Photography Fundraiser

This is the flyer for our very first fundraiser! A wonderfully talented friend of ours, Jenifer Johnston, has been taking Nicholas's photos every three months since he was in utero and she is volunteering her time and talent to help us raise money for Unite for the Cure! If you live in the Vancouver area and would like some beautiful family photos...please consider signing up for this very special event. You can view Jenifer's gorgeous work here: http://www.polkadotphotography.net/

Thank you Jenifer, we are so grateful that you are willing to donate your time and talent to this wonderful cause that is so close to our hearts!

You Rock!!

Jeff, Nicholas, and I wanted to say thank you to these wonderful people who have given so generously to Unite for the Cure:

Teresa Shields, Lyndsey Yeomans, Elizabeth Brooks, Holly Jones, Tina Nguyen, Sima Patel, Mike Cruz, Stephanie Hosszu, Ruth Calderon, Charmaine Pettersen, Megan Larsen, Jennifer Taylor, Erin Collins, Teri McCrary, Valerie Helland & Beverly Williams

You are all amazing and we are so very appreciative of your donations...you are helping us get that much closer to our $5,000 goal!

So far, 11 families who have been impacted by SMA are fundraising together to try to raise a total of $100,000 by the end of November 2009. The total amount of donations received as of this evening is $2,653. 74 which was all donated in just about one week! Simply amazing!

Our family will hold our first fundraiser on Sunday, September 13th...one of our fabulous friends will be donating her time and talent for Nicholas and Unite for the Cure...look for more details in the next few days.

We are sending lots of love to those people who have already donated and asking those that haven't to prayerfully consider a donation...it could mean a miracle for Nicholas and thousands of other children with SMA. If you would like more information about Unite for the Cure and how you can make a donation, please click here.

Danae & Josh's Wedding

My cousin, Adam (brother of the bride) and his girlfriend, Ariell
Jeff and I after dinner

Danae...the beautiful "Barbie" bride

Grandma Hargrave & Danae

The happy couple...Mr. and Mrs. Kizer

Father-Daughter dance

Aunts and cousins of the bride

Cake time...it was delicious!

Jeff & the groom, Josh

Congratulations Danae & Josh! Jeff, Nicholas, and I wish you a lifetime of love, laughter, and happiness!

15 Months-Old

How does a cranky, teething, feverish 15 month-old little boy spend the day? Why, in bed of course, with the remote close by and the rattle from his first aide pack in hand (how appropriate). And no he's not smiling in this photo...it was more of a grimace, a "mom get that camera out of my face" kind of look.
When the cranky, teething baby was finally tired of watching Noggin the only other thing he wanted to do was soak in the tub and since he refused to eat anything, mom brought the food to him. I managed to feed him one jar of Fruit Medley and 3 goldfish crackers while he was in the tub. But just to let me know how much he didn't like it, he shook his head "no" at me before each bite.

Isn't this the saddest little sickly boy face you've ever seen?

This is one mommy who will be praying for those molars to make an appearance as soon as possible so that I can get some much needed sleep and so I don't have to witness a child in so much pain. Who knew such small things could turn an otherwise happy, smiley baby into a cranky, crabby mess?!

I want my happy Nicholas back...pretty please?

Hope

GUESS WHAT?!

A cure for Nicholas and other babies with SMA is right around the corner...literally, like 2010, around the corner! Can you believe it?! We've been praying and hoping for several months now (some families have been praying and hoping for several years) and now in this wonderful age of medical technology we're so close!

But...

We need your help.

(adapted from a post by gwendolynstrong.com)You may not know that there is a promising stem cell treatment program being funded by Families of SMA and headed up by Dr. Hans Keirstead at UC Irvine in California. This therapy, perfected by Dr. Keirstead and his team, has the potential to cure SMA, ALS/Lou Gehrig’s Disease, and acute spinal cord injuries characterized by motor neuron loss. This program has been in process for over five years and Dr. Keirstead and his team have completed all of the pre-clinical efficacy studies, including the pivotal animal safety studies, demonstrating that the cells work and that they appear to be safe. This is very positive and this program, the SMA stem cell program, has the real potential to become the second FDA approved stem cell trial in humans -- the second ever! Phase I of those human clinical trials could potentially start in the next several months.

What many of you may not know is that this promising stem cell treatment program, led by one of the leading stem cell researchers in the world, may never actually happen because of funding. Yes, funding. How much? Only $500,000. We may all never know the true potential of this research because of a measly $500,000. This groundbreaking science is ready. The researchers are prepared. They just need money. So how can we hope for this research and not make sure it reaches the finish line? Without funding, this hope, this potential, this chance at a cure will get pushed and pushed and well... that means thousands more families are impacted by this cruel disease and thousands more innocent babies will leave us too soon. Given all that we have faced and are facing because of SMA, raising money is simple. As a community, we can make this trial happen!

Jeff and I have committed to raising $5,000 in the next 3 months to support this funding. This is the most important $5,000 we may ever raise in our whole life. This money has hope written all over it. It has love written all over it. It has the potential to save Nicholas. It is not easy to ask others for money, just the opposite is true. It is difficult. Why does Nicholas deserve your hard-earned money? Why is this cause more important than any other cause? My answer is that our son emits grace, love, and hope from every single pore in his body. He deserves a shot at life. When a child is diagnosed with a terminal illness, when my child was diagnosed with a terminal illness my heart changed forever. There is no amount too big or too small that could potentially help save Nicholas's life.

We. need. your. help.


If you would like to make a donation in Nicholas's name, you can click on this link: http://UniteForTheCure.com/Donate/ It explains all the directions for donating via credit card and by check. To make a donation via credit card you will go to this page and then click on the green donate button, which will then take you to the Families of SMA donation page specifically set up for Unite For The Cure. Please remember to write "Gustafson Family" in the "Message" section, so that we can keep track of our goal. For checks, please make checks payable to “Families of SMA” and be sure to write “Unite For The Cure/Gustafson” in the MEMO on the check, so that this donation goes specifically to the Unite For The Cure campaign and to our overall goal. You can mail checks to:

Unite For The Cure
c/o Gwendolyn Strong Foundation
27 W. Anapamu Street, #177
Santa Barbara, California 93101

We are also planning bulk mailings (email & snail mail), a garage sale fundraiser, a restaurant fundraiser, and a bowling fundraiser in the next 3 months...if you have any ideas for fundarsiers, or would like to help with one, please let us know.

Please consider a donation. It may just save our child's life.

Doernbecker Children's Hospital Visit

Today was Nicholas's appointment with Dr. Link, who is a pulmonologist at Doernbecker's at Oregon Health & Sciences University (OHSU). While we were sitting in the waiting area a woman handed out kazoos and maracas to all the kids waiting for appointments. Nicholas was one of the lucky few to get his very own jingle bells to keep. She kept us entertained while we were waiting by playing her guitar and singing songs like: "Old MacDonald," "I've Been Working on the Railroad," and "I Met a Bear." Nicholas loved watching her and the other children singing and enthusiastically waved his jingle bells during each song.

Our visit with Dr. Link went well. He is ordering a cough assist and a sleep study for Nicholas. The cough assist is a machine which helps clear out mucus from the airways and can help provide oxygen for Nicholas if he needs it. The sleep study will help determine is Nicholas is having sleep apnea episodes at night. It will take place at a hotel in Portland and Nicholas, Jeff, and I will stay overnight. Nicholas will be hooked up to little instruments that will measure his heart rate, brain activity, and breathing as he sleeps. That is if he can sleep with all that stuff on him! Anyway, all in all it was a good visit and I am glad we are doing all we can to help Nicholas with his SMA.

Fabulous New Chair

This is Nicholas sitting in his new Wenzlite Seat2Go chair! I ordered it last week and was so happy when I arrived home from work this afternoon and saw it sitting by the front door. It has an adjustable headrest and is light and easy to carry so we can take it anywhere we want to go. It is also very supportive so he can sit upright in it without slouching.
Nicholas used it today to play with his toys on his lil' blue tray...he's waving hello to Dora in this picture, I think he has a bit of a crush on her!

And he can finally sit like a big boy at the dining room table with mommy and daddy! He loved sitting and playing with his spinning wheel toy.

Yay! Now it will be so much easier for him to go to restaurants, picnics in the park, and Gramme & Grandpa's house since he will have proper seating. It will come in handy at home, too!

Mama & Baby

My wonderful sister-in-law, Jami just got a new camera and snapped a few photos of Nicholas and I last weekend. Here are just a few of my favorites. They capture the simple, treasured moments between mother and son.

Fun Friday

What a fun Friday! Nicholas and I drove to Bridgeport Village to have lunch with our new friends, Shawna, and her little girl, Kayla. We met them for the first time a couple of months ago and were eager to see them again. Kayla is as cute as a button and it is so nice to talk with another mom about SMA. Shawna is full of good ideas that she willingly passes on to me!
We ate a yummy lunch at P.F. Changs. Nicholas loved the Lo Mein noodles and really, really loved the super cute shot glass of carrot cake mommy ordered for dessert...(as you can see by the empty glass in the photo pictured above).

When we left I had to snap a quick photo of the kiddos in front of the huge Trojan horse that stands guard over all P.F. Changs. Look at how little our munchkins are compared to that honkin' thing!

Later in the day, after Nicholas squeezed in an afternoon nap, my six-year-old niece, Zoie, came over for a sleepover. We had dinner at Wendy's per Zoie's request, then Zoie helped me grocery shop. She pushed Nicholas in his stroller while I pushed the shopping cart. On our way home we stopped by the local Hollywood Video and rented the DVD City of Ember. Zoie helped me give Nicholas a bath and a bottle and cuddled with him a bit before bed. After Nicholas went to bed we watched the movie (which was excellent), ate the ice-cream we picked up during our grocery shopping trip, and played some Wii.

All in all, it was a wonderful day!

Retreat Epiphany

I just returned home from a two-day conference at the Palisades Retreat Center in Federal Way, WA. The conference was for my job as Pastoral Assistant for Sacramental Life at Holy Redeemer Catholic Parish. A variety of parishioners and pastoral assistants were there from several parishes in the Archdiocese of Seattle to hear from various speakers on the "Gifts Given to Us by God." Prior to attending this conference, I took an online quiz developed by Gallup using the Clifton Strengths Finder to determine my unique Top 5 Strengths. Understand that for someone to have the exact same Top 5 Strengths as me in the exact same order is 1 in 930,000, so this assessment is unlike other types of personality tests-it truly helps to define the unique qualities of every individual.

Here are my Top 5 in order with a short description of each:

1. Empathy: You can sense the emotions of those around you. You can feel what they are feeling as though their feelings are your own. Intuitively, you are able to see the world through their eyes and share their perspective. You do not necessarily agree with each person's predicament-this would be sympathy, not empathy. You do not necessarily condone the choices each person makes, but you do understand. This instinctive ability to understand is powerful. Where others grapple for words, you seem to find the right words and right tone. You help give others a voice to their emotional life. For all of these reasons other people are drawn to you.
2. Responsibility: You responsibility theme forces you to take psychological ownership for anything you commit to, and whether large or small, you feel emotionally bound to follow it through to completion. Your good name depends on it. If, for some reason, you cannot deliver, you automatically start to look for ways to make it up to the other person. Apologies are not enough. Excuses and rationalizations are totally unacceptable. This conscientious, near obsession for doing things right, and your impeccable ethics combine to create your reputation: utterly dependable.
3. Developer: You see the potential in others. Very often, in fact, potential is all you see. In your view no individual is fully formed. On the contrary, each individual is a work in progress, alive with possibilities. When you interact with others, your goal is to help them experience success. You look for ways to challenge them. You devise interesting experiences that can stretch them and help them grow. Over time many will seek you out for help and encouragement because on some level they know that your helpfulness is both genuine and fulfilling to you.
4. Adaptability: You live in the moment. You don't see the future as a fixed destination. Instead you see it as a place that you create out of the choices that you make right now. And so you discover your future one choice at a time. The theme of adaptability enables you to respond willingly to the demands of the moments even if they pull you away from your plans. Unlike some, you don't resent sudden requests or unforeseen detours. You expect them. You are, at heart, a very flexible person who can stay productive when the demands of life are pulling you in many different directions at once.
5. Individualization: Your individualization theme leads you to be intrigued by the unique qualities of each person. You are impatient with the generalizations or "types" because you don't want to obscure what is special and distinct about each person. Instead, you focus on the differences between individuals. You instinctively observe each person's style, each person's motivation, how each thinks, and how each builds relationships. Because you are a keen observer of other people's strengths, you can draw out the best in each person.

I took this assessment over two months ago and was surprised at how each of my Top 5 described me exactly. I remember thinking, "Yes! This is who I am. I have always been this way." I contributed my empathetic trait to the reason why in high-school I was always the girl in the hallway with my friend consoling her about one thing or another. I contributed my individualization trait to the reason I became an elementary school teacher. After taking this assessment though, I didn't truly connect these themes to the most important young person in my life.

At some point, about halfway through the first day at the conference, I had a total epiphany: God made me this way for Nicholas. He gave me these unique gifts so that I can be the best mother I can possibly be to our son. Take, for instance, my gift of Empathy. I am instinctively connected to Nicholas's emotions-his needs, feelings, desires. I help give him a voice. I have said many times to both God and others that I would switch places with him in an instant. My Responsibility gift then, allows me to provide for him all the things he needs. To be an advocate for him, to help him use his stander, braces, and seating equipment; to make sure he has many opportunities for physical therapy throughout his day. My themes of Developer, Adaptability, and Individualization all help me to see Nicholas's potential. They help me to be flexible, to understand that while Nicholas's illness is devastating, it does not define him. These gifts help me to draw out the best in our son, to know that while our life does not look like I thought it would, it's okay, because every moment spent with our son is another moment I get to love him, to know him, to build a relationship with him.

God didn't give me these gifts haphazardly. Not at all. In fact, he gave me these gifts knowing that I would one day be Nicholas's mother and I would need these gifts to help me love my son through this disease and develop his potential in the best way I possibly can. We all have unique gifts of our own. God created each of us with talents to share with others. No two people are the same because we are asked to share our gifts with one another to love one another in the fullest, most generous way we can. My gifts were given to me not only to help me be a relationship builder, or a teacher, or a wife, or friend. They were given to me to assist me in the single-most important job I will ever have in my life: to be Nicholas's mother.

{Note: If you are interested in learning about your God-given gifts, you can buy the book: Living Your Strengths. There are several versions available. You can click HERE for more information. The online assessment is only accessible from the code in the book you purchase, so buying a used book may not allow you access to the code.}

Grandpa Randy

Yesterday, Nicholas's Grandpa Randy flew into town from Arizona. Randy and his wife, Joni, have lived there for about a year now so Grandpa was itching to get back to town to see his grand kids.

Uncle Kris and Aunt Jami had an afternoon BBQ at their place so everyone could get together and visit. Nicholas was thrilled to see his Grandpa and remembered him like no time had passed at all. He was particularly happy when Grandpa let him hold onto his beer bottle which is when I snapped this cute photo of the two of them. This afternoon we are going over to Uncle Chris and Aunt Eva's to visit some more before Grandpa leaves tomorrow evening.

Thanks for visiting Grandpa! We loved seeing you!

Photo Galleria

Kitchen

Hallway

Side of Fireplace

Last Friday I finally purchased a bunch of frames for all of Nicholas' first year photos. They had previously been sitting on our computer desk and were just needing to be organized and placed into frames. All of the beautiful photos were taken by Jenifer Johnston of Polka Dot Photography. I still have a few unframed photos that I am going to use for Nicholas's second scrapbook. My best friend's mother, Lisa (the scrapbooking Queen), gave me an assortment of papers, embellishments, and quotes all in a baby boy theme that are just waiting for pictures of Nicholas!

August is SMA Awareness Month

Gwendolyn Strong's parents, Bill & Victoria, created this beautiful video asking people to sign the

Petition to Cure SMA. (<--- Just click on this link).

Nicholas's photo is included with countless other children affected by this devestating disease. Please sign if you have not already, and please pass this video on to friends and family members to urge them to sign as well.

Thank you!!!

Cartoons in the Evening

Tonight as I was working on my research paper for my masters degree, I heard singing coming from the TV in our bedroom, so I got up to check it out...

and I found Jeff and Nicholas cuddling in our bed watching Jack's Big Music Show on Noggin so I had to snap a quick photo to share. Too cute!

I love both of my adorable guys!