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