3.29.2011
Patti and Samantha
Sometimes, I feel God's grace through the love of great girlfriends. It is the first time in my life that I can say nothing compares to having girlfriends. I feel so blessed and overwhelmed to have Patti and Sam in my life. They are God's gift wrapped up in two beautiful people for me to enjoy.
I love laughing, cuddling, crying, and having insider jokes. I love that days can go by, and like a worn in pair of sweats, you can slip right into the relationship and it just feels right. Just feels like home.
This two women have changed my life and I will be forever grateful. Words can't describe what their friendship means to me. As I grow older, I never want to loose our "threesome" that works!
Thanks ladies for a wonderful night of coffee, the mob, and laughter.
I love you.
-Elizabeth
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
3.27.2011
Dig Purple 3.30.11
Loyola University Gentile Center ~ 6511 N Winthrop Ave, Chicago, IL 60626
Justin's brother, Tyler, plays volleyball at Robert Morris University in Chicago and his team is playing Moody Bible Institute on 3.30.11 (Wednesday). Erik Ness (a former youth group kid and dear family friend) is on the Moody team. Robert Morris has sponsored an event, Dig Purple, in our honor. We would love for you to come support their efforts and see some former ZB volleyball players.
Come out and support YOUR EAGLES vs Moody Bible on March 30, 2011 at Loyola University Gentile Center at 7 p.m.!! Not only are you supporting your EAGLES, you are supporting The Boyce Family!!! FREE TSHIRTS AND TREATS!! Bring your family, friends, and everyone you know and make sure to WEAR PURPLE!!
Dig Purple is an initiative to benefit Build with the Boyces - a group developed to help Stefanie and Justin Boyce build a home that... accomodates the needs of their children Jayden and Brooklyn, who both have MPS III A Sanfillipo Syndrome (the most severe form of Sanfillipo syndrome).
Sanfillipo syndrome is an inherited metabolic disease where the child is missing an enzyme responsible for breaking down a sugar. As they age, the sugar builds, causing progressive neurological damage. There is no treatment or cure, drastically reducing their live span. There are many hopeful treaments on the horizion, given the funding to do the research. Both Jayden and Brooklyn face a difficult road ahead. If you would like to learn more about Sanfilippo or Build with the Boyces visit:
www.buildwiththeboyces.com
www.nlm.nih.gov/medlineplus/ency/article/001210.htm
If you would like to donate to the DIG PURPLE/BUILD WITH THE BOYCES:
Donations per dig- You can donate an amount of money per dig (ex:$.10) and during our Dig Purple game, we will count each dig (ex: 40 digs). Then, your donation is your pledge amount times the # digs (ex .10 x 40= $4).
You can also make a straight donation to Build with the Boyces. Please make all checks out to Build with the Boyces.
DONATIONS WILL BE COLLECTED THROUGH APRIL 29, 2011.
All men's volleyball players will have pledge donation sheets until APRIL 29, 2011. If you would like to make a DIG PURPLE/BUILD WITH THE BOYCES donation please contact one of the players or any of the women's volleyball players and we will get you set up to donate for a GREAT CAUSE and GREAT FAMILY!!
If you CANNOT ATTEND but still want to make a donation, let one of the men's or women's players know or leave a message on the wall and we'll message you back from there. Even if you cannot come out and support for whatever reason, a donation of any kind would mean the world to the EAGLES and THE BOYCE FAMILY!!
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
3.26.2011
Blessing
Laurie-Justin's Aunt, sent us this link and I had to share it with you...
The story behind the song:
The story behind the song:
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
3.16.2011
Life and Death
Seems like the smell of death has been all around us lately, and it stinks. In the matter of 3 weeks, 4 teenage girls died from Sanfilippo. I don't know if there are more deaths happening, or we Sanfilippo families are doing a better job staying connected. Either way, every time I hear about it, I am reminded of the line I stand in, waiting for my children's turn.
We are all waiting in line, though, right? We all have a ticket on the ride of death.
Justin's Grandma Boyce passed away on Saturday. And now, as we plan the funeral, his other Grandma Bakken is in the hospital. His Grandpa Boyce passed away on July 4, 2006....three weeks before the birth of Jayden, and his mentor and Grandpa Bakken, passed away in January 2009, 3 months after our diagnosis. I think when people reach a certain age, we think, they had a good life and it is as expected as death can be. But, it still stinks.
There are 2 new widows in our area. Both women are in their early 30's.
All this death makes me feel less and less invinciable and I am reminded again of my own ticket.
Life, when looking at death, begins to change. I don't want to spend my life focused on my ticket or place in line. I don't want to wait in line. What would my life look like if I stuck my ticket in my pocket and ignored it? I think that is what many of us do, right? We don't want to think about death....surely not our own death, let alone our husband, wife, children, or loved ones. Why? Becuase we are selfish. We want our loved ones near to us forever. And, that makes sense because that, my friends, is how God wired us. We are supposed to be in a world that feels and smells like life. God says about restoration in Rev 21:4...there will be no death, sadness, crying, or pain, because all the old ways are gone. That, my dear friends, is the world we long for. Although we spend our days trying to create restoration here, it is promised to us only in heaven.
So the more I look at my ticket, I realize that I am not standing in a bad line at all. My ticket is for restoration city, not dungeon of doom. In fact, if there is a way to butt in line ahead of someone, I may just do so. I don't want to put my ticket in my pocket, I want to keep it where I see it. It reminds me that I died long ago when I became a follower of Jesus. It also reminds me that my days are not guarenteed and I need to spend my time doing what God put me here to do.
God says in Col. 3... So if you're serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don't shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that's where the action is. See things from his perspective. Your old life is dead. Your new life, which is your real life—even though invisible to spectators—is with Christ in God. He is your life. When Christ (your real life, remember) shows up again on this earth, you'll show up, too—the real you, the glorious you. Meanwhile, be content with obscurity, like Christ.
And that means killing off everything connected with that way of death: sexual promiscuity, impurity, lust, doing whatever you feel like whenever you feel like it, and grabbing whatever attracts your fancy. That's a life shaped by things and feelings instead of by God. It's because of this kind of thing that God is about to explode in anger. It wasn't long ago that you were doing all that stuff and not knowing any better. But you know better now, so make sure it's all gone for good: bad temper, irritability, meanness, profanity, dirty talk.
Don't lie to one another. You're done with that old life. It's like a filthy set of ill-fitting clothes you've stripped off and put in the fire. Now you're dressed in a new wardrobe. Every item of your new way of life is custom-made by the Creator, with his label on it. All the old fashions are now obsolete. Words like Jewish and non-Jewish, religious and irreligious, insider and outsider, uncivilized and uncouth, slave and free, mean nothing. From now on everyone is defined by Christ, everyone is included in Christ.
So, chosen by God for this new life of love, dress in the wardrobe God picked out for you: compassion, kindness, humility, quiet strength, discipline. Be even-tempered, content with second place, quick to forgive an offense. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love. It's your basic, all-purpose garment. Never be without it.
Let the peace of Christ keep you in tune with each other, in step with each other. None of this going off and doing your own thing. And cultivate thankfulness. Let the Word of Christ—the Message—have the run of the house. Give it plenty of room in your lives. Instruct and direct one another using good common sense. And sing, sing your hearts out to God! Let every detail in your lives—words, actions, whatever—be done in the name of the Master, Jesus, thanking God the Father every step of the way.
Wives, understand and support your husbands by submitting to them in ways that honor the Master. Husbands, go all out in love for your wives. Don't take advantage of them. Children, do what your parents tell you. This delights the Master no end. Parents, don't come down too hard on your children or you'll crush their spirits. Servants, do what you're told by your earthly master. And don't just do the minimum that will get you by. Do your best. Work from the heart for your real Master, for God, confident that you'll get paid in full when you come into your inheritance. Keep in mind always that the ultimate Master you're serving is Christ. The sullen servant who does shoddy work will be held responsible. Being a follower of Jesus doesn't cover up bad work.
Death is only the gate to restoration. So, in my earthly heart I am sad. I am sad for the personal loss of loved ones, and the daily struggle it is for us to navigate this unrestored life without them. Time does not heal all wounds. And the gaping hole that is left when people leave this world, is because we had a little bit of Jesus in them when they were around. God is love so if you loved that person and you can feel them, touch them, smell them....a part of God's manifestation in them is gone, in a sense when they leave.
I am reminded of two things, Val-a mother I know who's daughter just turned in her ticket to restoration city at 16, Steffy, said this, "the greatest form of love in non-attachment". I had to chew on that for awhile, and I agree. To me, it is about letting go. Realizing that your loved one is on their own path and letting them go is a huge way to love them. Take example the disciples in the garden letting Jesus "go". Or Mary, mother of Jesus, watching her Son be whipped, tortured, broken, and crying out from a Cross, as she let him "go".
So. I guess it is with mixed emotions that I rejoice and mourn at the same time.
That is one thing I will say, Gladys wanted to go home. She underlined this verse in her Bible. PSALM 100 A psalm. For giving grateful praise.
1 Shout for joy to the LORD, all the earth.
2 Worship the LORD with gladness;
come before him with joyful songs.
3 Know that the LORD is God.
It is he who made us, and we are his[a];
we are his people, the sheep of his pasture.
4 Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.
AMEN.
There are 2 new widows in our area. Both women are in their early 30's.
All this death makes me feel less and less invinciable and I am reminded again of my own ticket.
Life, when looking at death, begins to change. I don't want to spend my life focused on my ticket or place in line. I don't want to wait in line. What would my life look like if I stuck my ticket in my pocket and ignored it? I think that is what many of us do, right? We don't want to think about death....surely not our own death, let alone our husband, wife, children, or loved ones. Why? Becuase we are selfish. We want our loved ones near to us forever. And, that makes sense because that, my friends, is how God wired us. We are supposed to be in a world that feels and smells like life. God says about restoration in Rev 21:4...there will be no death, sadness, crying, or pain, because all the old ways are gone. That, my dear friends, is the world we long for. Although we spend our days trying to create restoration here, it is promised to us only in heaven.
So the more I look at my ticket, I realize that I am not standing in a bad line at all. My ticket is for restoration city, not dungeon of doom. In fact, if there is a way to butt in line ahead of someone, I may just do so. I don't want to put my ticket in my pocket, I want to keep it where I see it. It reminds me that I died long ago when I became a follower of Jesus. It also reminds me that my days are not guarenteed and I need to spend my time doing what God put me here to do.
God says in Col. 3... So if you're serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don't shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that's where the action is. See things from his perspective. Your old life is dead. Your new life, which is your real life—even though invisible to spectators—is with Christ in God. He is your life. When Christ (your real life, remember) shows up again on this earth, you'll show up, too—the real you, the glorious you. Meanwhile, be content with obscurity, like Christ.
And that means killing off everything connected with that way of death: sexual promiscuity, impurity, lust, doing whatever you feel like whenever you feel like it, and grabbing whatever attracts your fancy. That's a life shaped by things and feelings instead of by God. It's because of this kind of thing that God is about to explode in anger. It wasn't long ago that you were doing all that stuff and not knowing any better. But you know better now, so make sure it's all gone for good: bad temper, irritability, meanness, profanity, dirty talk.
Don't lie to one another. You're done with that old life. It's like a filthy set of ill-fitting clothes you've stripped off and put in the fire. Now you're dressed in a new wardrobe. Every item of your new way of life is custom-made by the Creator, with his label on it. All the old fashions are now obsolete. Words like Jewish and non-Jewish, religious and irreligious, insider and outsider, uncivilized and uncouth, slave and free, mean nothing. From now on everyone is defined by Christ, everyone is included in Christ.
So, chosen by God for this new life of love, dress in the wardrobe God picked out for you: compassion, kindness, humility, quiet strength, discipline. Be even-tempered, content with second place, quick to forgive an offense. Forgive as quickly and completely as the Master forgave you. And regardless of what else you put on, wear love. It's your basic, all-purpose garment. Never be without it.
Let the peace of Christ keep you in tune with each other, in step with each other. None of this going off and doing your own thing. And cultivate thankfulness. Let the Word of Christ—the Message—have the run of the house. Give it plenty of room in your lives. Instruct and direct one another using good common sense. And sing, sing your hearts out to God! Let every detail in your lives—words, actions, whatever—be done in the name of the Master, Jesus, thanking God the Father every step of the way.
Wives, understand and support your husbands by submitting to them in ways that honor the Master. Husbands, go all out in love for your wives. Don't take advantage of them. Children, do what your parents tell you. This delights the Master no end. Parents, don't come down too hard on your children or you'll crush their spirits. Servants, do what you're told by your earthly master. And don't just do the minimum that will get you by. Do your best. Work from the heart for your real Master, for God, confident that you'll get paid in full when you come into your inheritance. Keep in mind always that the ultimate Master you're serving is Christ. The sullen servant who does shoddy work will be held responsible. Being a follower of Jesus doesn't cover up bad work.
Death is only the gate to restoration. So, in my earthly heart I am sad. I am sad for the personal loss of loved ones, and the daily struggle it is for us to navigate this unrestored life without them. Time does not heal all wounds. And the gaping hole that is left when people leave this world, is because we had a little bit of Jesus in them when they were around. God is love so if you loved that person and you can feel them, touch them, smell them....a part of God's manifestation in them is gone, in a sense when they leave.
I am reminded of two things, Val-a mother I know who's daughter just turned in her ticket to restoration city at 16, Steffy, said this, "the greatest form of love in non-attachment". I had to chew on that for awhile, and I agree. To me, it is about letting go. Realizing that your loved one is on their own path and letting them go is a huge way to love them. Take example the disciples in the garden letting Jesus "go". Or Mary, mother of Jesus, watching her Son be whipped, tortured, broken, and crying out from a Cross, as she let him "go".
So. I guess it is with mixed emotions that I rejoice and mourn at the same time.
That is one thing I will say, Gladys wanted to go home. She underlined this verse in her Bible. PSALM 100 A psalm. For giving grateful praise.
1 Shout for joy to the LORD, all the earth.
2 Worship the LORD with gladness;
come before him with joyful songs.
3 Know that the LORD is God.
It is he who made us, and we are his[a];
we are his people, the sheep of his pasture.
4 Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.
AMEN.
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
3.04.2011
India day4, 5 and 6
Day 4
Day 5 and 6
Day 5 and 6
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
3.01.2011
to India...I didn't go
I write from the Surgery outpatient waiting room at Children's. I have a pink bracelet today. That is always better than another color. Pink means outpatient....it means I have a good chance of leaving today. I scan the room for different colors, worried faces, and other parents trying to kill time. I see the dr's come in and out and pray no one has to go in "the" room. You know, the bad news room.
I actually like hospitals. I feel safe at hospitals. It is the best place to be if you're sick, or in Brooklyn's case, need ear tubes replaced and andoids removed. I am reminded quickly how easy it would be to "feel sorry" for myself but as the flat screen blabs at me, the Mcdonalds tastes good, and the microwave another parent is using beeps....I am reminded of how lucky I am to be sitting here and not in India with the same needs. Or at my daughter's visitation, like my dear friend Val, who is saying "see you later" to her 15 year old daughter who went to heaven just days ago, Steffany, thanks to Sanfilippo.
There are moments where we have to wake up and really ask ourselves, what are we complaining about? What are we doing with our days?
Or, the dear woman that lost Ben, a 30 a husband and father abruptly only to find out days later, she is also going to loose her 2 year old to a flesh eating bacteria.
We need to wake up. I need to wake up.
I know it is hard to see God in this. The truth is, He isn't. Sure, there is a part of Him "allowing" things to happen, ...and he is walking with us through it, but God is good and hates evil things like death and sickness. Heaven is real so if we hate the evil things of the world, too, don't blame God...hope for heaven where the pain of this world is gone. Earth, the way God originally created it to be, is restored. Hope for a place where hurt is restored, were loved ones are healed and never die. Where there is no hunger, no slavery, no colored bracelets, and no visitations.
Justin is on his way traveling through time on his 40 hour journey home from Tenali, India. It has been a long 9 days and he still has one more today of travel. He is supposed to arrive Wednesday afternoon. I am so excited to see him and really miss him. Even though I was with people the entire time, I felt alone. I have a growing sense that my other half is missing. We are a well-oiled machine and I feel like the oil is gone. More than the breakfasts, diapers, dishes, cleaning, lifting, sleeping, etc that we share, we are witnesses to each other's life. We see one another and share life through similar eyes. We wear pink bracelets together.
All that to say these 10 days were stretching for me too. I was experiencing India second hand as well as experiencing single-motherhood with toddlers with special needs and everything else I do. I learned I need to do more with the kids during breakfast becuase Jut lets me sleep in and breakfast is hard. I can feed the dog. I can appreciate him and love him better.
I also had a struggle in Rockford. I was supposed to spend the weekend there but it was too hard. For many reasons, I left and came home. I couldn't handle the stress of being out of my semi-childproof home, away from Jut, back in Rockford. My mother and I have had a strained relationship for years and it is mostly because of me. I left before my sharp tounge was unleashed. I went to a place of refuge, my dear friend Kelly. She has awesome...even when Jayden drew in black crayon on her wall. Becuase of Christ refining yet another part of me, I was obedient and called my mom to apologize-something I don't do well. I have to say it was the most healing, positive conversation we have had in years. I have reached a point in my journey where I have to lay down all the boxes/expectations of other people to be, or say, or do what I want to meet my needs....and free them to be who they are. I want to love my mom for who God made her and let go of all the perfections that I wanted her to be for me. It is a process but I feel I am one step closer to healing that relationship.
Oprah has the most talented kids on her show today. I can hear the tv above me as I type while I see a father in the waiting room crying for his child. Why here, Oprah, and why today?
How do we navigate these two worlds?
Dr. Billings just came in to say Brooklyn did well and is out of surgery....everything was routine.I love that word, ROUTINE And at the same moment, I am overhearing the other family saying that their baby is their miracle baby and survived heart failure once before....I pray for that family.
This is so difficult. I pray that I can acknowledge both worlds and see God providing in both. He is comforting at the visitation, he is waiting patiently with the other family in the waiting room, and he is traveling with Jut and the boys. Today, He is with me going home.
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com
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