his toothpaste. It smells like bubble gum and what kid wouldn't love that, anyway?

It was beautiful outside today so I took advantage of it and did lots of yard work while Nicholas napped. I was surprised to see the rose bushes and hydrangeas starting to grow new leaves and the crocus flowers are already blooming while the tulips are starting to poke through. I guess February seems a bit too early for me, but I am looking forward to spring all the same!

It's hard to believe that in 3 months Nicholas will turn two! It seems like just yesterday we were anxiously awaiting his arrival and soon our "baby" boy won't be much of a baby anymore. He's definitely growing up right before our eyes!

This and That

Nicholas playing "crash" with his cars
Lovely Valentine's Day roses from Jeff

Nicholas's Cars Valentine's Day tattoo from his PT



Soooo...it's been quite awhile since I've updated our blog and I guess because there hasn't been too much going on lately. No news is always good news, I say.



Here's what we've been up to:

• The weather has been pretty nice here this month so Nicholas and I have enjoyed some leisurely walks around our neighborhood while soaking up some winter sunshine.
• Jeff's been busy selling all of his Jeep parts so he can make some modifications and improvements on his Toyota.
• We've been enjoying watching the winter Olympics together...I feel very patriotic about our country this year and love rooting for USA!
• Nicholas and I have been enjoying afternoon naps together. He's been teething, and I can always use a nap after a long day.
• I have been reading like crazy. At one point, I was reading three books at once. Now I am just reading one book at a time.
• I had to work on Valentine's Day so Jeff and Nicholas spent the afternoon together. Jeff surprised me with roses when I got home from work and he got some Butterfinger chocolate hearts. The best part of that day was when Nicholas said "wuv you" before I left.
• Nicholas had a play date last week with Claire and Logan Brumfield, two little cuties from church.
• Nicholas had a speech evaluation with Megan through the ESD. We don't have the results of the eval. yet, but Megan said she will probably start seeing him monthly.

That's pretty much it! Not too many exciting things happening here, just looking forward to some warmer spring weather!

A Beautiful Poem

Today, a college friend of mine, sent me this poem that she had found on a friend's blog. It's so beautiful, I just had to share...

Little boy, my little man, light and love of my life,
So precious, so gentle, you are my shelter, my shining light.

You are totally dependant on me, on your own there is nothing you can do,
But little man, this may surprise you, for I am just as dependant on you.

We seem to make each other stronger, just by us being together,
Sometimes when I hold you, I wish that moment would last forever.

At times when things get me down, I want to just sit with you for a while,
So you can speak to me with your eyes, and run to me with your smile.

Moments we've spent together are some of the happiest I've ever had,
I want to laugh with you when you are happy, and cry with you when you are sad.

I want us to lean on each other as we continue to grow together,
Because the love I have for you, little man, is a love that will last forever.

Some people may see a mountain and think it's much too high to climb,
But to you and I it's simply another hill, it's just a bit bigger this time.

We have some challenges ahead of us, but together these challenges we'll get through,
And I thank God everyday for this special gift, this special gift that is you.
~Kim Ambrose

Happy Birthday, Jeff!

Happy 28th birthday to my wonderful husband, Jeff. You are my best friend, an amazing father to our child, and an all-around wonderful guy. You have brought laughter, joy, and peace into my life and I am better person because of you. I am looking forward to dinner at Skamania Lodge tonight and your poker party tomorrow. I hope your 28th year is one of the best!

Love you, honey!

Winning Feels Great

Wow! What an exhilarating week! The Gwendolyn Strong Foundation was one of the winners in the Chase Community Giving campaign on Facebook. And while they didn't win the one million dollar grand-prize, they placed 6th out of 100 charities which is simply amazing in itself! Over 51,000 people voted which means over 51,000 know about SMA. They money for research is awesome, but I think the awareness is so important. Awareness brings support which is what SMA needs right now, especially in a time when a cure is so close.

I personally had over 370 friends and family members vote for the Gwendolyn Strong Foundation and had about 30 friends constantly posting the voting link, encouraging all of their friends and family members to vote. Instead of feeling like I ran a race by myself this week, I feel like so many loved ones carried me through the finish line. When I would get discouraged by the leader board votes, I would read my wall filled with messages of love and support and that is what kept me going. I have never been so humbled by such unwavering support of not only our family, but all of the other families affected by SMA. The stories and videos that other SMA families posted touched so many hearts that I know this disease will never be the same. People know what SMA is. They know how heart-wrenching it is for a parent to watch a child suffer from SMA. I am confident that a cure is within our grasp.

Thank you to all the supporters of the Gwendolyn Strong Foundation! We appreciate your votes more than you will ever know!! If you would like to read Bill and Victoria Strong's message, please click HERE.