Thursday, May 18, 2017

May 18th - A Day of Hope

Tomorrow is May 18th. To 99.9% of you who read this blog that day most likely means nothing significant to you. It is just another day among many days that come and go without a passing thought.

May 18th to our family is a day of death, rebirth, and Hope. May 18th is the day, four years ago tomorrow, that we rushed Sarah to the emergency room because she suddenly lost her vision. May 18th is the day that we were told that she had an autoimmune disease. It is the day that doctors and nurses took us aside and shook their heads, some with tears in their eyes, and expressed sorrowful sympathy at the diagnosis before us. It is the day that we were told to expect the worst.

In a lot of ways May 18th is the death of our old life.  It is the day that all of our lives irrevocably changed. It is the day life plans were altered and driven off course.

May 18th also marks our rebirth. For although the life we knew was gone there was a new life waiting for us to grab on to. A life full of Hope.

I almost forgot that tomorrow was the day. There is a flurry of activity in our house right now, and time seems to be slipping through my hands. It was Sarah who came to me this afternoon and said, "Mama, tomorrow is four years. Tomorrow I will have been blind for four years."

It was silly of me to think that she would forget what day it was as well. Although all of our lives were altered significantly when she first became sick it is, of course, Sarah's life that was the most affected.

As time goes on, I have less days where that literal heart ache stops me in my tracks. I cannot tell you the last time I had to rub my hand over my heart to try and keep the hurt away. That doesn't mean that it doesn't hurt anymore because that would be a lie. And that doesn't mean that I have gotten over what we been through these last four years. What she has been through. I think anyone who tells you that you'll get over grief has never felt its sting. You don't get over it. It becomes a part of you, and you learn to live with it. Some of us live with grief better than others. Some of us wear our battle scars on the outside while others of us wear them on the inside so that no one can see them.

But that doesn't mean that grief is going to take over my life or any of our lives. Because it isn't.

Sarah is doing amazing things. Her siblings are doing amazing things and learning amazing things because they have the gift of having an abled differently sister.

There are times when I wish so desperately that Sarah could see. In these last (almost) 3 years we have lived more life and experienced more cool things as a family than in the combined 14 years prior to that (which is when we first became parents). I wish that she could see all of things that she inspired us to do. I Hope someday she will.

Sarah's disease, in some ways, is a gift. She has inspired so many people. Because of her we have done so many, many cool things. We have been so many cool places. We have met so many amazing people. Her disease was a wake up call that told us that health is not guaranteed. Life is not guaranteed.

Being blind is not the end of the world.  Do me a favor? Set a timer for 30 minutes and close your eyes and pretend to be blind. Try to go to the bathroom, make your bed, pick out your clothes, get dressed, make yourself some food. It's hard. I've tried it. This is Sarah's every day life. No, being blind is not the end of the world, but it sure can be hard. And she rocks it almost every day. (Although blindness is her main symptom she does struggle with fatigue, numbness in her left leg below the knee, and some cognitive issues.Her lack of vision is what most affects her, but is not the only thing part of her body that this disease has taken its toll on.)

So, tomorrow we aren't going to mope around the house  and feel sorry for Sarah and ourselves for all that we have lost. That would be silly. Instead we are going to head out for a family dinner to celebrate all that we have been given these last 4 years. We will celebrate Sarah, but also Andy, Josh, and Elizabeth too. Her disease affects them all in a 100 small different ways.

Sarah is absolutely amazing. Her life is worth celebrating.  If you know her personally you know exactly what I am talking about.

So, tomorrow have a beer, glass of wine, or perhaps some milk and toast Sarah. To all of the greatness that is yet to come in her life despite the speed bumps she may face. To her bravery. To her amazing resiliency.

Wednesday, May 10, 2017

Hug Point

Today marks the 4th sunny day in a row here in the Portland area. I don't think we have had 4 sunny days like this since last September. I am not kidding.

 In honor of this wonderful day the kids and I put our school books away and headed out to the Pacific Ocean. We have been coming out to the ocean quite a bit the last 6 weeks or so. I think that when we move away it is the close proximity to the ocean that I will miss the most, and in light of that we have been trying to take advantage of every opportunity we can to head out the the hundreds of miles of shoreline that Oregon has to offer. 

On my birthday Bob and Elizabeth took me to Hug Point. It is a string of beaches that are separated by rock formations. When the tide is high you have to hug the rocks in order to not get swept away into the ocean or so goes the tale surrounding the name of the point. As the tide recedes you are able to make your way around the rock formations and hop from one beach to another. There are at least 4 beaches that are connected in this way. 

There are caves and tide pools. There is a small water fall too. This place is my new favorite place. I think I like it even better than Crescent Moon Beach. (Or maybe the two beaches are tied.)

We brought the dogs today which I hesitate to do any more because Lily likes to bark at other dogs and it makes people uncomfortable. For some reason, Hug Point is not overly populated and I figured being the middle of the week it would be a good time to try and take them for some fun. Both dogs did great. Lily only barked at one dog and their owners were pretty chill. 

The kids had a great time. They loved this beach too, and all of have said that this is there favorite new beach as well. 

Today was just a great day. It was warm (for this part of the country anyway). The sun was out. There wasn't a lot of wind at the ocean (which is not usually the case). It was a worry free day. It was much needed. 

We just arrived at the beach at this point. High tide was still 30 minutes away. The other side of this rock is where the next beach lies. 

Checking out a small cave on the first beach. 

View from the first beach looking out towards a connecting beach which is behind those rocks you see. 

Having some beach day fun in the water. 

These two had so much fun together. 

Exploring a cave while a wave washed up into the area where they were standing. 

Rock climbing to try and outsmart the waves to get to the next beach. 

Wave coming in...

Wave moving out...

Just chillin'

Miss Thang got a new cane today...


Trying to figure out how to get to the next beach without getting soaked by the waves as they wash up onto the rocks. 

Man's best friend x2.


"Wait for us!!!"

"Is the coast clear?"

Trying not to get soaked.

The second beach.

I am actually taking this picture from about 10 feet above the beach. There is a waterfall at the end of this rock that drops to the ocean and empties the fresh water from the stream I am standing in while taking this picture into the Pacific Ocean. 

Eventually we will make our way over to this area - which is the third beach area - but it will be a good while yet as the waves are fast and furious and the tide too high still to make it over there. 

Playing some ninja game together. 

Water, water everywhere. 

This picture sums up why this area is called Hug Point. You literally have to hug the rocks to make sure you aren't swept away with the tide. 

What is a day at the beach, or any day for that matter, without a game of soccer?

Tuckered out. 

A tide pool on top of a rock.

In order to get to the last beach you have to walk along this ledge. This is the low point where the waves were still splashing as you can see. It was little bit scary for me I am not gonna lie. 

In the distance is the Goonie's rock.