Neglect

TRUTH: I've been avoiding my blog like the plague. Lately, I've been in total denial of Sanfilippo. Livia is doing really well and so I've put everything on the back burner. Liv Life foundation included, but I will get to that a little later. I've gotten the privilege of helping in Liv's classroom a couple times these past months. In the beginning of school when I would go for a visit, she would see me and then cry and cry. Now, she wants to show everything off. She's so proud of her room and teachers. I really love going and helping out. I love to see and hear about her progress. When I hear she is doing something new, I know she isn't regressing at all. I'm scared for the day (if that day ever comes) that I won't hear her precious voice. I love hearing her call for me, sing ABC's or Happy Birthday, call for Finley which comes out Ninny or Sis, ask for the Wiggles, read her favorite books, or just hear her say love you, momma. So, point being; my blog, the foundation, and the paperwork that goes along with ALL of it reminds me of the sad truth of Sanfilippo and that MY daughter has it. I pray about this all the time. I pray for God to show me guidance and to hear his voice as to what direction I need to go with the foundation. I feel so overwhelmed with the foundation. Honestly, I just don't know how to be a mom, a wife, and be an advocate for Liv life. The foundation takes a lot of work. The website alone gives me a stomach ache just thinking about it. I've tried and tried to teach myself how to be a web designer, graphic artiest, etc. etc. It takes HOURS on the computer, just me, trying to figure things out. OK, deep breath. As I type this, read it, re read it, I think to myself.......Kelly, it's better to do something than nothing. Stop complaining. So, here is my idea. If you've read my previous blog posts you know that something I struggle with is asking for help. I came up with this idea on one of my runs (when I come up with my BEST ideas). Form a Liv life council or some sort of board. Put it out there as a volunteer basis. Have meetings once a month or as needed. Tell people you will feed them to get them to your house. This I know I can do! People want to help, right? But what if I get no response, then what? Pray about it. I know that whatever will be will be. If God intends for me and Jake to be the soul runners of Liv life, then we will make it work. If he intends for this to grow like I envision it then it will. I feel like we (our family) is on our way to where we need to be in life. He is showing us people and places that I feel like will open many doors in our future. It is a positive and exciting place to be. More on this subject to come!

So, another reason I fell so moved to dive back into the world of Sanfilippo is because of my beautiful, intelligent, motivated best friend Stefanie Boyce. Every time I see her or talk to her I gain strength and knowledge. She is really an amazing person. She's introduced me to some other beautiful and intelligent woman that make me feel so loved and welcome. I really feel like I'm a part of something so deeply and wonderfully real. Anyway, Stef is working on her own ideas for the world of Sanfilippo. She is so inspiring and motivates me to just do it. Stef also comes to my rescue in my darkest times. She is the friend who calls and will pray with me over the phone. She, because of our situation, just gets it and understands everything I'm feeling when all I can do is cry. She and her family is such a blessing to our family. I thank God everyday for crossing our paths.

Stefanie was at my surprise 30th birthday party. Side note, my hubby is wonderful. He totally surprised me and spoiled me all day. I love you Jakey! So, another way I've been pushing Sanfilippo aside is by not renewing our MPS society membership. We've not been receiving the Courage publication, which I really do miss. By not getting this we've missed the last publication which not only donned the most beautiful Sanfillipo baby, Brooklyn Boyce, but also gave some really promising and exciting news for MPS IIIA. This hope that we hold for our children's future is what gets us through everyday. Whether you have a healthy child or a child with a special need, your desire for them is the same. You want the best for them no matter how many days they have on this earth. I strive for my children to be good, respectful and most of all happy. I want them to learn about our Savior and that our life here on earth is only the beginning. This is what I hold onto and because of that I can LIV each day to the fullest.

All of this said, like everyone I've started thinking about my New Year's resolutions. Here are a few that I've come up with so far.
1. Find the strength to continue with Liv Life and not give up.
2. Not be scared to ask for help when I really need it.
3. Renew MPS society dues.
4. Finish the things I've started (kinda goes with #1, but applies to other things.)

I have more, but I think the list could get crazy. Merry Christmas, Happy New Year to all of you. Remember the TRUE reason for the season and tell your children about it. They will thank you in the future!

God Bless

An idea

I was approached yesterday before pilates class by a friend, Ed. He is someone I've come to know through the Y and through running. He is a marathoner and someone I look up to. He came to me with a fund raiser idea for MPS. I instantly started crying and really couldn't express my feelings or words. I feel bad that I started crying like that. I'm not sure how he felt around a bumbling mess like that! I know my feelings came from loneliness, gratitude and excitement. What a mix! There are times when I feel so alone in this journey. Not only being away from family, but when it comes to the website and fund raising it can be very overwhelming. Gratitude because I was so thankful that he was thinking about Livia and MPS. Knowing that someone's wheels were turning about my child during their time was very touching. Excitement because his idea is fun and easy. All in all, it was nice of him to come to me about this. I hope my crying didn't scare him away and I hope the idea works!!! Thanks, Ed for being there and for keeping those wheel's turning!!!

Grandma Fish

My Grandma Fish passed away Sunday, November 7th 2010. She entered into His loving arms being reunited with Grandpa Fish and her beloved Fe-Fe. She will be missed by so many people. My dad asked my sister and I to write our most fond memories of gma. Audra and I both read what we wrote. Here is what I had to say.............


My Grandma Fish, was a lady of elegance, generosity, kindness and love. She was always so happy and upbeat. The word “NO” was not in her vocabulary. I have so many fond memories of her.
The one that tops my list is an example of her generosity. She never wanted anyone to feel left out, especially her grandchildren. Whenever there was a birthday party or any type of event that involved gift giving for a sibling, she would always bring a little something for the other grandchild. No one was ever forgotten.
Going to Grandma and Grandpa Fish’s house was always a treat. Literally, a treat! The candy drawer in her beautiful china hutch was always stocked and ready for the taking.
Playing at grandma and grandpa’s house was an adventure. I can remember playing in her closet, trying on her clothes, admiring her beautiful jewelry and even wearing her shoes. Grandma always dressed beautifully and even in her nursing home days, donned her beautiful jewelry, even if made from plastic beads. She made anything look good!
Another fond memory was of her CB radio in her car. She let me talk on it and even come up with my own “trucker” name. I named myself “curly sue.”
On a Girl Scout get away that couldn’t have lasted more than a long weekend, I received a care package in the mail. Not just a letter, but a box of “stuff!” It was from grandma and grandpa Fish. At the time, it was the “stuff” in the box that was so cool. I can remember showing all my friends the treats inside. Now I look back on this memory and realize that it wasn’t the “stuff” in the box that was so cool, it was the people that took the time to send it just because they loved me so much and wanted me to feel special.
The legacy that my grandma has left in this world has taught me so much. Her kindness and generosity touched so many people. I’m so fortunate to have been a part of her life and am proud to be her grand daughter. I will miss her so much, but know we will meet again.

All my love, gma!
Kelly Fish Hubert

Family

Jake, the girls and I are so blessed to be parts of such amazing families. Being so far away from everyone is really hard. It's not easy going through the everyday things without some sort of support. (We do have great friends that are here, but it's just different with family.) Having the support from our families is really a wonderful and comforting thing. My mom's side of the family had a family reunion on Sunday. This was a yearly Thanksgiving dinner that we really don't miss. This year we were offered to put up a donation bucket, sell our t-shirts and coffee. This was a great offer and I felt very lucky to be able to do this. On our way to the reunion, I got extremely anxious and nervous. My heart felt like it was going to jump out of my chest. I knew I was going to have to talk about Livia and her condition. Sometimes I find myself hiding from MPS and ignoring it's even in our lives. Sometimes it's easier to do this. But, I was about to face it and face telling people...........family..........about this devastating issue that is going on in our life. I really think my nervousness stems from my uncertainty on how we will be received. Not if we will be able to sell anything or get any donations, but if people will embrace Livia and talk to us about her situation. All the monitary, foundation work, fund raising aside, the most important thing to me is to tell Livia's story and for her to be loved and have the opportunities that anyone else has. Of course I get nervous about saying the word "terminal." No one wants to hear that or have to live with that. However, she is here and we get to experience her today. That is a HUGE blessing. So, back to the reunion. I spoke right before we ate. I stood, holding Livia, giving as little detail but giving as much as I could to get the point across. This was a pretty big crowd that I spoke in front of. It's not the first time, but it was a lot of people standing, looking at us BUT, getting to meet Livia and learning about her. I could hear the shakiness in my voice, but I held my tears back. Which was a success. After I spoke, we ate. Then people started talking to me. Even in the food line, getting the girls food I was asked questions. All my nerves were for a purpose. I got to spread her story and she was embraced by so many people. I LOVE how social she is, and other children (who have no clue she is different), played and played. It was a blessing. The foundation raised money, and we even made some money to help us pay for Livia's Genestein. Our family's generosity, love and kind words meant so much, that I can't find the words to fit how grateful we are. This reunion, as nervous as I was to go, has fueled my desire to do work for our Foundation. To feel the out reach of support makes me want to do more for research and to spread Livia's story. So, for now, I want to say THANK YOU to everyone for loving Livia. For supporting our family in this journey. It would be an impossible one without all the help.

Enjoy today and Liv Life!!!!

"Therefore, as we have opportunity, let us do good to all people,
especially to those who belong to the family of believers."
Galatians 6:10 (NIV)

Energy

I'm a frequent Facebooker and find myself having a love/hate relationship with it. I love it so much because I have a "relationship" or friendship with people or family members that I may not otherwise talk to (often). I love how easy it is to catch up with people and how easy it is to let people know what's going on. I love the network of MPS people. It's nice to have the resource at my fingertips to get advice or ask questions to other MPS families. It's also a great way to spread awareness of what's going on in the life of MPS. On the other hand, I hate it because the personal or real-life feeling is missing. I get virtual hugs often and lots of words of encouragement, but it's not the same as feeling a hug or hearing the words straight from a friends mouth. It's hard to see/read about what other MPS children are going through. Not that I don't care or want to hear, it's just a little scary and it put's the reality of MPS back into my life. I'm not going to lie, sometimes it's easier to just put MPS aside and just enjoy Livia the way she is now. I don't want to think she may not communicate with me or walk to me one day. I can't imagine having to discuss a feeding tube or seizure medications. There has been a lot on FB lately regarding MPS. I'm so proud of all the parents that have this amazing energy to do whatever it takes to do SOMETHING to try to save their children's lives. Foundations are being started left and right. Fundraisers are being planned. Interviews and News appearance's are happening all in the name of our children. I feel like I'm not doing enough on my end. I wish I had all the time, money and energy to do something amazing. Liv Life is a good start and everything has to start somewhere. I guess I'm just feeling a disconnect from the human aspect of things. If that makes any sense at all. Maybe I'm just feeling sorry for myself and just need to get out of this funk and find some energy to do something.

I think another reason I've been a bit down lately is because of how real MPS is feeling now a days. Livia's chewing has progressed from Barbi's feet and hands to her own fingers. She still prefers Barbi, but when that isn't available, it's her own fingers. I've been playing angel/devil with this next one because I don't want Finley to always be in the world of MPS. What I mean is, Finley is a tremendous blessing and I recognize that every single day. I look at her in a way that I don't think every parent gets to experience. She is making such great gains and growing so well. She is communicating so well and has even started putting two words together. She's starting to show interest in potty training which is a big one in my book. This is the start of Finley passing her sister up. This is really hard for me. This is where the angel/devil on the shoulders come into play. I'm so happy and thankful on one side and on the other I'm seeing a sadness in the situation. I have to dig deep today to find my energy and will to do something. I feel like I'm on a teeter-totter all by myself. How do I find a balance. Maybe Liv and Finley together are my balance. I do know one thing for sure..........I'm lucky to have my life, my children and a husband who loves me unconditionally.

Bittersweet

This past weekend was an MPS family gathering at the Miller park zoo in Bloomington. It was a chance for Illinois families to gather, eat, enjoy the zoo and lend support to one another. We haven't gone to a lot of gatherings, but when one is coming up I always get very nervous and anxious. It stirs up a lot of emotions and just being around farther advanced children is sad. (I mean that with all the love in my heart!) Something happens when we gather with other families. It's almost like a peace comes over me and I'm not scared or nervous anymore. I find comfort in talking with other families who are affected. It's almost like we've been friends forever. Being with other people who completely "get it" is something that fills a void like no other. Then there are the families who have older children that I just want to say thank-you to for loving their children so unconditionally. These families have a strength like you can't believe. I admire you and you all have such a special place in my heart. I also feel like we are very fortunate to have gotten Livia's diagnosis so early. There are some families that don't get their child's diagnosis until they are much older and much more advanced in the disease. Keeping Livia stable and on Genestein is going to give her a much better chance for some sort of treatment. We are so hopeful and optimistic that something is going to come out soon. I really feel that is another reason why I am so at peace with this. I've learned that my gut instinct is usually 90% right. My intuitions about a lot of things throughout my life have usually been right. My entire life I always felt like something bad was going to happen in my life. Not necessarily to me, but something bad. Well, that has presented itself. So, my gut tells me that Livia is going to be spared in some way. I don't quite know what that is going to look like, but I really feel like something good is going to happen in her life. I think I'll hold on to that "peace" and if I'm wrong, it's provided a strength for me to get through each day.

Thank you Val and Steve for such a nice event. Your family is beautiful and all the work you and your family did for all of us was so thoughtful!

To all the families we got to meet, thank you for taking the time to know us and lend support.

The Elston family, all of your children are so beautiful and fun! We will be life long friends!

Stef and Beeba (Jut and Jayden, too) Without you in our life, things would be much darker. You bring so much light and love into our lives. We love you unconditionally and cherish your friendship.

When will our miracle come?

I look at my life and the productivity that I'm able to accomplish in a day. I have a great routine with the kids, and I thrive on that. There are some days when I am so ready to face anything. I can feel a strength from within that is so fierce. I'm ready to fill out forms, make phone calls, work on the Foundation, learn about managing the website, plan fundraisers, play with the kids, exercise and cook! This is the short version of "to-do's." Then there are other days, which I feel, are out-numbering the latter. These are the days when I stare at my "to-do's" and I run from them. I feel so overwhelmed with LIFE that I just turn the other way. I think I can justify this because it's denial. When I have the forms, the website, the emails, the fundraisers so on and so forth, it's all in my face. It stirs up MPS when all I want to do is hide from it. I often wonder if it would be better not knowing. Not having to look at my precious child that I hold so close to my heart and know that she is dying. We started the foundation in hopes of raising awareness, raising money for research, and to just have something to work towards. I felt like having this and trying to make a difference would be better than just sitting back and having nothing. I wonder. I honestly just feel overwhelmed with everything. I don't know how to do it all and do it gracefully. Where do I get the strength to face everyday? I need a balance and I think I really need help. As you've read in previous posts, I struggle with asking for help. For one, I don't want to bring people down. Another, I don't want to interrupt other people's lives. And all of a sudden, the strength comes. It comes because I know in order for anything to be successful, you must find the motivation and the strength in your own heart to just get it done. I find the strength because I'm Livia's voice. I'm her only advocate (Jake, too!) and this is all for her and the other children fighting for their lives.

OK, I kinda got off track of what I really wanted to say. I try to title the blogs with what my message is about. So far, it's not about a miracle. :) Jake often talks to me about when our miracle is going to come. He and I both feel like a miracle will come in Livia's life. Will it be in time to save her? I'm not sure. I honestly feel like she and others around her age will be the first one's, or just miss it. What I mean by this is some sort of treatment, most likely ERT (enzyme replacement therapy). We learned in the middle of the summer that they are starting an ERT for children with MPS IIIA in the UK and the Netherlands. We were on board and researching what it would take to migrate to Manchester, England. Our genetic counselor guided me with the phone calls, names of Dr.'s and hospitals, etc. We knew one way or another we would be going to the UK. A glimmer of hope only to be let down. After lot's of research and phone calls, we were told that they were only taking 15 children for the trial and only children in the UK. What about us? They felt like they could get that many children, no problem. I was advised by Livia's genetic counselor not to give up. Keep calling, keep trying. This is very hopeful news for the lives of children with MPS. If it is successful in the UK, it will come to the US. However, that means FDA approval and who knows what else to make it all ok here. I was told that they are hopeful for US trials as early as 2012. Let's keep our finger's crossed and prayers going!

As I think about it, these two topics really can be tied together. This hopeful news of a "miracle" really should be what fuels my strength. Why wouldn't I come out from hiding to try to make a difference in this process. Not to mention, to make a difference for my daughter in general.

Proverbs 3:5-6
Trust in the LORD with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

This made me smile today............

This is still on my page. Scroll down, it's under the last picture of Liv and Jayden. Please keep reading! All our love, The Hubert's~

A Hunger...............

Livia has started preschool, and I couldn't be happier with the situation. I can already see a change in her speech and just her overall happiness and willingness to go to school. I'm getting daily email updates from the teacher and have even gotten some individual updates on how Livia is doing. Yesterday's email was that they are working on: on and off, up and down. This morning when I got Livia out of bed she pointed to her ceiling light and said "turn on, mama." She's been messing with all the light switches she can reach and saying, "on, off." She's never done this before and it's really an amazing accomplishment for her. She's been saying a lot lately, and these little things that I would have taken for granted are so heart warming to me. I still hunger for that "normalcy" that comes with a 3 1/2 year old. I hunger so badly just to have a conversation with her. I hunger to hear what she is thinking and to hear her tell me what she's done at school that day. I hunger for panties............of all things. She's showing every interest in the potty and will tell me "mama, poo-poo on potty." I'll take her to the potty, sit her there and nothing. She'll grab for the paper, wipe and flush. Ask to wash her hands and then poop in her diaper 5 minutes later. I have to learn to put my hunger aside. The reality is, this is probably the best time in her life and I must embrace that. As I wipe my tears away, mend my broken heart and swallow that lump in my throat I fill my hunger with her abundant smiles, hugs, kisses, and goofy laughs that go on all day. I'm filled to the brim with love and the knowledge that I get to be her mom. Ultimately, all I crave is that. Her happy big brown eyes tell me all I need to know. I'm satisfied with that and I'm satisfied knowing that His love endures all. My Faith and His love is a hunger that Livia has helped me find.

(2 Corinthians 1:2-5 NIV) Grace and peace to you from God our Father and the Lord Jesus Christ. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.

With this, I am satisfied.

Is this just a season?

"Kelly, this is just a season in your life." I seem to be telling myself this a lot lately. The stress of having a 3 1/2 year old and a 15 month old is hard enough. Molars are coming in, Livia is getting taller or maybe the counters are getting shorter, the terrible 2's are already starting, bills are piling up, cars need fixed, the dryer broke yesterday, dr's appointments are more frequent, and temper tantrums are happening everywhere I go. Add to that the underlying worry of Livia's situation. I can't just make it go away. I worry about Jake and his job. He has so much stress during the year. I hate to hear him cry and hear how sad he is about Livia. It breaks my heart. Times like this I crave my family. This is so hard to go through being so far away. Everyone has stress and I feel guilty even writing about this. At times, it feels impossible. How do people survive these times? I pray about it and I do keep my faith. However, worldly factors sometimes get in the way. I wouldn't trade my life for anything. All of this "stuff" aside. I get to love and experience my kids. Being a mom and dad is so hard, but it's a blessing. "It's better to have loved............." I repeat this to myself almost daily, but I don't say the entire quote. I tell myself this because in the end I want to know that all my effort was put into loving my girls. Ultimately, nothing else matters. Yes, we have to take care of our responsibilities and do what is right. But in the end I want to look back and be happy; not mad, stressed, full of what-if's. This season in my life is a hard one. I have to just recognize that and try to make the best of it. Tomorrow is a new day, however, today is not over and there are still lots of minutes left to make it a good one.

Back to school shopping

When we got Liv's diagnosis a year ago in July, that month was spent crying, celebrating the new baby, and learning everything possible about Sanfilippo. I spent most of the month in the house, wanting to hide. We were home to Central Il the beginning of the month, but the majority of the time was spent in devastation. I can remember one of the first ventures out of the house. It was a trip to Target with just Livia and myself. It was in the beginning to middle part of August when all of the back to school "stuff" was out. I remember watching all of the parents with their children shopping for all of their new school supplies with lists in hand. A particular mother and daughter caught my eye. The little girl was so excited looking at all the backpacks. I can remember watching her with tears in my eyes thinking I'm never going to experience this with Livia, and maybe not Finley. (At that time we didn't know the results of Finley's test). I wanted so badly to have this experience with Livia. I wanted to hear her excitement, hear her voice. I wanted her to tell me her excitement about school. At that time I thought life as I knew it was over. I was so heartbroken over a simple situation such as back to school shopping. Well, this weekend I'm going to get to enjoy something I never thought I'd get to experience with Liv. We are going back to school shopping. We are so blessed to live in a great school district. Livia is going to receive speech therapy, OT and PT right at the school. This is HUGE for her. For a school to house all of these therapies and therapist is such a blessing. I really feel God directed us here for a reason. When we talk to Livia about school she gets so excited. She starts talking (in Livi's talk) about teacher's, the bus, friends, and a BACKPACK! I'm so excited, and nervous, for her. This is going to be a big adjustment for all of us, but a good one. I'll post first day of school pics when that day arrives.

uN-cOmFoRt ZoNe

Being "in the zone" is a place I've really come to appreciate. All my fellow runners will appreciate what I'm saying. Come to think of it, I think a lot of people are "in the zone" right now. Before 7/8/09, I was living in my comfort zone. Life was comfortable. I really didn't have many worries. I should say, my worries weren't in my face like now. I'd say I'm in the uN-cOmFoRt ZoNe now. Thinking about this theory isn't all a bad thing. In a runners world being in the comfort zone takes some stepping out of being comfortable and becoming uncomfortable to reach a level of achievement. Putting my body through strenuous routines isn't always the most fun thing to do, but the end results and the sense of accomplishment is such a good feeling. Being comfortable is easy. I never use to like stepping outside my zone. In a way, I really didn't need too. I feel like being in the uN-cOmFoRt ZoNe has forced me to grow up and become a person I never thought I'd be. I've learned more about myself in this past year that I'd ever give myself credit for. Being a bit uncomfortable at times has created a strength and focus that I've come to really desire. From here on out there will be situations in my life that will be unbearably uncomfortable. The ways in which I choose to handle these situations will create an end result that I can be happy with. My advice to you whom are struggling in some way; look at your life and see if the reason you are unhappy could be due to being comfortable. Are you stuck in a rut with your weight? Are you unhappy with your marriage. Are you struggling with accepting a situation that is scary? Do you have financial worries? Could any of these situations be due to not wanting to step out of your comfort zone to make a change? If you are willing to be in the uN-cOmFoRt ZoNe to make a change then things could get better. Only you can create your happiness...............or unhappiness. If you depend on anyone else, but yourself, to design the worth or comfort in your life then you are destined for disappointment. I can't tell you how many times I've written this and erased it. I felt like what I was trying to say was coming across in the wrong way.

Summer in the Hubert household has pretty much come to an end. Livia had surgery 3 weeks ago and Jake had surgery 2 weeks ago. Recovery is getting much better for everyone, but getting out and enjoying the fun things summer has to offer is just not happening. Finley just came home this past weekend. Between my mom, grandma, sister,dad, and Jake's mom and dad, Finley was in central Il for a week. AN ENTIRE WEEK. She did great and loved all the undivided attention. Not to mention it really helped me while I was taking care of Livia and Jake. Thank you to all of you who were able to help. I don't know what I'd do without all your support.

To be........

{it is best to be}
"It is best to be honest and truthful, to make the most of what we have, to be happy with simple pleasures, and to be cheerful and have courage when things go wrong."

-Laura Ingalls Wilder

I have this lovely quote hanging in my house. I walk by it everyday and I always glance at it and say it to myself. I had this quote hanging up before we got Livia's diagnosis and it's something that I appreciated but didn't really whole heatedly live by..............until now. Honesty is something that will get all of us farther in life. Whether it's just simply telling the truth, being honest with ourselves about our own happiness, admitting what's on our minds, asking for help, etc. etc. saying it out loud is the hard part. In my experience, when I get something off my chest that's been bothering me, I feel better when I just say it. This past year I've been struggling with being honest about my feelings. It's hard to express and be honest about my thoughts. I don't want to burden anyone or bring anyone down. I think that's one reason this blog has been such a blessing for me. I feel like I can be completely honest here and just say what I need to say. So, here goes with being completely honest and admitting something that is hard to say out loud. I'm starting to recognize that my world is divided and probably will be divided for quite some time. I have one foot in a "special needs" world, and one foot in a "normal" world. I'm becoming more aware of this because Finley is changing so much and communicating so well. Livia is doing really well and using more words all the time, but it's different. I struggle so much with wanting so bad to have a conversation with Livia. I want to hear what she's thinking. Finley is already responding to us with a few words and telling us what she wants. Livia really didn't start talking until she was close to 2. I've also come to a realization that it hasn't been until just recently that I feel like I've bonded with Finley. This is so hard to say out loud. Unfortunately, this past year has been consumed with devastation, coping, learning, and finding a way to just do something to fight MPS. Livia's diagnosis came when Finley was 8 weeks old. What I remember the most of her infancy is sitting on the couch with her scared to death that she might be affected and watching Livia play thinking about this awful disease she is affected with. I feel so bad that Finley's first year was clouded with MPS. I know I shouldn't feel bad, but I do. This is another example of having one foot in one world, and one foot in the other world. I have to find a balance and not feel guilty about anything. After all, Jake and I are doing our best to do whatever is needed for both of our girls. I also have to say that I know I'm lucky to be in both of these worlds. You think I'm crazy for saying that? I don't. Sanfilippo is going to help us be better people. Sanfilippo is going to help this "normal world" put what Laura Ingalls Wilder said in her quote into action.

I've gotten in the habit of starting a blog and having to walk away for one reason or another. Be it dirty diaper, having to clear my thoughts or wipe away tears, I haven't typed a blog in one sitting for awhile. We were just on vacation in Minnesota with Jake's family this past week. It was nice to get away and be together. We enjoyed the days with swimming in the lake, fishing, boating/tubing, playing games, camp fire, good food and drinks and even running on occasion! While we were in Brainerd, Mn we hit the one year diagnosis day. It was a hard morning for me because I kept re-playing that day and the surrounding days that occurred one year ago. It was haunting. I cried with Jake. I called my mom and cried with her for a bit. I gave Livia a hug and told her how much I loved her and how proud I was to be her mommy. I re-gained my strength from her loving ways and enjoyed the rest of the day. I actually spent most of the day on the lake tubing. It was a good distraction.

Another situation to report that is one to mark down for the record blog.............This past Saturday at the Roscoe Rush football game, a lady who is the mother of the owner of Texas Roadhouse in Rockford introduced herself to us. Texas Roadhouse is providing peanuts for us to sell at the games. We get 100% of the profit. It's very generous of them! Anyway, I hate that I can't remember her name, but she read the print out about Livia that we have on the donation bucket. After reading it she took my hand and told me that being a mother is the biggest and best blessing that anyone could have. That God is good and good things will come our way. She was so sincere and loving...........I instantly started crying. What she said next really hit home and it's something that I will always remember. She told me that worrying is an insult to God. I appreciate her words so much. I told Jake that that situation means more than someone throwing a dollar in the bucket and just walking away. Not that I don't appreciate every dollar we get, because I do. It's what we're working towards in order to help find a cure. It just means so much to know people's heart and to know they care and love us. Thank you for being so honest with me.

Matthew 6:25-27, "Therefore, I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?"

Overwhelming feelings

I was doing well at the beginning of this week. I felt so thankful and overwhelmed with all the feelings of gratitude I have for everything people do for us. Donations are coming in, slowly.........but coming in. T-shirts are selling well, coffee is getting there and our donation bucket is doing well at the football games. A player from the team put up a donation bucket at a gas station, a success. For all of this I am so thankful. I'm thankful for all the fund raising ideas that are coming in. I'm thankful to our family for making trips here to help us out. I'm thankful for people who aren't afraid to talk to me about our situation. It's not a fun feeling to feel alone in this. On the other hand, 4 children with Sanfilippo have died in the past 2 weeks. I'm so saddened by this. It scares me. One of the families is from Wisconsin. I received an email from the MPS society that the family wants to donate a new wheelchair, feeding tube supplies and various other "materials" that are new or barely used to another family in the Illinois or Wisconsin area. I had a couple reactions to this email. My first reaction was of course sadness for the family. I was a little shocked because we are in no need of this equipment and it made me think we may need this stuff in the future. I also had a strong desire to reach out to this family to in some way maybe be a support for them. I wanted to tell them how sorry I was to hear about their child. I wanted to know about their child. Just know them. I HATE THIS. I hate having to work around this pit in my stomach everyday. Livia is my heart, she has my heart. She and Finley are my world and all I want for both of them is to be healthy and happy. I just want my children to LIV. I will do anything to fight for her life. My desire is stronger than ever to do something, anything to raise money for research. With Jake laid up for the summer (bucklehorn tear of the meniscus, avulsion fracture of the patellar tendon, bone bruise and complete tear of the ACL) he will be getting lots of computer assignments from me to help our cause. I'm starting to realize that I'm going to have to delegate some tasks to others in order to get everything done. I know I can't do it all by myself. (Volunteers anyone????) With all that said, we are going to make the most of our days and the most of this summer. I've said it before.........each day is truly a blessing for anyone.

Psalm 136:1

Give thanks to the Lord, for he is good, for his steadfast love endures forever.

Bundled: Blessings & Burden

I wish I could understand what makes a good day verses a bad day. How is it that I can be on top of this world ready to face anything with my head held high one day, and the next, cry at the drop of a hat and feel like my tiny accomplishments aren't going to make a bit of difference? I can recognize all the blessings in my life. I'm so lucky that this new life has provided cleansed and renewed eyes that are wide open all the time. Unfortunately, it's taken a tragedy for this to happen. This burden that hangs over my head all the time can get in the way or cause a blind spot. I fight with all my worth to have good days. It's easy when I'm surrounded by laughter and love. All of this can be a bit overwhelming at times. Especially when they are bundled: these blessings and burden. I'm emotionally drained balancing it all. I'm extremely thankful and happy to have good things coming our way in the name of our daughter. I'm anxious and worried about getting everything done and planned to reach our goals. I'm sad and scared about the future. I'm tired of fighting with myself in my head about what my priorities should be. It's all so much when all I really want to do is not worry and just play with my kids. With all of that said, I know that I can handle it. I know I've been given the tools, the mind, and the heart to make it through this.

Some blessings:
Last Saturday was the first home game for the Roscoe Rush football team. Our friends the Kelly's (owner's of the team) have graciously allowed Liv Life to set up a booth during their games. They have organized a radio commercial through espn 1380, the foundation is being announced during the games and they have written a newspaper article about another fundraiser we are doing. This is only the beginning of "events" they are helping us with. It's a good example of selflessness and generosity that more people need to take note of. Thank you for helping us and loving our kids!!!

People are starting to approach me about my blog or about the foundation. It is such a blessing to know that in some small way I'm helping someone else through my honesty. I've met some really amazing people that in their own ways have helped me and inspired me. I'm so fortunate to have people that really do care and want to help. I can't do this alone.........so thank you for your honesty and thank you for just talking to me!!!!!

Livia and Finley are both doing so well. Jake is almost done with school. His hours have been much better and he's been home in the early afternoon. This summer already seems to be jammed packed with things to do; surgery, appointments, vacations, fund raising events etc. etc. I'd much rather be busy than not. As hard as it is sometimes to balance all of my emotional to-do's, it keeps me busy.

Upcoming fundraisers and events that keep us focused on our goals. I feel more in control about the situation doing SOMETHING. I feel like my goals are big, but why not aim high? I have nothing to lose. My latest thought has been "mission for a million." This is very ambitious, but like I said, I have nothing to lose. I really feel like if we can find the best way to market Liv Life or touch the right person something big will come our way. I at least have to try.

Rock Bottom

How do you know when you're about to hit rock bottom? When do you say enough is enough, I need help and I feel like I could snap at any moment? I should be able to do this, right? I should be able to manage a household, raise happy and respectful children, please my husband, keep "life" in order and keep my sanity all at once. Everyone else does it, so I should be able to. How do I keep this sadness and hurt from raising up through my everyday to-do's? I have to be happy and cherish every moment that I'm given with my kids. As Jake tells me, if you dwell on the bad then all of this is going to pass me by. He's right. I can't dwell on MY sadness. After all, this isn't about me. I'm struggling to find a balance. Why does it feel like EVERYTHING in my life is not going the way I signed up for it to go? I try so hard to paint my exterior happy. I'm thinking I need a new paint job. Proverbs 17:22 "A cheerful disposition is good for your health; gloom and doom leave you bone-tired." I seem to be saying this over and over again to myself. It really is true. When I am "in a mood" I'm not the mother, wife, sister or friend I want to be. I reflect on my good days when I can push the sadness away and I am me. How do I find this balance everyday? How do I let the other stress' (the one's that everyone else deals with) and the stress of having a sick child not affect my living? I'm allowed to be sad, right? I don't feel like I have time to be sad. After all, time is not on my side. I guess I have no choice but to buck up and do my best. One of my biggest fears is regret. I don't want to ever look back on my life and regret anything..............especially with my children. I want them to enjoy their childhood and have a mom that they will be proud of. So with that said, I'm pushing away this sadness, painting myself happy and leaving my life in HIS hands. I've wasted enough time on myself these past few days. It's time to LIV LIFE!

Dear Lord,
I can see the value of life through my children. Forgive me for overlooking today and each blessing you put before me. Teach me to be patient with all of life's stress'. Help me to find patients in every avenue of my life. Let me know that it's ok to ask for help. Lord, I lift this all to you because I know you are carrying all of my burden's for me. Amen

Honesty

My life is pretty much an open book. I really don't mind this. I've never really felt like a private person. I'd much rather talk about what's going on than internalize my feelings. The same thing applies with Liv's life. I always want to be approachable when it comes to what's going on in her life. If someone has a question, I'd much rather them come to me so we can talk about it. Nothing is easy with Sanfilippo. So much is unknown. We really don't know how it's going to affect her. I pray so hard that it be God's will for something to come in her lifetime that will save her life. I can't imagine not having her. Lately I've been feeling a little overwhelmed with everything in our life. Good and bad. We've had a lot of good lately which is reason to celebrate. We have an amazing group of friends that have rallied around us with some great ideas on how to fight for Liv. To sit in a room surrounded by some really big football guys, a coffee guy, other moms and dads, grandma's and grandpa's, and friends that really love us is an emotion I wish more people could get to experience. I'm overwhelmed with the good because there is sooooo much to do and not enough hours in the day to get it all complete. I don't want to let anyone down. I want to get everything done and start seeing results. It's so important for me to make this foundation a success for Livia and other MPS families. I can't and won't just sit back and do nothing. When the good overwhelming feelings come through it fuels my fire to fight even harder. When I get to see God's work being done through my daughter, it makes me proud and happy. It really is an amazing thing to be able to recognize. It's helped me to embrace the place that we are in this "new" life. I trust Him and I know that His hands are strong and will carry this burden for me. Romans 8:28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

DONATION SPOT

We are working on getting the donation spot up and going on the website. We are able to take donations to the foundation. Checks made out to Liv Life Foundation or cash can be sent to 11098 Lemon Grass Ln. Roscoe, Il 61073. Electronic debit/credit card capability will be coming soon! Your donation may be tax deductible. Talk with your tax agent to find out. Liv Life Foundation will be a 501(c)(3) organization. Thank you so much for your support.

13.1

Saturday, May 1st 2010 Jake and I accomplished something that we both thought would never be possible. Crossing the finish line in Memorial Stadium was such a great sense of accomplishment. I really feel like this is the first thing I've ever really been this proud of myself for. I can recognize that I worked really hard and did what I set out to achieve. I think through this process I've really found out who I am and what I'm capable of. This past year has been such a life altering, devastating, eye-opening, soul finding kind of year. It's also been a year of seeing God's work and glory really shine through in some amazing people including ourselves. This new path we are on has led us to meet some wonderful and inspiring people. Having these "new eyes" makes us recognize the good and really know what is important. When we crossed the finish line we found our family and saw our girls right away. It was so emotional to see a section of our Livlife black tshirts and Livia waving real big. They let Livia down onto the field and she ran into my arms. Of course I started weeping and all these emotions I was having were so REAL. I can honestly say I embraced every moment and still get teary eyed thinking about how proud I felt at that very moment. I wasn't only proud of myself and Jake for accomplishing this, but I was proud of being Livia's and Finley's mom. I was proud of family and friends for being there to support us and to represent Livlife. I was proud of the day and what it meant to me. As Jake and I walked away from our group we had to stand in a line to get out of the stadium and get our bags. As we were standing in this line congratulating one another going between laughing and crying, I looked at Jake during one of my crying moments and asked him if it would feel this good when they find a cure for MPS? He said.........it will feel better. It will feel better, and I know that day will come. But for now, I'm going to try to find that good emotion in some part of each of my days. Today I get to hear my girls laugh, see them play together and feel that love like I finished a 13.1 mile race and that's all I need to know that today is worth it and today is what I'm proud of!

Will you be here tomorrow

Let's face it, no one can really answer this question. Our hope is yes, of course I'll be here tomorrow. My thoughts on this are not so much for myself, but for Liv. I realize this is a pretty awful thing to think about and pretty depressing for a Monday morning, but this is my reality. In the back of my mind is a constant thought of losing my child. A pit in my heart that no one should have to feel. I try so hard to not let this thought surface because I can feel myself going to a dark place. The truth is, it's always there in some way. Last night Jake and I watched "The Blind Side." What a great feel good movie. I cried through most of it. During the movie (I can't tell you at what point) I felt anxious about Livia not being with me. I do mean in that moment in time, not a thought of her being gone forever. I knew she was comfortable in her bed, but I needed her with me. I wanted to feel the warmth of her body and smell her sweet smell. I was surrounded by her pictures, and in a way, it made it worse. Then I started thinking about her not being there like really not being there. Then it felt really bad. I can't IMAGINE not holding her or hearing her. I had this thought awhile back when Livia was in a different car than us. It was Jake, Finley and I and the thought came to me that someday it may be like this, just the three of us in the car. It's so hard to imagine that time and I know I shouldn't because no one REALLY knows what our time looks like on the earth. We can only hope that tomorrow will come for us and we can be happy about yesterday. As dark and as hard as these thoughts can be on me, I can find the light in all of it. I can LIV today so full and make it a point to love my kids just a little harder. I find joy in the smallest things that before diagnosis I would have taken for granted. I love watching my girls eat! Even in the frustrating moments of dirty diapers, teething and loads and loads of laundry............I'm lucky to experience it. Don't get me wrong, I'm human and I get angry and frustrated but I have a constant reminder to just take a deep breath, get over it and move on. There are more important things to put my energy towards like living my best life today and praying to be blessed with tomorrow. I love you Livia and Finley more than you'll ever know. You make my today worth it!

Philippians 4:6
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

www.livlife.us

This is so overdue..............I really have no excuse other than I just haven't made the time to blog. We've had so much going on in our lives. I've found that keeping busy makes me a happier person. I'm not one to sit still for very long. We have been so blessed with some AMAZING, self-less people. Our friends the Phillip's have a church in Poplar Grove called The Grove Fellowship. Jake and Brian became instant friends when we moved here. Brian helped with a group Jake is involved with at the High School, Change Inc. Brian has an amazing staff that volunteered to help us get our beautiful website going. Max and Matt helped design and start the site. We had a couple face to face meetings where I laid out what we were looking to do and gave them my ideas. They took everything I told them and enhanced it more than I could have expected. Our logo that Max designed is so perfect. Having something like this has enabled Jake and I to work towards something. Before our website I felt so out of control and lost because there was nothing I could do. Having this site and starting our foundation is bringing a little bit of that control back. I feel like we are working towards something. We are bringing awareness to this scary disorder. We are able to tell our story and be proud of it. I am so proud of my family and my daughters. My hopes and plans for this site are to of course bring awareness. I also hope that once we become not-for-profit, we will be able to have fundraisers and events to make money for research. I have so many ideas! With all that said, thank you to the Phillip's for always being there for us. Brian and Kristy are inspiring and make us want to be better people. Max and Matt, thank you for your self-less desire to want to help us. You will forever have a special place in my heart.

We are so excited that we have our first batch of T-shirts made with our logo on them. They are done in time for the Illinois marathon. Dad and Carol, thank you so much for helping us get this task accomplished. I haven't seen them yet, but from Carol's message and talking to my dad today about it, I hear they are AWESOME! I love you guys so much and am so appreciative of this.

I have so much more to write, but feel like it all doesn't belong in this post. I'm working on making more time for this blog. It feels good to write, and I know people like to hear what's going on with us. Thank you to everyone who's taken the time to look at our website. If you haven't seen it, check it out..................www.livlife.us!

BEAUTIFUL

It has been so refreshing to wake up with the sun beaming in. It makes the house feel so good and it makes my attitude that much better. Livia and I were able to spend about 3 hours outside together. Finley joined in when she got up from her nap. It was so great to watch Livia play on her swing set and run around the yard. We went on a walk when Finley woke up and stopped at a couple neighbor's houses and the kids played together. I love watching Livia interact with other children. She thrives around her friends. The fresh air and the sunshine felt so good. I think I even got a little color on my cheeks. Livia was so tired at bedtime. So was mommy! I'm really looking forward to the summer when Jake can join us for this fun. Yesterday was a really BEAUTIFUL day with my two BEAUTIFUL girls!

Quiet

The house is quiet, both girls are sound asleep. All I hear is breathing through the monitors, and Lola snoring. This is a hard time for me. This is when my mind wonders and my thoughts consume me. It's one of those moments where I think to myself, a time like this before Liv's diagnosis I would be like............yes! Peace and quiet for mama! Not that I don't need my own space and time, but I'd much rather have someone up with me right now. I'd rather be listening to a baby cry or changing a diaper or playing than having these awful thoughts. My girls help me get through these tough times. Livia's laughs and babbles are music to my ears. Finley's response to me and the games we play are so precious. Lately Livia has been coming up to me when I'm doing another task, like washing the dishes, and pulling my body around and tugging on my clothes saying "come on mama." Or, if she is having fun doing something on her own she'll just motion me with her hands to "come on"! I absolutely love this. I love that she wants to play pilates with me. It's a modified version of airplane. Finley's personality is shining. She recognizes when she makes me laugh, and then ham's it up even more. Her 4 front teeth show now when she smiles. I love to tickle her tummy. Why does life have to be so unfair? I have these precious wonderful gifts, but in the background is this ugly and difficult thing. I try so hard to push it aside, to be strong. This is a good time in our life, and in some ways I think I might be in a little bit of denial about the whole thing. It's better when I can take it one day at a time and not think about tomorrow, but some days, like now, I have a hard time controlling my mind.

"CRY".................thank goodness!

Awareness

This is such a critical time, and awareness is what we need! There is hope for a cure or a treatment on the horizon. As a family, we have so many ideas and with our new website we will be able to promote awareness and fundraise. This was on TV not long ago and it's a great way to spread the word. Please join us in the fight to save Liv's life. Check out the link's below to see what some other people are doing to raise awareness and fight for their own children's lives as well as all children affected with this unfair, nasty disorder. Please feel free to contribute your ideas to spreading awareness or good fundraising ideas. kelfish121880@hotmail.com


www.couragemovie.com


http://abcnews.go.com/Health/video/graces-story-10012107&tab=9482931&section=1206835&playlist=3547557&page=1

Perspective

The ability to perceive things in their actual interrelations or comparative importance. This is one definition of the word perspective that I'm keeping in mind.
We all have things in our lives that we struggle with. Whether it be our weight, finances, dedications, friendships, relationships, addictions or even our day to day tasks. Something in your life is a struggle. I've had a few issues that I've been struggling with lately, and one of them is something that has been on my mind almost daily since Liv's diagnosis. It's a friendship that I am missing terribly, but I feel like I shouldn't be the one to come forward. I have to come clean about something, and most of you who know me might already know this. I am a stubborn person. I have a hard time admitting when I'm wrong or backing down from a thought that I think is right. In a way I'm glad I'm like this because it makes me a strong person. However, it can bite me if I'm not careful. This past weekend, I was given a perspective on this situation by someone that I respect their opinion and loved what they had to say to me. I was given another perspective just yesterday during a play date by another friend that I am just getting to know. Both of these women had really good things to say, and I learned a lot during both of these situations. The weekend perspective was that I need to be the bigger person and make the first step to rekindling my missed friendship. I don't know how my missed friend is feeling or what the situation was in her life to make her make the choices she made regarding our friendship. In the end, if I really miss my friend and cherish our relationship then I need to tell her. The second perspective that I learned jut yesterday was that people don't deserve to be judged. Someone might seem unapproachable but turn out to be just the type of person you need in your life. It's like how the old saying goes, "don't judge a book by it's cover." It's simple but true. You never know what someone is going through in their life to make them they way they are.
I try to put myself in other people's shoes regarding our situation. I probably wouldn't know what to say or know the best way to ask someone about their daughter's terminal disorder. It's a very scary thing. However, I'm still the same Kelly Fish Hubert that I was in kindergarten, and I do miss my friend. I'm working on that stubborn person inside of me and figuring out how to make the first step. I think this might be a baby step, but it's not really a fair one because I don't know if she even reads this. I know I should just pick up the phone and call, but that seems too hard. Maybe a letter or email will be what I do. Either way, I need to do it. Kristy, you are my sister in Christ and I love you and Brian for who you are and the good things you are doing in your life. Thank you for the advice, I do respect what you have to say.

For Brittany

Amazed

I often wonder what life would be like if we didn't have Sanfilippo in our life. It's been my goal to find the positive in this "new life" we've been given. Some days it's really hard. It's especially hard when the dark out weighs the light. However, I've found that the light prevails and there is so much positive to focus on. For example, Sanfilippo has brought knowledge, compassion, strength and focus into my life. Because of all of these things I'm a better person. I can be a better mother, sister, wife and daughter. Another example, are the people that we have met along our way. The people that we don't even know are out there, that our story is touching them in some way. This amazes me. We have been so fortunate to meet strong and encouraging people that inspire us and help us through our tough times. We've made friends along the way that are truly a God send! I've been so touched by the family members that are out there that want to help make a difference by bringing awareness to the people around them. My cousin Allison is making purple bracelets for all of her friends to help spread the word about this ugly disorder. She has touched my heart! I've been passing letters (hand-written!!!!) between myself and another cousin. This is something I look forward too, and another little thing that means so much. Livia is touching the lives of so many people and I can't help but feel like it is a blessing. I'd give anything to trade places with her or just take it away all together, but I can't. I've been given insight into what our future might look like. It's scary, but I'm able to cherish all of these blessings and LIV each day with purpose. I have no time for drama, excuses or petty fights. So, because of Sanfilippo I feel, in a way, I've been cleansed of negativity. With saying that, it's not like I skip around all day humming to myself and feeling on top of the world. I'm far from that. I just have a new sensitivity to my surroundings. I see things so differently now and I appreciate the goodness and kindness of this world. Life is about choices, I can choose to lay in bed and cry all the time or I can choose to pick myself up and enjoy what life has to offer. We only have one life, don't you think we should make it a good one?

Here are some updated pics of the girls. They are really starting to interact and play together. Finley is trying so hard to keep up with her big sister. She is crawling, or so it resembles a crawl, and walking around furniture. Time really goes too fast, but each day my girls are doing something new. For this I'm happy and excited to show off these pictures.

New Songs

I came across this song by Brett Dennen a few months ago. I was in my bathroom getting ready for something and I had one of the music stations on that comes with our satellite. I was listening to music not really paying much attention to what was playing. This song "By and By" came on and for some reason it just caught my attention and I stopped what I was doing to make sure and catch who was signing it and write down the title. My first thoughts when listening to the words were of Stefanie and Justin. They have become (in such a short amount of time) more than just friends! They are real people that have inspired, comforted and loved us through this difficult time. It is such a blessing that through this terrible diagnosis, that both of our families are going through, we have been lead to one another. I can't imagine going through this without having someone that can relate to exactly what we are going through. So I dedicate this song to them beacuse they have touched our lives and make us want to be better people. I love you Stef, Jut, Jay and Bee-Ba!

The other song is a Hymn that was sung at our home church this past Sunday. I love the church that we are attending in Rockford, but there is no place like home! Something that I miss so much is singing from a Hymnal. It's not like the songs that we sing at Rockford First aren't great, and don't speak to me because they do. However, I really miss Hymns. This particular Hymn, the Hymn of Promise really touched me and my life. Unfortunatly I can't download this song to my page directly, so I'll write the lyrics at the end of my post. I think I'm going to go buy a Hymn and start reading them.

In the bulb there is a flower; In the seed, an apple tree; In cocoons, a hidden promise: Butterflies will soon be free!

In the cold and snow of winter, There's a sping that waits to be, Unrevealed until its season, Something God alone can see.

There's a song in every silence, Seeking word and melody; There's a dawn in every darkness, bringing hope to you and me.

From the past will come the future; What it holds, a mystery, Unrevealed until its season, Something God alone can see.

In our end is our begining; In our time, infinity. In our doubt, there is believing; In our life, eternity.

In our death, a resurrection; At the last, a victoryUnrevealed until its season, Something God alone can see.

Comfort

Since Christmas I feel like I've been living each day in a bit of denial. It's easy to do since we have such a great routine. I feel like I've put MPS away to try to bring back myself. I was tired of being sad everyday. I was tired of looking at Liv and feeling that pit in my stomach. For awhile, it worked.



Livia had her preschool screening last week. I was extremely nervous about this because I knew that I was going to have to talk about her condition. George and Cindy came up to stay with Finley so that I could give my full attention to this endeavor. When we got to the screening they took us to a table that had all of the children's files. They got Livia's file out and right there was an Internet print out that said Sanfilippo Syndrome and a bunch of highlighted sections. This isn't how I imagined this would go. We then went into a room with two very nice ladies. One was a speech therapist, the other was the school psychologist (this was just by chance that we got her). They started talking to me about what Livia was capable of (at this point they did not know about her condition). I was trying so hard not to lose it, I didn't want to cry. I lost that battle. I started crying and trying to explain MPS. I gave them a booklet on SS. They were both very kind and very interested. I gained my composure and was able to talk with them. Livia was happy and content the entire time. I was asked to leave so they could spend some time with Liv. She waved and said bye-bye mama. I waited for them to come get me and we were on to the next step of the screening. When we were done I had errands to run to get ready for Livia's party. My first stop was the bank. I sat in the parking lot and cried. The thoughts that ran through my mind were that I could not do this. I felt like I was not going to be capable to live this life. These are terrible, awful thoughts that no one should have. All this time Livia was in the back seat reading a book and eating a snack. She was happy. This preschool screening brought me back to reality. I called my dear friend Stefanie and vented to her since I knew she would completely get what I was saying and how I was feeling. She helped me to calm down and reassured me that everything was going to be ok. It's hard to face your fears and this was one of my first fears. I also realized that this is my reality and God gave me a responsibility to take care of these angels that He put in my life. I know that Jake and I are going to give our girls the best life possible. I know that I am capable of providing any type of care that will be needed during this life. God knows that we are strong and that we can face this. We have no other option.



Awhile ago I posted a question on Facebook. I asked "What is your comfort?" I wasn't surprised with every one's answers. They were mostly answers of family and food. I agree, these are comforts to me as well. I was surprised that only one person, my sister, mentioned God. I've found so much comfort in our Lord that I'm even surprised by this. I say this because when I was younger I had a really bad experience at church. I felt pushed away and I didn't feel welcome. I was a young kid that didn't understand this. I felt very uncomfortable and confused. Going to church became a fight, at times, with my parents. I wasn't getting much out of going, and why would I want to be in a place that I felt like I wasn't welcome? I look back on these situations and it saddens me that I was lost in a place that was suppose to be a comfort. Jake, the girls and I have been going to Rockford First. We have visited so many different churches in the area, but Rockford First is a fit for us. One of the recent series was 24/7 and the message was "comfort." It was on the book of Corinthians. This was such a powerful message to me. I became so inspired and knew I could face whatever challenges are put in my life. I know that the problems in my life are not bigger than God. "All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort." (2 Corinthians 1:3) Through this journey I've discovered so much about myself. I've discovered a person within myself that I didn't know existed. I've found a new Faith, that I'm not ashamed of, I've found focus, strength and more love that I can't even explain. I've also learned that there is so much hurt in this world. I feel like everyone has some kind of heart ache. Maybe it's a situation like what we are going through, a troubled marriage, the loss of a loved one, cancer, addiction, miscarriage, the list could go on and on. Why is it that we have to experience these situations? Maybe they are situations that are to teach us something. Maybe God is watching how we are handling ourselves and the people around us. In my opinion, God does not put these situations in our life. I do know that when we discover that God is our source of comfort, we should help others do the same. Pastor Jeremy said that being comforted may mean that God gives you the ability and strength to overcome a very difficult path. The problem doesn't go away, but God inside of you becomes larger that the problem. This is my comfort and this is what I have to hold onto.

Livia is 3 now, and her birthday was a huge success. We had a house full of happy people that came to celebrate with us. Jake and I put on a small magic show to go along with the Abby Cadabby theme. Jake was so funny and had the entire house laughing. He is a natural born entertainer, and was definitely in his element. Livia had some of her friends over and she loved showing them her toys and running up and down the hallway. I loved having a house full of friends and family. I love to entertain and feed people. I had so much good help that the day was stress free!

Finley is growing by leaps and bounds. She still has a "fro-hawk" or so her daddy calls her spiky hair. It's getting longer and thicker in the back, so I'm sure it's going to lay down any day. I really don't want it to lay down, it's really cute! She is crawling and just the other day I sat her by the couch and went into the kitchen and looked back at her and she was standing at the couch! I was so surprised I cried a little! She has such a great personality, and I can tell that she is going to be outgoing and independent. She is such a blessing, and she helps me to get through some of the hard days.

Jake and I are both preparing for the Illinois Marathon (Half) in May. I'm looking forward to warmer weather and getting outside for some fresh air. This is such a hard time of the year. I love the snow when we first get it, but I'm ready for it to be gone during February. I'm getting spring fever really bad!

I have to say one more thing before I turn in for the evening. I'm so appreciative to all the people that don't even know us, or know us from a friend of a friend that reach out to us. Just today I got a very nice FB message from the wife of a guy Jake went to HS with. They don't live far from us and often travel right by Roscoe to go to Chicago. She kindly told me how she reads my blog, would love to meet us and prays for us everyday. I remember meeting her husband once, but this small act of telling me she thinks about us means so much. I can't even explain how much this helps me. I cried when I read her message, but I can honestly say that it made my day. Thank you to everyone out there that cares. I care about you too!

January 19

Having a two, almost three year old and an 8month old is hard work. Three year old's like to get into things, like to test the waters and boundaries. This particular three year old likes to bite and when she is frustrated sometimes reverts to head-butting. I can't help but react to these behaviors in a way that I think most parents would. Sometimes I physically remove her from a situation and firmly tell her what she did was wrong. When I'm dealing with a teething/fussy baby and a bag of chips gets spilled on the floor I can't help but get angry and raise my voice. Today Livia bit me, and this is not typical behavior from her. I hate to say that Jake is the one that she tends to bite and be more aggressive towards. When Liv bit me I was so shocked, and hurt, that I swatted her mouth. Not hard, but enough that it shocked her and she cried. All day today I've felt like every time I'd get after her, and she never really did anything real bad, but I'd feel extremely guilty for disciplining her. I know that in the back of my mind I'm thinking......please don't remember me like this. Don't let this "good time" in your life be memories of your mommy getting mad at you. As I write this I feel really stupid about having these thoughts. We hardly ever have days like today. Most days are spent laughing and having a good time. We did laugh today, but I was in a bad spot all day. One of my biggest fears is that one day I'm going to look back and have regrets. I desperately want to make Livia's and Finley's life precious, meaningful, important and memorable. How do I find the balance and not feel guilty when I have to discipline Livia? I know this phase will pass when Finley isn't so needy, but I don't want her baby phase to end. I desperately want to hold on to this time. I think this is why I have my bad days. My mind and my needs go so back and forth. Having this helpless and out of control feeling is a bad emotion to have.

I miss my family terribly. I miss my friends that I don't get to see. I even miss my friends that have chosen to step out of my life. This pains me so bad. I wonder so often how it can be so easy to just ignore. I cry about it more than I'd like to admit. However, it fuels my fight and ironically gives me inspiration.

I needed my mom so bad today. I desperately wanted just time with her. No kids, no husbands, just her and I. I can't even remember when the last time just the two of us had time together. I have a special relationship with both of my parents. I view them with so much respect, yet since they got divorced they are different people. They are still my mom and dad, but its taken time for me to learn how to handle a divorce as an adult. I see them differently than I did when I was a kid. Not bad, just different. I know them differently now. I love them both so much and want nothing more than for them to be happy. OK, how did I get off on this subject? I love you mom and dad. I miss you and Audra so much it hurts. I miss our family. Some of my best childhood memories are 4th street and the farm.

Ultimately I know tomorrow will be a better day. I can reflect on today and learn what I don't want to do tomorrow.

Yesterday is but a dream, tomorrow but a vision.
But today well lived makes every yesterday a dream of happiness,
and every tomorrow a vision of hope.

Indian Proverb

Just one day...........at a time

We went to Children's Memorial today to meet Dr. Burton. When we first got Livia's diagnosis, the MPS society had recommended we see her. After the Disney conference, Jake and I decided that we needed to go see her because we are Livia's only advocates and we have to do what is best for her. We need to be on a course. Dr. Burton has mapped out a course that we feel good about. We didn't really learn anything new, but we do feel like we are a part of a team that is going to get things done.

I can't help but be really sad right now. I had such a positive attitude this morning about our appointment. I had a feeling that we were going to go see her and she was going to give us something new or by some miracle tell us that Livia was OK and some horrible mistake was made. I now think about that feeling and realize how silly I was to think that way. I'm not in denial about this diagnosis, its just that I want so bad to take it away.

Livia is such a trooper. Our apt. was at 1pm, nap time. She was a little grumpy with Dr. Burton, she just didn't want her belly poked. Dr. Burton kept telling Livia how pretty she was and that she LOVED her hair. I really like Dr. Burton. She was very positive and had a great southern accent! She answered our questions and mapped out a course that Jake and I feel good about.

Finley is also a little trooper. She was so good and slept comfortably in her daddy's arms while we talked with the Dr. I hope one day she knows just how important she is in all of this. We are so lucky to have her, she really is a miracle. I have to figure out how to keep life "normal" for her. I have to make sure she feels special and important. We are going to have so many issues to deal with with Liv. I pray that Finley is patient. I pray that she is happy and loves her life.

It's not often that I want the day to end. My grandma once said to me that she thought the days were long for me. They aren't. The days go by so fast, and I often dread the night and dread going to sleep. Not today. I'm ready for tomorrow to be here. I'm ready to start a new day with the hope that I can find it within myself that positive person I desire to be. I need to get on that treadmill and run this pain away. I hope tomorrow I find inspiration and strength. I take it just one day at a time, tomorrow will be a good day............that is my goal.

Devotional

Our dear friends Stefanie and Justin sent us a new Devotional that Jake and I started Jan. 1st. The title of the devotional is "Streams in the Desert" by L.B. Cowman. Tonight's devotional hit home for me. It was a reminder that we must have a living grace in order to do life's work and calling.
I have a hard time putting aside thinking about our future. This can impact me in bad ways. It can consume my thoughts and make me worry about unknowns. I know I shouldn't do this. No one knows what their future holds. Another friend of mine who has a child with MPS just emailed me and said something that I already knew, but brought my attention back to this. MPS affects everyone differently. Who knows, a treatment or maybe even a cure could come along in Livia's life. This devotional reminded me that no matter what goes on in my life, God will be there for me and my family and He will lead us down the right path.

"When you pass through the waters"
Deep the waves may be and cold,
But Jehovah is our refuge,
And His promise is our hold;
For the Lord Himself has said it,
He, the faithful God and true:
"When you come to the waters
You will not go down, BUT THROUGH."

Seas of sorrow, seas of trial,
Bitter anguish, fiercest pain,
Rolling surges of temptation
Sweeping over heart and brain-
They will never overflow us
For we know His word is true;
All His waves and all His billows
He will lead us safely THROUGH.

Threatening breakers of destruction,
Doubt's insidious undertow,
Will not sink us, will not drag us
Out to ocean depths of woe;
For His promise will sustain us,
Praise the Lord, whose Word is true!
We will not go down, or under,
For He says, "You will pass THROUGH."
Annie Johnson Flint

I hope we can pass through this with our heads held high. I hope we can sustain this pain and unknown with the trust that we will not sink. My hope is something that inspires me to make it through each and every day.

I love you Livia, I love you Finley..................both of you have brought so much love into my heart it hurts. You both have created a new life for me. I wouldn't trade this life for anything. Having the two of you is a dream come true. Not only is it a dream come true, but you have helped create new dreams. Through all of this we are going to do good.

Opportunity

Livia's diagnosis has created a new life for us. A life that has opened our eyes WIDE open. It has also brought many opportunities. These opportunities have ranged from small moments to big trips like going to Disney, to newspaper articles, to barn quilts, to prayer blankets and dolls, to meeting new and amazing people and to opening our hearts to this world we live in.

Disney was such a whirlwind of emotions. I was so incredibly nervous about this trip. I wanted to go so bad because I wanted all the info I could get. I wanted to meet some of the people face to face that I had been corresponding with over email and phone. The nerves came in knowing that we would see children in later stages of this disorder, and I didn't know how I was going to handle it. I didn't know how I was going to simply address these kids. We got to Disney on a Tuesday. We met our wonderful friend John who lives in Tampa for dinner Tue. evening. It seemed like every child that walked or strolled by me I was looking at wondering if they were affected by MPS. I wanted so badly to "put it away" and just enjoy my time with my family at Disney, but we were there because of MPS and we were there to become aware. It was so much fun to watch Liv in an environment like Disney. She didn't have to be in a car seat in any of the buses, shuttles, etc. She really enjoyed that freedom! We went to Magic Kingdom on Wednesday and Animal Kingdom on Thursday. Thursday evening our reality was thrown right in our face. Thank goodness we were with Stef and Jut during this "breakout session." We had started seeing children around the resort, but didn't know exactly how they were affected. During this breakout session, all the different types of MPS went to their designated rooms for a meet and greet and to ask questions. The four of us, all newly diagnosed, walked into this room with families whose children has a terminal non curable disorder. Talk about nerves. We chose to sit behind a family that has a daughter and a son both affected in the late stages who are both wheelchair bound. There were children in all different stages. We heard questions and answers about things we probably weren't ready to hear. We heard about people's situations that are far off worse than ours. Jake had a hard time and had to excuse himself from the session. We just ended up leaving and finding our girls and moms and enjoyed Mickey's Magical Christmas. I often wonder how I don't go crazy with these up and down, in and out emotions. Writing this I can't help but snicker that I was at one of the happiest places on earth talking about our dying children. Friday was my birthday and our all day conference. Mom and Cindy, bless their hearts, took the girls for us and stayed at the resort while Jake and I were at the conference. I left the conference a couple times to feed Finley. It always worked out that I left during a break or during a session that I really didn't need to be at. We did learn a lot, and my science brain kicked on and I learned some really interesting things. We also learned that money rules the world and we are in a waiting game. Clinical trials for MPS II are starting within months, and if all goes well and good results occur then they will start trials for MPS III A specifically. I'm hopeful for this and can only hold onto that to get me through this. I want to say that meeting some of the MPS III kids that are in the middle and late stages I had somewhat of a peace about it. I talked to them, held their hands, and showed them the respect that I would want someone to show my daughter. I wanted to scoop all of them up and make everything better for them. Friday evening was a great dinner with the moms and then Jake and I met up with Stef and Jut for a night out at down town Disney. Saturday was our departure day. I am glad that we went. I'm so thankful for the families that we got to meet. There are some AMAZING people out there who have encouraged me and fueled my fight. I feel better being home and getting back into our routine. I'm aware of MPS every single day. But it's different when we are in Hubert world. Livia is such a bright spot in my world. She is an amazing child that has brought opportunities to my life that I didn't even know were out there. We've made life long friendships that are to be cherished. I've become a stronger person not only mindfully, but spiritually and even physically.

I have to thank my mom and Cindy for going on this trip with us. It would have been very difficult without their help. It was also really nice to make memories with them and enjoy the fun aspects of the trip. I also have to thank everyone that helped us financially with this trip. We could not have gotten to this conference without help. Everyone that chose to help us were very generous and loving. Thank you from the bottom of my heart.