Pampered Chef

We are hosting an Online/Catalog fundraiser for Liv Life Foundation. Donations of up to 25% of the fundraiser's total sales & a $3 contribution for each Show booked from our fundraiser will go to our organization. Visit the link below or let me know if you want to look at a catalog. Show closes Oct. 21st. Stoneware is on sale!!!

PAMPERED CHEF ONLINE ORDERING

Stone Bridge

This week marks 15 weeks of training for Stone Bridge Marathon. October 8th is the day for 26.2. I'm actually getting very excited for the day. Who would have thought? I think I'm most excited about accomplishing this and crossing it off my bucket list! I couldn't have done all this training alone. I've had the privilege of training with my friend, Ed. He has been such a support, encourager, and mentor not only in this marathon training but also with Liv Life. I can't thank you enough, Ed, for all your hard work and heart you've put into training and the foundation! I'm so thankful our paths have crossed and this relationship has been formed! I couldn't have done this training or half of the foundation "stuff" without your input and knowledge.



So, on Oct. 8th, come out to Belvidere, Roscoe, and 26.2 miles in between with all your Liv Life gear, posters, etc. to cheer us on! We'd love to see the support along the way.

I Have to also give a shout out to Jake for all the support and encouragement he has given me during this training. You are my biggest fan and love that you support all my endeavors! I'm lucky to have such a supportive spouse! I love you!

Making up?

Since Finley has become verbal, she knows what she wants. Deep down, I really love this about her. It can be very hard trying to compromise with an extremely strong willed 2 year old that talks well, at times. One of her favorite things that she says to me on a daily basis is that she "want to sleep my momma." She's in a "big girl bed" and we've been really lucky with an easy transition. Nap time, on the other hand, has been different. I think because she can see all her toys and books it's to tempting to stay in bed. So, when she started asking to sleep in my bed during nap time, I gave in. I usually get her to sleep (falling asleep myself for about 20min) and then walk out to get something done. Today, as Finley laid peacefully in my arms, rubbing my face I couldn't help but think about the time I was getting to spend with her. That moment in time. I was holding her like an infant. Cradling her and tickling her limbs to get her to rest. It made me reflect on the time she was an infant. That time that I didn't get to bond with her, because life was literally turned upside down. To this day, when I think about that time, a wave of nausea comes over me. So, am I making up for that lost time? Maybe. I know that I wouldn't trade our nap time ritual for anything. More than anything I want Finley and Livia to know how each of them are making an impact in my life. Everyday I learn something new from my girls and really learn something new about myself.

The Hubert's are most definitely dancing in the rain. With the occasional run for cover when we spot lightning, but hey, that's what keep's life interesting! Livia is in school and once again LOVING every minute of it! She loves riding the bus and I really think school is the best thing for her right now. At the end of the summer Jake and I were discussing that we thought Livia was regressing a bit. Well, I'm happy to report that since school has started, our Liv is back. She is more focused, using words, making more eye contact with positive facial expressions, and all in all more in tune with her environment. Now, if we could just get busy with finding that cure for MPS...HEY, Miracle Drug, by U2 just came on. Maybe it's a sign! I'm praying that Liv's Miracle Drug comes in time!

A punch in the gut

Yesterday was a really difficult day. I got the news that Rachel Ferguson, 9, with MPSIII A passed away peacefully in her sleep. 9 years old! This hit me like a TON of bricks. I'm part of a MPS group on facebook, so there were a lot of people giving this family words of encouragement and expressing their sadness for their loss. I saw a post from another mother who lost her 7 year old. 7?!? It's not like I've not known of other children passing from this, but for some reason it was different yesterday. I think, because we haven't had "bad news" in awhile, I was living our "normal" and things were good. I think part of our "normal" is living in a bit of denial about Sanfilippo. Not that I completely deny that Livia has this, just that I put it away and LIV day to day. Enjoying each moment. Yesterday, seeing this young girls beautiful face all over facebook and knowing how young she was, threw reality right back into my face. It was a punch in the gut that left me very frightened and aware. Aware of the fact that I really don't know how long we will get to Liv with Liv. How can I prepare for this? Does anyone know? Is this even possible? I can rely on my faith and give an eternal perspective, but it still doesn't make that worldly hurt go away. It's really just not fair. To be completely honest, I've been thinking about Livia's next birthday. She will be 5 in February. Most of the material or facts on MPS say that life expectancy for children with this disorder is 10-20 years. This next birthday will mark half way to what could be her life expectancy. What parent is suppose to even think about something like this? It's horrible and it's something that goes through my mind. Now I know, and many people are thinking this, no one knows how long we have. But reality is, I have a glimpse of Livia's future and I can't ignore it.

My heart and prayers go out to the Ferguson family. I'm so sorry for your loss of your beautiful daughter, Rachel. I pray that you find comfort and peace in this difficult time. Rachel was and is now an angel LIVing in peace for eternity.

Rachel Ferguson

Guest Blogger

I was asked a few weeks ago to be a guest blogger on another blog called Life After Sunday. I was so surprised, humbled, amazed, excited that someone, and a blog like this wanted our story. Part one is up now and part two to be posted on Thursday. This is a Christian parenting blog that is a part of a church in Boston, MA. Please take a moment to check out this BLOG <----- HERE, and maybe even follow it! Thanks for reading!

A stroll with my girls.

For those of you that know Jake and I and where we come from, you know that we are small town, country loving people. Jake grew up in the country his entire life. He and his family had a small hobby farm which I've heard a lot of the "critter stories." From him showing chickens to stories of his mom rescuing anything on the side of the road and the disastrous rides home with Jake and some wild animal in the back seat with him! Love you Cindy! I grew up in town, but on the edge of town. I had a corn field in my back yard. My grandparents are (recently retired) farmers. My grandfather use to have cattle on his farm, but my memories are just of corn and soybean farming. I have so many fond memories of being at my grandparents. I still to this day think it's one of my top 5 favorite places on earth. So, this is just a little background for this blog.

This past weekend, we went to central IL. for the first annual Liv to Ride poker run. It was hosted by the 4-Way-Saloon in Sidell, IL. My brother and sister in law, along with a lot of other hard working individuals put together this event with all the proceeds going to the Liv Life Foundation. It was such a fun day. We met a lot of fun and interesting people. New Twang City brought their band and played that evening. So, Jake and I and the girls stayed at George and Cindy's house while we were home. They live on at least 5 acres but don't know the exact amount. Sunday morning was so beautiful that I took the girls outside for some fresh air and to do a bit of exploring. The property has some restored prairie with a path to a pond. Typically we take rides on the path, but I wanted to just walk with the girls and our dogs. I had a moment while being outside with the girls. Finley was walking behind me pointing out everything she saw. She asked me if we'd see butterflies and what color the flowers were. Livia was ahead of me running with our dog, Lola. She was laughing and giggling so much. Let me back track for just a moment. Jake and I have noticed over the summer a few changes in Livia. She has been chewing a lot more and her speech isn't around as much. She's still talking, but we can't get her to say some of the things she use to. She doesn't point to pictures, as much, and tell us what she see's. So, back to the story. As Livia is giggling her way down to the pond, she would periodically stop and look back at me. She'd look and say "come on, mama....come!" To hear her laugh, watch her have freedom, and hear those words was an amazing moment. I say watch her have freedom because I feel like whenever we are out or even at someone else's home, I'm constantly corralling her or directing her where to go. It was so nice to watch her just run and do what she wanted. I was also amazed at what Finley could recognize and what she was telling me on our stroll. It was such a nice morning that I got to spend with my girls. It was one of those moments that made me reflect on where I came from. Growing up in a small town, I always wanted to move away. There had to be something bigger and better out there. I think this is probably a very frequent thought among small town kids. I so badly want to have that country life for my family. Mostly, I want Livia to have some freedom and be around what she loves the most (animals). Jake and I hope to provide that for them. I want to experience many stroll's like that and make great memories with them.

Because this is who Jake is................

My girls are so lucky to have Jake as their daddy. I always tell him that the girls constantly look for him when he's not around. Jake plays with the girls differently than I do. He runs through the house with them, throws them in the air, bounces them on his knee, dances to the Wiggles with them (ok, I do this one too!), and just plays and plays and plays. He will drop whatever he is doing to give them the attention they desire. I admire this so much about him. I find myself telling them, "in just a minute" OR "I need to finish what I'm doing, and then I'll play." Now, I know that being a stay at home mom I have things I have to do around here to keep this house functioning and I can't give 100% of my attention to them. I just love watching Jake with the girls. Here's an example.

Yesterday, Jake returned home after 2 days away at a conference. He got home around 3pm. He really needed to mow the lawn. Finley was awake when he got home and was so excited to see him. He changed his clothes and told us of his plans. Finley insisted that she mow, too! Jake said, "OK, let's go." I changed her clothes, put SPF on, and out they went. He asked her what mower she wanted to use, and on they went. It was so hot, and I was worried that they would get over heated. I came inside to get water and grabbed my camera. Here is what I captured. As you'll notice, Finley got tired pretty fast but really wanted to keep going. Jake could have told her that if she wasn't going to mow on her own, then she needed to find something else to do. But, because this is who Jake is...........he helped her, to keep her with him and happy. This was a sweet moment!