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?"