Reminder

Today is day 6 away from my girls. This past Saturday, Jake drove the girls half way to meet his mom and dad to drop off Liv and Finley for the week. Tomorrow, Jake and I will drive to central Illinois to meet them and stay home for another week. This past week has gone really fast. The anticipation of "getting a break" from the everyday schedules and routines was very exciting. I was looking very forward to getting my own time, getting things done, spending time with Jake, and eating meals in an un-hurried fashion. I started to miss them on day 2. I realized that as hard as my everyday life can be, I wouldn't trade it for anything. My girls bring so much joy to my life. They really give me purpose and drive. When they aren't here, and I have so many ideas of things I'd like to do, I catch myself sitting on the couch watching a movie. Now, this is nice to do occasionally, but not day after day. I have gotten a lot accomplished with the foundation, with help and direction from Ed. This is different. When it comes to the foundation, as hard and overwhelming as the work can be, I've never been so determined and focused to accomplish something as I am with Liv Life. I know this is my calling. To be completely honest, when things were hard or confusing to me in the past, I'd find any excuse to run from it. I never had the confidence or know how to want to figure out what I didn't understand. Typing this and re-reading the previous sentence make me really sad and embarrassed. On the other hand, it gives me complete confidence and reassurance that I'm doing what I should be. I've never been so "on a mission" before this. Not only with the foundation, but I'm learning how I want my children to be raised. I'm reminded that God chose me to be Livia and Finley's mom. God chose me to start this foundation. I feel affirmed. I'm also reminded how much I love my girls. I don't like or want to be away from them. They both bring unique newness to my life, if that makes sense. I've heard people say that they relive their life through their children. I feel like my children have given me new eyes. I see and feel life differently because of them. Just like with the foundation. I would have NEVER, in a million years, thought I would be running a foundation, and liking it. Writing a blog and hearing that my words impact others. Even being a mother. This isn't how I imagined motherhood. Honestly, it's better. It may have more work and more heartache attached, but it's mine and it's comfortable. This break and reminder has been great. I appreciate this time to gather my thoughts and re-focus. I'm so excited to see my girls tomorrow. I'm excited to keep working on the foundation. I know good things are in store. Be reminded that a break is sometimes all you need!

Volleyball Benefit

Our cousins, The Black's, organized a volleyball tournament to benefit our family and help with some of our medical expenses, bills, and costs. They put in a lot of hard work organizing the tournament, getting prizes, food, and of course players! It was such a wonderful gesture of help and love. Unfortunately, Livia got sick once we were at the tournament. She, myself, my mom, and Finley left shortly after we arrived at the Mad Hatter tournament. Jake was able to spend the day and was even able to step in and play, which I know he thoroughly enjoyed. We had a lot of family volunteer their time to help that day. We want to thank everyone that organized, played, volunteered, donated, and helped out. The money that was raised at this tournament is nothing but a blessing and we are so appreciative of every cent. It will help us to pay a few of our medical bills. Please watch this short video that Glenn Black put together from the photos that he took during the tournament.

Volleyball Benefit from G Black on Vimeo.

7/8/09

7/8/11 marked our 2 year walk with Sanfilippo. It's hard not to re-live that day. It's hard not to re-visit those emotions we experienced. It was devastating. However, I also remember our friends and family that rallied around us. Finley was baptized soon after we got Liv's diagnosis. I can remember sitting in church, tears streaming down my face, and Jake making the announcement to the congregation. I felt all eyes on us. I remember the accapella group, Sweet Adeline's, signing that day. That was the first time I started "feeling" music. Shortly after that date, we had a laying of hands on Livia at George and Cindy's house. I'd never experienced anything like that before. It was comforting to have our family surround us during such an unsure time. Susie Burwell, our pastor's wife, gave Livia a painted stone that came with the word "healing" on it. This marked the beginning of Livia receiving prayer shawls, blankets, dolls with knitted clothes, angels, books, cards, and other things that I'm leaving out. The point is, it marked the time in our life when everything changed. We had to start living a new "normal." Our focus changed for our children. Our Faith started taking the wheel, and the words compassion, perseverance, generosity, patience, and determination took on entirely different meanings because we were and are........ LIVing it.

This 2 year Dx day, emotionally, is hard for me. As much as I'm fueled to fight for Liv's Life, the everyday mommy can't help but re-live that heart ache. As much as I wish I could take this away from my beautiful baby, the fact is, I can't. However, I can take care of her and give her everything I can. I want to provide a life for my girls that will make a mark in their legacy.

Embrace

It's once again the little things that mean so much to me. Nowadays, it seems like I'm constantly observing. I'm a "watcher" by trade. It seems that I intently, and constantly, am observing what my children are doing. I especially keep an eye on them when we are out of our comfort zone (our home). I'm so nervous when we are out in public, at someone else's home, or somewhere that Livia can get into something she shouldn't. I'm also very nervous when she interacts with other people. I'm nervous about how they will respond to her. I'm always very quick to explain to people that may not know Livia or her situation that she just doesn't understand personal space. You see, Livia is very loving and affectionate. When she likes someone, she's hooked! I'm always so grateful when someone pays Livia the attention that she is looking for. When someone takes the time to play with her and talk to her like any other child, is golden. It warms my heart so much when I see compassion come through and I can step back and let Liv be who she wants to be. To see my child embraced for who she is, is all my heart desires.

Balance?

Today I took Finley to her 2 year well baby appointment. A little late, but none the less, we got the appointment done! It was really nice spending some one on one time with her. I have to say, her personality is getting better and better. She is hilarious, and I think she knows it. Anyway, as we were waiting in that child friendly waiting room, I was filling out the questionnaire about your child's development. I was breezing through it, reading some of it to Finley (her latest favorite line is "what are you doing?") and it took me back to when I had to fill out the forms for Livia. At the time, I didn't know any better, but today I can remember sitting in the waiting room filling out the form for Liv questioning some of the questions. Asking myself, does she really do this? Well, kinda........ maybe? I think I've seen her do that once. I just thought it was normal to have to think about the questions. With Finley, there were no questions. So then the appointment. Our nurse practitioner, D, who also see's Liv, came in to greet us. Finley was so excited to see her and insisted we were there for a haircut, not a Dr. appointment. D asked Finley a series of questions, usually laughing after Finley's response because it was so on point and cute. She had Finley perform a couple tasks, like drawing some shapes and making a light go on certain spots that D cued. After this was all finished D told me how advanced Finley was for her age. She said that her speech was way ahead of where it should be. She told me that the tasks Finley were able to accomplish, most 2 year old's could not. She then said that Finley was extremely intelligent and I should be very proud of her. Finley then told D that we were going to go have Red Mango. It was a very good appointment and made me feel extremely blessed and fortunate. It also made me think about the balance in my life. Balance? A state in which opposing forces harmonize. Now, I, by no means view my girls as opposing forces. However, I couldn't help but reflect on these two very different Dr. appointments that I experienced this week. I felt like I was on both ends of the spectrum with them. Livia, who is developing well, but differently, and Finley who is ahead of the game. I couldn't help but think about balance. Imagine a scale. One side of that scale says MPS. The other side says typical. I thought about how my life would look if the scale only had MPS on one side or vice versa. If the scale tipped with only "typical", how would my life be right now? Would I be recognizing and celebrating every small development that Finley is making? I'm talking about the things that people might take for granted like using silverware, blowing bubbles, walking by my side in the store without running away, throwing away garbage, chasing butterflies in the backyard, or initiating our "beautiful" game. This is hard to say, but, I wonder how mindful I would have been with everything. Would I be living everyday with such purpose and drive? I wouldn't get to feel what raising an angel on earth feels like. To know that my 4 year old is changing lives in her own special way. What if the scale tipped with only MPS? Would I have as much hope and faith? I know I would still have the strong drive to make our foundation a success. Would I be afraid of the future? I wouldn't get to know what typical feels like. To know how blessed I am to have a miracle like Finley and watch her grow in a typical matter. I guess what I'm trying to say is that I feel like my life is balanced with having Livia AND Finley. I get to experience things that most people don't. MPS has balanced my scale by giving me patience, faith, compassion, and love. Typical has balanced my scale by bringing normalcy, perspective, hope, and love. I'm sure the scales in my life will be asymmetrical at times with both aspects having the ability to bring that balance back. Each of my children bring a lot to this journey of life. I feel like I'm in a unique place and God has intended for me to find this balance.

Romans 12:2 "Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect."

My prayer today will be the same as always, that God's will will be done. I pray that someday I hear as said in Matthew 25:23 'Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master's happiness!'

A good report

Livia and I ventured into Chicago today for her every 3 month check-up with the geneticist. Liv was in a great mood, and I credit that to having some one on one with mommy, the sun shining, getting to watch what she wanted on the DVD player, and a little singing with what mommy wanted to listen to on the radio! Going to the geneticist for a "check-up" is like going to the pediatrician. They check her in, we wait in the child friendly waiting room, get called back, check height, weight, bp, pulse, respirations, all the norm. Questions are asked about how she is doing and if we are noticing any changes. I had nothing to report. I put a urine bag on her to catch a sample while we were there. (I guess this may be out of the norm, but it's norm for us). I casually talked with the genetic counselor about the latest MPS research. Dr. Burton came in and doted over Livia, like always. She always says how pretty Livia is and how lovely her hair is. It's so nice to hear. Having a Dr. that keeps it light and real is so refreshing and encouraging. We've encountered physicians, not many, but some, that treat my child like she is a number or just a patient on a piece of paper. This is not so nice. The appointment was short and sweet, and then we made our way down to the lab. Livia has to have her blood drawn at each visit to monitor how the Genistein is treating her system, monitor her overall health, and we send a sample to the UK for a study. Livia has never cried with one of these blood draws. I'm sure the numbing spray helps, but she's a trooper and is so brave. Being at Children's Memorial is not a place that I envisioned spending a lot of time. However, we do. There are a lot of people there at all times. Families that are dealing with some tough things regarding their children. I see all types. I see children that are non-functioning, have tubes coming out of every orifice of their bodies, children with no hair, and some that are just beginning their path of diagnosis. As parents, there is an unspoken, glance of the eyes in passing, of compassion. At least I feel this. Being amongst others who are going through something is somewhat comforting. A feeling of, I'm not alone. There is someone else out there who understands what I'm going through. Not that others don't show compassion to what we are going through, because we certainly have A LOT of friends and family that lend that support. It's another family who wants to take the time to get to know my child and not care that her Barbie's feet are chewed off. Siblings of affected children who have learned so much compassion in their own short lives that I admire and respect. Today, getting a good report regarding my child made our visit positive. Looking in the eyes of other parents going through tough times made me re-visit our blessings. I'll be saying an extra prayer tonight for those families going through some really tough times.

First annual Liv Life Golf Outing

This post is a little over due. The first annual Liv Life golf outing was June 20th. It was more than a success! My dad, Jim Fish, and step-mom, Carol Zuhone-Fish, were the organizers/prize-getters/phone call makers/event coordinators of this fund raising event. With all the hole sponsors, silent auctions, raffle tickets, and donations the Foundation grossed $12,000 and netted $9,000. This was so much more than we expected. Our goal was to get 18 teams and ended up with 16. The weather was so perfect for the day. The event was held at the U of I Golf Course in Savoy, Il. The day provided 18 holes of golf, lunch, 3 drink tickets, snacks, gift bags, dinner, and a t-shirt. There was a chance to win a car with a hole in one. Unfortunately, no one won. We had A LOT of items donated for prizes, gifts, and the snacks were donated. We had an awesome banner donated to the foundation. I think the event was really well organized and generous! Thank you to dad and Carol for all the hard work, phone calls, meetings for prizes, etc. This was such a generous thing that you planned for the foundation. We look forward to having the event annually! Thank you to the Black girls for watching my girls that day. I wouldn't have had the opportunities to speak with people and sell tickets without your help! You ladies rock! Thank you to all our friends and family who gave their Friday to volunteer at the outing. Thank you to all the hole sponsor's, donor's, and businesses who gave money, time, or prizes. This was another great example of people's generosity and kindness. Keep an eye out for upcoming events and fundraisers! THANK YOU!!! To view the photos from the outing, please visit HERE You will have to create a sign in and password.