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!

Sunday, March 28, 2010

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

Friday, March 26, 2010

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.

Thursday, March 25, 2010

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!

Monday, March 22, 2010

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!

Monday, March 8, 2010

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!

Saturday, February 20, 2010

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!

Monday, February 15, 2010

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!

Thursday, February 4, 2010

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