A Mother's Worries

Every mother will tell you she worries about her child. A scraped knee, a lost teddy bear, a teenager's first broken heart. But as a mother of child living with a terminal illness, my worries are very different...

I worry when my child sleeps an hour past his regular waking time, for fear that he's no longer breathing.

I worry when my child cannot cough up mucus from a regular cold, for fear that the mucus is entering his lungs causing pneumonia.

I worry when my child has difficulty holding a spoon or a crayon, for fear that his muscles are deteriorating faster than we think.

I worry that if my child does not start putting on some weight, he will need to have a feeding tube surgically inserted into his stomach to feed him.

I worry that someday when he realizes he is different from other kids, he will ask us, "Why can't I walk?"

I worry that kids will make fun of him when they see him in his wheelchair.

I worry about leaving Nicholas, even just for a few hours, for fear that he might not be alive when I return.

I worry that someday if Jeff and I have healthy children, they will never know their wonderful big brother. They will never know how smart he was, how silly he was, how he could tell you exactly what he wanted with his facial expressions, how much he loved to cuddle, to sing, to play. They will never know how much he loved Dora or Max & Ruby, they will never know how happy he made his mommy and daddy, or how many lives he touched.

I worry that every day is the last day with my child.

This is just a short list of the numerous worries I have for Nicholas. I would give anything to worry about a scraped knee, a lost teddy bear, a broken heart.

My friends and loved ones, what would you do if this was your child, your nephew, your cousin, your grandchild? Wouldn't you do absolutely ANYTHING you could so another parent wouldn't have to experience these kinds of worries?

Please take 30 seconds of your day and vote for The Gwendolyn Strong Foundation in the Chase Community Giving campaign before Friday, Jan. 22nd at midnight. http://voteforsma.com/. Please post this note and ask your friends to vote as well. It may just help save our child's life.

Guess Who Turned 20 Months-Old Today?

Our little munchkin is now only 4 months away from turning two...and as Nicholas would say, "Wow, wow!" I can hardly believe so much time has passed since he was born, it literally seems like we brought him home from the hospital yesterday.

Today was very busy for us. Nicholas had a 9:00 a.m. therapy appointment a Shriner's, then a two hour nap, then more therapy with Julie and Ashlee (pictured above). Then this afternoon the Lewis kids came to visit and after they left Nicholas and I took a two-hour nap because we were worn out! Jeff, Nicholas, and I enjoyed a yummy pizza dinner (it was Jeff's night to cook), and spent some time cuddling together watching TV and reading. Daddy gave Nicholas his bedtime bath and the bottom photo is a cute little smile after he got out of the tub and was getting his jammies on. What a wonderful day to turn 20 months!

Nicholas, you are the strongest, bravest, cutest, most lovable boy I know. I would not have changed one second of these 20 months. Mommy and daddy love you with our whole hearts!

Writing With Chalk

I have been so busy recruiting my friends and family members to vote for The Gwendolyn Strong Foundation over on Facebook that I haven't had much time to blog! Anyway, go to http://voteforsma.com/ to cast your vote to help SMA...there's only 3 days left so we need all the support we can get. It only takes a minute and it's completely free. If you don't have a facebook account, sign up for one and if you don't want to keep it, simply delete it at the end of the week-simple as that.

Here are a couple of photos of Nicholas sitting at his little table. I painted the top of the table with chalkboard paint awhile back but Nicholas hasn't used it much because of his disability. However, now that he is wearing his body brace most of the time, he does just fine sitting in one of the little chairs and coloring on the table. We wrote his name together and then he colored a rainbow of scribbles on his own. He sat there for a good ten minutes and played and I couldn't have been more proud!

Chase Community Giving on Facebook

The Gwendolyn Strong Foundation (http://www.gwendolynstrong.com/) received a wonderful opportunity to win a $1 Million dollar grant from Chase Bank because of incredible wide ranging support, but now they need help on getting the word out there letting people know how to vote starting January 15th. And because you can only vote for GSF one time in the final round, we need to work extra hard to get beyond our networks and reach new people to vote for GSF. With your help, together we WILL see an end to this cruel disease!

So, in addition to VOTING, please commit to at least 3 things YOU will do from January 15th to January 22nd.

• VOTE: go to http://voteforsma.com/
  
• Email friends the voting link
  
• Post the voting link to your Facebook status all week long
  
• Blog about GSF and the $1M miracle to cure SMA
  
• Twitter the voting link
  
• BE ANNOYING (we mean persistent:) ALL WEEK LONG! In addition, here are some of the creative plans brewing by our supporters. Will you go the extra mile by doing one of these, too?
  
• Flyer ---> Download, print, and pass out our campaign flyer. This is especially useful for large groups or people who you don't have email addresses for such as schools, churches, and businesses who you have a personal relationship with. Click here to download the flyer.
  
• Make it Easy ---> Have your home or work computer open to the voting page - http://voteforsma.com/ - and tell every person you see to vote. Each person has to log in, but that's it. Simple and brilliant! People are setting up a voting station at local places in the community. Could you set up a voting station at your work or somewhere in your community?

• Contact Groups + Organizations ---> People have asked the organizers of groups they belong to to get involved by emailing a personal plea with the link - http://voteforsma.com/ - to sorority lists, mom's clubs, company lists, book clubs, alumna and professional organizations, etc. potentially reaching thousands of members! Do you belong to a group who would send an email to its members???

• Direct Message Facebook Friends ---> Since this is on Facebook, a direct message with a personal plea to all of your FB friends goes a long way. So in addition to posting it on your status, send an email to every Facebook friend. In fact, on http://voteforsma.com/ there is a button that reads "Invite a Friend". By simply clicking this and checking the boxes, you can message your FB friends to vote for GSF. Will you take this extra step?

• Contact BIG bloggers ---> Several people have or are planning to contact bloggers with a large following they think would be a good fit. Imagine if hundreds of people blogged about GSF and posted the video! Do you know any bloggers you can ask to help?

• Get Students Involved ---> One teacher incorporated GSF into her lesson on "grassroots" and posted the voting link - http://voteforsma.com/ - on the board for her students to write down and visit at home. They are excited about making a difference. Come Jan. 15, I smell a homework assignment :) Do you know any high school or college students willing to campaign for us on Facebook?
  

Please vote for The Gwendolyn Strong Foundation sometime between January 15-22. We NEED your help.

THANK YOU SO VERY, VERY MUCH!

Our Blog Book Has Arrived!

I was so excited when the FedEx guy dropped off our first book this afternoon! I uploaded our 2008 blog entries (after reading another SMA mom's blog about the book she made) and created this keepsake that we can enjoy for years to come! I am now working on a book for 2009...which is proving to be more work than 2008 considering how much I blogged last year! If you want to turn your blog into a book, go to: http://www.blurb.com/ and follow the directions on how to upload your information. I highly recommend making one!

Neuromuscular Clinic Visit

Yesterday morning Jeff & I took Nicholas to his neuromuscular clinic appointment at Shriner's. We go to one every six months to determine where Nicholas is developmentally and what new things we need to implement into his routine. We've only been once since his diagnosis and that went smoothly so we were expecting more of the same...only that's not what we got during this visit.

We left our house at 7:20 a.m. for our 8:30 a.m. appointment in Portland, anticipating that there would be some traffic. Some traffic is an understatement because there was A LOT of traffic and instead of a 40 minute drive, it ended up being an hour and 15 minute drive which caused us to be late for our appointment. When we arrived and checked in we sat in the waiting room for 45 minutes before being called back to see the doctors. During neuromuscular clinic we saw a nurse, a representative from MDA, Nicholas's neurologist, and Nicholas's ortho. By the time we saw everyone it was 11:00 a.m. and Nicholas was ready for a nap. Don't let the smiley face above fool you...we took that photo upon our arrival to our room! But Nicholas's ortho wanted him to get x-rays on his spine and get his body brace fixed so we had to be there for another hour and a half. During the x-rays Nicholas bawled his head off because he was exhausted and probably a bit scared. Needless to say, Jeff and I couldn't wait to get out of that place when we were finished after spending over 4 hours there.

Here's what is on the agenda for Nicholas's health care:

• The x-rays showed some curvature of his spine both when he was laying down on his back and when he was sitting upright. However, when he was sitting upright with this body brace on, the x-rays showed a nearly straight spine. So now he must wear his body brace most of the time. For any sitting, eating, stroller trips, basically it will only come off when he's in his car seat and when he's sleeping. The good news is that his hips looked good, no problems there.
• We are closely monitoring Nicholas's food intake and hoping that he will be able to put on some pounds. His weight has plateaued and this worries his doctors. So for the next couple of months we will be increasing the amount of food he eats and giving him two bottles of PediaSure per day which is expensive, but necessary. If he does not start to gain weight then a gastrointestinal tube (also called a feeding tube) will need to be inserted into his stomach to help him with his food intake.
• Dr. Russman (Nicholas's neuro) shared a SMA clinical trial website with us: http://www.clinicaltrials.gov/ct2/results?term=sma that we can look at periodically to see if we want to enroll Nicholas in any clinical trails for SMA. He also told us that there is a lot of research going toward treatments and cures for SMA and a variety of neuromuscular diseases. This gives us hope that a cure or a treatment will be found very soon!

A Captive Audience

Today before Nicholas went down for his nap, he read a story to the most captive audience...all of his stuffed animals! He babbled and laughed through most of the book. He skipped a few pages, but I think only the elephant noticed.

Wishing you a day full of good books!

Bubbles & Alphabet Soup

Two of Nicholas's new favorite things are bubbles and letters & numbers in the bath. He got some Johnson's Soothing Vapor Bath in his stocking from Santa for Christmas and we've been pouring it in along with the bath water and Nicholas enjoys watching the bubbles form. Also for Christmas he got some foam bath letters & numbers that he has been enjoying tremendously! He chews on them a bit, but he also likes to help mommy spell words on the tub walls. Today we worked on counting from 1 to 9.

Both things make bath time much more fun!

2010 Resolutions

This year instead of being so specific with all of my resolutions I am trying something different. These resolutions are easy things I can add to my life and will not stress me out if they don't turn out exactly as planned. Here they are in no particular order:

• If I can't find something decent to watch on TV, I will turn it off.
• I won't let a day go by without telling someone I love them.
• Create a "good decision" piggy bank. I will pay myself a dollar every time I skip that third drink, go to bed early, or make a difficult phone call. At the end of the year, I am going to buy myself a much deserved "good decision" present.
• Eat more consciously. Less fast food, more fruits and vegetables. Drink more water.
• Exercise regularly. I'm shooting for at least 3 days a week and will be doing lots more walks around the neighborhood with Nicholas in his stroller.
• Read more. Books, magazines, blogs...read, read, read.
• Get more beauty sleep. I am turning 30 this year after all!

That's it!

Wishing you all a happy 2010!

Sunriver Vacation

We had a wonderful vacation to Sunriver, OR this past weekend...I took so many photos because time with my whole family together is very precious to me. Enjoy! On the way there...Nicholas and I listening to my new iPod Touch

Relaxing and cozy on New Year's Eve

Nicholas felt right at home with all the people he loved in one place!

Cuddled up after his bath in his Pack-n-Play

Reading a book before bed

My youngest brother, Eric, and his girlfriend, Tina

We stopped playing pool & darts for a quick photo

Jeff & my bros

The entire Hargrave family on NYE

The relaxing hot tub that Jeff & I used to soak our sore muscles after snowboarding


Nicholas LOVES his uncle (and godfather), Brett

Mt. Bachelor as we were leaving...a snowy, windy day

This is a photo of Mt. Bachelor a mere 10 minutes down the mountain from the lifts...so pretty!

The three snowboarders stopped to take some photos in a much less cold & windy spot on Mt. Bachelor
Jeff and me...my face is all red from the snow that was pelting it on the mountain

Jeff and Brett...friends who became brother-in-laws

Daddy & Nicholas ready for dinner

Nicholas watching us finish our Scrabble game...a family favorite
My dad did not move from this spot all weekend...other than to get himself food or when nature called. He was definitely relaxed!
My wonderful mother and me. My mom cooked, cleaned, watched Nicholas while we went snowboarding, she basically just took good care of everyone while we were there. And she enjoyed every minute of her whole family being together.

Nap time! Nicholas watched one of his new Blue's Clues DVDs while mommy snuck in an afternoon nap...pure bliss!

Nicholas loves his Gramme...she always takes time to play with him

Brett relaxing & reading

Ahhh...snuggles with Grandpa (see I told you he hardly moved)!

Watching Lord of the Rings together
Our family of three before we headed back home

The house we stayed in had a statue of St. Francis out front. St. Francis is my mom's favorite saint so we took it as a sign that we chose the right house!

Good-bye Sunriver. We hope to visit again soon!