Worse off than me?

All I've wanted to do this week is sleep. I've been very tired, and I've been successful with actually falling asleep. I've been able to sleep during the day when the girls rest, which is very unusual for me. Sleeping at night has not been a problem at all, and I'm ready to sleep at 8pm after a nap in the afternoon......which again is unusual since diagnosis. I'm thinking that this may be one of the many coping mechanisms that I have and will experience since Livia's diagnosis of a terminal disorder. Some of the other coping mechanisms that I can recognize are; running/exercising, not eating, art, eating in an unhealthy manner, sleep, no sleep, avoidance, and creating our foundation. Not all of these are bad, but some certainly are. We all have bad habits, right? I think I may be experiencing another stage of the "stages of grief." There are different models out there of what the stages of grief look like. One of the most common list's the stages of grief as 1. denial 2. anger 3. bargaining 4. depression 5. acceptance. When you experience grief, apparently you follow this list as your emotions of dealing with a loss/tragedy/significant life event/illness/etc come about. The ebb and flow of my emotions have caused me to experience some of this list at different times and not in order. I feel like my sleep induced stage this week has been a coping mechanism to anger. I'm not angry with my children, I'm angry about what we are going to have to face. Not that I'm thinking about Livia dying, even though that is the forefront of my thoughts, but angry about the decisions that we may have to one day make. I'm angry at the circumstances, financially, that this has and will continue to burden my family with. I'm angry that we, educated and well employed people, aren't able to find any kind of assistance out there for this financial burden that we are facing. Can someone just please but me a stink'n pack of diapers? PAUSE and BREATH.....sorry about that. I'm not looking for someone like you who is reading this to send me a pack of diapers. That's not what I'm getting at. I'm just angry that a family like mine who are good contributing members of this society can't receive any assistance just because my husband makes a good salary. We are struggling to. I'm angry that I still have to change diapers. I'm angry that my child crys at times and I don't know why. I'm angry that I'm going to have to tell her sister one day why she doesn't talk like her. I'm angry that I feel so alone. I could go on, but now I'm angry because I'm crying. UUUUGGGGHHHH.....I kinda got off on a rant, but I feel like this blog is another coping mechanism.
Side note......it does NOT make me feel better when someone tells me or mentions to me that someone out there has it worse off than me. REALLY???? I really do love facebook, but sometimes facebook can be my worse nightmare. Yes, there are people out there that have terrible situations. They may never see their child walk, hear their voice, only have their child for a year or maybe only a couple hours, someone may have more than one child with a terminal disease, someone may not be able to have children, maybe they themselves are facing something really scary. Does it matter? This doesn't make me feel better.......it makes me even more sad. I want to reach out to them, know them, try to help them in some way. I really don't like to hear that someone has it worse off than me. Maybe it's true, but who can measure that, and who can say who's situation is worse? I'm sure not going to walk up to someone and say "HI, my name is Kelly, I hear your situation is worse than mine, can we be friends? Someone thought by you having a terrible thing going on in your life would make me feel better about the terrible thing in my life." Now, with that being said, I do appreciate and find comfort meeting people that have experienced or are experiencing grief. I know, it sounds very strange, but I do. I'm comforted knowing that I'm not the only mom, wife, sister, friend, whatever, going through those stages of grief. It's hard enough being here alone (without family), as well as feeling alone in this world trying to manage everyday with a child facing a scary future. With all of this being said, I really don't like this stage of anger. I'm not an angry person, and I really don't like sleeping when the sun is out, and both of my girls hair sparkle in the sun. I'm thinking it's time to move on from this week, pick myself up, and know that everything is in HIS hands. I shouldn't complain to much. I have a husband that has a great job and who loves me to death, and two beautiful happy girls that are waiting to splash in our new pool. Bring on summer and bring on a new mood! Thanks for listening!

A Nudge

{OPTIMISM} a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome.

• anticipation, assurance, brightness, buoyancy, calmness, certainty, cheer, cheerfulness, confidence, easiness, elation, encouragement, enthusiasm, exhilaration, expectation, good cheer, happiness, hopefulness, idealism, looking of the bright side, positivism, rose-colored glasses, sureness, trust

These simple words have BIG meaning to me. Having an optimistic attitude truly creates peace, reduces stress, and gives you an all around happy life.

I have been very encouraged, lately, by other MPS families and foundations that we are on the right track of doing great things. There is so much hope in the world of MPS right now. We pray that this hope will be in time for Livia's generation, but only God's Will will prevail. The plans He has in store for us and our children, I feel, are big. To know that we are on the right track, is a great place to be. To feel positive about the hard work ahead of us, to make a difference in other children's lives, is an anticipation of constant gratification. My desire with our foundation is of course to help fund a treatment for Sanfilippo Syndrome. Let's just say, a treatment is found and administered in, oh, say three years. Then what? I envision our family spreading our story to other's in hopes of inspiration and support. To know that whatever they are given in their life, there are people who will stand by them and help in whatever way possible. Maybe we will get to a point where we can help support families with medical expenses or equipment. Yesterday, as I was trying to shut my eyes for just 20 minutes, I felt a nudge and a whisper. My heart was telling me, Kelly, there is no time for this, you have work that needs to be done. Before, when my mind would wonder when I was trying to rest, I would get very annoyed that I couldn't just turn it off. This time was different. I compare it to really loving your job to really hating your job. When you hate your job, you find every excuse/complaint during your day. It's hard to get up in the morning and go to a place that you just don't enjoy. When you love your job, it's effortless. It makes every aspect of your life better. So what I'm trying to say is, I'm really loving my job right now. I feel like I've found my place. I feel like I'm on the path that was set forth for me. My heart is in what we are doing. To me, this is optimism..........and it's synonymous to what Liv Life is all about!

May 15th, 2011

MPS awareness day.......................a day to tell people about our kids, here and in heaven. There are so many creative people in the MPS world. Creative in the sense of how to spread awareness. Last year we had business cards made, attached purple suckers (if you haven't guessed by now, purple is the color represented for MPS) and handed them out to the community. I really want to do something more next year. I want to get our church and schools involved. I'm seeing a balloon launch or something fun like that. I think if would be amazing to do a month long awareness at our church and then the weekend of the 15th have the entire congregation in purple. Just a few ideas, and we'll see where the year leads us.

This year, I challenged friends and family to wear purple on May 15th and tell people about Liv and MPS. I then asked them to send me their purple pics. Something this simple, and yet I'm so touched by the support. People's generosity gets me every time. Generosity doesn't always come in the form of a dollar. Generosity comes in joining in on a challenge, giving words of encouragement, offering support, or just being there. A dollar here or there is nice, but it's not always what generosity looks like. I can't explain how important these small gestures are to me. I can't imagine going through this feeling alone. Knowing that we have friends and family that will stand by our side and take pictures in their purple clothes really means the world to me. Enjoy the purple collage and I'd be happy to take suggestions for next year's awareness day! LOVE YOU!

Just when I needed it the most!

Having a foundation, a blog, organizing events, being a mommy, being a wife, doctor's appointments, natural history studies, being a friend, email's, etc. etc. etc. This is my life. At times, I can lose momentum having so much on my plate. Some days, I want to give up. Being overwhelmed is not a fun emotion. It's a vulnerable place where Satan can easily walk into my life, whisper in my ear, and encourage me to just give up. Some days, 24hrs just doesn't cut it to get everything done that I feel needs to get done. When I know I have an event coming up, I try to schedule (in my mind) everything that needs to get done. I'm focused and determined to do it. The end result is what I'm working for. Awareness, funds, maybe inspiring someone along the way. Then it's over. The encouraging words, being gathered with intentional and generous people. It's all so uplifting. But when it's all over and everyone goes their own ways, I feel almost a let down. Not from people and their generosity, but from all the momentum leading up to the event.

Then inspiration comes just when I need it the most. I had the honor of having a chai tea latte date with Tasha Ives. She is someone that I've wanted to meet for a very long time. When Jake and I first started going to Rockford First is when we learned of the beautiful Ives family and their daughter, Sydney. Sydney, at the age of 10, was diagnosed with stage 3 inoperable brain cancer. She won her battle against this cancer 18 months later and went home to be with our Heavenly Father. She is now "Living In Peace" in our eternal home. Their story and foundation information can be found @ http://sydneyives.com/ Please take a moment to learn about this family and their foundation. So, meeting with Tasha this morning was just what I needed. She gave me insight and almost a boost of that momentum I was talking about. To meet another strong mother that has had a difficult journey, that could advise me as well as share a Faith with me, is something that can help me thrive and inspire me to accomplish what we've set out to do. Our situations are different, yet the same. We may not go through the same motions, but we may share the same emotions. That support brings me a lot of comfort. To have someone who is open and willing to let us in, is an amazing gift and blessing!

Things always have a way of working themselves out. I know what will get done will get done. My heart is in what we are doing, and knowing God's Will will be done, can help me accomplish these goals. I hope the beginning of this post wasn't whiny. I have no desire to quit our foundation or our events. This is only the beginning of what I feel like is going to be something big. Thank you, Tasha, for this morning. Thank you for your insight. I look very forward to seeing your foundation grow and working with you in the future. I also look forward to getting to know you and your family. It's nice to meet another sister in Christ!

Dedicated to the Ives family!

Small accomplishments

My Finley Faith will be 2 on the 13th. She is growing and changing daily. She makes me laugh more often than not. One of the traditions I've started for her is to write her a letter for her birthday. My plan is to give them all to her when she is 18. I'm starting to think about that letter and what I want to put in it. This second year of her life I feel like I've really bonded with her. The first year of her life, I think I was in a time of mourning. Not over her, but she was 8weeks old when we got Liv's diagnosis. Finley's infancy, {this makes me so sad}, I feel was taken from her and me. I can remember holding her or feeding her, and watching Livia play, and just sobbing. Of course it took awhile to find out tjat Finley did not have MPS, but in my heart I knew she would be just fine. I can honestly say, I didn't really worry about her having SS. I refer to Finley as my miracle. I look at her everyday, at least once a day, and literally stop and pray my thanks that she is mine. Even if she is throwing the worst tantrum, I think to myself, at least I get to experience it.

This blog was sparked this morning from Finley asking me for some "wa wa" aka....water. She's gotten to the point where she really loves drinking out of a small plastic open cup, not a sippy cup. She gets so excited when I pull one out. Her favorites include a Hello Kitty cup, and a Disney Princess cup. She will choose which one she wants. She then squeals in delight. As I was pouring her water, the mixed emotions came flooding in. I was so proud of Finley for reaching this small point in her growth, yet it made me realize that she is/has gained on Livia in development. Livia is doing really well, but there is no way I could give her an open cup without a mess to follow or me helping her through her breakfast with it. These small accomplishments are really big in my world. Who would have thought that drinking from a cup would warm my heart and make me so sad all at once.

Both of my girls are such blessings in my life. They have helped me become the person I'm proud of today. I feel like I'm fortunate to be aware of these "small accomplishments." I don't let even the small things go by without a notice. Livia Grace, Finley Faith, I love you more and more each day! Thank you for being mine!!! xoxoxoxoxox

History and Leaving a Legacy

We are all writing our own stories. The stories of our life. The truth is, one day, we will all pass away. Heavy, I know. I'm sure I've lost a lot of readers already. But, if you are still reading, please keep going, because I'm sure this will make you think~ What will people say about me when I'm gone?

This past Sunday I spent the morning with my dad, sister, aunt, uncle, and two cousins at my Grandma and Grandpa Fish's house. Grandma died in November, so my aunt and dad are in the cleaning out phase. They asked us to gather together to sort and pick out any items that we'd like to keep. When we arrived at the house we found my aunt sorting through all of my grandma's jewelry. She was matching earrings, laying out bracelets and necklaces all along a bed. We admired the pieces recalling items that we remembered or remembered her wearing. There were dishes to look though, furniture, old pictures and albums, table clothes, crocheted doilies that we had fun trying to guess what you did with them, and the list keeps going. We took turns picking items that we wanted to keep. Going through the house and still smelling like grandma and grandpa's house really brought back a lot of memories. For me, the emotions didn't really hit until I got home and started washing the glass pieces that I brought back with me. Everything that I was touching had history. Where did it come from? Were some of the items passed down from past generations? It made me think about my grandparents legacy and how proud I am of where I come from. It also made me think about my story and the legacy I want to leave. I put away the beautiful glass pieces in my china cabinet, washed up the doilies and took the jewelry to my room. I picked out a doily that fit on my dresser underneath my jewelry tray. I started to go through the jewelry from my grandma's, matching the earrings again and trying on the rings. That's when the tears started. I missed them. I wish I could go back and tell them so much. My grandma, no matter what, even a couple days before she passed, had a smile on her face when I walked in her room. Her generosity and beauty is her legacy. My grandparent's legacy is a good one. The stories I hear from my dad and aunt are good. I learned this weekend how much my dad loved his mom. She spoiled her grand kids, but I think she spoiled my dad just as much. Not only with "things," but real love.

This journey called life is nothing like I planned or envisioned for myself. Ironically enough, I think it's become better than I could have ever expected. I say "ironically" because how can I think that when my baby has a terminal disorder? Well, it's because I've found through this tragedy who I am, what I believe in, and what I'm capable of. I've learned how important it is to write a story that is positive and inspiring. I want to leave a legacy for myself, my children, and my future generations that is going to spark something in them.

I wanted to share a few pictures of the items that I took from my grandparents home. I'm getting some furniture and a set of china that are not in these pictures. It's hard to say which item I will treasure the most. They all have a great story, but I want to share one with you. My dad hasn't kept a lot from the house. Only the items that really have meaning to him. He told my aunt that he really hoped we would pick this one thing. He wanted us to have these glass banana split dishes. He loved them so much and had great memories of them. My sister and I split them and can't wait to make our own memories with them. My dad is bringing me the furniture in a few weeks and we will be having banana splits when he visits!

Give Love

This past weekend I had the privilege to attend a woman's conference at my church called Original. It was an inspiring weekend full of beauty, God, celebrating being a woman, inspirational speakers, and being with my intentional friends! The end of February I was on the Original website scoping out the specs of the weekend. I came across the part entitled Give Love. The idea behind Give Love was to see a blessing put in someone's life that has influenced you in some way. Along with myself nominating someone, I had to include three other people. The end of Feb, I had just spent a quick visit with my friend, Stefanie Boyce. She was at my house for a brief time, and was having a hard day. Once again, Stef left my house inspiring me and lifting me up. Even in her time of hardship. So, it was the next day of so when I came across the Give Love process. Stefanie immediately came to mind and I got busy in the application process. Three of her friends instantly came to mind. Katie Henry, Angie Devore, and Andrea Bercos were contacted right away and they were on board and excited about the process. All of this had to happen ASAP because the application was due by the last day of Feb. I think I gave them a day or two to get it done. I handed the application in the last day of Feb. We all had to write a little something about our friend and why she deserved it. That was the easy part. We also had to nominate her for something. This was the hard part. We couldn't settle on just one "thing." I nominated her for 4 different things thinking that if she was chosen, the Original leaders could help us in the choosing of the "thing." During the week that I was home (central Il) for my speaking events and news appearance, I get a call from Lisa Yonke, one of the Original leaders. She told me that they would be honored to have Stefanie blessed at the conference. AMAZING! She also asked if me, along with the other ladies that nominated, and Jut, Stefanie's hubby could be at the church Tues afternoon for a video interview. It just so happened that Jake, the girls, and I were heading home that Tuesday. I quickly called the other ladies and Jut, told them what was in the works, and if they could get to the church. Long story short, we all make it to the church and made an amazing video (see below). Andrea Bercos decided to attend the entire conference. She was at my house for the weekend. It was so nice! The other ladies, Katie and Angie were in charge of getting Stefanie to my house Friday evening and not really letting her know why. This was all to be kept a secret from Stef. They successfully got her to my house. She knew we were up to something and tried to get it out of us, but we all stuck to our guns and told her to just trust us. We got her to the church, and I think she was a wee bit disappointed we weren't going to get mani's and pedi's. Not that she wouldn't want to be at the church, just that our time together was going to be short and maybe we would be doing something different. So, we listened to the first speaker, Nancy Alcorn.......AMAZING! Then there was a short break, then Give Love. The Original ladies started presenting gifts or blessings to people and families. The gifts kept getting bigger and better. Oh, I should say that we didn't really know what they were going to give Stef. Lisa kinda led on to a few things to me, but never said anything definite. So, they announce the final nominee as "The next story is one of true Faith and inspiration." The lights go dim, and our video (see below) starts to play. There on the 3 big screens is Jut, I look over at Stef and she is crying. After the video is over, they invite all of us on to the stage. They talk a little about Stef and start presenting her with her blessings. The first was a small wicker basket filled with some bath pretties. They then told her she and Justin were getting a spa get away to Sundara spas in Wi. The basket also contained $500 in Visa gift cards. They then presented her with two rather large Easter baskets for Jayden and Brooklyn. Then came a $300 gift card to Ingrasia Furniture for something for their new home. Then the whopper. Out came a BIG cardboard check for $2,500.00. WHHHEEWWW! I thought it was over at this point. However, to my total shock and complete unexpectedness, they started talking about me. She said, "Here is Kelly, unbeknown to us, until the interview process, did we know that Kelly's oldest daughter has the same thing that Stefanie's children have. She could have wavered and hoped that someone would nominate her, but instead she nominated her friend." They then started presenting me with blessings. I got the small wicker basket with bath pretties, the same vacation for Jake and I, $500 in Visa cards, and two HUGE baskets for the girls. WOW! How generous! I'm still in shock of it all. I was so excited to do this for my friend. It was so easy to do because I love Stefanie and her family so much. I really feel like this is where my heart is. I want to have a giving and generous heart. I want others to know my extreme love for people. I'm ready to sign up to help with Give Love next year! So, it's not over. After we get off the stage and they dismiss us from the conference, Stef and I get bombarded by people. Words of encouragement, hugs and kisses, extreme love from total strangers. A complete blessing. Then, one of the pastor's wife comes up to me with this older lady with tears in her eyes. She introduces us and the woman pulls me close to her and tells me she had a son that passed away in the 80's of the MPS disorder, Hunter's syndrome. She comforted me and gave me encouragement. WOW! Then, another woman comes up to me, asks me my name, pulls her check book out, and with tears in her eyes tells me that she has been extremely blessed in her life and wants to bless me. She writes me a personal check. It's another experience of people's generosity and complete selflessness that awe's me every time. I wish and pray that more people could experience something like this. Not necessarily getting something (not that it isn't amazing) but to experience giving is such an amazing thing. I'm so happy for Stefanie and what she received. What a great end to an extremely busy week. Before you watch the video, please pause the music player so that you can hear the video. Love you and GIVE LOVE! CLICK HERE TO WATCH VIDEO!