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.