Saturday, May 2, 2015

Thank You Universe

Watching Grey's Anatomy again on Thursday night and how everyone dealt with Derrick's death...there were a 2 different parts which hit me over other's. I wanted to remember them and share them with you...

The 1st one is a conversations between Amelia (Derrick's sister, a neurosurgeon) and Owen (the chief MD at the hospital as well as a possible love interest of Amelia). Amelia is a recovering drug addict.
Amelia: I have a Baggie full of black market oxy codeine in my jacket pocket. And I'm trying to decide whether or not to take it. I've got the dead Derrick thing completely managed. I know people are worried. Since he has died everyone has been looking at me waiting for me to fall apart or freak out or just become a mess. Like some bomb everyone thinks is supposed to go off. My mother has been calling 3-4 times a day. Jasmine has been calling everyone. Makes sense. It's natural. Every man I have ever loved has died including my baby. Thank you universe. So it should be like Greek tragedy turned to stoned bad crack crazy but I am good. I got this. I'm fine. I'm telling you I am amazing. I'm saving lives left and right, I am putting butts in the seats in that OR gallery. People are fighting to hear me lecture. I am entertaining joke, joke, joke. I am funny. I am fun, I am a party I am doing I'm great. I'm handling the dead Derrick thing really well. Except today I yelled at Richard; he was only trying to invite me for coffee. And then I went and scored a bag of oxy from this junkie doctor. ..... It was fine. It was managed. ....

Owen: All that stuff you are managing, you are not supposed to be managing it.  You are supposed to be feeling it, grief, loss, pain, it is normal. It is not normal to you because you have never done it. It's a feeling, a feeling of grief, pain, you shoved it all down and you do drugs, instead of moving through the pain you run from it. It's tough. Dealing with being hurt and alone and afraid, this horrible feeling that is all there. I even run from it. I run off and I sign up for another tour of active duty. We do these things, we run off and we medicate, we do whatever it takes to cover it up, dull the sensation but it's not normal we are supposed to feel. We are supposed to love and hate and hurt and grief and break and be destroyed. And we build ourselves to be destroyed again. And that is human, that is humanity. That's being alive. That's the point. That's the entire point don't avoid it. Don't extinguish it. 

There are times when I run, we all run, but more then not we feel and we deal because we have to...but many times I am heartbroken...I know I will become more heartbroken as times goes on but eventually I will come back and continue to deal, because all that is human, that is humanity. That;s being alive. That's the point. That's the entire point don't avoid it. Don't extinguish it. 

The 2nd part is at the end of the show when Meredith's is remembering her mother and Derrick...
I have to believe there is a way. There has to be a way to step off the carousel to start again. To start fresh. There has to be a way to leave all my ghosts behind. You are anything but ordinary. You have a choice. It's a choice I'm making to move forward. To move past this I can do that. I can do that. All I have to do is begin. 

Eventually, all I will have to do is to begin again...

Friday, April 24, 2015

RIP Dr. Derick Sheppard, Grey's Anatomy

It has been all over Facebook....people crying, people want him back. Dr. Derick Sheppard died last night on Grey's Anatomy. (Sorry if this is a spoiler for some). It was acting for Derick and Meredith, just a TV show, a job, but for some it is reality. It could be our reality. 

Accidents happen, people get hurt, people die, it's all part of life. It is a VRK1 mutation, PCH1A; for us, no accident, a genetic mutation. What are the chances, one in how one knows. PCH1A is something you have never heard of before Ian, something we have never heard of before July 2012. Regardless of the name it has not changed our reality, it would still be the same.

Watching the nurse turn the life support machines off on Derick, was heart wrenching for fans of the show. For Brian and I, we saw our baby laying in that bed, envisioning what it would be like....are we going to have to take him off the vent or will it be something else? Last night was not the first time we have envisioned this or spoken about it, we are well aware the time will come when we may need to turn the vent off, take him off life won't be fair to him to continue living the way he is...we are well aware. My emotions were a little out of sorts watching the show, to be honest they still mind keeps going back to the scene from Grey's. What will it be like, is that how it will happen, how much reality do the writers put into the show? 

I know over time the image will not keep running through my will get easier and I will forget, well at least for a time being, as the show did not put anything new into our minds, it just reinforced it. 

For now, we will try to treasure yesterday, dream of tomorrow but live for today.

Wednesday, April 22, 2015

Happy 12th Birthday and How We Are Doing

First and for most, I want to wish my sweet girl and boy a very Happy 12th Birthday. Both of you have given mommy and daddy, along with so many others such joy over the years. No one knows what their life journey will be and what a journey it has which we continue to treasure, dream and live....thank you both for giving us special days, each and every day.

We have been doing great since being home. Ian continues to heal well, resting, sitting in his chair for a few hours a day, even getting outside on the porch a little bit. He has been more comfortable in bed and not needed to be re-positioned as often as he used to. His surgical site looks wonderful and continues to show signs of healing every day. We could not be happier with the way he is doing. Becca is doing well and back into the swing of school, hard to believe it is the last quarter of 6th grade. Girl scouts is coming to a close soon as well and then before we know it, she will be off to all of her summer adventures. She has her moments of dealing with things, of having to grow up to fast and being more mature then a lot of kids her age...of being a typical 12 year old...we are working hard for her to be able to do more things outside of the house with friends...after it is all about being a kid when you can be one...isn't that what we all want for our kids. 

We are looking forward to what this year hold for us on our journey through life with PCH1A....the ups, the downs, the good, the bad, the pretty and the day and step at a time. 

Thursday, April 16, 2015

When Your Medically Complex Child is Never Really 'Out Of The Woods'

Originally appeared on Feeding Raya

Parenting is hard. There's so much to worry about. Throw in complex medical conditions and what's considered "hard" about parenting changes. The things at the forefront of the mind are different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they're real and valid. For parents dealing with medically complex children, those typical worries still exist, but they have to take a back burner to more basic, primal needs that keep the child alive.

The term "medically complex" is a vague umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions fall under the umbrella of "medically complex," but chances are if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many medically complex children have diagnoses of genetic conditions, diseases of major organs and neurological disorders, and many have a collection of symptoms with no diagnosis.

Parenting a medically complex child means not only providing the usual care and nurturing but also becoming an expert on whatever medical conditions affect the child. It means learning how to operate medical equipment, perform medical procedures, use the various tubes and devices attached to the child and acquire an entire vocabulary of medical terminology. It also means preparing for any of he potential emergency situations that could arise and knowing that danger of these emergencies happening always lurks in life's shadows.

Parenting a child with any type of special needs changes the way the mind works. The blinders come off, and nothing can ever be looked at the same way. Acknowledging the darker side of life does not make parents of medically complex kids pessimists; it just means they're doing their best to cope with the often ugly and terrifying realities that accompany their children's medical conditions. From an outsider's perspective, it can be difficult to understand that no matter how good a medically complex child looks, he or she may never really be "out of the woods," so to speak. Medications can keep symptoms at bay, and special diets can help control the damaging effects of disease. Feeding tubes can ensure adequate nutrition and aid in overall health. Insulin pumps can keep blood sugars stable. Congenital conditions can be repaired surgically. All the medical interventions parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment. In the blink of an eye, things can go from calm to complete disaster.

This is why we're stressed out and why we can't completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we're waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we're out of the proverbial woods because mentally, we can never really leave the woods. It's all we've known since our medically complex children entered our lives, and we can't erase the memories we've made there. We see terrifying and devastating things happen to the friends we've met while living in the woods, and we understand those things could happen to us too. Next time, it could be us.

If we seem a little overbearing, overprotective or paranoid, know it's for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we've dedicated our lives to caring for our children, but what that requires of us is different. Living in the woods is not what we planned for our children and certainly not what we wanted for them. Since it's beyond our power to change that, all we can do is do our best to enjoy the scenery, keep living and create a safe and happy life for them, even if it is in the woods.

Wednesday, April 15, 2015

The Birthday Presents

Today, Ian had school and he worked on a sheet called The Birthday Presents. He had to pick 5 presents on the sheet and write a sentence about each one. Here are his sentences:

1. Ian wants the DVD Thor: The Dark World because Thor is brave like me.
2. A spiderman sheet set would be a good gift because spiderman is my favorite superhero. 
3. I have always wanted a train set to build up a little town and watch the train go around. 
4. I would like to go to a baseball game to get an autographed bat and ball. 
5. A big surprise party would make me happy because I like being around family and friends. 

So here are the answers Brian and I gave to him.

1. Ok the DVD is something we can get him for his birthday. 
2. While we would love to get him a spiderman sheet set, they don't make them to fit hospital beds. So we asked him if he would settle for the blankets and pillow cases he already has. He said yes for his bed in his room but what about for his bed in the den.  We continued to tell him that his bed in the den is also a hospital bed. His response, oh man.
3. Train set: he has one....and has told us to give it away, so no need for a new one. 
4. The baseball bat and ball, since we were in his room this one was easy....we pulled out his 2 baseball bats that are autographed as well as his 2 baseballs that are autographed. One of the balls is the one from 2 summers ago when he threw out the first pitch.  So he has eclipsed the basic autographed bat and ball. 
5. The party: told him to forget he knows anything about his party and then it will be a surprise.

This was just classic....too good to not share as well as for me to document so we remember it. 

Sunday, April 12, 2015


Last night, Brian and I saw WICKED, the song FOR GOOD, made me think of Ian. Here are the words... And while I may not always feel it or show it.. But because of him I am better and changed for good.

I'm limited
Just look at me -- I'm limited
And just look at you--
You can do all I couldn't do, (Ian)...

Because now it's up to you
For both of us--
Now it's up to you

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And at are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...

Like a comet pulled from orbit
As it passes a sun

Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I know you
I have been l changed for good...

It will may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And I know you have rewritten mine
By being my friend

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you...

Because I knew you...

Because I knew you
I have been changed for good...

And just to clear the air
I ask forgiveness
For the things I've done you blame me for

But then, I guess we know
There's blame to share

And none of it seems to matter anymore

Like a comet pulled from
Orbit/as it passes a sun/
Like a stream that meets a
Boulder/ half-way
Through the wood

Like a ship blown off its
Mooring/by a wind off the
Sea/ like a seed dropped by a
Bird in
The wood

Who can say if I've been changed for the better?
I do believe I have been changed for the better

And because I knew you...

Because I knew you...
I have been changed for the good.