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.