Thursday, October 8, 2015


Pain comes in all shapes and sizes, all ways and places. This week pain seems to be our biggest challenge. There have been many days where getting ahead of the pain is all we are trying to do.  All our tricks, (ice packs, capsasin cream, fan, feet being uncovered) don't seem to be working. There are many things about managing Ian's care which are difficult and emotional for us...for me one of the hardest is seeing him in so much pain that he is screaming and yelling "my feet are on fire". Today, when asked to rate his pain on a scale of 1 to 10 with 1 being the best and 10 being the worst, he was at a 10...this has not happened before. We have been working closely with his hospice team and all of his pain medicines have been increased over the last few days. We are hoping that the increases will help Ian's pain come down from a 10 and for us to be able to manage it. 

Make some memories this weekend, I know we will. Treasure, dream, live. 

Tuesday, October 6, 2015

More From The Grief Club

Over the last few weeks I have been doing more reading on grief...the reading helps me to realize more and more that I have been grieving for quite a while and it comes and goes for me. The Grief Club: The Secret to Getting Through All Kinds of Change by Melody Beattie has helped me to realize that grief comes in all shapes and sizes. Here are some quotes from the book which I have found interesting. I hope you do as well...

If there's no purpose to it, loss feels impossible to endure. But if we see some meaning, bring the struggle on.

...understand that sometimes life twists, and it doesn't matter what you do.  Things don't work out the way you want, and you can't do much about it. The only way out is through. 
...every stinking dirty little thing that happens to us happens for a reason. I take each day as it comes. Each experience has something to teach us. It's our job to figure out what that lesson is.

Destiny is sneaky. It creeps up on us when we're not looking. Sometimes were staring at our problems so hard we forget they're part of our destiny too. We might forget our dreams, but our dreams don't forget us. Dreams are life's way of showing us what our destiny is. 

Meaning is important. Certain things such as religious objects or holidays have universal meaning. En masse, we agree that something means a particular thing. But the meaning we attach to life events is personal. It doesn't matter if something means anything to anyone else. What matters is what an event or experience means to us. We can go through horrendous struggles if there's meaning to what we endure. 

We each have a magic wand that can change us and impact the world. It's called our power. People say we own our power, but power isn't something we own.  It's something we step into, grow into, breathe into.  Power is a force in the universe we align with. We don't pick it up like a club.  We can write and rewrite stories that create self-esteem and the knowledge that we are loved. Even in worse-case scenarios where we weren't loved or we lost our self-esteem, we can write a new story or another ending. 

Many grieving people go through a cycle when they have nothing--no energy, attention, or love--to give anyone in their lives. That doesn't mean they don't love those people. It means they're depleted. There's nothing left to give. Intellectually, they know they should do different and better. But they're only human, and their humanity shows. Sometimes we need to accept and forgive others and ourselves because our best wasn't very good. Sometimes we go crazy--insane--with grief. If we wait for life to entice us into living, coax us into believing I it again, we may wait a long time. Making a commitment to life starts the ball rolling. We'll still have more grief to go through, more emotions to feel. But when we commit to life, we stop the downward spiral. Pieces start falling into place. 

Until next time...remember to treasure, dream and live.

Friday, October 2, 2015

Wheelchair Clinic and Follow-up on Shoulder

This morning started off early at Mount Washington Pediatric Hospital at the Wheelchair Clinic. We got to see a few faces we haven't seen in a long time, Ms. Sharon, Ms. Kathy, Ms. Trish and Mr. Craig. Over the years, we have worked with all of them for many different reasons. Today it was looking at modifications on Ian's wheelchair.  He sits ok in his current chair but since his surgery modifications definitely need to be made. We are hoping for a new set of wheels, back piece, and headrest. The biggests obstacle will be insurance, here is to hoping that they give authorization quickly and with out questions.

This afternoon, we went to see orthopedic for his shoulder. X-rays were taken ... It is showing signs of healing. He can stay in the sling for comfort and we don't have to go back. 

Woo hoo, two good appointments. Now it's time to stay in and out of the wet.

Happy weekend.

Wednesday, September 30, 2015

Microcephaly Awareness Day...I Love Someone with Microcephaly

Today is Microcephaly Awareness of the characteristics of PCH is microcephaly. 

According to The Foundation for Children with Microcephaly....
Microcephaly means small (micro) head (cephaly). It is a neurological disorder where the head circumference is less than it should normally be in an infant or a child. The condition can be present at birth or develop within the first few years of life. Most parents do not know why their child has microcephaly and may never know the cause - even with advanced genetic testing. The most difficult thing we have found is each and every case of microcephaly is different. Some children have mild to moderate delays, while others have severe delays. Most of the time there is no way to know how your child diagnosed with microcephaly will develop.  In some cases delays are apparent right away, and in others delays won't show up until after a year old. So the only thing that we as, parents, can do is just try to help our child progress, enjoy every moment with your child and take life day by day - trying not to worry about all of unanswered questions (which is must easier said than done).

Tuesday, September 22, 2015

As Fragile As China

On Sunday when the van broke down, we were fortunate to have my cousin, Michelle, at the same event we were at so she came to pick us up. While transferring Ian from the van to lay on Becca and I in the back seat of her car, Ian's arm got postioned behind his head. He immediately started complaining about his shoulder. We calmed him down and didn't really think much of it. Sunday night he complained a little bit of pain but nothing his pain medicine didn't take care of. Monday was a good day and no complaining of any shoulder pain. He slept well on Monday night.  Tuesday was a different story, Ian did a lot of complaining of shoulder pain. After many doses of pain medicine, which did not seem to touch the pain and a conversation with his hospice nurse, we decided to take Ian to Hopkins ER for X-rays. I guess I'm glad we did. Ian has a fractured humerus, upper arm. So we are in a sling and keeping it immobilized. Hoping for an easy few weeks while he heals. 

My Helpers

Because of the van breaking down, on Sunday, Tuesday I was fortunate to work from home. Ian was my helper while I was working....he help the envelopes while I did some labeling. His smile was priceless.

Also on Tuesday, I began prep for break fast for Yom Kippur, my helper Becca. After I peeled all the eggs for the eggs salad she chopped them.
Feeling grateful to have some quality, priceless time with both kids.

Sunday, September 20, 2015

Things Happen in 3's

Over the past 3 weeks...I would like to say things happen in 3's and then you are done.

3 weeks ago our stove went up...ok, easy not so inexpensive fix,  a new stove.

Last week, our microwave went up. Ok so another easy fix...a new microwave.

Well today, we headed down to the Pasadena area for a Chai Lifeline end of the summer family BBQ. We had a great time, Becca went on a jet ski, swimming, both kids went fishing. It was beautiful weather. Time to come home, we are 5-10 minutes into the ride and Brian said the temperature light comes on and then we start to see smoke from under the hood...the 3rd thing...our van breaking down. Thanks to my wonderful cousin, who also happened to be at the BBQ, the kids and I got home safely whole Brian waited with the van for the tow truck. Tomorrow we find out how easy and I'm sure not so inexpensive this fix is.

I know this is all just stuff, just frustrating and interferes with life.

I believe things happen on 3's. ..ok I'm done.