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
Wednesday, March 2, 2011
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!!!!
Tuesday, February 15, 2011
will someone hold my heart?
One of my most favorite musical artist is Sara Bareilles. My pandora radio station is usually always set to SB. Her music is beautiful and I find a lot of inspiration listening to her words. If you are reading my blog right now, chances are you are hearing one of her songs playing. "Hold my heart" is the latest song I've added to my play list. I wanted to add "The light" but it wasn't available to add. You can click on the song and it will take you to her latest album and you can listen to the entire album, or choose which song you'd like to hear. Anyway, the point of this post is to express some of the feelings I've been having lately. There have been a few small glimpse's of Sanfilippo showing it's ugly face in Livia's beautiful life. I received an email last week from one of her teachers expressing that they have seen an increase in Liv's aggression. This was a HUGE heartbreaker for me. While reading the words in this email, my heart fluttered and my heart was once again sitting in my throat. No one wants to hear this. I really didn't know how to address the situation because we are not seeing this behavior at home. I emailed the teacher back telling her that we will address the situation and want to resolve it in the best way we can. I contacted her genetic counselor to get some advice, which helped somewhat. I then talked with my angel of a friend Stefanie Boyce. She is one of the wisest people I know. She offered support and insight to what they have experienced with Jayden. I have a feeling that our lives will mirror theirs. Unfortunately, SS will show it's ugly face in their family first.............maybe. Anyway, after pondering over this situation I emailed the teacher back and expressed to her that I thought this was Livia's means of communication. She is not able to use her words like she wants, and so an uncomfortable situation or dislike or want that she is unable to get across is probably resulting in frustration. Being Livia's mom, I'm bias to her. Meaning, she is mine. I love her unconditionally and she is an angel in my eyes. Even through Sanfilippo, my heart will never waver when it comes to loving my child. I know, however and unfortunately, there is a stereotype associated with a difficult child. I mean, not only do they have to deal with these aggressive behaviors, but they are changing her diaper as well. I know, I know, it is their job, and they wouldn't be doing these things if they didn't choose to. I just don't want any animosity or ill feelings towards my child. I want people to see her for the person I know she is. The girl who loves to cuddle with her mommy and giggle. The next thing isn't big, but it's another "thing." Livia now has to wear a harness vest thing on the bus. She was being double buckled and we gave her her barbie to keep her hands occupied as to not unbuckle herself and get up. I've delt with this in the car, as well. Having a child get out of her car seat on I-90 in the middle of rush hour is NOT FUN! Liv's bus driver is so kind and soft spoken. She has been very honest and tried every option before going to the vest. It was time, though, for everyone's safety to change Livia's IEP and put her in the vest. Today was her first day in the harness. Next thing, Livia's diapers are getting to tight. She is in the last size that you can buy in the store. Luv's are about the only diaper that seems bigger than the rest that we can get away with putting her in. I'm not ready to go to the medical supply store to buy bigger diapers. It's something that I know I'm going to have to do soon. Her chewing has increased......A LOT! If you come to my house and pick up a Barbie, they are either missing both feet because I've amputated them due to Livia's chronic chewing. OR, they are about to be amputated. She is getting small pieces of plastic off of them. I know I shouldn't even let her have them to chew on, but it's her preference. If I try to put her favorite Barbie of the moment out of sight, she will cry for it. She asks for it and uses the word Barbie. I guess I kind of feel like I'm rewarding her for using her words. I've thought about looking into the "chew toys" that other families have used, but I am not ready to have those in my house. It's all denial on my behalf. Putting all of these issues off or aside is doing Livia no justice. It's putting my feelings in front of her needs, which I know better, but I'm just not ready............or will ever be ready to let Sanfilippo in. You see, this scary, uncertain, heartbreaking reality is my reality. It is something I live with and is in my world 24/7. Somedays I just want someone to hold my heart. I read scripture and my Faith carries me through each and every tough and not so tough moment of my life. But it is in the front of everything, everyday. It's not going to get any easier from here. So, how do I deal? I find the right time to go buy bigger diapers at the medical supply store. I figure the chewing thing out, when I feel it is time. We deal with the school issues in the most open and honest way possible. We NEVER want enemies. I have no desire or have no time to put effort into being the mean possessive I'm always right mom. We just deal. We make the adjustments and just enjoy today. I guess, in a way, I'm glad I get Livia the way she is. She is easy, loving, and her salvation is secure. This is something I reflect on so much. It's the reason why I'm choosing to put God first in my life because I know that if I continue down the path I've chosen, one day, Sanfilippo won't be in our eternal life and we will be together in divine happiness.
Friday, February 4, 2011
Before my eyes
Livia Grace Hubert 
Born 2/6/7
6 pounds 4 ounces
19 inches long
12:10 pm
Where has time gone? It was a short 4 years ago that this beautiful little girl entered our lives. I'll never forget the day Liv was born. Livia was delivered C-section due to a breach position. Everything was planned, which I really appreciated, because I'm a planner. At that time I was an OR employee, so I got to choose (mostly) my room staff. My friends and colleagues were there to share in this experience with Jake and I. It was a very blustery day. Blizzard like conditions. I loved it. It was a routine c-section. IV's, nausea, drapes, insturments clanking, familiar smells (to me), quick spinal, and things were rolling. It was calming to have my friends with me. Words of encouragement and what to expect next. My friend Greg was my CNA. He was wonderful. Once the surgery was underway, things happened so quickly. The nausea hit fast, but Greg was there with his alcohol wipe to help me "sniff" it away. Lot's of tugging and stinky bovie smoke, but after a few minutes, I heard her. It was like music to my ears. I heard Jake say "she's here." Everyone was cooing over her, of course. And then the drapes dropped. There she was. My beautiful girl. The first thing I noticed was her dark hair, and how much there was! Her hands were curled together under her chin. Her lips were so red and pursed as if she was ready to give me a kiss. Her legs were crossed, indian style. She was perfect and she was mine. That moment is burned in my brain. It was almost as if time were moving at such slow speed. Like you see in the movies. I know the moment only lasted a few seconds or maybe even a minute, but when I think about it, it's a daydream that lingers. I cling so tightly to this memory of the first time I saw her. Even thinking and writing about it now is making me cry. I held Livia for the first 18 months of her life. I was so protective of her. I didn't really want anyone else to hold her. I wonder if in my subconscious, I knew something was wrong? Being a mom a second time, and seeing other mom's and how they are with their babies, I really feel like that time with Livia was meant to be. Before I had Livia, and dreaming about what a mom would be like, I can remember thinking about having a 4 year old. For some reason, I thought this age would be one to look forward to. I thought, a 4 year old is transitioning out of the toddler stage, learning new words, and communicating in funny ways. Their imaginations would be filled, but they would still be little enough to really need their mommy and daddy. I have some of that with Liv, but having my 4 year old is not what I dreamed. Birthdays are biter sweet around here. I love having them, planning them, and celebrating them. Who doesn't like a good birthday party? With Livia's birthday's, I almost dread them. It's not that I don't want the celebration, because she IS worth celebrating, I just don't like the thought of one more year gone by. It's hard not to be emotional around a birthday when you have Sanfilippo in your life. With that said and out of the way, on Sunday, think of Livi Loo and wish her a Happy 4th Birthday! It's a day to celebrate this precious gift from God!
This picture to the left is from a small celebration we had last weekend. She loved her balloons!
19 inches long
12:10 pm
Where has time gone? It was a short 4 years ago that this beautiful little girl entered our lives. I'll never forget the day Liv was born. Livia was delivered C-section due to a breach position. Everything was planned, which I really appreciated, because I'm a planner. At that time I was an OR employee, so I got to choose (mostly) my room staff. My friends and colleagues were there to share in this experience with Jake and I. It was a very blustery day. Blizzard like conditions. I loved it. It was a routine c-section. IV's, nausea, drapes, insturments clanking, familiar smells (to me), quick spinal, and things were rolling. It was calming to have my friends with me. Words of encouragement and what to expect next. My friend Greg was my CNA. He was wonderful. Once the surgery was underway, things happened so quickly. The nausea hit fast, but Greg was there with his alcohol wipe to help me "sniff" it away. Lot's of tugging and stinky bovie smoke, but after a few minutes, I heard her. It was like music to my ears. I heard Jake say "she's here." Everyone was cooing over her, of course. And then the drapes dropped. There she was. My beautiful girl. The first thing I noticed was her dark hair, and how much there was! Her hands were curled together under her chin. Her lips were so red and pursed as if she was ready to give me a kiss. Her legs were crossed, indian style. She was perfect and she was mine. That moment is burned in my brain. It was almost as if time were moving at such slow speed. Like you see in the movies. I know the moment only lasted a few seconds or maybe even a minute, but when I think about it, it's a daydream that lingers. I cling so tightly to this memory of the first time I saw her. Even thinking and writing about it now is making me cry. I held Livia for the first 18 months of her life. I was so protective of her. I didn't really want anyone else to hold her. I wonder if in my subconscious, I knew something was wrong? Being a mom a second time, and seeing other mom's and how they are with their babies, I really feel like that time with Livia was meant to be. Before I had Livia, and dreaming about what a mom would be like, I can remember thinking about having a 4 year old. For some reason, I thought this age would be one to look forward to. I thought, a 4 year old is transitioning out of the toddler stage, learning new words, and communicating in funny ways. Their imaginations would be filled, but they would still be little enough to really need their mommy and daddy. I have some of that with Liv, but having my 4 year old is not what I dreamed. Birthdays are biter sweet around here. I love having them, planning them, and celebrating them. Who doesn't like a good birthday party? With Livia's birthday's, I almost dread them. It's not that I don't want the celebration, because she IS worth celebrating, I just don't like the thought of one more year gone by. It's hard not to be emotional around a birthday when you have Sanfilippo in your life. With that said and out of the way, on Sunday, think of Livi Loo and wish her a Happy 4th Birthday! It's a day to celebrate this precious gift from God!
This picture to the left is from a small celebration we had last weekend. She loved her balloons!
Monday, January 31, 2011
A bundle of nerves
I thought about having a glass of wine to help calm my nerves, but settled for a brownie instead. I'm thinking the wine would have been a better option. Voting for the Pepsi grant ends tonight at midnight. We have slipped from 1st, to 2nd, and even to 3rd place today. We are in first right now, but have to rally those votes and end strong. 2 hours and 4 minutes.............will we pull through? This money could mean a chance for Livia's life.
Please vote.
Please pray.
Please vote.
Please pray.
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