Thursday, February 21, 2013

Digression Progression

This isn't going to get any easier.......

Never in a million years did I think I would be a Marathon runner.  A multiple 26.2er, at that.  This past weekend, I was privileged to be in Arizona to run my third marathon.  The IMS marathon, to be exact.  My running partner is a snow-bird, so I pretty much invited myself to stay with he and his wife.  I have a secret desire to run a marathon in all 50 states.  It was a beautiful experience that I am so grateful for.  The marathon before this one, I started to cramp really bad around mile 23.  It was so bad that I had no control over my foot.  I worked it out, but it was slow to the end.  This past race, I started to play mind games with myself, expecting the cramp to happen again.  Many times I had to adjust my stride because I could feel the beginning of the cramp, or so I thought.  I relaxed my body and made it through, cramp free.  I felt great all day.  That was an accomplishment.  Training this time of year is a challenge.  To finish this race feeling so good is a confidence booster.  I'm ready for the next one.

Tuesday was a Genetics trip to Lurie's Children Hospital in Chicago.  It was my first visit to the new facility.  Jake took Livia to her last appointment, so she had been there already.  The place is great.  It's new, clean, kid-friendly.  However, it's a genetics appointment.  We see the genetic counselor (Katherine) first.  She asks general questions seeking information on how Livia is doing.  Do we notice changes?  What has changed?  How does she communicate?  I answered the questions with ease.  Keeping it light-hearted.  Katherine even asked about Finley.  I was able to share how proud I was of Finley developing into a special needs advocate.  Katherine left the room and I opened a snack for Livia, instantly remembering one of the biggest changes, but forgot to mention.  When Katherine returned, I explained that we are now having to feed Livia everything.  She hasn't been able to use a utensil for a long time, but finger foods were ok.  She could feed herself.  Since Thanksgiving, Livia has been manipulating the food with her fingers so much that she will drop it before she gets it to her mouth.  When she does get the food to her mouth, she doesn't push it in, again dropping the food.  My dogs were happy getting all the food, but this mommy was not.  Katherine left again, but shortly returning with Dr. Burton.  It's always so nice to see her.  She's professional, yet personal.  She always comments on how pretty Livia is and how great her hair is.  Makes me happy.  Dr. Burton went over a few things, noting the feeding changes.  It was a short list to go over, and a short meeting.  She ended with; "I'm so sorry, but Livia is definitely progressing in the disorder."  It hit me like a ton of bricks.  I'm not in denial about things, but I do think I live most days in a form of denial for survival.  As soon as she said this, I started to cry.  It was uncontrollable,  the kind where you wish you were alone so that you could just get it out.  The lump in my throat was extra big.  Katherine pushed over a box of Kleenex.  I could feel the mood change, and compassion was setting in.  My response was like this, "It's so hard because she is so easy to love.  She's a great kid, and I want to take care of her everyday of my life."

Never in a million years did I think I would have a child with special needs, and a terminal disorder on top of that.  You can never train for something like this.  Unlike running, endurance is not always there.  Endurance (also called Sufferance, Stamina, Resilience) is the ability of an organism to exert itself and remain active for a long period of time, as well as its ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue.  The ability to resist, withstand, recover from, and have immunity to trauma, wounds, or fatigue.  Will I ever be able to recover or resist from this traumatic wound of heart ache?  This fatigue of worry?  An immunity from the inevitable?

I'm thankful for my everyday endurance of a love so strong that helps to swallow this ever increasing bitch of a pill.  I'm thankful to be at a certain peace with, to not feel like I'm grabbing at a dangling rope in front of my face, for a cure.  My hope is there, but it's different.  I'm more concerned with salvation and a complete healing for Livia in heaven.  I'm concerned and focused on getting myself and my family there, too. (Forgive me for saying bitch!)  My running is my therapy.  When my mind starts playing tricks on me around mile 23, I find a focus point, usually thinking about Livia, Finley, Jayden, Brooklyn, and all our other MPS kids, and I go.  Just like after hearing Dr. Burton's words.  My mind goes places that no parent's mind should go.  I regain my focus, and I go.  I focus on today and breath her in just a little more.

Wednesday, February 6, 2013

She's Golden!

The memory of that very first moment I laid eyes on my Livia Grace is still so vivid.  I can close my eyes and be back in that OR, anxiously awaiting that first cry.  The moment is still slow motion in my mind.  Jake is by my side, nervously wanting to just jump over that curtain to watch her arrival.  Right before I saw her, I got extremely nauseous.  My very good friend, Greg, was the CRNA for her delivery.  I hand picked him, of course.  A perk of being a surgical tech.  He took away my nausea with an alcohol wipe.  I'll never forget taking a deep breath of that and instantly feeling better.  He whispered to me that it would only be a few more minutes.  Thank you Greg, for being in these memories!  They announced that she was here.  No cry.  Then, in a beautiful moment, they lifted her over that blue sheet and there she was.  Feet crossed, hands under her chin, red full lips, and a head full of dark dark hair.  She was perfect.  It wasn't until she was placed in the warmer that I heard her cry.  I love this memory.  I pray that it will remain this vivid until my last day.

Today is Livia's Golden birthday.  6 years old on the 6th of February.  I CAN NOT believe she is 6.  Time really does fly by when you're having fun.  Liv's birthday is always bittersweet.  It's a day to celebrate her life.  She's ours, she's here.  However, it's also a reminder that one more year has passed, and when she's only got so few here on earth, well, it's a hard piece of birthday cake to swallow.  Jake stayed home this morning to get Livia out of bed and spend some time with her.  Before she was out of bed, we had some time together.  I had a hard day yesterday.  Reflecting on that reality of one more year passed.  Jake is having a hard day today.  He said, we are robbed of the birthday celebration for Livia.  Of course it's a day to celebrate, but it's a time we don't ever want to come around.  365 days goes by way too fast.  I love how Jake and I can balance each other out.  He lifts me up, and in turn I try to lift him up when he is down.  We've become really really good at just looking at this day.  Living in the present is our day to day motto.  If we don't, it gets ugly.  Tomorrow is never promised, so today we will celebrate that we get to celebrate another year with Liv.  

 My Goldie Locks, Ray of Sunshine girl.  Happy Golden birthday to you.  Your beauty and love is the greatest gift I've ever been given.  To know that God trusted me enough to take care of you is something I don't take lightly.  Every day that we get to keep you in our presence is a day to celebrate.  Your life is a celebration.  This year has been a great year.  Thank you for being so loving and sweet.  Thank you for making me a better person.  May year 6 be peaceful and every single 365th day be a celebration of you and our family.
First tooth lost!

You are a warm summer day!

braids, pj's, and smiles.  So you!

Sister dress-up

Snuggles w mommy!

2/6/13 proud papa and bday girl!

You make winter look good, sweet girl!