Buil”t” with the Boyces and the next chapter…

As of 9.11.12, we are proud owners of a beautiful home, mortgage free, paid for and built by our community. How to you even begin to say thank you?! We are beyond words grateful. Every morning I wake up in this beautiful home I am so thankful. There’s not much to complain about these days. The little things just don’t seem to matter much. Our kids are settled and a sense of peace and calm has rested upon our home. It’s a deep exhale I have been craving for 3 years.

We have slowly been making this house a home. I am being patient in my decorating, trying to keep the clutter out and surrounding our family with positive thoughts. In Jayden and Brooklyn’s room we have letters from their teachers posted about what a difference they have made in their teacher’s life. We have a dry erase board for the quote of the day- Scripture says to think on things that are pure, true, praiseworthy…so that is a good reminder to do so. Pictures will be the last to go up…still working on that. The neighbors aren’t that bad either 🙂 (we live on Boyce lane next to Justin’s Aunt and Uncle, and Mom and Dad). We are enjoying being so close to Justin’s work (that’s in the back yard :)). The school district is great and everyone is settling in. We are so excited to finally be here.

Dreaming about this house helped me fall asleep in the early nights of our diagnosis. It seems so long ago now. I can’t believe that in three years, a community was able to give so much to us. It is a miracle. If you are reading this, I am assuming you have shared in our journey. Whether you have given your time, money, talents or prayer, we want to show you what you have done and thank you. Please stop by our open house, Saturday, October 20 from 11-4 and check it out! I am always at a loss for words when it comes to thanking people. I just don’t think words give my gratitude justice. I am so blessed to have our children, our home, our loving community of friends, family and even strangers. Thank you for being a part of our story.

We will also be celebrating Jayden‘s and Brooklyn’s birthdays (they were in July and we were between houses). Please don’t feel pressured to get a gift. Make a wish just donated a TON of stuff to them. If you still want to give, please consider making a donation in their name to LivLife. (www.livlife.us)

Finally, if you think about it, we are entering a new phase of our journey and are in need of some prayer and direction. We want to continue the momentum of Build with the Boyces in a new way. I am not quite sure what that would look like, but for a year now, I have been praying about what God wants to do with our story. Everyone has a story, and I just don’t know how and where God wants to use ours. One thing I think I am leaning into is possibly writing a book. I feel so inadequate in my writing ability and quite frankly don’t know who would want to read it but a few people have said , “you should write a book”, so I just might give it a go. I am thinking it would be a collection of some of my thoughts, blogs, stories, etc.

Something else that has been on my heart is integrating the world of “special needs” into the world of “needs”. God is continually teaching me that our kids are beautiful just the way he made them. It wasn’t His plan B. I wouldn’t change them for the world. Many MPS parents would not agree with me, I know. A cure is a big deal and some people can’t get past “fixing” their children. And believe me, I get that. But, pain is pain and we all get it in different forms. I love the quote that says, “life isn’t about waiting form the storm to pass, it is about learning to dance in the rain.” It is a universal experience we share being human, suffering. I wish it wasn’t so cause it hurts so much but I believe God has a plan, and it is good. Augh.

But, I don’t want Jayden and Brooklyn to be a part of this world because that is not wat GOD wants. And I want my thoughts to be what God wants. So, until He changes His mind to heal them, I will continue to embrace how God made them NOW. Sanfilippo protects them, in a way. They don’t understand when people are mean, they love the way God teaches us to love. They are a blessing to the people around them. They are pure, and have child-like faith. They model what we are striving to be. I think my kids are as perfect as they come-even with Sanfilippo. Perspective truly changes things. The things that make me sad are when they are in pain and the thought of not being able to sit at their feet and learn all they have to teach me. Not be able to laugh with them, kiss them, hold them, and enjoy their souls in the physical world. I have such a short time. But that is universal. God never wanted us to experience death or separation, which is why Heaven is eternal. And why I want to go there so bad.

Anyway, this is the main reason I don’t think parents of special needs kids should hide in the world of like-minded families ALL the time. Sure, we NEED others that really get our unique struggles, but we have an opportunity to bless people that don’t have special needs with our kids. And, even as I write this, I am dreading a 6 year old birthday party today that Jayden is attending. I SO wanted to hide! Not hiding, and facing the world’s harsh attitude is heartbreaking for a mother. I know my kids don’t hurt from mean words people say about them, or how they stare, or other kids ignoring my kids, but I do. Events like these are a reminder of how different Jayden is and it stirs my human desires for him to be accepted, those selfish desires that I fight so hard against. That somehow, my plan for their life is better than God’s. But, I RSVPed for this reason. Having a child that is so different is like having ten thousand dollars and keeping it all for myself. It is a rich blessing to share with the world. I think our kids are valuable and have gifts. We have to teach people how to see them like we do.

I feel that Christians should be the people that get this done, and I see teenagers leading the pack. I would love for there to be a safe place in every church, where parents can get respite, encounter God, feel the love like we have from other believers, and their children are embraced. There are a few teenagers in my youth group that ADORE our kids. They are leading the pack, so to speak, of what it looks like to “lower the mat”. (Mark 2)

I am rambling. All this to say, these thoughts keep bouncing around in my head of what God wants me to do with my time, energy, influence, and money. If I am completely dreaming, I write a book, the money is used to fund a ministry where I could go help churches/youth groups establish a ministry to serve families with special needs kids from the perspective that the kids are actually a privilege and honor to be with (like a famous person) and have a lot to teach us, lay folk. We don’t need a separate hiding spot for the kids and families. They don’t always need their separate room/bible study or group. They are a part of a larger family and have things to offer a normal group of moms, a room full of normal Sunday school kids, and a normal high school youth group. There is a ministry that already does this called the buddy break, and I really like their model.

Are your wheels turning?? Mine are.

Ok, I will wrap this up. Prayer needed. Chili at our house Oct 20. Many thanks! I am blessed!

One thought on “Buil”t” with the Boyces and the next chapter…

  1. Wow, Stefanie – what a wonderful post. You do not know me. My husband is your cousin Sarah's husband's uncle. Sarah and I have only met once, but we are FB friends and that is where I learned about Jayden and Brooklyn and San Fillipo. I have followed your blog since the Pepsi challenge days along with several blogs of families who have children with Niemann Pick Disease, another rare and ugly thief of our littles. Please know how much all of your stories have changed my life. You are so right. Jayden and Brooklyn have a powerful and beautiful message to send and you are their voice. Your acceptance of their perfection and your determination to live love and optimize and treasure every precious moment you have with them is such a tremendous reminder that we all should be doing that. I have been fortunate enough to have not had to deal with such unthinkable circumstances so far in my life, but having the privilege of sharing in your journey and those of my other blog families (and I say “my” because I feel that I know and love all of you) has made me so much more aware of how fleeting our time here is and how important it is to make the most of every moment and every experience. I sound a little “gushy” but my life perspective has truly been changed by these beautiful children and the lessons they can teach us all if we will just take the time to listen. Thank you for sharing; I look forward to seeing where you are headed next!


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