Monday, June 28, 2010

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.

Thursday, June 10, 2010

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 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.

Thursday, June 3, 2010

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