Thankful..............

Sometimes I find it ironic how I can be so thankful for my life. My thoughts often take me to really bad places. It's hard not to be fearful of our future.............however, shouldn't everyone be a bit fearful? I would imagine that a lot of people on the outside looking in on our life might wonder how we do it? I'm told often how strong I am. I'll tell you, I'm not always strong and I don't always want to be strong. This past month has really been a test of my strength. How many wrench's are going to be thrown at us until we catch a break? How much should one family have to endure? Heartache is not fun. You think your life is going to be perfect. No one teaches us how to prepare for or handle "situations." On the flip side, why shouldn't I be thankful? I have a family that anyone would be lucky to be a part of. I have the love and support of so many people. Our "situation" has made me grow as a person. That's something to be thankful for. I have two beautiful girls that motivate, inspire and teach me something new everyday. I can't help but be thankful. Life is full of choice's. I can choose to lay in bed and cry my life away, I can choose to die, or I can choose to embrace the life I have. I can choose to find the good in each day. I can choose to love with my entire being. I would much rather be thankful for what I have than be bitter and angry about it. I'm sure I'll have times when all I want to do is cry, be angry or question everything. I've come to realize that it is ok to do these things as long as I remember that I have a lot more to be thankful for than not. Today is Thanksgiving and I am most thankful for my family. I'm thankful for the person I am today. I'm thankful for our Lord and Savior. Without Him, none of this would be possible. I hope you can find what you are most thankful for and embrace it. Be with the ones you love the most. Be with the ones that make you feel loved.


For Audra...........I love you M2P.

Small gestures

My friend Stefanie described in her blog her "new normal." She also talked about the fact that the cards, emails, and phone calls are starting to fade. This is true at our house also. I was thinking about this the other day, and it made me really sad. I know we have a tremendous amount of people who think of us everyday. This is such a comfort to know people really LOVE us, especially Livia, and are praying for us. I don't know how people can walk this journey without the Lord. Anyway, just the time I was sad and down about not hearing from anyone I get a small package in the mail. In the package was a hand written note (which are priceless and touch my heart) and an Oprah supplement to the 'O' magazine (small booklet). This booklet was something Elizabeth, the friend who sent this to me, leaned on when her sister Amber was battling her fight with cancer. I can tell this booklet was a support for Elizabeth by the dog eared pages and the wear of the book itself. I was so touched that Elizabeth would share this with me. Amber lost her battle with cancer and is now with our Lord. Amber left behind a family of her own. 3 beautiful children, a husband, 3 sisters, and her mother and father. I think of Amber often, and her family. Elizabeth and I were childhood friends, and I have so many memories of playing and swimming with her. She was a year older than me in HS. Elizabeth and I were not close in HS. Our interests were different and our paths drifted apart. It wasn't until Elizabeth sang at our wedding that we really connected again. We emailed a few times, and during Amber's battle we talked a couple times. Elizabeth became pregnant with her daughter Isla and we talked a few more times. Elizabeth has always quietly been a part of my life. She is someone who has stepped up and is walking this journey with us. She is sincere and I look forward to her cards, emails, and small gestures. Thank you Elizabeth for being my friend. You couldn't have sent the booklet at a better time. There are so many people who deserve a Thank You! I only hope that one day I can pay it forward for everything we've received so far.

LIVs LUVs

I'm so thankful for Livia's imagination. She plays so well. I love to hear her reading, babbling with her dolls, and calling me to color with her. She has the BEST bedroom. Jake and George built a beautiful window seat/dresser/desk/shelf unit on one of her wall's. She has a really cool doll house that her grammy Karin gave her last year for Christmas. She loves getting in her closet and just pulling anything out that she can. I can't believe how much she can reach! Lately she has been pulling her Tinker Bell chair into the kitchen when I'm doing dishes or making dinner. She will pull the chair right next to me, climb up, and start helping me do whatever task I'm trying to complete. She especially loves helping me with the dishes. I think the soapy water has something to do with it. Staying with the "chore" theme, Livia likes to help me with the laundry. I will put her on the washer on her knees and let her dump the soap in. Then I'll let her fill the cap up with water and dump it over and over again. I even let her do the fabric softener. (Don't freak out mom............she CAN'T reach it on her own :)) Jake and I have been working with her to feed the dogs. She knows where the dog food is and we help her scoop it out and dump it in the bowls. She even helps us remember to feed the dogs if we are busy doing other things. I swear she knows when 6pm rolls around. She likes to get the swiffer out. She will push it around the floor. I SWEAR I don't make her do these things. She likes to do what mommy does! Livia LOVES horses, she really loves all animals. Livia spends most of the day in dress up clothes. There has been days that she wears a princess dress to the gym. She loves to watch dancing with the stars. She wears a dress and dances along with the show. She gets so excited. Its really cute. She plays head shoulders knees and toes, row row row your boats, and ring around the rosy. She loves You Tube. We have to limit the amount of time she watches. It all started with Beyonce's Single Ladies video (thanks auntie AuAu). Now it's Elmo, The Wiggles, babies laughing, and Charlie bit my finger video. I want to bottle all these moments up and keep them forever. I want to always hear her yell "MOM" when she wakes up in the morning. I always want to hear that laugh. When she smiles her eyes smile too! Livia has such a tender heart. She has wiped my tears away and held my face when I've cried. I don't like to cry in front of her because she is so aware of it. When she looks in my eyes and says "mama cry," I have to stop. She is an angel and I THANK GOD everyday for her and Finley.


Finley is growing and changing so fast. I can't believe she is 6mos old. I don't remember my little baby. She is eating solids now, sitting up almost on her own, and cutting teeth. She LOVES Livia. Finley has only belly laughed a few times, and those times have all been when she is watching Liv. I think Finley is going to have hazel eyes. Both she and her sister have the prettiest eye lashes. Finley is a special girl. I feel a special connection with her.

Do unto others

The family and I were in Central IL for yet another weekend. Jake was inducted into the sports hall of fame at Heritage HS. It was a lovely evening to meet the players and see old friends. I'm so proud of my hubby. It's always so nice to hear everything he has accomplished.

For some reason or another, this weekend was very emotional for me. I was brought to tears on many occasions. I find it amazing how some days I can let things roll off my shoulder or not dwell too much on my "haunting thoughts," and other days things seem to push the dagger in just a little farther.

We went to a harvest lunch at church today. I cried all the way there. I must have had an inclination of the emotions to come. We have so much support and concern from so many people. It really is a comfort. I appreciate the things people have to say to me. I'm glad they are taking the time to say things to me even if I am a weepy mess. I'm able to reflect later on these people and the things they have to say to me. I know its hard to know what to say, I don't think I'd know what to say to me. I know I had mentioned in one of my previous posts about regret and not saying important things to people in hard times. I have to tell you a particular case of this that happened to me today. Let me start with a little background info. When I was in HS. a girl in my class named Tara was in a very bad car accident. She was on her way home from play practice, and I was on my way home from softball. I was the first to come upon her rolled van. Tara had been reaching for her cell phone that was in the passenger side of her vehicle and took the van to the right side of the road, into a ditch that caused the van to roll and came back onto the road and was laying on the drivers side. I immediately got my cell phone out and called 911. I ran to her and was able to see her and talk to her. I asked her what her parents phone number was and called them. Mind you we were in the middle of no where Broadlands, IL so it seemed like an eternity for anyone to get there. Another car did stop, but I don't remember much about them. I turned my focus on Tara. I was able to crawl into the van to get close to her and hold her hand. I remember talking to her about prom. I don't remember Tara crying a lot. She was really strong. She kept telling me that her neck and back hurt and that she was sleepy. I knew to just keep talking to her and calm her. I rubbed her forehead and thought of the most random stuff I could to keep her occupied. Once the ambulance got there I had to step away. I can remember wanting to stay with her and just hold onto her hand. More cars had shown up than I realized. People were standing in the corn fields watching from a distance. My dad came. At some point I did call my parents and tell them what was going on, but I don't remember making that call. We stayed until they got Tara out and helicoptered her away. I remember making eye contact with her when she was on the stretcher. I yelled to her that she was going to be ok. I went to visit Tara a few times in the hospital. I remember the first time I went to see her. She couldn't talk. She would blink once for yes and twice for no. She smiled a lot. Tara is a quadriplegic. I can't tell you the last time I've seen her. I do think of her often. I see her grandparents at church. Today, her grandma came up to me while I was feeding Livia. She talked to Livia, asked how we were doing, told me that she kept us in their prayers. I then asked her about her family and specifically about Tara. She told me that Tara got to go to a concert recently and was so thankful she was getting to go to Springfield for something fun and not for surgery. This touched my heart and I was starting to cry. I told her that I think of Tara often. Louise put her hand on my shoulder and said "you know, I think you were the one who saved Tara's life." I lost it. Louise walked away and that was the end of our conversation. I didn't do anything but be a comfort to someone in need. Tara was in a situation that no one ever expects to be in. She didn't need to be alone. If it were me in that van I would hope someone would stay by my side. I only did what I would have wanted. Nothing more. We all need someone to stand with us. I thank you Louise for saying that to me.

God's Grace

I see God's Grace in the faces of my children.

Being a parent is the best thing that has ever happened to me. It's also the hardest thing I've ever experienced.

I feel like I can say I'm proud of the person I am today. I've made decisions in my life that I wish I could change, but I believe those choices have helped mold me into who I am.

I need to surround myself with positive people. I'm a positive person and negativity is my kryptonite.

I've never felt closer to God in my life than I do now. I can't imagine going through this life without Him and His love. I'm able to lift it all up to Him.

My views and thoughts on so many issues have changed. I want to do so much in my life. I want to help people, I want to feed children, I want to make sick children smile.

There is good in this world. So many people are so generous. I want to be like that. I know one day I will be able to pay it forward.

I know what I don't want to be like.

Don't put off for tomorrow what can be done today.................I really like this saying. I really despise procrastination.

Keep an eye out for more to come! Thanks for reading.

New Friends

This weekend Jake and I had the privilege of meeting the Boyce family "in the flesh." We had them to our house for dinner. What an amazing evening. Jayden and Livia played so well together. It was so much fun listening to them laugh as they ran up and down our hallway. Both of them have a contagious smile. Jake and Justin are both big kids and got in on the action! Brooklyn is a sweet, petite little baby. I loved the little bow in her hair. I felt an instant bond and connection with Stefanie. She is a beautiful and inspirational woman. Both she and Justin have an awesome Faith. Our conversations were so easy. It was really nice to talk with someone who absolutely gets it. I know we will have a friendship that lasts a life time. Not that it makes any of this any easier, but it helps to have another family who is close in location, close in age, and has kids about the same age.............oh yeah, and has to live this MPS life. Thank you God for letting the Boyce and Hubert "paths" cross. I'm so grateful to You for these wonderful people. Thank you for our beautiful children. They are teaching us how to LIV a purposeful and love filled life. A life that isn't just going to pass us by. We are LIVing life with our eyes WIDE open.

We've made the decision to go to Disney in December to the MPS conference. Some of our family members are graciously helping us financially with the trip. This will be a great opportunity for us to meet other families and to learn more about this disease. I am excited about the trip but I'm nervous because I know we will see other children who are farther along in their journey. This will be hard to see. I know God will be by my side and help me through this. On the other hand, I am excited to meet these children and learn about them. We found out that the Boyce family will be on the same flight, and we are going to the parks on the same days. What a coincidence!

I'll post pictures from the weekend hopefully tomorrow. I made it upstairs without my memory stick. Not to mention Livia is in bed with us right now not wanting to sleep. She keeps pointing at the TV saying "toons" or "TV." Hopefully we will get some sleep now.

Verge of Crazy

I slept on Finley's bedroom floor last night. She started getting a runny nose and wasn't sleeping well. I refused to bring her to bed with me when she was only in her own for 2 hours. The only way I got her to sleep was on her belly. I know...........a big no no. So, I took the papasan cushion in her room and like a bundle of nerves I laid by her crib listening to her breath. She survived. Well, now Jake is on the couch with her letting her sleep on his chest. What a guy. I really should be sleeping.

Today was definitely a test of my patience. I hate to say this, but I kinda understand why some women (mom's) snap. Don't get me wrong, I've never once thought of hurting my children but I have thought about giving them to anyone who will take them...........but only for a few hours. I would want them back! It's hard not being around family. I've had days where I've desperately wanted to call my mom, sister, gma, and just say I've had a bad day, can you please come over. I wish I had that. There's been days when I just need a shoulder to cry on or someone to listen to me. Days when I just need a stinkin' hug. We thought about moving home after we got Liv's diagnosis. Right away we scrambled to think of jobs back home for Jake to apply for. I even thought I could go back to work part-time at the surgi-center and Cindy could watch the girls. We decided not to make any BIG decisions so spontaneously. There might be an opportunity for Jake to get an elementary principal position in the district he is currently in. This would be a dream come true for him............and me. Hopefully we will know something soon!

Anyway, back to my day. I remind myself constantly that Finley won't be so needy forever. It's hard for me not to be able to play with Livia much during the day. Thank Heaven's she does play so well by herself. She's got a great imagination. Her favorite thing to do right now is play dress-up. She also likes pretending she is a puppy. Her all time favorite thing is reading and looking at books. I love that she can "read" some of her favorites. I put read in quotations because I know what she is saying and she even does some of the playful things Jake and I do while reading to her. I can be so stressed out, leave for an hour or two (while Jake has the girls of course), come home to a smiley baby that is so excited to see me and a little brown eyed girl who shouts MOM when I walk in the door like she hasn't seen me for years. It makes all my stress go out the door. It also helps to have a husband that is concerned for me and makes sure my needs are met. I love you Jake, you are my guardian angel!

We are meeting the Boyce family tomorrow. I am so excited to have them over to our house. It will be nice to meet them in the flesh!! Stefanie and I have talked once on the phone, and email back and forth. I follow her blog as well. They have a 3yr old, Jayden and a baby named Brooklyn. Both of their children have been diagnosed with Sanfilippo. Stefanie is from Rockford, so they visit her parents often. Stefanie has an amazing Faith, and just from what I've read from her blog, she is a strong woman. We will be going through a tough journey in our lives, but maybe having someone to relate to and be able to understand exactly the thoughts and feelings we are having will help.

I better turn in. Big day tomorrow. Run 8miles, clean, make brownies, play, and hopefully catch a nap.

This is the day that the Lord has made; let us rejoice and be glad in it! (Psalm 118:24)

Just Fine

I added a new song to my playlist on my blog by Mary J. B. called Just Fine. This song has been on my ipod forever! I was rearranging music on my playlist that I run to. I added this song because it is so up beat and I love the words. This song is my theme song. While I was running today this song came on and I nearly lost it. The tears started to flow and I almost lost my focus. I had to remind myself that I am............Just Fine. I have to remind myself of this often. My thoughts can be really harsh. Will there ever be a day that I don't feel this dagger in my heart and have to fight with the thoughts that come to mind? OK, OK, enough already...........find that focus................my girls...............hearing their laughter.............having a good day with them............LIVing in the moment.

Clarification

I have to correct something that I posted in my last entry. When I was talking about my mom talking behind my back, I was referring to a situation not that I felt she was talking behind my back. She really was standing behind me talking to someone. I do not want to discourage ANYONE, especially my family from explaining our situation to others. This is not what I meant. I was trying to explain that it is hard for me to know if people are talking about our situation, or when people look at us and start talking if they are chatting about Livia. This is something that I'm going to have to work on myself, and get over. I'm so sorry for hurting any one's feelings. This was not my intention AT ALL! Sometimes my thoughts drive me crazy. I love you mom, and you are such a strong support to me.

Halloween and more

What a weekend! Jake, Livia, Finley and I traveled to central Il on Friday afternoon. Jake took half the day off, so we were able to leave by 1pm. We celebrated with the Hubert's that evening with a nice dinner at the Possum Trot. Grandma Cindy is retired!!!!! YAY! I know she will really get to enjoy all her free time with projects around the house, knitting, sewing, and visiting all her kiddo's! Both of my girls were so tired during dinner. Livia was good, but little Finley screamed most of the time. Poor things were both in clothes that were too small for them. A lot of my neighbors have given us hand-me-down clothes (which is the greatest thing in the world) Becca (my running and pilates mate) gave me an outfit that her daughter wore for pictures for Finley to wear. The outfit is so adorable I wanted her to wear it at least once. The outfit fit except the pants came up to her knees. I didn't know how bad it was until I got her out of her car seat already at the restaurant. My mom and Jake's mom got the girls dressed and told me that the clothes were too small. I just shrugged it off because we had to get going. Oh well, we survived. Thanks Becca for the cute outfit, at least she wore it once!!!!


Saturday we went into Champaign to take the girls to see Jake's grandma geegee, and my grandma Fish. Livia was dressed as an Illini cheerleader and Finley had a onesie on, from Becca, that said baby's first Halloween. The visits were very nice. Livia was a little scared at the nursing home, but my grandma was so happy to see us. We then went and had lunch with my dad and Carol. It was great to see them as well. The girls got really nice trick or treats from them. Saturday afternoon we went trick or treating to my mom's house and autie AuAu was there too! Livia had a costume change and was now in her lion outfit. Finley was now a chick! Allison, Alexa, Patti, and Grammy all came over and then we went to trunk or treating at the community building in Homer. It was very cold and windy, so it didn't last long.

Sunday, today, has been such a long day. The time change is so weird, and hard to get use too. Even though I've been doing it for 28 years! Maybe it's different because I try so hard to stick to a schedule. Anyway, we had the Franzen Thanksgiving/family reunion today. It was nice to see some familiar faces. I had a bit of a hard time at the reunion. It's hard to hear the "whispers" of people talking about our situation. I don't mean this in a bad way by any means. It's just how I'm describing it. I know a lot of people know what's going on with our family, but I don't know who knows and who doesn't. It's hard for me to hear my mom or anyone talking about Livia behind my back when I'm sitting just inches away. Again, this isn't intended bad and I'm not mad at you mom. I just wish people would talk to me or feel like they can approach me about our situation. I'm sure people don't know what to say..........what do you say. I try to put myself in other people's shoes and think if roles were reversed. Before all of this happened to us I probably wouldn't just walk up to someone and put my hand on their shoulder and talk to them about their daughter's terminal illness. But now.........you better believe I would do just that. It's so much worse to hear people talking about you and not too you. I know this doesn't always have to be what people want to talk about. I understand that and I don't always want to have to talk about it. There are a lot of good things to talk about too. I want to be approachable and I don't want people to be afraid to talk to me. One of the hardest things to deal with, along with all of this, is feeling like you've lost friends. There has been a tremendous amount of people that have come forward to support us, listen to us, cry with us, and just love us. People that maybe we were connected with in the past and people that have always been in our life. There are people who I thought would be there who aren't. This is so heart breaking to me. I try not to let it bother me, but I have shed tears because of it. I think I'm so sad about it because its people who I really love. Friends who have been friends for many years. There is a section in the book "Holding onto Hope" that spoke to me when it comes to friends. It is the Comforters section. One paragraph that has really helped me says "If you and I want to be free of the bitterness that estranges us from others and eats away at our own struggle to find joy again, we are going to have to forgive and pray for the friends who have let us down. They might not deserve it. In fact, they probably don't. But then, we don't forgive people because they deserve it; we forgive them because we've been forgiven so much by God and because we want to keep in close relationship with God. And the benefit is that through forgiving, we're set free. When we are able to accept what others have to offer in out time of sorrow, as well as their limitations, we are no longer bound by our expectations or embittered by disapointment in others." I do forgive..................and I do love you! I ask for your forgiveness also. I know I can always make improvements to myself to be a better friend.

All in all it was a good weekend. I love my family and friends so much. I'm happy to announce that our shop for a cause fundraiser through Macy's brought in a total of $1,635.00 for MPS research! Thank you to everyone for their generous donations. Thank you to Jake, Karin, Audra, Jim, Grandma Diane, Cindy, Heidi, and Jenn for helping sell the tickets. You all have a special place in my heart. I love you all so much.