Living room life

My dear friends, I pray you never stop asking............

Early on in Livia's diagnosis, Jake and I decided that we would try our best not to let (what the textbooks said) Livia's limitations would be, hold us back from what we wanted to do as a family.  We were and are determined to keep life as normal as possible; for our girls, as well as us.  We decided that we want our kids to experience as much as we can provide.  Doesn't every parent?  Especially for Livia, who can't decide for herself; we want to show her as much of the world as possible.  We want her to experience; just as it is our desire to LIV a purposeful and meaningful life.  Just like the song (which is my anthem) "I lived" by OneRepublic says "I owned every second that this world could give.  I saw so many places, the things that I did.  With every broken bone, I swear I lived."

This summer has been full of "firsts."  At the end of the school year, Livia had a swallow study done.  I was sure that we would get some results back that showed some small changes.  That day, I was not prepared for a complete change for our girl.  Like I said, I was prepared to maybe start thickening her water, but instead, as I watched during the procedure, my girl silently aspirate on everything except pudding like texture.  It was a literal punch in the gut after a 30 minute procedure and being sent away with a piece of paper and a kleenex.  I can remember wanting to ask the nice ladies in the room with Liv and I so many questions, but I could only get out 2 questions.  I was biting my cheek so hard to help keep from letting the tears fall.  Thankfully, we saw this change coming a year ago and had her gtube placed.  Today, Livia is getting 100% of her hydration as well as 50-60% of her nutrition through that little tube in her tummy.  It's been an easy transition, but not a welcome one.  We feed her thick pureed food as often as possible to keep her brain firing.  We want those neurons to synapse with other muscles in her body to make her swallow.  This is real.

Another first, our home feels and looks like medical supply grand central.

                 

 
       

                

  

In a matter of a week, Livia received a wheelchair, feeding/activity chair, and a bath chair.  All of which I'm thankful for because it helps her to be more comfortable and safe.  She needs it all.  However, before having all of this stuff in our home, I think I pushed her disability to the side.  I never viewed Livia as disabled.  This equipment; the tubes, the wheels, the supports, the food in a bag, the mesh, and the syringes; it's a visual reminder of how medically fragile she is.  It's the first time in her life that I've felt weighed down with the sight of "stuff."  Everyday, with every corner I turn in my house; I see something and it reminds me.

This summer has felt like a summer of "no's."  It's the first summer that we've been divided a lot.  I'll stay back with Liv, and Jake will take Finley somewhere, or vise versa.  Or, we'll go somewhere and someone has to come back early with Livia.  We have to keep her on a strict medication routine.  Especially at night, those meds, they make her sleepy.  Now, if only they could help her stay asleep!  There have been a lot of opportunities to do fun things.  We have taken advantage of some fun, but it's the first time that I've felt some jealousy with the things we can't do.  Jealousy is a mean and singular emotion that is just ugly.  This jealousy created a pity party........party of one.  I have never in my life looked at our situation and wished things were different.  Expcept for the obvious, in which my daughter doesn't have a terminal diagnosis.  But, I've been jealous of some things my friends got to do, that we just couldn't.  This summer has felt like we've been living a living room life.  Liv is not walking well.  She's most comfortable on the couch.  She tires out and lays down, and most often can not lift herself back up.  We physically make her stand.  She'll hold on to the legs of our TV and stand.  Her legs will start to shake, start to turn blue, and when she's had enough, she will cry out.  She'll make her way back to the couch.  This has been the hardest transition of all to watch.

Liv will still get a burst of energy, or have a good walking day.  She still does walk, but we must be with her.  This "living room life," it's felt isolated and sad.  It's caused me to feel guilty, jealous, and tired.  But, it's also where I know I must be.

I've learned a long time ago to let go of my expectations.  My plans, my dreams; it's not about me.  It's not about getting or doing what I want.  It's about succumbing to a bigger picture and a bigger plan.  It's about realizing that this living room life is right where I need to be at this point in my life.  And honestly, I'm happiest on that red couch where I can hold and smell her in.  This living room life, it's where life happens.  It's where good friends gather to laugh, to cry, to pray, to tell really great stories, and to do life with us when we can't always go out to do life with them.  It's where my purpose lies.  Livia needs us the most.  It's a balance that I wish I didn't have to take on, especially for Finley.

 But, I know that someday she will understand.  This, unfortunately small phase in our life, is what is helping to mold her and the rest of us into compassionate and loving people.  One day, when the living room life is a distant memory; and oh how my heart aches for that to be years....many years down the road.  This living room life will be the foundation of our future.  It will spark us to do, to LIV, to be with those that we love the most.  Those jealous feelings, I'm sure they will show up here and there, and my dear friends.......I pray you never stop asking.  I hope you understand.  This living room life, it's a unique and heartbreaking experience.  It's where I've learned that not getting what I want; it's where I see God's greatest blessings.

Dig Deep

I find myself using a phrase quite often during my body pump classes.  I will warn my class of a difficult set or encourage them during the end of a particularly hard track.  I will say something along the lines of "let's finish this chest track together, dig deep, and finish strong!" Or maybe something like "DIG DEEP! Last combo!"  It's a phrase that I coach with, a lot.  I find it's fitting.  Sometimes lifting heavy or running farther requires a little digging.  That digging deeper is when changes happen, goals can be met, and a sense of accomplishment is gained.  It's not easy to "dig deep," but actually digging deeper is when the payoff occurs.  It's taking a step outside your comfort zone and doing something uncomfortable or something you thought unreachable when the impossible becomes possible.

 

I must dig deep, everyday.

 

Last week, I started to prepare for a weekend of company.  Like any good hostess would, I thought I should actually strip all the beds and put fresh clean sheets on for my guests.  I'm going to get a little real here and tell you that I don't wash sheets every week.  I do it on purpose. Especially Livia's.  You probably notice that when you walk into someone else's bedroom you can smell them.  Both of my girls have a bedroom smell.  They are different, and I love them both.  After I sent both the girls off to school, I started the task of stripping all the beds.  I started in Liv's room and it hit me.  Her empty bed, a quiet house, her smell, and the thought of her not being here came over me out of no where.  I draped myself over her bed with tears flowing from my face.  I pulled her sheets off her bed, fell to the floor, and buried my face deep.  I tried to INHALE as hard as I could.  I moved her sheets through my hands trying to find places that she must have settled into.  I panicked.  I felt anxious.  It was an absolutely devastating moment to realize that there will be a last time that I will have to remove her sheets and her smell........how can I let go of her smell.  How can I let go of her?

 

I will have to dig deep.

 

It doesn't happen as often as it once did, or maybe I'm just very used to hearing "I don't know how you do it."  When I sit back and really, REALLY, think about what we are facing, I understand why people ask me this.  When I see another child struggle, or hear of another family burying their child, or watching families that have lost a child(ren) and navigate life without them; there are times when I wonder how they do it.  How do they dig deep and keep going?  I've learned that I can't really ask how other's do it.  I have to rely on what has worked for me and given me a lot of peace in the process.  I've had to dig deep in my faith.  Everyday.....I must dig deep.

 

I am not proclaiming that I have all of this figured out.  I literally LIV day to day.  Each day presents different emotions which can cause easier or harder days.  Days in which I have to dig deep to come out on top.  What I will proclaim is that because of the work I've put into my faith, and my relationship with God, I've gained peace that really does surpass all understanding.  I love a lot, I'm very patient, and relationships mean a lot to me.  I can't understand or explain it all myself.  What I do know is that this digging deeper during the hard, scary, and almost impossible moments is what is allowing our life to be LIVed in an extremely full and beautiful way.

 

I'm extremely thankful that my "dig deep" moments are due to my emotions, my navigation through the hard.  What is not hard is actually taking care of my girl.  Liv's needs are 100% dependent on Jake and I.  Everything.  Walking is now a great struggle for her.  She's falling a lot and it's hard to look at her bruised knees and elbows and not HATE this horribly ugly MPS.  She has less and less smiles, and she's content sitting or laying on the couch now a days.  She can't move herself out of an uncomfortable sleeping position.  She can only cry out.  Digression is a bitch, and it's literally taking her more and more.  That is what takes digging deeper.  She's facing a swallow study and those results could mean another change in her care.  At this point, I just want to get the results and do what we need to do in order to keep her safe and nourished.  I can understand that care taking can take a toll and be stressful at times, but to me, it's not a burden.  We have a responsibility to take care of the one's we love.  Life is extremely precious and fragile and by allowing stress or negativity to over come care taking is robbing people of the opportunity to dig deep and learn from that experience.  I pray that if you are reading this and you have a child with great needs, little needs, are caretaking for someone, or you are going through something tough your self, that you can dig deep within your heart and cherish the time you have with the one's you love the most.  Health especially can change in the blink of an eye.  Life can change in the blink of an eye.  I pray that you can find peace in order to INHALE what this one precious life has to offer.  

 

 

A Letter

Dear Sanfilippo Syndrome,

I’m taking the time to write this letter to you, because frankly, it’s time that I let you know how I really feel.

It’s been 5 years, 8 months and 11 days since we’ve found out about you.  That’s 2080 days we’ve known your name.  I’ve been quite content not to address you, but now it’s my turn to face you.

I’d like to know how it feels to know that you have stolen many of our dreams.  How does it feel to

know that you have slowly over time, robbed our daughter of every chance at a normal childhood.  How does it feel to know that you are a murderer?  Are you proud of the many tears that you have caused us to shed?  Is your plan to darken all of our days?  Do you laugh at the thought of the fear that you bring?  Do you exist to defeat?

When we were first told about you, you answered these questions for me.  In fact, it was clearly stated in that tri-fold brochure that we were handed just how ugly you were going to be.  That your life altering, quiet presence would tip-toe in our daughter’s body and ever so slowly start to show your ugly face.  In these 2080 days, you’ve taken her voice; that sweet voice that once said “I love you” to her mom and dad.  That voice that was able to call her baby sister by name.  “Ninley” she called her sister, Finley.  That voice that

loved to sing “Jesus loves me,” and “happy birthday.”  In 2080 days, your presence in her body has caused her to seize, caused her to have a feeding tube, and you are slowly taking her ability to walk and run.  I had dreams for our Livia Grace.  I dreamed of one day watching her walk down the aisle in my wedding gown.  Now, because of you, I have to think about cutting the threads of my beloved gown to make her funeral dress.

I have every reason to hate you.  To scream how horrible and unfair you are.  How I wish I never knew you.  It would be so easy for you to consume every ounce of every minute of every last breath I have.  I’m sure your plan was to defeat us.  I could use everything I had to curse your name.  To spend the rest of my life bitter, angry, and consumed with the thought of you.

But I won’t.

I don’t have time for you.

That evil, ugly plan that was laid out before us in that tri-fold; we aren’t allowing it to prevail over our family.

You see, your plan has back-fired.  Your presence, although un-welcome, has changed everything.  You’ve changed our hearts, our eyes, our priorities, and most of all our village of support.  Not only do we love more fiercely, appreciate more greatly, but we know the importance of taking care of one another.  You’ve brought people into our life that has decided to walk alongside us through this
journey.  A community of people that are inspired by an 8 year old girl; a child who has brought even the strongest men to drop to their knees and embrace her.

Sanfillipo Syndrome, unfortunately, you will always be a part of our world.  You will be included in our vocabulary, but you will not be included in how we love, how we LIV, and how we cherish every day.  You see, good really does prevail over evil.  Every part of you is evil, but every part of our daughter’s life is good.  Her inability to verbally speak into our hearts trumps the way her eyes look into our souls.  Her complete dependence on us as her parents to keep her fed, keep her clean, keep her safe has given us a new appreciation on how lucky we are to simply wash our own hands.  The ugliness you bring in the night when she fights to sleep only deepens our gratitude to wake with the opportunity of a new day.  The smiles and laughter that you are stealing make us celebrate as if we’ve won the lottery when a smile or laugh shows up.  Sanfilippo, you are life stealing, but you’ve given us a new life.  One in which we will never give up the hope that a miracle will save our baby girl, but one in which we LIV for the promise of heaven.

Eight

I vividly remember many details of this week 8 years ago. I loved being pregnant. I felt good through the entire 9 months. I loved every pregnancy moment with both of my girls. I was on my feet a lot when I was pregnant with Liv. I was a surgical tech at the time. (Loved that job!) Ironically, I was at work getting ready to scrub into a case. I received a phone call from the main OR (that's the ironic part). They called to tell me they had a time slot open on the 6th if I wanted to come in a day early for my c-section. I didn't even think twice and said, YES, of course! I immediately called Jake and shared the good news with him. He shared in my excitement that we were going to meet our baby girl a day earlier than expected.

The beauty of working in the OR and needing a c-section is that I was able to hand pick my OR staff for Livia's birthday. The surgeon, scrub-tech, CRNA, anesthesiologist, they were all my friends. People I worked with. People I trusted with my vulnerable body, and of course trusted to safely remove my first born. I remember just about every single day of being on the other side of the blue curtain. I of course, remember the nerves. However, the environment that was created that day was one of excitement and celebration. It was personal for everyone in that room, and they made me feel that way. They shared in my nerves, excitement, and anticipation for our girl. Of course, I remember Jake. When he was escorted into the OR, my friend Greg who was the CRNA, brought Jake to my

CRNA extraordinaire, Greg

head. He told Jake...."Just don't touch anything blue." I remember Jake's eyes over his mask. He was wide eyed, and focused on me. His hand on my shoulder and he whispered in my ear "We get to meet our baby girl. I love you so much." When the meds hit my system, I was overwhelmed with nausea. Greg, being the amazing guy he is, came in quickly to my rescue and simply put an alcohol wipe under my nose and told me to breath deep. I did, and it was instant relief. Greg, I still love you so much for that moment. I thought, how simple, how caring, and how out of the way he went to make me feel better. It wasn't long at all. A few tugs, a few familiar smells, and sounds. I knew exactly what they were doing on the other side of the curtain. I was so ready. I wanted her here. Jake was told to stand up to see her coming out. Greg had to kindly remind him not to jump into the sterile field. He was ready to pull Liv out himself. I heard the suction, I heard the cry. I heard my friend Renee say "she had so much dark hair!" Then the curtain dropped. This next moment is one that I pray I remember until my last. The very first moment I laid my eyes on my girl. She was so perfect. Her hands and feet were curled so tightly into her body. As if she were holding herself. Her lips were so full and so dark pink. Her hair was dark. Everyone celebrated her arrival in tears and smiles. I had no idea how in that room that day, not only was my daughter being born, but my heart was being born. My heart wasn't just being delivered, it was being transformed. Like a re birth of my heart through the birth of my daughter.

It's no secret that Livia's birthday has an undertone of sadness for me. How can it not? It's a "mask" moment for me. I go on with planning a party, inviting, cooking, baking, present buying, all while wearing a mask. Her birthday is a reminder that she has a death sentence, and time is not on her side. I do all these typical birthday things while wearing my mask. Shielding the feelings of fear, anger, sadness, and all the emotions that should NEVER be tied to a birthday. It's unfair, but I'll be damned if I'm going to let it steal my joy. You see, Sanfilippo Syndrome and I have it out.....a lot. And I always win. I'm no rookie at this birthday thing, so I've had time to prepare this year. In years past, I'd be in a brawl with SS and my thoughts would be...she's going to be 5, and then 6, and then 7. What's going to happen then??? This year, I'm embracing that she's 8 years old. She gets to be an 8 year old. I have an 8 year old!!!! And that's it. I want to celebrate her life and that she's here. I get to wake up to her tomorrow, hold her, sing happy birthday to her, and celebrate with those that love her the most in this life. She is more beautiful today than I could have ever hoped for. She is the most calm, laid back, pure little person that I've ever known. She has taught me more of how I should be as a human than any other person. How powerful is that, when she has no words to teach such things.

As far as my heart, I've learned that my heart is on loan to me. That's one big fat pill to swallow, but because of the opportunity that Jake and I have been given since that blue curtain has dropped has been a true experience of re birth. What we have taken so far is that if we are able to nurture that heart, fill it with as much love as humanly possible, share that heart with others, it will truly be ours forever. 

Happy 8th Birthday, my beautiful and perfect Livia Grace. May this 8th year of your life be the best one yet. I'm so thankful for you, every single day. You've grown me into my best. xoxo

Equipped

Since July 2014, this beauty has struggled with sleep. Slowly over time, her nights have gotten worse. Scary. We've tried strict bed time routines, melatonin, co-sleeping, weighted blankets, so on and so on. Nothing was helping.  We were helpless. We were sleep deprived.  She was a zombie, and we were going through the motions. We finally decided on doing another sleep study. I was convinced

she was having night time seizures. Her little body would thrash in her bed causing black eyes and scratches on her face. Even holding her through it, her body convulsed. She screamed and moaned throughout every. single. night.  Hearing these sounds come from her non verbal, barely laughing anymore self, was heart breaking. The sleep study came and went.  The results included sleep apnea, periodic limb movement syndrome, night terror syndrome, and possible frontal lobe epilepsy. 3 new medications introduced and life has changed dramatically. She's sleeping. Barely crying out. This change happened literally, overnight.
                                                                                                                                                                                                                             

                                    Those sleepless nights became a battle ground for me.

Fighting with myself to keep perspective.The dark has teeth, anyway. But then combine no sleep, fear for what was happening to my love, horrible thoughts that no parent should have, anger for not getting sleep, frustration, etc. etc. It was affecting every aspect of our life. It's a daily discipline to control my thoughts. I strive to keep it positive and focused. Control. I've given up on the idea of control. I'm certainly not in ultimate control. I often pray that God would guide my thoughts to His. I love the verse in Philippians. 4:8 "And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise." How beautiful and true is that? And, in a way, offers a little control back in our life. When I fix my mind on this, and pray this way, I can feel my thoughts drift away from the horrible scary, towards that which is most lovely. I'm not willing to waste my days on misery, negative contemplation, or fear. It's a daily battle; especially when Sanfilippo

shows it's life stealing, horrid, evil, ugly face.  I refuse to dwindle or let that evil win in this brief and precious time we have together. I choose most often, that which is pure and lovely.  I get to call her mine.  Livia and Finley are the pure lights in my life. Their little lives have taught me more than I have ever learned. Even in the midst of this terminal diagnosis with Livia, life has never felt more meaningful and fulfilling. I feel equipped with what I will need to survive this life. It's freeing and humbling. I still have a lot to learn, but embracing the pain and loving through it is how I know how to survive.

"God will never give you more than you can handle." I can't tell you how many times I've heard this. People say this with the best intentions, but I can't stand it. I respect it, but completely disagree with it. I don't believe this because if it were true, then no one would have trials. No one would grow. "Easy" has never been promised. What I believe is that we are equipped with everything we need to survive. To me, L O V E is the resounding theme. I've never felt more fully alive and in love than I do today. This journey that we are on has made me feel human.  I know that sounds funny, but before now, I felt as if I were skating through life, unscathed. Now, through trial and pain, moments are more brilliant. Time is more precious. Lives matter more. I'm not comparing who I am but rather embracing what I believe in and loving through it. Proverbs 24:32 "I applied my heart (my love) to what I observed and learned a lesson from what I saw." This lesson, this trial has fully equipped me with love, and that's all I need.

                           

Time

*2015*

A new year.

Fresh start, new resolutions, goals, organization, a new 12 month slapped on the wall (do people still do that?) Happy new year, and a Kumbya circle of "Auld Lang Syne."

I did my best to avoid all of it, until today.

I was quite content in 2014.  Jake and I celebrated 10 years.  The girls are at great ages.  I have the best of friends I've ever had my entire life.  Family is healthy (for the most part).  But there is no STOP button that I've found yet.  I could have planted myself in 2014 and been fine to stay right there.

A new year means another year gone.  That scares me, and feels completely unfair and out of control.  A new year means another birthday.  8 years old.  What will it bring?  I know, I know.....no one knows what the future holds.  I could be dead in 5 minutes.  But, our world, our every day passed is a clash between acute awareness of blessings and another day closer to Sanfilippo taking over our daughter.  It's a daily battle to get my head above the water to get a breath.  But I always do.  It's a daily battle to not look too far ahead and get consumed with.....what then?  But I do.  It's taken a lot of growth and a lot of soul searching to know that with God, anything....especially love can make even the hardest circumstances doable.  It's taken time.  It's taken years.

So, as I'm still not in the mood for that Kumbya circle, what I can appreciate is something I've learned from these years.  Through each hurdle or circumstance, I must allow the time that I need  through each event.  This journey has opened my eyes to many many things.  An important one that I realized in 2014 is rediscovering me.  What I'm capable of, what's important to me, and the most important is to stop comparing my life to anyone else's.  It's been so freeing.  Of course, I refused to make a new year's resolution, and honestly I'm not much into resolutions.  I feel like we should all strive to be our best throughout the 365, and not just on the 364th feel anew and only make it to day 10.  But that's my little ole opinion.  So this being day 6, it's definitely not a new year's resolution, but a renewed theme that I feel is our life.  It is this......To love fiercely and intently every single day.  To take care of one another as if our own lives depended on it.  To keep our eyes fixed on the eternal promise, pray, slow down and listen, and keep our Heavenly Father involved in all of it.

Happy New Year, my friends.  My heart is still burdened with the idea of another year gone, but I'm extremely grateful and hopeful for 2015.  I respect and look forward to the wisdom that comes along with "time." 

until next time......

love,

      Kelly

     

#tbt #fbf

#tbt Throw back Thursday

#fbf Flash back Friday

I don't know about you, but I love looking at "old" pictures.  I have a great stash of photo's that came from my grandma and grandpa Fish's house.  When my grandma passed away, and her house was being cleaned out, I grabbed as many as I was allowed.

Gma Fish, baby Kelly, Dad, Great Gma

Baby Audra, Kelly, Gpa Fish

The pictures are mostly of my dad.  Ranging from new born pics all the way through to when I was born.  There are a few of some other family members, and of course, my grandma and grandpa.

My grandma Freeman (my mom's mom) is an uninhibited picture taker.  Her home is full of pictures displayed as well as albums filled.  One of my favorite things to do when I'm at her house is to look through those albums.  Wherever she is, her camera is with her.  I think I get my impulsive urge to photo take from her.

Baby Kelly, Papa & Gma Freeman

George, Jake, Tim, Heidi, Patrick, Cindy

Pictures mean a lot to me.  I take numerous pictures every day.  Whether on my phone or on my rebel t2i.  I've become pretty obsessed with photography and am currently researching new lenses.  I'm no professional, but I love it.  I'm desperate to capture everything and to learn how to take the best pictures.

When it comes to #tbt and #fbf, I want to hide.  If you're not familiar with this social media trend, it's pretty easy to figure out.  People post a picture from the past and tag it #tbt or #fbf, depending on the day.  Now, I like to look at other people's posts, but to participate myself is extremely hard.

There is something about looking at pictures of loved ones that have passed.  For me, a sense of warmth mixed with longing mixed with man do I love these people comes over me.  I also start "wishing."  Wishing I would have said this or that.  Wishing I would have asked certain questions.  Longing for just one more moment with that person.

Gpa Hubert and Jake

 Happiness for the memories created and the life that once was.  Reminiscing is what these pictures present and what #tbt and #fbf represent.  However, for me, with Liv, the act of looking backwards is just a firm reminder of what has been lost, the changes that have occurred within her, and what her future holds.  It's so bittersweet to look back.  I avoid it at all costs, however, it's all around me.  And ultimately, it's ok.

My Fridge

    

Great Great Grandma and baby Kelly

 I find myself searching for her smile.  Her laugh.  They seem to be few and far between these days.  You know that book "Let me hold you longer" by Karen Kingsbury?  I love it so much, but "will I recognize your lasts?"  is a quote from that book that rings in my mind on a daily basis.  Will this day be the last smile or laugh?  Frankly, it's horrible.  But on the flip side, getting a smile or a laugh is like opening a Christmas present because I am so in tune to holding on to her before the cloud of MPS gets too dark.

So, I take a million and one pics, but rarely do I look back.  Video's, heck no.  Just today I had my camera out and have this 15 second video that I have locked on my memory card.  It's of Finley when she was 2 years old.  She's dressed in a pirate's costume and I have her say "Scurvy buccaneer" and "Shiver me timbers."  I showed it to her.  We sat and watched that video together for 5 minutes.  Playing it over and over again.  We laughed so hard and she asked me so many questions about it.  It was such a great 5 minutes.  I remember, as a kid, loving to watch home videos (on BETA, yes BETA video).  We have video of Liv before diagnosis, and I've never watched them.  But, I'm glad we have them.  Just like the million and one pictures I've taken and will take.  They are a security blanket for me.  Because one day, it's all I'll have of her.  These pictures will help me remember every.  single.  thing.

A #fbf of my baby girls