Thursday, December 9, 2010

Frozen

Its funny that at a time in my life where I probably have the most to say that actually needs to be remembered and recorded, I hardly have the time to sit and write.

How do I describe what I am going through?

There is no way to capture the essence of my life right now. Surprisingly its not what I thought it would be...hard, sad, and painful. It can be those things and sometimes it is but for the most part the only way I can describe it is sweet.

My life is about basics and caring for those that I love more than I love myself and that can not care for themselves. I have to force myself to remember that life is still happening outside of our experience here and that the world is still moving forward as is time. Its surreal, like I am frozen inside of a snow globe hardly cognizant of the outside world. I am sheltered from the business, hustle, and noise of modern life. I live in a wonderland of beautiful Christmas decorations with no outside responsibilities and expectations. I have been able to give my whole life and heart over to what Christmas is really about, love and giving.

My Mom's condition continues to worsen at an alarming rate. I look back a week ago and cant believe the difference and the changes in such a short amount of time. Her left hand and arm are completely useless, so much so that I lovingly named her arm Limpy :) Her right hand is weakening. Writing and small motor skills are becoming increasingly more difficult. She can not eat very much and we feed her mostly through her feeding tube. She cant suck out of a straw. She can not get out of a chair unassisted, or climb the stairs without someone there for support. The scariest part for me is how often she is out of breath and how much she is slowing down. Nothing has ever been able to slow my Mom down before - ever! Its hard to watch her be forced to admit the defeat of her body to this disease. Her poor shoulders are starting to hunch over and her muscles are getting sore and atrophying. Yesterday for the first time I saw fasciculations on her face from her temples all the way down to where her neck and sweater met.

While all of that is difficult the most grueling part of everything is that her ability to communicate through speaking is almost completely lost. Partly due to the fact that her tongue (aka: the Slug - another nickname I use endearingly) has little mobility left and partly due to the fact that talking takes more lung capacity than she has. This has been understandably hard, especially on her. We try to make the most out of it and we joke about the funny interpretations we come up with.

My Mom is teaching us to be patient, loving, kind, and compassionate. As well as giving me a perspective on life that has taught me about what really matters. Her last lesson on perspective and attitude will never be forgotten or lost.

Last night was wonderful. I was wrapping presents and she was talking to me through her i pad. We were simply hanging out. I love that we can talk about anything, nothing, and everything all at the same time. I am never more comfortable and free to be myself than when I am with her. She knows me and understands me better than anyone in this world because I am like her.

ALS may be able to control my Moms body, but it has NO control over her spirit, nor will it ever conquer that part of her.

She will always be the:


STRONG

FUN
EXUBERANT

LOVING

SILLY

&
SASSY

woman she has always been.

Being here with her and my Dad has been one of the best experiences of my life. I'm not really sure how life will be able to go on without her. I expect that is when life will feel hard, sad, and painful. For now life is sweet in its simplicity and I am immersed in love and the true meaning of Christmas.

I like living in a snow globe...especially one without snow!

Monday, December 6, 2010

Christmas Baking

My little elf helpers....


Sunday, December 5, 2010

A visit with Santa




We took Caleb and Davis to see Santa with Savannah at the Mall. We almost got thrown out for taking our own pictures but hey it was worth it! You have to buy a package in order to use your own camera and the packages start at $24. Nice. One of the employees told us it was okay to use our own camera but then the guy up from went crazy. I just played dumb :)


Davis was very intrigued by him.
Savannah wanted nothing to do with him!
Afterwards Grandma Silly too us to Auntie Ann's for a traditional pretzel! It was a great little outing and it was fun to just be out with Grandma!

Saturday, December 4, 2010


My cousin Kelly took the boys and I to Pretend City in Irvine with her daughter Savannah and we had a blast! It was a heaven sent since the boys really needed a place where they could run around and be busy! Its a whole city built for kids to explore and pretend. Of course the biggest hit for my boys was...

...driving the cars!


They had a grocery store...

A fishing wharf...

A Doctors office....


A Farm....

Where Savannah found her inner farmer!

A studio where you could either perform or be in charge of the lighting....

The Curious George area where you could send blocks up a conveyor belt...

A Fire and Police Station...

A beach...


Plus a whole lot more! They did a really good job of using clever ways to let kids explore and pretend. Kelly and I were laughing about how much work it still is to keep track of kids even in a place that is compelely kid safe.


Thanks Auntie Kelly and Savannah!

Friday, December 3, 2010

Geography

Tonight we went to the Brea Nativity. In my weak attempt to keep Davis relatively quiet and still I was asking him all sorts of questions from the nativity story...

Mom: Where was Jesus born?
Davis: Ummmm
Mom (giving a hint): Beth...
Davis (eyes lighting up): BethAmerica!

Wednesday, December 1, 2010


The boys and I are all settled in here in California. Its hard to find the time to sit down and blog but I wanted to be sure to give all the details from our Thanksgiving. I never want to forget the details. It was perfect in every way! My Aunt and Uncle are the best hosts!

Our cruise director, I mean my cousin Kelly, had planned activities, meals, movies, and it was nice to have a basic outline of what was happening and yet it was flexible enough that it didn't feel like there was a lot of pressure. John was fantastic and really stepped it up taking care of the boys so I could spend time with my Mom and the girls.

We all arrived on Wednesday night to my Aunt Pam's and Uncle Rick's home is Palm Springs. We were able to rent the house directly next door from theirs. It was nice to all have a space to spread out and to ourselves, not to mention the fact that we had 2 kitchens for Thanksgiving! That first night we were able to put all the kids to bed and have a Bunco tournament - which was super fun! We especially had a good time when it came time for the prizes which we played like a white elephant exchange. Thanks Auntie - I LOVE my batteries!

Each year they do a Thanksgiving 5K. This year the race course was lame but it was fun nonetheless to go and get some exercise before the big feast. My Mom was a trooper and rode in the wheelchair for the run. I know that must have been really hard for her. Shes a mover and WOW she was one amazing power walker!




Some of the boys ran it and my cousin Peter came in with a time of 23 minutes! So impressive! John was a couple minutes behind at 25 minutes (also impressive babe!) but the poor guy couldn't stop coughing for hours :)

Then it was time for the Turkey Olympics! We had fun planning little events for the kids to compete in. 1st up was the Turkey eat where the kids had to move candy corn from one plate to another in their mouths with their hands behind their backs.


Caleb was our winner and was pretty stoked about it!
Then we had our Turkey trot where we tied their laces together and they had to use really little steps while racing.


We had a feather blowing contest and the last event was where our little turkeys had to stuff themselves! We made each of the kids put a red balloon between their chin and their chest for their turkey wattle and then they had to stuff as many balloons in their shirts as possible. Briggs may not have had the most balloons but he never once let go of his wattle and I think he was the only one!

Check out that dedication!

Not only did I have a few dishes to prepare for dinner but our garden's tomatoes finally decided to ripen therefore I got to can tomatoes on Thanksgiving day. Bummer. But luckily for me I had good company and so it was lovely. My Mom was there and then Peter came over and we got to catch up and talk about what was going on in his life. You know things like how he just won an Emmy! WOW! It was relaxed, laid back, and felt so comfortable and nice. Exactly the way a vacation is suppose to feel!

Dinner was elegant thanks to Kelly's beautiful decorations.

Even the kids table was decked out to the max!

There was a lot of anticipation for the meal!
Which is only natural when you have a turkey like this!Nice work Aunt Pam!

All of our feelings this year were very tender. The Thanksgiving prayer was beautiful and I loved this moment right after when my Dad, Mom, and Aunt hugged and held each other.


My Dad takes such good care of my Mom.
Its very endearing to watch.

Savannah and Auntie Grandma playing.

Nothing like a movie to let the food settle before pie!


I ended the day with a long soak and talk in the hot tub with Kelly. It was nice to catch up and talk about everything in our lives. Neither of us have sisters and we have always filled that void for each other. We have become even closer these last few years. When we went inside my Aunt Pam and Peter were still awake and we spent some time talking, crying, and attempting to come to grips with our new reality.

On Friday John and Brian headed out Black Friday shopping while I slept in from my late night. The girls got pedicures, the kids spent another full day in the pool, my Moms cousin Sharon visited and I found all sorts of skeletons in our families closet! :) The girls hit up Bed, Bath, and Beyond for the sales and then John and I cuddled up to Four Christmas. A perfect way to end the day!

Saturday the boys got up early to go golfing and I got to take care of my mom for the first time. I had never fed her through her feeding tube before and had only watched once. I was relived my Aunt, who is a nurse, was there to help walk me through it. Then I got to help my Mom shower, dress, do her hair and her makeup. I know its hard for her to need that much assistance but she does it all with a smile and her signature thumbs up. She is amazing! I gave her an early Christmas present on Thanksgiving. It was a necklace from the R House Couture shop that says, "I can do hard things." She wears it each day as a reminder of her strength and ability to handle this trial in her life.

After golf the kids did a craft with Grandma Silly making Santa's out of toilet paper rolls.
Or at least we will say the kids made them :)
After the craft the kids hit the swimming pool and I got to spend a little time with just my brothers lounging by the pool. It was nice to talk about all the things going on in our lives. They are the only ones that can feel what I feel right now and I'm grateful that we have each other. It was so nice to have 2 fully pool safe kids so that we didn't have to worry about them. The kids spent no less than 4 to 6 hours in the pool each day - which you need in order to perfect sweet moves like these!




I'm pretty sure that is the closest Caleb will ever come to walking on water :)

It would be neglectful to leave out that there was a lot of this going on all weekend long....

But since John was watching the kids while also watching football, I have nothing to complain about!

My Mom, Aunt Pam, Kelly, and I all sat down and started watching The Holiday and enjoying a little junk food. We were interrupted by the bitter reality that it was time to pack up and say goodbye to some families that were leaving. John and I stayed a little bit longer to meet Jenny, my Moms best friend from growing up who came with her husband for a visit.

Then it was over and John, the boys, and I were headed back to my parents house. My heart was heavy, sad, and full of longing as we drove away. One more milestone and event has passed. Thanksgiving will never be the same again. I hate when time becomes so tangible.

When we came home I set myself to the task of moving the boys and I in as much as possible so that it wouldn't feel like we were living out of suitcases for the next month. It was hard to say goodbye to John and Caleb. Caleb clung to me and even let me scoop him up and carry him to the car with his head hidden in my shoulder and neck. I couldn't help but cry! The next time I see my little boy he will be turning 7! Where does the time go? John and I had a long tight embrace and then they were off on their roughing it adventure while the boys and I starting settling into our new routines here.

I can not put words to how relieved and happy I am to be here! Its not easy trying to keep the boys entertained, relatively calm, and (hopefully) from destroying my Mom's Christmas decorations and house. It seems they have quadrupled in energy since coming here! I know I'm much more sensitive to the noise and energy they have. But seriously it seems our little boys especially have energy bursting out of them at every moment as if they are trying to release it before spontaneously combusting!

But the feeling of being here with my Mom and Dad right now doing the day to day things is worth it in every way! I'm so glad they have welcomed us here and are making it possible for me to come help, even if I come with a little baggage.

That is what I am most Thankful for this year. The chance to be here with both my Mom and Dad during this time. Funny that even now when I'm suppose to be here because my Mom "needs me" its really more me that needs to be here taking care of her.

I am thankful for one more Christmas season and the time to say goodbye. I think about what it would be like if my Mom had died suddenly and I become so much more grateful for this time. For every hard and sad thing we face there is a second side full of blessings that strengthens and sustains me.

We are blessed with love in our family.
And doubly blessed with laughter!