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!

Love it!

Nicholas got a package in the mail today from our dear friend, Teresa.

Teresa, I guess this means you think Nicholas is as adorable as we do!

Thanks for thinking of us and I am so sorry we missed you while you were here for a visit. Hope you enjoyed your trip!

A Day of Firsts

Today Nicholas had a lot of first-time experiences. Yesterday we had dinner at Jeff's grandparents' house and his Aunt Stacy gave Nicholas a mylar balloon. Now he has always loved playing with balloons, but today was the first time he actually hit the thing with some force! So much force that he toppled over after I took this photo.

A few weeks ago I was driving by Hathaway Elementary School's park and noticed these great swings. I thought that Nicholas would love them and I was right! He sat perfectly upright in this one and enjoyed me pushing him on the swing, unless I pushed too hard and then he fussed, so it was little tiny pushes that he liked best.

As you can see from the previous photo, Nicholas had a hard time keeping his eyes open to take a picture because the sun was just so bright, and mama forgot his sunglasses, so we tried mine, but, unfortunately they were slightly too big!

After a ride on the swings we went through the Dairy Queen drive-thru to get Nicholas a blizzard. (For those of you wondering...yes I made it through the drive-thru, car unscathed). Anyway, I bought Nicholas an Oreo Blizzard and got myself some vanilla soft serve that I topped with fresh raspberries when we got home. As I was feeding Nicholas his heavenly deliciousness, I read the Blizzard cup that said that Dairy Queen has donated over 77 million dollars to children's hospitals! Way to go, DQ!

Here he is enjoying his very first Blizzard...I know he was dying to say, "Yummy, thanks mama!" And of course he couldn't finish all of it before nap time, so Jeff got to enjoy the remaining yummy-ness when he got home from a long, hot day of work.

A Wave of Sadness

Most of the time I'm fine. Most of the time I focus on all of the positive things in my life: our sweet son, my wonderful husband, amazing parents, good friends, a home, etc. But sometimes the seriousness of Nicholas' illness completely overwhelms me and I just...feel...sad.


I look at other kids in our neighborhood running through sprinklers on hot summer days and am sad that Nicholas may never do that. I see babies taking first steps on chubby little legs and am I sad that our baby boy never achieved that milestone. I look at Nicholas's angelic little face and wonder how long I get to stare into those beautiful hazel eyes of his. Five months? Five years? Thirty-five years? And no matter how long it will never be long enough.


The one thing that completely overwhelms me and makes me feel completely helpless is when I read comments on the Petition to Cure SMA from parents/loved ones/friends/family members who have lost a child to SMA. "How do they get through it?" I think. "How in the world do they do it?" My hearts breaks for each and every loss and I spend several minutes reading each comment and heaving heavy hard sobs, my eyes blurred with hot tears. Then my thoughts wander to my own strength and I wonder if I can do it, or if I will even have to.



I pray every single day without fail for a cure for our son and the many other children who are affected by Spinal Muscular Atrophy. I want him to stay as healthy as he is now for as long as possible so that one day in the very near future his neurologist will call us and say, "Come in right away! Researchers have approved a cure for children with SMA, come in to our hospital and get Nicholas the treatment that will save his life!" That day will be the best day. I will be happy. I won't have to constantly worry about losing my child. I won't feel this sadness anymore. My little boy will be okay. The wishes and dreams his daddy and I had for him before he entered this world will come true. That is my perfect ending.