Wednesday, January 29, 2014

Choose joy {stop may miss your ride}

I heard a news report yesterday while listening to KLove radio.  The report was on a group of people who volunteered to be in a sleep study.  One group slept much better than another group.  Scientists took both groups, separately, to give them memory tests.  Before the tests were administered, the group that was "sleepy" was convinced by the scientists that they had a quality night sleep.  The sleepy group actually performed better on the tests because they were coached and convinced that they slept great.  They were in a mindset that they weren't tired.  The news report then went on to say that by simply convincing our self towards the positive of a situation can be all we really need.  Negativism, pessimism, and constant complaining can be detrimental to our lives.  These "qualities" rob us of joy. 
For some reason, this simple idea kept playing over and over in my mind.  I am an eternal optimist.  Or at least I like to think that way about myself.  I do believe that I have trained myself to be this way.  I like to see the best in everyone, avoiding conflict at all costs.  Daily, I choose to get out of bed and face the reality that my child is slowly losing her abilities.  My husband, before he goes to work every day, goes into her room to listen that she is indeed, still breathing.  Yet, Jake and I have made the choice that we are not going to let this devastatingly scary and tragic situation rob us of our joy. 
While we were in Disney, I loved people watching!  So much happiness and joy all around.  Lots of people to watch, and lots of situations going on.  I overheard a lot of conversations.  It's hard not to, especially when you are on the monorail or a bus.  One particular, not so happy situation relates a lot to this post.  We had to catch a bus to one of the parks.  The monorail was down, so this was our only option.  People were not happy about this.  The convenience of the monorail is why some people choose to stay at certain resorts.  So we were waiting for the bus, and there was another family on the bench beside us.  The husband was in such a tiffy about the monorail being down, and was reaming the Disney attendant working the stop.  She was kindly explaining to him why the monorail was down, but she assured him they had extra buses working and he would get to the park.  He continued to voice his annoyances, and kept making me feel very uncomfortable and I had nothing to do with the conversation.  His blood pressure was up, his wife was embarrassed, and the attendant was at a loss.  The constant complaining got him nowhere and made the situation worse than it needed to be.  It probably set the tone for their entire day.  We overheard that they were going to the same park we were.  We saw our bus, proceeded to board the bus, looked back and there was the man still sitting on the bench {complaining} and they missed their ride.   
Disappointment is bound to happen.  Tragedy and unwelcome circumstances are a part of life.  I'm not saying people shouldn't voice how they are feeling or give an opinion.  However, I am saying there are things we can't change that are out of our hands.  We can however, manage our feelings in a constructive manner. Do I want this life for Livia, absolutely NOT.  It hurts, everyday it hurts, but complaining about it will only set the tone for misery.  The insight to life that we've been given along with Livia's diagnosis has made this mental statement to me that I feel I need to share with you; life is short, family is everything, joy is all around us but you must choose to want that joy in your life.  When you are able to choose joy, you will be able to LIV moments more fully and with more vibrant life than you could ever imagine.  

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.” 
― Rumi   

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” 

Friday, January 10, 2014

Protecting my cubs

As a parent, we have a primal instinct to protect.  The second our child is born, our role is to frankly, keep them alive.  Our babies depend on us, 100%, for at least the first several years of their lives.  In the jungle, a lioness will go to any length to protect her cubs.  She even hides her cubs for the first 2 months of their lives.  Often times the lioness will be killed during a pride takeover protecting her cub from attacking males.  I believe, as a parent, we are wired to always protect and worry about our kids, no matter what age they are.  Typically, we raise our children and they become more independent.  We are to instill good values, manners, sense of humor, et cetera.  They, in a sense, are to one day leave our pride and the circle of life continues.

With Livia, and any child with Sanfilippo or other rare and devastating genetic conditions; our role as parents for their entire lives is that of protection and well being.  Livia is completely non verbal.  She still has cues that Jake and I can pick up on, but no words.  We have been extremely fortunate in our situation.  I have the blessing of being a stay at home mom.  Jake is a completely involved and hands on father.  We have grandparents and aunts and uncles and friends and other family members that would go to any length to help us out.  People who would drop anything to be here in a time of need.  This is a HUGE sense of peace for us to know how loved we are.  Especially Liv.  If you are on social media, or watch the news, you may have recently seen this clip about a young boy with sever autism who was being abused by a therapist and the abuse was caught on a nanny-cam.  The article and news clip can be viewed HERE, if you have any interest in viewing this atrocity.  A situation like this is any parents worst nightmare.  I can not even imagine what his parents must have thought or felt.  It makes me nauseous and sad to even think about it.  We have been very lucky in that Livia's care has never been compromised.  Until recently.  I will not go into a lot of details, and by no means did anything like this video happen to her.  I don't feel the need to tell the entire world exactly what happened because we are moving on and the situation is being dealt with.  My point of this post is to shed a little light on how sever Livia's needs are and how it feels when trust is compromised.  It's also about forgiveness and moving forward.  I'll admit, forgiveness and moving forward isn't an easy thing to do when the inner lioness wants to come out and as Katy Perry would say "ROAR, ROAR, ROAAAAARRRRRR!" (If you don't know or understand that reference, click on her name!)  Moving on, when the situation occurred with Livia, it was one of those moments that I wanted to turn really ugly, chew someone up, and spit them out.  Imagine your whole body catching on fire, you're sure everyone can see your heart beating through your shirt, hands are shaking kind of madness.  That is what I experienced.  Her safety and well being was put in jeopardy.  It was a first, and hopefully a last.  Those feelings of madness I experienced was really hard for me.  I am a non confrontational person.  I avoid conflict and disagreement at all costs.  It makes me very uncomfortable and at times, I don't even know how to react.  In this case, though, I was forced to speak up for my child who can't speak for her self.  Luckily, it's being dealt with and I, as her mother, will not put her back in that place.  I'm saddened because due to this situation we are going to have to make a change in our routine.  A comfort and an activity, an outlet, that once was so routine will be no more.  But you know what, it's going to be ok and we are going to move forward and adjust.  It's our only option.  To dwell and continue to feel maddened by something is a waste of time.  I'm not saying that it should be ignored and swept under the rug, because we would NEVER let that happen.  But because it happened, it was dealt with, we move on.

As of lately, I'm recognizing and realizing how confusing Sanfilippo Syndrome is to the outside world.  It's our life and our everyday, so I think I just automatically assume that people would get it.  I believe it's especially hard to understand because Livia's appearance isn't that different from a typical kid.  Because she looks "normal" people expect that she can do what kids her age can do.  When we meet someone out in public and they acknowledge her and talk to her and I explain that she can't talk, it's confusing.  Why can't she talk?  Well, how much time do you have?   Just yesterday, I had Livia out in her wheelchair and we saw someone that has never seen her in her wheelchair.  This person asked me "why is she in that?"  Can't she walk?  I explained that Livia can walk, and we like to keep her walking, but there are some situations that she needs to be in this chair when her mobility is compromised or that the situation requires her to be more safe in the wheeelchair. "HUH"..... was their response.  I really don't mind when people ask me questions.  I'd much rather talk about Livia than not.  I want everyone to understand my sweet girl.  Livia takes a lot of "hands on."  She needs a lot of guidance.  Can you imagine walking up to a child and placing your hands on their shoulders or taking their hand and forcing them to walk somewhere?  No, you wouldn't do that.  However, Livia requires that.  If you just let her go, she'd run.  She would not know where she's going, which direction to turn.  She depends 100% on others for everything.  That's Sanfilippo in a nut shell.

I would not trade my Livia or Finley for anything.  I would spend the rest of my life caring for them if I could.  Somedays I'm tired, my body aches from carrying Liv, but I'm so happy they are mine.  I'd pick them every time, if given the choice.  Everyday I discover something new about my girls, life, and myself.  This gift, these realizations, have helped me in the process of forgiveness and moving forward.  Because really, it all boils down to plain and simple happiness and love.  If I wasted my time and energy at being mad and plotting defeat against something or someone else that may have wronged us, I'd miss out on discovering how precious and fragile moments with my family really are.  A thousand years wouldn't be long enough to be their mom, so you better bet that every second I get with them are going to be rich.  I don't have time for anything less.