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.

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

Make~A~Wish

Snuggles w mommy!

2/6/13 proud papa and bday girl!

You make winter look good, sweet girl!

Proud Mommy

Wednesday evenings I teach Body Pump.  Some evenings Jake is home in time to take the girls so that I don't have to take them with me.  My class is from 5:30pm-6:30pm, so I have to take the girls dinner if they go with me.  Last night, I took them with me.  Pretty usual. 

Livia is always excited to go anywhere.  I firmly believe she knows what we are doing.  She gets so happy when we pull up to church, the Y, school, any place that is fun to her.  Last night was no exception.  She bolted right into the drop-in (or now called stay-n-play).  Finley took her coat off and hung it up and went to playing.  I was signing the girls in when time just stood still as I heard "SHE's STUPID."  I just knew, that someone called Livia stupid.  Before I could say anything or really find out what happened, Finley stood up with tears in her eyes and said "My sister IS NOT STUPID, and you don't call anyone stupid."  She then pointed at this girl and ratted her out like I didn't hear what had been said.  I looked at this girl(who looked to be 7) and said "Calling someone stupid is completely disrespectful and you don't call anyone that."  My heart rate had spiked, my blood was boiling, and I wanted to cry.  I had to just walk out.  The drop in staff was placing the girl in time-out and told me they would take care of the situation.  Liv was laughing and Finley had moved on. 

My mind was racing and I was really upset.  I kept telling myself, she's a kid, she's a kid, she's a kid, she doesn't know any better.  But that's not acceptable to me.  I was able to teach my class, with a few mistakes in the warm-up.  It ended up being a pretty intense class because I was worked up from the start.  When I picked the girls up, the staff had explained to me that this little girl said she saw Livia climb on a table and she said she(Liv) was stupid for that.  The staff didn't think this girl knew of Livia's difference.  Back to calming myself down.  She's just a kid is no excuse.  My 3 year old knew better, which by the way, I am so PROUD of Finley Faith.  So, this girl didn't know Liv had special needs.  Then is it bullying?  Why would she say "she's stupid?"  I then just felt bad for this girl because she probably has been told she's stupid for doing something harmless, like climbing on a table.  Stupid?  It may be dangerous, or something you shouldn't do, but she's stupid?  That's not how I'd describe someone climbing on a table.  My point is that I feel like tolerance and acceptance are so important.  Teaching our youth that everyone is different, and everyone deserves to be respected and loved.  Not everyone has to be your BFF.  I'm not saying you even have to like everyone, but it's not ok to belittle, degrade, or make fun of anyone.  If you don't have something nice to say, don't say anything. 

I'm proud that my lil 3 year old will stand up for her sister that can't stand up for herself.  After talking with the drop in staff a little further, I explained to them that I have never seen Finely react in this way.  I didn't even think she knew what "stupid" was.  They then told me that Finley has stood up for Livia many times.  Proud momma moment, indeed.  I believe that even if Liv was a typical child, Jake and I would have instilled the value of loving everyone and accepting differences.  Finley has been forced to learn this value even more so.  We push the fact that because Livia is different, and needs more time and patience, we still love her and take care of her.  We include Finley in some of Livia's care-taking, when Finley wants to be involved.  Finley has very much embraced her sister and even though this is all Finley has known, she knows more than what Jake and I realize.  I dread the day when I'm going to have to tell Finley more, but I'm so thankful for the young, strong lady Finley is developing into.  She will be an advocate. 

Livia is teaching all of us to love more.  I'm so thankful for that.  I'm so proud of my girls and what they are teaching all of us. 

Today I pray that our youth will be more tolerant and educated about how different we all are.  It's so simple and something I'm sure we know, but how do we really put it into practice?            

I feel like painting my fingernails {red}

I know it sounds silly, but I love having my nails painted.  It's very rare that I actually do.  Taking the time to do my own nails is just that....taking time.  I've tried to wait until night to give myself a manicure, but it's always an epic fail.  Waking up in the morning, hoping for that perfection, only to have that "fell asleep with wet nails" look.  I love the way fresh, clean, painted nails look.  My grandma Fish always, I mean ALWAYS, had nicely painted nails.  I can remember, as a kid, painting her nails, seeing all her nail polish, and noticing her hands.  When she was in the nursing home, she still had nice nails.  At her funeral, her nails were the most beautiful color red.  Her favorite.  I miss her terribly.  She spoiled us.  Christmas was no exception.  For many years, she always bought me a glass doll as a gift.  Every year.  This was just one thing, but I could always expect a glass doll.  Such good memories.  I will be painting my nails {RED} for Christmas, in memory of Gma Fish!

Christmas 1983, at Gma&Gpa Fish's. Notice her{red}nails!

My heart has been heavy lately, as I know many Americans had emotions over the Newton, CT. school shooting.  Tragic.  I can't help but get teary whenever there is news coverage. Or, the pictures of weeping parents and the deceased children and educators always tear that wound back open.  I've been absent from my blog, and been asking myself why.  I turn to this blog when something big needs mentioned, I need to vent, or maybe when I need to grieve.  It's very sad to think that a child lost their life in the way it happened at Sandy Hook elementary.  I've really been thinking about the parents.  Their grief.  To lose a child so unexpectedly has got to be unimaginable.  Of course, losing a child, having to bury that child, makes me think about Liv and what I spoke about earlier regarding this blog.  2012, for me, has felt like the first year since Liv's diagnosis that I haven't felt like I've been in a state of grieving.  Liv has been doing really really well.  A few small mobility changes, but nothing we can't deal with.  We continue to see her decline with small everyday things like; walking, eating, taking stairs, feeding herself, speech.  However, these are things that we have come accustom to.  It's no longer a stress or a worry going out in public and not knowing where we are going to change her diaper.  It's no longer a stress that we have to feed her most everything.  We just do.  2012 has felt comfortable.  Liv's situation is always on my mind.  I can never dismiss that we will probably have a very short life with her.  Some days I feel like I can't breath, I watch her in slow motion at times, feeling that pierce in my heart and lump in my throat trying to imagine what it will be like not to have her physical being with me.  To smell her, hear her laugh, feel her little fingers hold mine, but then I snap out of it and remember that I get to soak all those little moments in that maybe healthy families don't recognize and savor all the time.  Even the hard days, I wouldn't trade one minute.  That's why my heart pours out to the parents in CT.  I pray with my whole heart that they made those memories, soaked in their children while they had them.  Even thinking that they may have doubted anything makes me cry as I type this.  The importance of every day, and just loving each other, is a gift I've been giving that I need to share with you.  Take it as my Christmas gift.  I'm sure each and every one of you have held your children and loved ones a little tighter since this tragedy.  Do it every day!  Just like we all say when something bad happens, "it really took this tragedy to"........you fill in the blank.  LIV LIFE, everyday as if a tragedy happened yesterday.

I want to wish all my friends and family a very Merry Christmas and a Happy New Year.  May 2013 be full of blessings and give you an opportunity to LIV everyday to it's fullest.  From our family to yours, we love you and may God's grace be upon you.  The Hubert's   

Make~A~Wish

On Saturday, November 17th, Livia Grace was granted her Make~A~Wish.  This process had been in the works for two years.  Not her specific wish, but the wish process.  In the beginning, we couldn't decide on "the wish."  Jake and I are her voice, so we wanted to make sure this was going to be something for her.  Our wonderful wish granters gave us suggestions and we pondered over the decision for a long time.  The positive in that, was that our wish granters, Angela and Ann, have been in our lives for a long time.  We thought about a trip, but the biggest hang up for me was that once a trip is over, it's over.  Yes, memories and pictures are made and they last a life time.  Jake and I decided that we could do a trip anytime.  We wanted something that was going to benefit Livia for a long time.  So, we decided on a play/safe/therapy room.  What does that exactly mean?  We wanted a space in our home that Livia could have to play, have some sensory therapy, and be completely safe, all at the same time.  We luckily have a spacious, 2 story home.  Stairs are becoming an issue for Liv, so we knew the room needed to be on the main level.  In the front of our house we have a dining room and an office.  We decided to turn the office into her wish room.  Once we confirmed this is what we wanted for Livia, construction started to take place.  

The staircase was open on both sides, so a wall was built and a dutch door was put in.  For those of you that don't know, a dutch door is a regular door that is split horizontally.  This offers an option to keep the bottom half shut while the top half is open.  We did this because we needed a place that Livia could play, and if I couldn't keep my eyes on her I knew she would be safe in that specific space.  Then came the list.  I was asked to make a wish list for the items that we would like seen in that room.  They told me "the sky's the limit."  Not that Livia would get everything on the list, but not to hold back when making it.  I put a lot of therapy equipment like a swing, trampoline, sensory light panels, therapy balls, body massager, etc.  I also asked for a special brand of books called "indestrutibles."  These books are tear-proof, chew-proof, rip-proof, washable, and non-toxic.  One of Livia's most favorite things to do is to look at books.  However, she tears them or chews on them in the process.  I thought these books would be perfect for her.  I wanted her to have an iPad.  There are so many educational aps as well as games and movies for when we travel.  My thought with an iPad might also facilitate communication.  I so badly want her to communicate with us.  Verbally, she can't anymore, but maybe by pointing.  The iPad was something I questioned asking for, but went for it anyway.  A few more things went on the list, but then it was time to submit it to the wish granters.  They then take the list back to the main chapter and were our advocates to try to get the items purchased or donated.  One of our wish granters knows an interior decorator, Mary Sweeney with Mary's by Design.  Mary generously donated her time and talent to come to my house to talk with me about color's Livia liked and what we envisioned for the room.  It was something I'd never done before.  Mary was so nice and easy to work with.  She then took over the decorating, organizing paint and carpet all while in the process of moving her store location.  Very generous.  Then more people came in to do work.  Doug Olson did most of the construction.  He is greatly involved with Habitat for Humanity.  Marv Riggins was another gentleman that did some of the handy work and repairs.  New windows with special tempered glass were donated by Window World of Rockford .  Blinds from Eddie Z's were installed by Accurate Blinds Installation.  Paint was done by Doug Hermanson with Hermanson Painting and Wallpaper.  In the middle of this, we were told by our wish granters that a local photographer heard our story and volunteered to take family pictures of us to put in Livia's new play room.  I was thrilled with this.  We were told that this photographer was the best in town and she and her son had won many photography awards.  We were given a few dates to choose from and told we needed to go to Kane photography.  We had the pleasure of working with Matt and Marie Kane.  They really went over and above what we expected with the pictures.  One of the ideas we had for one wall was to have some silly faces.  Livia loves expressions and people's faces.  This wall is probably my favorite part of the room.  Livia has been jumping on her trampoline, looking at the photos, and giggling!  This is just what I hoped for.

 We also have a friend, Lindsey Ellis, Expressions by Lindsey, who had taken some pictures for us.  She also generously donated some pictures.  These pictures, along with the Kane photos are like gold to me.  These will forever be precious memories that I can keep.  I can't thank you enough for this generous donation to Livia's wish.  You have blessed our family with a gift that really means something!

Finally, the date was set for an open house.  Our wish granters had asked us to stay out of the room until the project was complete.  That meant it was going to be a surprise for all of us.  We had heard that media was going to be involved, but we really didn't have to do a thing to prepare for the open house.  We had invited friends and family to join us in this celebration.  Little did I know how many people wanted to be a part of this "love fest" for Livia.  I termed the day like that because the process of Make~A~Wish was really all about loving Livia and giving her a gift. 

The moment had FINALLY arrived.  To my surprise all 3 news stations showed up right at the time of unveiling.  They went into Liv's room and captured our reaction as we walked in.  Livia was the first to enter, followed by Jake, Finley, and myself.  We were overwhelmed with emotion.  The room was gorgeous!  The first thing I noticed was how soft the carpet felt under my feet.  The room colors were perfect.  THERE'S A CHANDELIER!  And then I saw the pictures.  They couldn't have come out nicer!  All of them!  Livia received a trampoline, swing, sensory lights, books, shelving unit, sofa sleeper, body massager, flat screen tv, iPad, therapy balls, toy box, a make~a~wish Barbi, and really cool mirrors in the shape of stars.  I'm probably leaving something out, but it's more than what we could have ever expected!  Thank you, from the bottom of our hearts to everyone that was involved in Livia's wish.  Especially Ann and Angela, you two have made such a great impact on our lives.  Livia's situation is devastating.  You gave us something fun and exciting to experience with her.  We had something to look forward to, and now have something that is going to last a really long time.  This experience, and all the people that volunteered their time or products really humbled me.  Thank you for making this experience happen.  The room really is perfect and has blessed all of us.  Thank you!

Our beautiful friends, Angela and Ann

   

FAQ about Sanfilippo Syndrome, Livia, and the Hubert Family

Hello Blog Land.  I feel very out of touch with my blog, and have a HUGE desire to jump back into writing.  It's so therapeutic, and in a small way, I feel like I'm making a difference along with leaving a legacy for Livia.

I've always said that no one ever wants to be in the world of special needs.  However, being forced into an unknown community isn't always a bad thing.  Over the last few months (my absence from this blog), our world of special needs has been nothing short of wonderful.  Livia is doing great.  She's lost her first tooth, which was a HUGE surprise for me.  Champions Club at our church, Rockford First, opened.  This ministry is for special needs children.  If you have a moment, click on the link and check it out for your self.  School is going great for Liv.  Her teachers and aids are people who anyone would be blessed to know.  I love all the children in her class.  I'm excited to see their happy faces on the bus every morning.  I love how excited some of them get when my dogs sneak out of the house to walk Liv to the bus with me.  It's little moments like this that I wish everyone could experience.  Every morning, as the bus drives away, I wave good-bye, but with my hand in the "I love you" sign.  Some of the children on her bus flash it back to me now.  Bless their pea-pick'n hearts.  That's what I think to myself, usually with a big smile and maybe a few tears in my eyes. 

I've also met, via the web, another special needs family whom I think about almost daily.  I watch her pictures via Instagram, read her blog, and see her posts on Facebook.  We've never met personally, but sometimes you're just drawn to people's spirits.  We do have a connection, and it's a pretty unique story.  There is another MPS family that lives in Bloomington, Il.  Not far from me, or far from where I grew up.  Their family hosts an annual MPS family gathering at a zoo in Bloomington.  The Barnett family is a beautiful example of how I want to walk this journey with Livia.  Val and Steve have two children, Steffany and Stevie.  Sadly, Steffany passed away at the young age of 15 from Sanfilippo Syndrome.  Stevie, 14, has the same condition.  The same thing Livia has.  Val has a niece (I believe that is their relation) named, Ramee.  Her daughter, Mable, has Batten's disease.  Ramee has inspired me and has drawn me in by her spirit.  She recently posted a FAQ about Batten's disease on her blog, Raising Redheads.  Please, visit her blog and educate your self about Batten's and  their beautiful daughter, Mable.

This blog has inspired me to do the same thing about Sanfilippo Syndrome, Livia, and our family.  So, if you have any questions that you would like to ask me, ask away.  Nothing is off limits.  It's so important for me to educate others about MPS, about Liv, and about our family.  Before I was in our special needs community, I would see other people with disabilities or special needs, have questions, but never knew how to ask.  So, if you have a question you would like to ask, email me at kelfish121880@hotmaill.com, send me a message on Facebook, or leave a comment below asking your question.  Remember, nothing is off-limits.

A Broken Heart

I've often said that I would trade places with Livia if that meant I could save her life.  I wonder though, if that really is a good trade.  The one "blessing" that comes with Sanfilippo, is that there is no earthly hurt.  No broken hearts.  No worries.  Livia knows nothing but happiness and joy.  She is happy and loving.  She loves people and is happy to just be in the presence of others.  Anyone.

I experienced a broken heart tonight.  For both of my children.  My heart is very vulnerable, everyday.  As each day passes, I feel like a little piece of my heart chips away.  Time is not on our side.  So, when my heart breaks because of something else, it upsets me.  I dropped my girls off at the drop-in before I had to teach a class.  The room was not busy, maybe only 5 other children.  Both girls ran right in, happy to be there.  Livia ran over towards a couple little boys and picked up a toy.  One boy, probably Livia's age held the other boy back and said; "watch out for that girl (pointing) she's really weird."  Livia, of course, went on playing, no idea what those words meant.  As I'm hanging up their bags, I then hear another little girl, maybe 7, ask Finley; "why is your sister like that?"  I watched quietly, feeling numb and feeling the tears well in my eyes.  Finley completely ignored the girl and just started playing.  I left the room in tears.  Completely innocent, maybe a little wrong on the boys behalf, but hurtful, nonetheless.  I understand and get that Livia is different.  I want situations like this to present a learning opportunity.  I was heartbroken to hear someone ask Finley that question.  Finley knows nothing other than Livia is her sister.  I'm not ready to tell her everything.  However, after I read PINK! (a story about friendship and acceptance), I took the opportunity to ask Finley a few questions about Livia.  Just to see where she stands with understanding Livia and if she notices her differences.  She doesn't.  She only knows Livia as she is.  I then told her how every single person in the whole entire world is different.  Not one person is the same.  God made all of us in a special way and we must embrace, love, respect, and be ok with people's differences.  I kept it at a 3 year old's conversation level.

Proverbs 31:8 "Speak up for those who cannot speak for themselves"

I'm speaking up for those in need.  I'm praying and asking all of you; teach compassion to your children and friends.  Teach them to love others.  We can all learn something from each other.  Everyone on this earth has something to offer.  My daughter's have taught me so much in their short lives.  They've made me want to love more.  I feel a duty to spread this message of compassion.  We can all do a little to make a big difference.