How One Woman is Embracing Plan B After Her Son’s Tragic Accident: A Guest Feature by Kristen Clack

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Hold onto your seats, friends, and grab the tissue. I can’t wait for you to meet my friend Kristen. Her story is remarkable. But what is even more remarkable is her faith in the midst of her circumstances. She has such a contagious joy that can only be understood in the context of her Savior, Jesus.

What if your worst nightmare came true? Could you praise God in the midst? Kristen’s faith is a challenge to us all. Thank you so much, Kristen for sharing your story of going from Type A to Plan B with such grace and joy.

 

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It’s Never Too Late to Find Freedom From a Shameful Past: A Guest Feature By Dawn Stewart

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So…. I can’t wait to introduce you to my new friend, Dawn! You know when your heart is whispering something, and then you meet someone else who says their heart is whispering the SAME thing? That’s what happened! Dawn and I connected through a mutual friend and when she began to share about the beauty in brokenness, trying to keep up, and unlocking the truth– I knew our souls were connecting, and we all would learn so much from the story God is writing in Dawn. So lucky for us, when I asked her to share, she said YES!

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Confessions as I anticipate grief: part 1

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Confessions as I Anticipate Grief is a series of posts I will be releasing on StefanieBoyce.com. This is part one.

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“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”

-Ernest Hemingway, A Farewell to Arms

 

Continue reading “Confessions as I anticipate grief: part 1”

Journey to trusting God, for real….

Speaking of being open to special needs….

Justin and I have been on a journey since we began having children. We used to talk about how many kids we wanted, did we want boys, girls, or a combo… We never discussed having special needs, but did make passing comments once in a while that we would be perfect candidates for the job because of our faith, family, and network of support…. Little did we know…

Continue reading “Journey to trusting God, for real….”

Mighty indeed!

This week has been a bit of a ride emotionally for me. On Thursday, I celebrated my 29th birthday. Weird. I struggled to be “happy” that it was a day to celebrate me! In the past, I couldn’t think of anything better than a ME day! Now that everything happened…I just couldn’t fully get into celebrating me, and instead wanted to celebrate other people and God…weird, huh?

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I guess our blog has started a bit of a following! That makes me happy! I am glad to hear stories about God working through this already! People I don’t even know are reading and following our family.

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THE RESULTS

Thank you so much for your ongoing prayers and support. Justin has been really struggling through these weeks and trying to carry the burden of this on his own. Last night, Justin laided our children at God’s feet and God’s peace settled on our hearts last night. I think that is why we had to wait for the results. God is STILL and always will be good. We don’t understand why the results are a part of his will for our family, but we are going to rise above this and love our kids in ways we never could have imagined. We want people to see God’s mighty hand in this. He never promised an easy road here on earth, but he promised he would be with us through this. If we keep an eternal perspective, not a worldly one, we already see this as a blessing. Obviously this is not the future we imagined, but our kids are already showing people the mighty kingdom they will be a part of. All that to say…

Both Brooklyn and Jayden have MPS IIIA / Sanfilippo Sydrome. Sanfilippo Syndrome is a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.

On Tuesday, we will be hearing from the expert at Children’s and possibly begin a newer drug, genase (I think) that acts a a barrier to the build up. We will meet with them hopfully next week so I have more answers as to our next steps but we feel we are in good hands.

We want our children to live as “normal” as possible. We appreciate you just loving them like you did 3 weeks ago, before we knew this. Would you help us celebrate their lives now? Celebrate with us making memories with our children. Love on our kids. Let’s all not be sad now, we can be sad later. I want to play with my kids, enjoy their smiles, kiss on them, run after them, hold them, and be the best mom I can be. That is my promise to them.

We love you guys…please don’t stop praying. This is just the start to our journey. We need prayers for a treatment and cure, for our marriage to be strengthened, for our patience to superseed natural abilities, pray for sleep, pray for smiles, pray satan never gets a foothold in our home. Pray God always remains at the center of our hearts giving us the strength and grace we need in every moment!

PS…We are going to start by celebrating. On Saturday, October 31, at 6 pm, we are going to host a halloween party in honor of Jayden’s 3rd birthday. We were unable to have a party this summer because we had Brooklyn and for the last two years, we have hosted a halloween party. So, in keeping with tradition, and now my need to celebrate each birthday, we are having a party! It will be a costume party, and the theme is in honor of Jayden’s love for Bob the Builder, Handy Manny, (and Bubba and Daddy) so come dressed as a handy (wo)man! Overalls, flannels, tool belts, hard hats, etc. In leiu of gifts, Jayden is swimming in toys, please bring a dish to pass. We will provide punch, coffee, etc. Also, if you can’t stand the idea of not bringing a gift…please consider helping us finance our trip to Disney this December. We are going down for the national MPS conference and spending a few extra days at Disney around Dec 15-21.

Kids are welcome and can wear their halloween costume too! We can bob for apples and play some games. Maybe even a tractor ride! For those of you who attended in the past, the only character I will be playing is a mom madly in love with her kids.

Love you!

test results part one

It’s raining outside. I am listening to music, candles are lit and my house is warm and smells like fall. It makes me smile. Brooklyn is smiling in her swing. Jayden is at school. Jut is at work. These are the moments we are clinging to. This brief since of calm. Of God carrying us.

We contacted the genetic counselor from children’s lat night via e-mail to see if we could get Jayden’s test results prior to next wed as the days of hoping the best and thinking the worst were blending together. She called this morning and told us there are a series of three tests they were doing and the first test was testing his urine to confirm he has MPS. That came back positive. Basically we know he now has MPS we just don’t know what form of it he has. On Friday we will get confirmation on Hurlers Syndrome. Out of the two they think, this is the one we don’t want. If it comes back positive, there is a 50% chance Brooklyn will have it, and, although there is treatment, this is the worse of the two evils. If it comes back negative, we will find out Monday or Tuesday if it is Hunter’s Syndrome. Out of all the syndrome’s this is the better one with more success stories. It also consists of weekly trips to Chicago for treatment. There is a chance that it could also come back negative. If that is the case, more testing will done to see which syndrome he has. The Dr.’s suspect Hunter’s based on his presenting symptoms and the absence of cornial clouding (cloudy eyes). We are hoping now for Hunter’s as the others are worse and we are hoping for early and quick treatments and a mild case of it. That is the best scenerio. Pray with us for that specifically. So what’s next? More testing in all areas of Jayden’s life to see where he is on the progression of the disease and treatments with a specialist at Children’s in the city. There are no guarentees of a long future but the ERT treatments have proven very successful in delaying the diseases symptoms.

We are hanging in there. Jut was hoping for a mistake, that he didn’t have MPS. I think I knew he had it but how I am scared to hear further. We are still leaning on your words and prayers. We are still taking turns crying although my tears have dried up. We are clinging with our nails dug into the truth of God’s promises. His Words are sometimes the only thoughts we can come up with. We are thankful the answers are coming. We are thankful for every moment with our children, each other, and our family and friends. I was telling a friend, it feels like I was living in black and white and now I am living in color. I am sad this is what it took to make me see what it means to trust Christ. Please trust Him with us. Thanks…we love you!
The Boyces

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We want to thank you for the overwhelming response we have received. We couldn’t do this without you. please don’t stop praying. Did I mention how good God is?! He has put all of you in our lives…in this moment..to wrap us in a warm blanket of love as we face the cold. The comfort from God is directly coming from you. Your words, now nine pages long, are posted on our refrigerator, reminding us of God’s goodness! The words of encouragement, whether spoken in prayer, in tears, in e-mails are like sweet honey. We are clinging to them. So, thank you just doesn’t seem like enough.

Jut and I are hanging in there. We each take turns crying. We are being optimistic as we try to process what we know. There has been some great info we have read online and we are hopeful. We are just trying to survive the waiting game as days are blending together. The most important thing is for us to not loose sight of today. Today is another gift with our children. We can’t loose sight of this. We again are thankful to God for helping us see the good in all of this. We are trying to avoid the darkness of “what if?” and we are trying to enjoy all the moments we have. We are learning to not just “do” life but embrace it. We are feeling the urgancy to cling to God like never before. Our days are not promised…nor are they IT…what wonderful things Heaven promises!

Please, enjoy your family and loved ones today. As you think of our family…rejoice in God and take a moment to intentionally enjoy family as we are enjoying ours.

We will keep you posted!