Tuesday, November 27, 2012


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

Monday, November 5, 2012

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.