Wednesday, September 24, 2008

Tale of Two Women

I've felt guilty since about twenty seconds after I posted my last post. I do love being a mother but I will not is full of challenges.

On Sunday I was borrowing someones scriptures and went to read an assigned scripture when I came across the following marked scripture:

1 Peter 3:10

For he that will love life, and see good days, let him refrain his tongue from evil, and his lips that they speak no guile.

It was almost like it was written JUST FOR ME. So I am trying harder to love life, see more good days, and speak in kindness.

The last few weeks I have been thinking a lot about an article a hometown friend wrote about the challenges of raising twin daughters (plus three other adorable girls). One of her sweet twins has CP and really has brought on a new aspect to parenting. I asked her if she would be okay with me "re-printing" this article on my blog for my readers to read. I know some of you already know who I am talking about but if you haven't had the chance to read the following please do.

I think it touched me so much because I was reminded that we are all given various challenges in this life but we each have a choice how these challenges are going to affect us.

Read on...

Friday, August 22, 2008

A Tale of Two Women

Some days, I feel like my life is consumed by cerebral palsy. I think about cp with all the special care and handling we provide for Sophia. I think about it when I see April walking. I think about it when Claire asks, "Will Sophia start Kindergarten a year or so after April?" It stares me in the face, it overrides what Sophia would be able to do if her brain were healthy, it impacts the entire family now and will in the future, and it doesn't go away.

Once, in college, I volunteered to help with "patterning" for a young boy in the local community. I knew only that it was difficult to move this boy's limbs into the patterns we were told he needed. His arms and legs were tight and seemed locked in certain positions. He appeared to be in some pain during these forced movements. It was only after Sophia's diagnosis and my subsequent research that I realized, looking back, that he had cerebral palsy.

Needing to talk with someone who had been through what was still unknown to me, I decide to contact his mother to talk with her about her experiences with raising him. I plan to ask her about resources in our community, and what she feels was useful for her son. I have heard that he is now attending college, and I plan to ask her how he is doing and hear of his success.


Months after my plan to contact this woman, I hear that she had just been diagnosed with terminal cancer. Not long thereafter, she passes away. I attend her funeral, having never had the opportunity to learn the things that I know she could have taught me. The funeral is beautiful. Setting aside some of their sadness, her husband and several children speak of their love for this wonderful woman. They share with us, the audience, intimate parts of her life. There is no doubt that this is a noble woman who had passed on to the next life, and that she has an incredible family.

What is missing in the funeral talks is any mention of cerebral palsy. Once, her daughter mentions that the mother has always told her son that he was not limited by his wheelchair. That is it. I don't know what I expected -- maybe repeated references to how much she had struggled to help her son, or how she had struggled with accepting her son's diagnosis. To me, it is eye-opening. She had obviously dealt with cp since her adult son's birth, but it must not have consumed her. It is not even noteworthy at her funeral.

That night, as I lay in bed and my mind circulates with these thoughts, I pick up our local newspaper to read before sleeping. A few pages in, my jaw literally drops, and I express verbal surprise at what I see. There is an article about a woman across the country who faces a trial for a crime. Her crime had been to enter the home of someone else with a loaded gun, and hold a man and his wife hostage until police intervened. This woman has a son with cp. He was born (at term) the same time that April and Sophia were due. She believes his cp had been caused by the doctor's malpractice at the birth of her son. She carried much anger with her, and she had postpartum depression, and it all culminated in her entering this doctor's home and holding him and his wife there at gunpoint. She had planned to kill herself, making the doctor wait the same amount of hours she had to wait for him to arrive for an emergency c-section to deliver her son.

The reason my jaw drops when I read this article is that she is an online acquaintance of mine. She and I are both members of a message group, and we e-mailed each other once or twice upon realizing our children's similar ages. I know the circumstances surrounding her son's birth were terrible, and I know that she was angry. I can understand her anger, and I remember thinking that she seemed to have more anger than she could bear. I can relate to the despair she felt concerning her son's diagnosis. I sincerely hope that the jury that hears her case is compassionate, and I am grateful that no one was physically hurt on that nightmarish day. I feel real pain for this woman and her family.

The day I attend a funeral and then read a random AP article in my local newspaper, I recognize a great contrast between these two women. Both have sons with cerebral palsy. One had overcome the obstacle of cp to the extent that it was not even mentioned at her funeral. I imagine she had many days of tears and despair when her son was young. She had the benefit of years to learn that cp did not define her son, and also did not define her. The second woman, her wound still fresh, had felt the pain so greatly that she had made decisions that will affect her and her family's life much more than the cp. That day, I realize that cerebral palsy should not consume my life. This is something necessary for me to work toward.

Friday, September 19, 2008

The Noblest Calling

All my life I have heard it said that "Motherhood is the noblest calling on earth." The other day I was thinking the following:

  • How noble does it feel to be fishing around in your child's poop looking for a parasite?
  • How noble does it feel to scrape up red Gatorade throw up off of the carpet and then work another two days at trying to get the stain out of the carpet?
  • How noble does it feel to put your child to bed for the umpteenth time when they keep coming out of their room for a new reason?
  • How noble does it feel to clean up poop in the bathtub after your toddler decides the tub is now the toilet (or diaper)?
  • How noble does it feel to spend the afternoon making a yummy dinner and then have the first child that comes to the table declare how disgusting the meal looks?
  • How noble does it feel to sift through your child's hair looking for lice after you get a letter from the school saying your child has been exposed?
  • How noble does it feel to come in the bathroom and see potty all over the wall NEXT to the toilet?
Oh the joys... Is it okay to gripe once and a while about the "Noblest of Callings?"

Disclaimer: the above questions may or may not have happened at our household

Wednesday, September 17, 2008

My Girls

This morning the girls and I (plus tag-a-long Cooper) went on a date to the doctor's office. Alysee was having her well-child check up for turning six, a month ago and Chloe was having her two month or what for us was her 12 week check up.
Beautiful Alysee actually made it on the height and weight chart this year. She is 41 5/8th inches tall (3 % National Average) and 32.5 pounds (1% National Average). She was quite the trooper when she found out that she needed to get two vaccinations.
Alysee is a fun-loving girl who loves life! I was just visiting with her first grade teacher this morning and her teacher was raving at what a good student and friend she is. When Alysee gets home from school she loves to play "teacher" and instruct all the kids (which sometimes are her siblings, other times stuff animals). Yesterday she found that if she wipes water on her eye brows they look darker, which she has decided is quite pretty.

Alysee was cracking me up the other day when she was trying to make braces for her cute little teeth out of a hair rubber band. Why is it that you want braces so bad when you are a child? She asked me for some suggestions but I didn't disclose how my sisters and I used to make braces out of the wire twisty ties. She enjoys taking care of Chloe for short periods of time and has the capacity to be a great sister. Watch out if you catch her on a bad note, though--we still have not figured out what triggers "Wild Alysee."
Our sweet Chloe Ruth is twelve weeks old. It kind of makes me sad how fast she is growing up (just a little sad, though). Chloe is 22.5 inches long (23% National Average) and her weight is 10 lbs 7 oz (14% National Average).
Chloe seems right on target with her growth milestones. She loves to suck on her fingers and make happy cooing sounds.
She surprised us last week when she started rolling over from front to back. She has a very strong neck which I am sure is attributed to her tummy sleeping (yes, I know that is a "no, no"). She nurses during the day and then has a bottle of formula at night before going to bed. Regularly she'll fall asleep around 9 or 10 pm and then wake up around 3 am for her next feeding. Then round two of suckling comes around 6 am. During the day she'll normally take two longs naps, though I still wouldn't say that we have a predictable schedule yet.
Overnight she also became our resident worm. We found out in quite a sad way when she quietly scooted off of my bed after waking up from a nap and landed not so quietly on her poor little noggin'. Mommy felt really bad about that!
We love both of our girls and all that they add to our family! It's a challenge keeping up with all those painted toes but we are trying our best : )

Sunday, September 14, 2008

To the Ocean and Back

Last weekend at this time we were enjoying the warm sun and beautiful views of the Pacific Ocean on the Olympic Peninsula. It had been quite some time since we had been able to spend time with my Grandma and Grandpa. The kids' memories of their Great Grandparents were starting to fade so we decided it was time to make a quick trip to visit them. Knowing that we are a loud and large group we made our trip short but just the perfect amount of time for us all to reconnect.

Friday night we hopped on the Seattle ferry and enjoyed seeing the Seattle skyline lights. Cooper had been very scared to ride the ferry boat but he decided that it wasn't a scary experience at all. In fact, all this week Coop has been asking when we can ride the ferry boat again.

Saturday morning we woke up to the foggy gorgeous ocean. The kids, Birch, and my Grandma headed off for a morning scavenger hunt on the beach.
My grandma and the kids
My grandparents live right on the water but it isn't the easiest access for taking a walk so the walk started off on the little country roads.Isn't my grandparents' home just BEAUTIFUL!! This is the view from the water inlet below their house.

Tyler's first yummy find of the day!
A cute picture of the kids looking up at my Grandparent's home.
I've got such a wonderful Grandma. She is still so interactive with all the kids. Cooper and Grandma hit it off right from the start. Before we arrived at my Grandparent's home my Grandma had requested a list of one favorite food of each of the kids. My Grandma cooked her first frozen pizza, chicken nuggets, and french fries. Being such a wonderful cook it must have been hard for her to resort to processed foods, but the kids enjoyed each meal and I just thought it was so sweet of her.Alysee sorting through her treasures.
Nate showing off his crab leg and seashell.
Coop loved finding driftwood and rocks.
Best buds--Alex and Tyler
On the way home from the walk to the beach, Cooper found a new favorite--blackberries. He came home with blackberry stains dripping down his chin.
My Grandpa hasn't been able to get around as much as he would like the past couple of years. This is one reasons we haven't seen my grandparents too much since traveling has become increasingly difficult for even an able bodied person. While growing up, a ride on the "Gator" was always one us grand kids' favorite things to do. It meant a lot to me that Grandpa would share the joy of a Gator ride with my kids. And boy did they LOVE the wild fast ride!!
My Grandpa is well-known for his ingenious inventions. This is Nate trying out his skill on the Gator horn.
A rite of passage growing up would be Grandpa deciding that you were old enough to learn to drive the Gator. Alex sure felt grown-up when Grandpa took him out for his first instructions in driving.
My Grandma has the most beautiful flower and plant gardens. She has even been featured on various home gardening shows. Coop shares a bit of her love while hauling stuff around in this miniature wheel barrow.
In the gully by their home is an ancient rope swing. Apparently it is still strong (Birch tested it) and the kids ALL loved taking it for a ride.
My Grandma was so cute with Chloe. Chloe just ate up all the interaction.
This is the view of Chloe's face from the front side.
Near my Grandparents' home a creative and extreme man built "Bandy's Place." For a couple of miles their are crazy homes built like castles and surrounded by goblin fence posts.
We're missing my mom in this four generation shot.
You couldn't have ordered better weather for our ferry ride back to Seattle. It was so sunny and warm--I kept telling my kids how lucky they were to have enjoyed such terrific weather all weekend.
When we arrived back at Seattle we drove to Seattle Center and had a yummy picnic lunch, played in the International Water Fountain, and then headed to my Aunt and Uncle's house. We hadn't been able to see my aunt and uncle for several years so it was an extra special treat to spend the night with them and introduce them to Coop and Chloe.
Monday morning we took Alex to Seattle Children's Hospital to meet two different doctors. Several of the kids were able to play in a supervised "Sibling Playroom" -- a true blessing to us all. Our first appointment was with the head of the craniofacial team, Dr. Michael Cunningham. It had been four years since we last met with him so it was nice to catch up and show off Alex's newly-created ear. Our real purpose in meeting with him was to request him to write a letter to our medical insurance company to appeal their lack of treatment in orthodontics when the underlying problem is medically-related. Dr. Cunningham fully agreed with us that Alex's hemifacial microsomia has impacted his jaw size and unique dental/palate issues. We are working on collecting letters from our pediatric orthodontist specialist, local orthodontist, and a medical doctor all stating these issues in hopes that our insurance company will end up covering Alex's ortho needs.
Our second appointment was with Dr. Kathy Sie. A year and a half ago, she performed Alex's internal ear surgery which created an ear canal and inner ear parts for Alex. Alex continually has trouble with his ear canal becoming blocked by wax and dead skin cells. Our local ENT has expressed concern that Alex's ear canal is just too small and possibly needs to be widened. After meeting with Dr. Sie she noticed that Alex has some scarring on both sides of his ear canal which in turn creates the problem of keeping his ear canal clean. Through examining Alex with a microscope she thinks that this scarring is very isolated and has suggested that Alex have a small surgery in the next few months injecting this scarring with a steroid which in turn will hopefully shrink the scarring. After the injection she would place a small wick filled with steroid that hopefully will 1) keep the ear canal open during its healing; and 2) continually feed the scarring the steroid for an extended period of time. Though Alex is totally NOT excited about another surgery, we (his parents and doctor) feel like this would be worth a try. Our hope is that through keeping his ear canal clean his hearing will continue to improve.
Then off to Woodland Park Zoo. It was a gorgeous day in Seattle (I know I keep saying this but it really was such an unpredictable treat.) and the animals were all out and quite entertaining. Our legs were all aching by the end of our five hour tour of the zoo. The kids demanded that we see everything. Our personal favorite was the gorilla exhibit. There was this new baby gorilla that was so cute and even nursed from her momma's big nipples. Somehow that was much cuter than watching Chloe nurse on me.

Before heading home we stopped at IKEA and snarfed up our free birthday kids meals and window shopped a bit. We were all too tired to really enjoy the shopping so we headed home remembering that the kids all had school the next morning.

It was a great weekend and especially wonderful to have spent so much time with our extended family!

Thursday, September 11, 2008

Red, White, and Blue

It hit me last night during one of Chloe's late night feedings that today would be September 11th. As I laid in bed I began thinking of how grateful I am that I live in America.

I remember so vividly the phone call from Birch after the terrorist attack. The following weeks I was consumed with sorrow; a bit of fear; worry if I should protect the kids from the news and media covering the attack or keep them in their safe bubble; a sense of wanting to be close to family; a rally of Americans all coming together; and of course, and overwhelming feeling that...

I am grateful to be an AMERICAN!! This feeling will never go away!
The view from our front door this morning--our flag proudly hangs and we admire God's beauty of Mount Adams