Thursday, April 29, 2010

New Family Photos







Several weeks ago, a close friend that I have known since I was in fifth grade, Heather Purdin, took some new family photos for us. She owns a business called Click Photography and she's so amazing! If you live in the SW Washington/Portland area and are looking for a photographer-I would definelty recommend Heather. You can check out more of her work on Facebook: http://www.facebook.com/?ref=home#!/pages/CLICKphoto-By-Heather-Purdin/248272722286
We are so happy with our new photos!

Wednesday, April 28, 2010

Grateful

Tonight I was reflecting on all of things that I am so grateful for in our life right now and I thought I would share...
  • That both Jeff and I have jobs we adore
  • A house that we have made a home
  • The unwavering support of our families-especially my mom & dad who generously provide attention and care for Nicholas, randomly stop at the store and buy groceries for us just because they know how busy our lives can be, and who always offer words of support and love
  • Vehicles that aren't too pretty but that run great and always get us from one destination to the next
  • The most wonderfully soft and comfortable sheets I have ever owned (thanks for the info, Lynds) that help me get a better night's sleep
  • That we have been blessed to be able to be parents for a second time
  • That some of Nicholas's strength seems to be returning now that his bronchitis is clearing up and that he's doing so well driving the power wheelchair
  • That I get to spend every waking second of my day treasuring each moment and loving this sweet boy...
That's what I am grateful for today.

Monday, April 19, 2010

Wheelchair Practice




We have been going to Shriner's weekly this past month to give Nicholas more practice on the power chair. Since he will be turning two in May, we would like to order his own power chair within the next few months so he can experience some freedom from us carrying him all the time. He gets better with every try, but because he is still getting over bronchitis, he's not quite feeling like his normal self yet so he's been a bit weaker than normal.
Last Saturday, April 17th, marked the one year point of Nicholas's diagnosis with SMA. I was out-of-town leading a retreat, so I didn't think of it at all until I got home on Sunday. Our computer's screen saver is photos and videos of family and friends and on Sunday evening when I went to turn the computer off, I stopped and watched a video of Nicholas in the bathtub when he was around nine months-old. He had a bath toy in his hands and was bringing the toy up to his mouth to chew on and that's when it dawned on me that he has been unable to bring his hands together and up to his mouth for quite some time now. I continued to watch photos and videos pop up on the screen and I couldn't stop crying because I could see how much our little guy has declined physically in the past year. I don't think about it much on a day-to-day basis, but when it was presented in a slide show fashion it was extremely difficult to ignore. I guess I just keep thinking, "Well, he's been teething," which accounts for some of his weakness, although now I realize that not all his strength has returned and I am unsure that it ever will. As I write this I have a huge lump in my throat and tears blurring my vision because I don't know if this means we are closer to losing our son or if it is just how Nicholas will continue to live for a long time. Either way it's heartbreaking and extremely difficult and I wish there was something I could do to help my son overcome this awful disease.
Please keep us in your prayers this week-we could really use them.

Friday, April 16, 2010

Baby Bump


I just wanted to share a couple of photos that my best friend, Lyndsey, took of me while I was vacationing with her in California. She's an amazing photographer with her own business-Jack & Lola Photography.
The second belly photo is exaggerated a bit since I was pushing out my tummy to achieve a "better" bump for the photo...but that's me (and baby) at 17 weeks!
Thanks for sharing your talent with me, Lynds!

Monday, April 12, 2010

30th Birthday Trip

Last Thursday I flew down to Long Beach, CA to visit my best friend, Lyndsey for our 30th birthdays. Hers was at the end of March and mine is in the beginning of May so April seemed like the perfect month to celebrate. We shopped, ate at several delicious restaurants, watched movies, played games, went to an antique store, met friends, and drove up the Pacific Coast Highway. It was a memorable trip and I am so happy I was able to spend some quality time with my bestie! I am not sure why but I didn't take as many photos as I normally do on trips, oh wait-I do know why-because Lynds always had her camera out snapping photos (and she's the professional)! Anyway, most of these photos are in San Juan Capistrano at the Catholic Mission.
One of the two of us...the only one with my eyes open!

It was such a beautiful day and a truly breathtaking place to visit!


Some historical artifacts

The chapel of St. Peregrine who is the patron saint of cancer patients and health. I wrote a special prayer for Nicholas in the chapel prayer book.
The beautiful mission church. I was moved to tears by the overwhelming feeling of the Holy Spirit in this place.

The grounds were immaculate and lavishly gardened

The Koi fish pond



A statue of St. Therese donated by a first communion class

After leaving the mission we ate dinner at a yummy Irish pub...here is Lyndsey and Keith laughing at dinner
This is the courtyard where we sat and ate at the pub...the tree growing in the middle of it was quite the sight!

Our baby girl got a few special things on my trip...Lynds bought her first layette, and mommy got her the bird pillow and pink pear for room decorations. Don't worry, I didn't forget about Nicholas, I got him a little something as well :)

Thanks Lyndsey & Keith for a wonderful 30th birthday weekend celebration!

"Ball" Game


The Easter bunny brought Nicholas this new bath basketball game and he LOVES it! He has always loved to take a bath, but now when I say ask him if he's ready, his eyes light up and he enthusiastically shakes his head and says, "ball!" It's adorable!
We gave him a bit of an advantage by placing the hoop on the tub wall at and angle so he can easily dunk the balls, but he's getting so good at it, it I think we might need to adjust it some to make it more challenging.
It's always a good time in the bathtub!

Sunday, April 4, 2010

Easter Joy

Cuddling with a sleepy Daddy on Easter morning


Look at what the Easter bunny brought...two books, some PJ's, a chocolate bunny, and a new basketball game for the tub!


Daddy using the fish basketball to give Nicholas kisses. Today Nicholas started puckering up and making a smack sound when we asked for kisses...so cute!

Relaxing on Gramme and Grandpa's living room floor after Easter brunch, watching Kai-Lan


Sporting Daddy's hat and binkie...it's the new look, you know.


New PJ's after bath...I think he likes them!

Reading an Easter story before bed

We hope everyone had a wonderful Easter with friends and family.
He is Risen~Alleluia!


Friday, April 2, 2010

SMA Fundraiser

Several weeks ago, friends of ours from high school, Jake & Carrie Collins, contacted us and asked if we were interested in a fundraiser to benefit SMA. We were thrilled and excited and needless to say, we said yes! Jake Collins volunteers for the local East County Fire and Rescue and every year they hold some type of fundraiser to benefit their organization. This year, however, they decided to donate half of the money raised to a charitable organization and they asked which SMA organization I was interested in supporting. I immediately answered that I wanted to help the Gwendolyn Strong Foundation. The Strong's are amazing parents to a 2-year-old girl, Gwendolyn, who is battling SMA type 1. We regularly correspond via email and Facebook and I read their blog almost everyday. Their strength and determination to end this awful disease is a true inspiration to us, and I couldn't think of a charity more deserving of this money. So...if you live in the Camas/Washougal/Vancouver/Portland area and love to play poker, here are the details of the upcoming fundraiser on Sunday, May 23rd:


  • What: The East County Fire & Rescue Volunteer Firefighters Association presents a Texas Hold 'Em Poker Tournament Fundraiser, half of the proceeds from this event will benefit the Gwendolyn Strong Foundation.
  • Where: The Camas Moose Lodge. Food and beverages will be served.
  • When: Sunday, May 23rd at 3:30 p.m.
  • The Tournament: $20 Minimum Buy-in: 10,000 chips. Early Registration Bonus: 2,000 additional chips. Add on at break: 5,000 chips (optional)
  • How to Register: The field will be limited to the first 150 players so register now. Register by May14th for your Early Registration Bonus.You can also register the day of the tournament if there is still room. Register by e-mail only please: ecfrpokertourney@yahoo.com

Jeff and I love a good game of poker, so we will both be there to support the ECFR and the Gwendolyn Strong Foundation. If you want to support a great cause, have some fun, and hopefully win some money...sign up to play. It's sure to be a good time!

Thursday, April 1, 2010

A Gift From Heaven


On Thursday, January 21st, I took a test that would change our lives forever.

I had been feeling more tired than usual, napping in the afternoons, and noticed that I had a heightened sense of smell. I started thinking that I could possibly be pregnant because I was experiencing similar symptoms as when I was pregnant with Nicholas.

On my way to work Thursday evening, I stopped by Walgreens and picked up a pregnancy test and took it as soon as I got to the office. No one had arrived yet and I had the space to myself. Imagine my surprise when not one blue line showed up, but two! Jeff and I had not been trying for a baby, but now God had given us this blessing. I was filled with joy at first, but my joy quickly turned to fear.

I immediately put the test into the shopping bag, shoved it in my purse, and walked over to the church where I fell upon my knees and began to pray. "Please Dear Lord, please allow this baby growing in my womb to be healthy. Please allow this child a chance at life-a chance to walk, jump, and run." Tears were now streaming down my face as I pleaded with God to allow this child what He had not allowed our first-to be free of a heartbreaking disease. All at once I stopped crying and began to listen as God spoke to my heart. He told me that this child would be healthy, that it would be loved, that it would be a blessing in our lives. He told me not to worry, that this child would be born free of SMA and be such a joy to her brother. I began to feel love all around me as if Jesus himself had wrapped his arms around me in comfort. After 40 minutes of listening, praying, and pleading, I left the church and returned to my desk wondering how Jeff would react to the news when I shared it with him.

I considered not telling him for awhile, but realized that would be impossible to do. I needed support and he deserved to know. When I arrived home that evening he was watching television on the sofa. Nicholas had been asleep for over an hour so I sat next to him and told him the news. He was instantly moved to tears (which does not happen often). He was so happy and so afraid at the same time. We both know the statistics involved in conceiving a child without the help of medical technology, we knew that our chance of having a healthy child was 75%, and the chances of conceiving a child affected by SMA was 25%, but those numbers don't mean much when your first born has the disease. We held each other and cried and realized all we could do at this point was pray for the odds to be in our favor, in our baby's favor.

At 9 weeks we met with a genetic counselor who explained the prenatal testing options with us. We could do a Chorionic villus sampling (CVS) test at 12 weeks or an amniocentesis test at 16 weeks. We decided to do the CVS test simply because we wanted to know the results as soon as possible. We only told a small handful of people we were expecting at this point because we wanted to wait to let most people know once we had the results. The procedure was fairly simple and relatively painless. The doctor did an ultrasound before, during, and after the procedure to make sure everything was okay with the baby. He inserted a long needle through my abdomen to collect a sample of the placenta to be tested for all chromosomal and genetic diseases. It took all of 45 minutes. Afterward, Jeff took three days off work to be home to care for Nicholas as I was instructed not to lift anything and to stay off my feet for a day or so. To be honest, it was so nice to be pampered for a couple of days and I took full advantage of it!

Less than a week later the genetic counselor called to tell us the results of the chromosomal tests. "Everything looks good," she said, "the baby will not have any chromosomal defects." I asked if the chromosomal tests also showed the baby's gender and she was happy to share that we were having a baby girl. I was surprised because I had thought that we were having another boy, but both Jeff and I were happy to know there would be a little girl in our family. While the results of the chromosomal testing were good, we still had to wait three very long weeks to get the results of the genetic testing.

During that time I continued to pray, not because I don't trust God, but because I wasn't sure if what I heard in church was Him talking to me or my own thoughts telling me what I most wanted to hear. I prayed to Mary, as a mother, for her intercession in Heaven, and to St. Gerard Majella, who is the patron saint of fertility. Father Mitchell even let me borrow a relic of St. Gerard Majella that I put on our living room bookshelf. I stopped to pray in front of it each time I walked past. Jeff tried to make himself busy-working in the garage, and taking several mechanical side jobs to distract his mind.

Yesterday we got the news we had been hoping and praying for. The genetic counselor phoned me at 9:20 a.m. and said she couldn't wait to share the good news...that our baby girl was healthy and SMA free! Not only is she SMA free, but she is not even a carrier of the disease. She falls into the 25% category of not being affected and not being a carrier. I cried tears of joy and relief and spent several minutes praising God for this wonderful blessing! Later, I wondered at genetics...it's so strange to me that we will have two children on complete opposite ends of the spectrum-one that is totally unaffected, and one that is totally affected. It is strange and bewildering how genes affect us.

Now we are excited to begin preparing for this baby girl. Up until this point, I couldn't allow myself to immediately bond with her the way I did with Nicholas. I needed to know what her future may look like. Not that I didn't love her immediately, I definitely did. There was never a question as to whether or not she was wanted or loved, we loved her as soon as we knew she existed. At the same time, I didn't have a clear view of what her life might be like and that prevented me from bonding with her completely. Now that we know she is healthy, I feel like a weight has been lifted off my shoulders, I feel like I can breathe again, I feel that we have been truly miraclously blessed.

I am looking forward to her arrival on or near September 20th of this year. I think Nicholas will love having a sibling and I hope she will be a source of joy and kindness for him. Maybe she will be the kind of girl who mothers him, helps him, dotes on him-like his mommy. Maybe she will be the kind of girl who he can tell to climb that tree a little higher, run a little faster, spin a little slower. I cannot wait to see them together, for I know that the bond between siblings is amazing. Nicholas has a lot of love to give and I'm sure his sister will be a happy recipient.

Coloring


Yesterday afternoon I got out the markers and let Nicholas color away for about a hour. He seemed to really enjoy it for awhile and then all the wanted to do was throw the markers off the tray onto the couch below in typical boy fashion. Just coloring was not enough, he wanted to get rid of each marker one by one when he was finished. We practiced colors as he dropped each one and while he didn't quite pronounce the colors correctly, he definitely was trying to mimic each one after I said it. The learning and understanding that is going on in his little brain is just amazing. I enjoy watching him discover new things and try new words!
I think this is my favorite age so far!