Friday, April 8, 2011
Natural History Study, Round 1
Another busy week ahead of us. We (the 4 of us) are traveling to Central Il today after Jake gets off work. Then, on Sunday, Livia and I are flying out of Bloomington to be a part of the Natural History Study being performed at the University of Minnesota by Dr. Whitley. We will be there until Thursday morning. When we arrive home will be the start of the woman's conference at our church. Very excited for this. Anyway, the study is a very important thing in the world of Sanfilippo. Not only for our generation of children, but for the future of Sanfilippo. Our hope is that one day when children receive this diagnosis it won't be followed with the word terminal. Not only is this study beneficial for learning more about the disease process, but it is also a requirement of the FDA in order for a treatment to come to the United States (in respect to what is currently being done in the UK.) The days will look like this. We arrive Sunday and settle into our hotel. Monday will be a day of meeting the physicians and signing consents. Jake will fly in Monday evening to meet us. Tuesday we will be meeting psychologists, meeting with audiologists, and more physicians. Wednesday, Livia will be under anesthesia. They will replace her tubes if need be, perform an ABR, MRI, echo-cardiogram, and a lumbar puncture. The lumbar puncture is the only "new" procedure that she's never had. Livia has to have all of these procedures through the year, maybe twice. So, not only is this part of our regular schedule of procedures, it's also being paid for. Livia's physicians and geneticist at home will all be getting the results of the procedures. The other families that I've talked with that have gone through this study said that everyone was very accessible, knowledgeable, and friendly. On a side note, I am looking forward to spending some time with just Livi~Lou! The hotel has a really nice water park that we are going to try out one day. Jake and I looked up diner's-drive in's-and dive's last night and we may venture out and find a neat place to eat. Please keep us in your prayers as we travel, prayers for meeting new people, prayers for knowledgeable and friendly staff, and prayers for Livia being patient, brave, and safe! I'll have my computer with me while we are there, so I can keep everyone up to date. Round 1, here we come. There will be a round 2 and 3, keep an eye out!
Thursday, April 7, 2011
4 simple words
I never thought I would be so moved by my children's words. When you have a new baby and they start babbling, it's always so exciting. Then the first words of mama, dada, and more start to come. This all happened for Liv, but she never really formed any sentences. Her speech, to me, is fairly good. I understand a lot more than what other's do. But I'm mom! There are times when she puts 3 to 4 words together, and I cling onto those sentences like you wouldn't believe. I'm fearful for the day, that I may not hear her precious voice anymore. She love's to sing "Happy Birthday," "Twinkle Twinkle Little Star," "ABC's," and a few more. When we were home last, she gave me the impression that she needed to potty, and was maybe having a hard time going. So I sat her on the potty and clear as day she said to me "I WANT TO POOP!" My mother in law, Cindy, heard this, and we celebrated these words. I never imagined I would be so mo
ved by my child telling me she wants to poo. Finley's speech is getting better everyday. She has passed Livia up in her verbal abilities. I listen to her words (Finley's) with more focus because her words, hearing them, mean so much. It's kinda like the saying, you don't know what you had until it's gone. Not that I don't have Livia's words, but I can appreciate their voices a little more because there is that chance I won't have Liv's words forever. So, this morning as I was getting Livia ready for school, I told her that I loved her very much. Without a prompt from me, she looked me in the eyes and said "I LOVE YOU, TOO." These 4 simple words have radiated in my mind all morning. It's something so precious and meaningful that I want to keep it forever. It was that moment that I knew Livia is doing really well. It was so perfect because it happened. 4 simple words that I hope isn't the last time I hear it. Listen to your children and know how fortunate it is to be able to hear them.
ved by my child telling me she wants to poo. Finley's speech is getting better everyday. She has passed Livia up in her verbal abilities. I listen to her words (Finley's) with more focus because her words, hearing them, mean so much. It's kinda like the saying, you don't know what you had until it's gone. Not that I don't have Livia's words, but I can appreciate their voices a little more because there is that chance I won't have Liv's words forever. So, this morning as I was getting Livia ready for school, I told her that I loved her very much. Without a prompt from me, she looked me in the eyes and said "I LOVE YOU, TOO." These 4 simple words have radiated in my mind all morning. It's something so precious and meaningful that I want to keep it forever. It was that moment that I knew Livia is doing really well. It was so perfect because it happened. 4 simple words that I hope isn't the last time I hear it. Listen to your children and know how fortunate it is to be able to hear them.
Saturday, April 2, 2011
A Girl Scout Troop's Generosity
Have you ever received something in the mail that makes you cry and cry and cry? Even if it's a box from a girl scout troop? Well, I have. Livia received a rather large box in the mail one day. It was filled with girl scout cookies, tedd
y bears for she and Finley, hair ties, pictures, notes, t-shirts, an official GS vest donned with badges, extra badges, and a GS tote with flip-flops. There was even a little gift for me, but that one is for me. Anyway, Heather, a school friend of mine is a Troop Leader to a group of amazing young ladies in Tuscola, Il. Their troop is #2336. Heather contacted me one day and asked about Livia and what kind of cookies she likes. She told me that she would like to tell her gi
rls about Liv, our foundation, and what giving to us would look like. She really went above and beyond what I thought she might do. I think I was most touched with the letters from the troop girls and the badges that Heather had made. I got to see Heather when we were home last. She made the effort to come and visit with us during our Monical's fund raiser. She expressed to me how important it is to teach her young ladies the importance of giving. I applaud you Heather for instilling such an important value in these young women. I really feel like giving is such an awesome gift. I love doing it myself. Some days I wish I had more resources available to give more than I'm able. Through my life with Liv, and the experience of having our foundation, I'm learning what generosity really looks like. It doesn't always have to be money, items, or things of value, it can also be words or random acts of kindness. These, to me, are worth more than any amount of money. Knowing people are there for you to walk with you during your difficult times is what generosity means to me. Getting an email from a complete 
stranger telling me how our story has affected them, for the better, is generosity. Someone volunteering their help, is generosity. A random phone call or note in the mail, is generosity. Getting a goody 
box from a girl scout troop, is generosity. People loving me and my family, is generosity. I think everyone could benefit from doing something nice for someone else. Pick up the phone and tell someone how proud you are of them or that you are just thinking about them. Buy the car ahead of you in the drive up their cup of coffee.
One of my favorites:
Proverbs 11:24-25 One gives freely, yet grows all the richer;
Thank you Girl Scout Troop #2336 for making a little girls day and learning what generosity is all about.
y bears for she and Finley, hair ties, pictures, notes, t-shirts, an official GS vest donned with badges, extra badges, and a GS tote with flip-flops. There was even a little gift for me, but that one is for me. Anyway, Heather, a school friend of mine is a Troop Leader to a group of amazing young ladies in Tuscola, Il. Their troop is #2336. Heather contacted me one day and asked about Livia and what kind of cookies she likes. She told me that she would like to tell her gi
rls about Liv, our foundation, and what giving to us would look like. She really went above and beyond what I thought she might do. I think I was most touched with the letters from the troop girls and the badges that Heather had made. I got to see Heather when we were home last. She made the effort to come and visit with us during our Monical's fund raiser. She expressed to me how important it is to teach her young ladies the importance of giving. I applaud you Heather for instilling such an important value in these young women. I really feel like giving is such an awesome gift. I love doing it myself. Some days I wish I had more resources available to give more than I'm able. Through my life with Liv, and the experience of having our foundation, I'm learning what generosity really looks like. It doesn't always have to be money, items, or things of value, it can also be words or random acts of kindness. These, to me, are worth more than any amount of money. Knowing people are there for you to walk with you during your difficult times is what generosity means to me. Getting an email from a complete 
stranger telling me how our story has affected them, for the better, is generosity. Someone volunteering their help, is generosity. A random phone call or note in the mail, is generosity. Getting a goody 
box from a girl scout troop, is generosity. People loving me and my family, is generosity. I think everyone could benefit from doing something nice for someone else. Pick up the phone and tell someone how proud you are of them or that you are just thinking about them. Buy the car ahead of you in the drive up their cup of coffee.One of my favorites:
Proverbs 11:24-25 One gives freely, yet grows all the richer;
another withholds what he should give, and only suffers want.
Whoever brings blessing will be enriched, and one who waters will himself be watered.
Thank you Girl Scout Troop #2336 for making a little girls day and learning what generosity is all about.Wednesday, March 2, 2011
An ounce of perspective, a dash of humility, and a pinch of pain......
Mix together, and surprisingly enough, you get peace. These last couple weeks I feel as though perspective has really been thrown in my face. The trials in my life have opened my eyes to what really matters in my life. I've chosen, which life is all about choices and how you will handle a circumstance, to really re-focus my heart. I know that I've always been a "good" person, but being in the world of Sanfilippo has really made me reflect on how "good" I really was. Before I dive in, this post is probably going to be deep but completely heart felt. It also might get long, but I hope you hold on until the end.
PERSPECTIVE~
Yesterday was a really big day for me. Emotionally hard and scary. A glimpse of what our future may hold. I attended the visitation of Steffany Barnett. Steff was 15 years old, and won her battle against SS. The same thing that Livia has. I say she "won" her battle, because she is finally free of her pain. She has WON her place in the Kingdom of Heaven, and because of that, she's won. Steffany lived in Bloomington with her mom Val, dad, Steve, and brother Stevie who also has SS. The Barnett's were one of the first local families that we met. They hold an annual family gathering in Bloomington. Val is one of the strongest and most compassionate people I know. She always has it together, and radiates peace whenever I'm around her. Steffany battled for the last three weeks, and her passing was to be expected. I knew that I wanted to attend her visitation to support Val and Steve. If roles were reversed, I know they'd be there for me. My drive to Clinton, Il was a blur. I was so nervous and scared to face them and to see Stef. What was I going to say to them, is this something I'm going to have to face, where is my faith right now? I tried to reflect on the fact that Steffany isn't suffering anymore, but the worldly hurt got in the way. Val said, "the purest love comes from non-attachment." I just can't imagine what losing your baby feels like. I always sense peace when I'm around other families with MPS children. You have to be a strong person, or choose to be strong, when facing SS. As I was getting ready for the visitation yesterday morning, I felt perspective again. My mind was filled with thoughts of the day. I was consumed. I turned the TV on and put Finley on my bed. I showered and starting thinking about "getting ready." What was I going to wear, how should I do my hair, what color eyeshadow, do I have waterproof mascara, on and on. I easily could have spent 2 hours getting ready. I then thought about Finley. Was it really worth spending all that time on "getting ready?" I decided it was more important not to let Dora the Explorer raise my child. So, I dried my bangs, let my hair air dry, and played with my baby. I finished getting ready while the girls were eating. I re-focused my attention on where I thought it mattered more. Perspective, I think so! Along with perspective, this also humbled me.
HUMILITY~
I like being humbled. Moments in my journey has created such humility, and again made me re-focus my heart. I'm humbled at people's generosity and love. As ugly as SS is, there is so much beauty surrounded by the families that we've encountered. I've met some amazing people along the way. Not only other MPS families, but people who have a genuine concern and want to walk along our sides in this life. I'm humbled by people's comments on my blog. Being humbled has introduced me to the ME I'm proud of. I'm discovering capabilities within myself that I'd never known I could accomplish. I love the idea's that are swirling in my mind. I love the feeling of wanting to help others. Being comfortable with myself is a peaceful place to be. I came across a saying that I love, "Be YOU, find YOU." I think I've found me, and it feels really good to know what matters to me, not be ashamed of what I believe in, and feel comfortable enough to share my thoughts. I'm also humbled by the fact that I have a loving and supportive husband. Jake has taught me so much in the few years we've been together. (8total) Jake has an extremely strong Faith. He loves his entire family. Knows no stranger, and is the biggest social butterfly I've ever met. He's the type that would give his shirt off his own back. I'm humbled by the fact that he chose to share his life with me. Through these last couple painful years, his love for us has never wavered.
PAIN~
"Pain and acceptance can co-exist in the heart to create peace." This was printed on the back of a bookmark that was at Steffany's visitation. It speaks mountains to me. I feel like it is my heart that has found this co-existence that is peaceful. There are moments of really bad patches where I don't know how we are going to get through this. Again, being humbled in the fact that I have my girls, and get to enjoy them today is peaceful. Standing in the visitation line, looking at all the pictures of the Barnett family was so hard and emotional. I felt like my heart was going to jump right out of my chest. I thought the person behind me could probably hear the lub-dub coming from my chest. There was even a picture of Steffany wearing a LivLife tshirt. I of course lost it. The anxiety of getting to Val and Steve was painful. It was the anticipation of knowing what to say and how they were really doing that was eating away at me. As soon as I got to Val, she embraced me, kissed me on the cheek and told me she loved me so much. She whispered in my ear how much she loved Livia and that we were going to make this better for her. She was comforting me, in her time of pain. How powerful, and humbling is that? That's who Val is, and who I aspire to be like. She was at peace and I could sense that. I embraced Steve and gave my condolences along with a little gift from Liv (that's an entire other story.) I thought that viewing Steffany's body would be the hardest part. It wasn't. I envisioned myself standing over her body weeping uncontrollably. It was just the opposite. Val's mom stood by my side and talked with me for a couple minutes about Steff and her passing. I was at peace knowing she was not in pain. I accepted the fact that she is no longer with us physically, but embraced the knowledge that we will see her again.
This road that we are on is so uncertain. It's uncertain for everyone, but choosing a life filled with happiness, fun, and love is where I know I want to be. I'm choosing to live a Grace filled life, and want to extend that to everyone I encounter. Steffany, you will be missed, but you are an inspiration in my life. I love you Val, Steve, and Stevie. My heart is forever grateful that you have allowed us into your lives.
For Steffany Eileen Barnett
PERSPECTIVE~
Yesterday was a really big day for me. Emotionally hard and scary. A glimpse of what our future may hold. I attended the visitation of Steffany Barnett. Steff was 15 years old, and won her battle against SS. The same thing that Livia has. I say she "won" her battle, because she is finally free of her pain. She has WON her place in the Kingdom of Heaven, and because of that, she's won. Steffany lived in Bloomington with her mom Val, dad, Steve, and brother Stevie who also has SS. The Barnett's were one of the first local families that we met. They hold an annual family gathering in Bloomington. Val is one of the strongest and most compassionate people I know. She always has it together, and radiates peace whenever I'm around her. Steffany battled for the last three weeks, and her passing was to be expected. I knew that I wanted to attend her visitation to support Val and Steve. If roles were reversed, I know they'd be there for me. My drive to Clinton, Il was a blur. I was so nervous and scared to face them and to see Stef. What was I going to say to them, is this something I'm going to have to face, where is my faith right now? I tried to reflect on the fact that Steffany isn't suffering anymore, but the worldly hurt got in the way. Val said, "the purest love comes from non-attachment." I just can't imagine what losing your baby feels like. I always sense peace when I'm around other families with MPS children. You have to be a strong person, or choose to be strong, when facing SS. As I was getting ready for the visitation yesterday morning, I felt perspective again. My mind was filled with thoughts of the day. I was consumed. I turned the TV on and put Finley on my bed. I showered and starting thinking about "getting ready." What was I going to wear, how should I do my hair, what color eyeshadow, do I have waterproof mascara, on and on. I easily could have spent 2 hours getting ready. I then thought about Finley. Was it really worth spending all that time on "getting ready?" I decided it was more important not to let Dora the Explorer raise my child. So, I dried my bangs, let my hair air dry, and played with my baby. I finished getting ready while the girls were eating. I re-focused my attention on where I thought it mattered more. Perspective, I think so! Along with perspective, this also humbled me.
HUMILITY~
I like being humbled. Moments in my journey has created such humility, and again made me re-focus my heart. I'm humbled at people's generosity and love. As ugly as SS is, there is so much beauty surrounded by the families that we've encountered. I've met some amazing people along the way. Not only other MPS families, but people who have a genuine concern and want to walk along our sides in this life. I'm humbled by people's comments on my blog. Being humbled has introduced me to the ME I'm proud of. I'm discovering capabilities within myself that I'd never known I could accomplish. I love the idea's that are swirling in my mind. I love the feeling of wanting to help others. Being comfortable with myself is a peaceful place to be. I came across a saying that I love, "Be YOU, find YOU." I think I've found me, and it feels really good to know what matters to me, not be ashamed of what I believe in, and feel comfortable enough to share my thoughts. I'm also humbled by the fact that I have a loving and supportive husband. Jake has taught me so much in the few years we've been together. (8total) Jake has an extremely strong Faith. He loves his entire family. Knows no stranger, and is the biggest social butterfly I've ever met. He's the type that would give his shirt off his own back. I'm humbled by the fact that he chose to share his life with me. Through these last couple painful years, his love for us has never wavered.
PAIN~
"Pain and acceptance can co-exist in the heart to create peace." This was printed on the back of a bookmark that was at Steffany's visitation. It speaks mountains to me. I feel like it is my heart that has found this co-existence that is peaceful. There are moments of really bad patches where I don't know how we are going to get through this. Again, being humbled in the fact that I have my girls, and get to enjoy them today is peaceful. Standing in the visitation line, looking at all the pictures of the Barnett family was so hard and emotional. I felt like my heart was going to jump right out of my chest. I thought the person behind me could probably hear the lub-dub coming from my chest. There was even a picture of Steffany wearing a LivLife tshirt. I of course lost it. The anxiety of getting to Val and Steve was painful. It was the anticipation of knowing what to say and how they were really doing that was eating away at me. As soon as I got to Val, she embraced me, kissed me on the cheek and told me she loved me so much. She whispered in my ear how much she loved Livia and that we were going to make this better for her. She was comforting me, in her time of pain. How powerful, and humbling is that? That's who Val is, and who I aspire to be like. She was at peace and I could sense that. I embraced Steve and gave my condolences along with a little gift from Liv (that's an entire other story.) I thought that viewing Steffany's body would be the hardest part. It wasn't. I envisioned myself standing over her body weeping uncontrollably. It was just the opposite. Val's mom stood by my side and talked with me for a couple minutes about Steff and her passing. I was at peace knowing she was not in pain. I accepted the fact that she is no longer with us physically, but embraced the knowledge that we will see her again.
This road that we are on is so uncertain. It's uncertain for everyone, but choosing a life filled with happiness, fun, and love is where I know I want to be. I'm choosing to live a Grace filled life, and want to extend that to everyone I encounter. Steffany, you will be missed, but you are an inspiration in my life. I love you Val, Steve, and Stevie. My heart is forever grateful that you have allowed us into your lives.
For Steffany Eileen Barnett
Tuesday, February 22, 2011
Good ALWAYS defeats evil
What a stressful morning. I wake up, early, like before one of the girls is up. This is rare. I start my computer routine and see a message from one of Jake's cousins. He informs me that www.livlife.us has been hacked. WHAT? I scurry over to the website and sure enough everything is gone and all I see is a white screen with some text at the top. The text said something like "hacked by ???XXX???, shout out to blahblah so and so." My heart, ONCE AGAIN, is in my stink'n throat. Are you kidding me? My mind starts racing thinking really mean and cruel thoughts of "who in their right bleepbleepbleep mind has the time, energy, or desire to do something like this?
I think it's pretty obvious what the website is about. I mean, the front page says "Join in the fight to save Liv's life." UUUGGGGGHHHH.......I just want to scream. I'm so mad, sad, and hurt by this. I don't think I've cried this hard in a long time. Fast forward through the morning. >facebook post about the website, comments of encouragement, me calling sis, mom, dad, Jake to vent and cry, receiving phone calls from caring friends, grammy, and aunt. Sending emails to web pro's that I know, crying, crying, crying. PAUSE. PLAY. Website is back up. My head is pounding, my eyes are throbbing and puffy. I should be resting. What I've learned from this: change my passwords, some people just don't care, prayers do get answered, I have a lot of people that are on my side, I'm not going to EVER get defeated like this again. I seriously was beat down by this. The website is our one arm that we can reach out into this world. How can someone just take that away from us? Well, for a brief moment in this day it was taken away. It rocked my world, but, it's back. Good ALWAYS defeats evil. So, in the face of a moment like this (if a moment like this ever happens again) I will choose to take a deep breath, find out my options and not jump to conclusions, and not be afraid to ask for help.
My ever~loving grandma sent this to me after our phone conversation. She received an email from one of her friends that had this verse in it. She said that she received that email for a reason and the reason was to pass it on to me. This is what it said~
I think it's pretty obvious what the website is about. I mean, the front page says "Join in the fight to save Liv's life." UUUGGGGGHHHH.......I just want to scream. I'm so mad, sad, and hurt by this. I don't think I've cried this hard in a long time. Fast forward through the morning. >facebook post about the website, comments of encouragement, me calling sis, mom, dad, Jake to vent and cry, receiving phone calls from caring friends, grammy, and aunt. Sending emails to web pro's that I know, crying, crying, crying. PAUSE. PLAY. Website is back up. My head is pounding, my eyes are throbbing and puffy. I should be resting. What I've learned from this: change my passwords, some people just don't care, prayers do get answered, I have a lot of people that are on my side, I'm not going to EVER get defeated like this again. I seriously was beat down by this. The website is our one arm that we can reach out into this world. How can someone just take that away from us? Well, for a brief moment in this day it was taken away. It rocked my world, but, it's back. Good ALWAYS defeats evil. So, in the face of a moment like this (if a moment like this ever happens again) I will choose to take a deep breath, find out my options and not jump to conclusions, and not be afraid to ask for help.
My ever~loving grandma sent this to me after our phone conversation. She received an email from one of her friends that had this verse in it. She said that she received that email for a reason and the reason was to pass it on to me. This is what it said~
Jeremiah 29:11 "for I know the plans I have for YOU, declares the LORD
"Never give the devil a ride, he will want to take over the driving."
Dear Woman of God
Be still for a while and praise God for His favor, His grace and His awesomeness
God is able to do the impossible and is always near
He loves us unconditionally.
| Dear God: I Love you too, grammy! |
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Thursday, February 17, 2011
tear................
I was just going through my computer routine. I'm sure many people do this. Check email, check facebook, check blogs, etc. I had company during my routine. Finley Faith cuddled up beside me with her binky and blankie and had her head on my shoulder quietly watching what I was doing. I got to my blog, scrolled down the page and came to the birthday post with the baby pictures of Livia. She perked up, pointed, and said baby..........HOLD! She loves babies! I then told her that they were pictures of Livia when she was a tiny new baby. Finley then said "aaaaawwwwww, Livi-Loo." I immediately started to tear up. I love it when Finley calls her sister Livi-Lou, or sissy. I couldn't help but get emotional about their situation as sisters. I pray so hard that Finley doesn't have to ever know the word terminal when it comes to her sister. I dread the day she starts asking questions or we have to tell her something scary about Livia. I don't dweal on these thoughts, but at moments like this it's hard not to think about it. I thrive on the love and support of my sister. She is one of the most important people in my life. I'm so blessed to have such a great relationship with her. I admire her, look up to her for her wisdom, kindness, and unique self. I can't imagine life without her. I was so excited when we found out we were having a second girl. I was excited for their relationship. I hope and pray that my wishes for them will come true. For now, I love the sisterly relationship they have today. I'm blessed to have both of my girls. Livia full of Grace is my tender hearted angel. Finley full of Faith is my miracle. I'm blessed to have both of their unique and special selves in my life. I love you, girls!!!!
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