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…

We had wanted a boy first and then a girl-and we got it. God was tracking with us ( ). Three years apart was great-good job, God. In my mind, our family was complete. My white picket fence. But, as our white picket fence was bulldozed over by God allowing our children to have Sanfilippo, we also started questioning every “plan” for our future we had made, along with a host of other questions. Key word: WE. Sure, we had prayed that God would bless our plans in the past, but I am embarrassed to say I never prayed, “your will, not mine, Lord.” At least not with complete faith and trust in it.

You know that song, “where you go, I’ll go, where you stay, I’ll stay, when you move, I’ll move…..I will follow…”
I don’t like it.
I mean, not many people, if we are being honest, do. I hate dying to my plans and my wants. And I have learned that even seemingly good plans, or “my heart’s desire” plans are always not blessed by God.

When Justin started talking about adding to our family weeks after the diagnosis two years ago, I thought he had lost his mind. Did he forget we said 2?! Sanfilippo or not, 2?! Did you hear the Doctors?! The challenges of managing 2?! But, I went with it, trying to see how we could take matters into our own hands and get us a non-Sanfilippo baby. But, at least now I was adding, “your will, not mine, Lord” to our plans. In fact, over a year and a half went by….and God was silent. In fact, we both got to a place where we were and are praying, , “where you go, I’ll go, where you stay, I’ll stay, when you move, I’ll move…..I will follow…” and hanging on for dear life. And, for the first time, meant it.

We explored sperm donation…getting lists of donors and contacting agencies, even picking out potential Australian donors that were at least 6.3 and could play basketball. We met with a fertility clinic with a Dr. that had memorized a script that he rattled off saying if I took this or that drug…we could get pregnant, even lying saying we could test my eggs before adding sperm to ensure us we would have no child with Sanfilippo. As I stared at the talking head, I couldn’t help but stare at the numerous football memorabilia stacked on his shelves that poor families wanting a baby, purchased for him.

IVF wasn’t an option because for us, we couldn’t imagine discarding children with Sanfilippo, and implanting only “healthy” embryos. It just wasn’t an option we were ethically comfortable with.

As our journey continued, I explored adoption and found out that we would be eligible like any other family, but would probably not be selected…after classes, days of paperwork, home visits, etc. unless the child had special needs or was an international special needs adoption where the government would choose us because they would see our experience as a positive.

So, starting in October, I started looking at profiles. I was drawn to Asian children with minor special needs….I also looked at domestic, older children, but given our children couldn’t tell us if something bad happened, we couldn’t take that risk.

As we started talking about adopting special needs, we got to a place where we began to imagine what it would look like to just stop trying to “manufacture” a child. What if we just went for it…..naturally? What were we running from? If we trust God, and he is in charge, no matter what we do we will have a special needs child if we are supposed to. And-what is so terrible about that anyway? We have a 75% chance of having a child without Sanfilippo…and we are completely comfortable with Sanfilippo. We know it, we love Jayden and Brooklyn, and we would love a third child just the same.

I remember on New Year’s, Jan 2011, God just asking me to be open to a 3rd child, but never in all my searching did he confirm a way to go. For two years, we sat and waited. Doesn’t seem that long looking back. Every option we looked into wasn’t wrong….just never went anywhere……

So-in September, Justin and I started half-joking, now that we are building a house, we should go for it…naturally. And, 24 hours later, we were pregnant.

As I write, I am 13 weeks pregnant with our 3rd child. It may have Sanfilippo. In fact, to me, it does until someone says it doesn’t. And we are REALLY ok with it. We obviously don’t want any of our children to suffer or die…but we took a leap of faith, and are trusting that God is totally in control of this little life. What I don’t mean is that we secretly want it to be “non-Sanfilippo”. To us, that means that Jayden or Brooklyn’s life is less valuable or they are less wanted because of the way God made them. We disagree. Sanfilippo just makes them different, but they are just as easy to love, to mother, to fight for……

We are thrilled to welcome this little one….God willing! And, we will love whatever He wants us to love. I am human-and when I begin to worry about how we will manage, I remember to simply pray, “your will, God, not mine-let your desires be my desires.” I am due June 3, and we have decided to not risk a miscarriage and wait to test the baby for Sanfilippo until it is here. We are even thinking to wait to find out the sex! I know, now we are getting crazy!!

6 weeks


11 weeks

Where I am: 2 years in

October came and went this year with no mention of it being two years since our diagnosis. And, that is just fine with us. As we settle in to this lifestyle, we have learned to really embrace Sanfilippo as a welcomed friend more than an intruder. Let me be very clear. It pains me to see Jayden regressing. It hurts to see Brooklyn still progressing, knowing those skills will soon be a memory. That is my human desire talking. But, I can spend my days counting down till we loose them, or just embrace them while they are here.

And, although we may never have answers this side of heaven as to why God made them this way, we have gotten to a point where we actually see the many blessings hidden in Sanfilippo. Our children’s salvation is secure. They will never be a part of this awful world. They will never hurt someone’s feelings. They will never judge anyone. They never have to work and have a crummy boss. They never will have their heart broken. They will never complain that they don’t have this or that. They will never think life is unfair. They will never talk back, get in a fight, or cause a car accident. I will never have to worry what they are doing out past curfew, whether or not they are hurting themselves, partying too much, or being fake at school. They will live their life as a blessing-always living in the moment. They will fade away slowly from this earth, only to lean more into their real home-heaven.

If we believe heaven is better than here, why do we think death is so bad? I get that is sucks for the people we leave behind, but I can’t wait to go there and see Jayden and Brooklyn restored….for me to be restored, and in the presence of God. What an awesome thought.

Further, in the last 2 years, God has taught me to embrace Psalm 139 in a new way. My kids were made just the way He wanted. He didn’t fall asleep on the job, or make a mistake. He wanted them just the way they are. And it isn’t the way I wanted them at first, but the more I ask God to make my desires His desires, I see snapshots of His plan. I actually feel weird that I am seeing my children more like God sees them and not the way the world sees them. I feel guilty, like I am a bad mom if I don’t whine about what they can’t do all the time. Isn’t that what I am supposed to do? I feel bad if I like that they are the way they are. A good mom wants their child to be normal, right? I feel pressure to want them to be a part of this world. But for me, those are just lies. And the more I embrace them-the more I feel freedom in loving them better.

I blogged about a party I went to with a bunch of 5 year olds. It was hard to see them doing what Jayden doesn’t do, until I looked at him. He was so happy in his own world. Content. At Peace. Loved. Accepted by the only people that matter. THAT is the life we all want and my kids have it. It’s just not packaged the way we all want to see it. I think everyone would be happier if we all had Sanfilippo. I think we would all be better if we stopped hoping people with special needs were more like us and started wishing we were more like them. My children are not less than, they are more than. May I be so bold to say I think they are better than normal in so many ways. A true gift. I am reminded of 1 Samuel 16:7 7 But the LORD said to Samuel, “Do not consider his appearance or his height (he was big and strong), for I have rejected him. The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.” My kids are just different than the world and we Christians are called to be just that. We without Sanfilippo have more to let go of…where they were never holding the things we have to lay down. In a way, they have already died to so much of the world because they never had it in the first place. Matthew 10:39
New Living Translation (NLT) says 39 If you cling to your life, you will lose it; but if you give up your life for me, you will find it.

I am also brought back to Romans 12:Place Your Life Before God
1-2 So here's what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don't become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You'll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you.
3I'm speaking to you out of deep gratitude for all that God has given me, and especially as I have responsibilities in relation to you. Living then, as every one of you does, in pure grace, it's important that you not misinterpret yourselves as people who are bringing this goodness to God. No, God brings it all to you. The only accurate way to understand ourselves is by what God is and by what he does for us, not by what we are and what we do for him.
4-6In this way we are like the various parts of a human body. Each part gets its meaning from the body as a whole, not the other way around. The body we're talking about is Christ's body of chosen people. Each of us finds our meaning and function as a part of his body. But as a chopped-off finger or cut-off toe we wouldn't amount to much, would we? So since we find ourselves fashioned into all these excellently formed and marvelously functioning parts in Christ's body, let's just go ahead and be what we were made to be, without enviously or pridefully comparing ourselves with each other, or trying to be something we aren't. 6-8If you preach, just preach God's Message, nothing else; if you help, just help, don't take over; if you teach, stick to your teaching; if you give encouraging guidance, be careful that you don't get bossy; if you're put in charge, don't manipulate; if you're called to give aid to people in distress, keep your eyes open and be quick to respond; if you work with the disadvantaged, don't let yourself get irritated with them or depressed by them. Keep a smile on your face. 9-10Love from the center of who you are; don't fake it. Run for dear life from evil; hold on for dear life to good. Be good friends who love deeply; practice playing second fiddle.
11-13Don't burn out; keep yourselves fueled and aflame. Be alert servants of the Master, cheerfully expectant. Don't quit in hard times; pray all the harder. Help needy Christians; be inventive in hospitality.
14-16Bless your enemies; no cursing under your breath. Laugh with your happy friends when they're happy; share tears when they're down. Get along with each other; don't be stuck-up. Make friends with nobodies; don't be the great somebody. 17-19Don't hit back; discover beauty in everyone. If you've got it in you, get along with everybody. Don't insist on getting even; that's not for you to do. "I'll do the judging," says God. "I'll take care of it."
20-21Our Scriptures tell us that if you see your enemy hungry, go buy that person lunch, or if he's thirsty, get him a drink. Your generosity will surprise him with goodness. Don't let evil get the best of you; get the best of evil by doing good.

Where does it say, conform to the world and what it says is good? Nowhere. So if God made Jayden and Brooklyn, I have to conform to how He sees them and I am starting, after 2 years, to really appreciate it. I wish everyone was open to the gift that a child with special needs brings. I am gratful that God has chosen me to see such a beautiful side of heaven through my children.

Oct 28-31: Halloween weekend

Friday we went to Jayden’s fall fest at school…it was CRAZY packed and a bit unorganized, so we didn’t stay long. Saturday, we hung out at the house all day and watched the men work on the house and Sunday, we took the kids trick-or-treating on Boyce lane to the grandparents and aunt and uncle. We joked that next year we can just meet them in the driveway! The kids enjoyed playing king of the hill with Bubba better than trick-or-treating! Gotta love trying to get a family photo....but we try!

Jayden was his dad (who works at Beach Pump and Well)
Brooklyn was a bee (again)

Then we went to youth group and Brooklyn did NOT like the kids in costume! It was a laid back Halloween, which was a nice change of pace from years past.

Oct 22: Chili Cook off

The chili cook off “OPEN” house was a huge success! We had a great turn out, made the local paper, and raised over $1,000 just from the chili votes. I couldn’t have asked for a more beautiful day! Thank you to the 12 people that brought chili, Steve Brandon, Sherry Brandon, Micah Montondo, Cindy Jorgenson, Jason Alm, Lauren Ball, Concetta Kellough, Joan Boyce, Jill Boyce, Sarah Lerner, Kelly Hubert, and Gil Miller. YUM! And thanks to Kalie and Robert for cornbread and the video. Thanks to Joan for helping decorate, and a special thanks to Jan Brooks for an over the top carmel apple bar and cornbread! Thank you Jan Devore for the pop. It was a beautiful day, and we celebrated as the men worked! FUN!
She also interviewed our friends so there are a few of them in the paper as well with their political opinions!

http://www.zion-bentonnews.com/

PS still looking for any photos of the day if you have them!

Our friends and family left us blessings on the plywood that will be a part of our roof...here are a few:

Oct 18: Lunch with Kelly in the city

One of the best things about Sanfilippo are the friendships you make with other Sanfilippo parents. We are blessed beyond measure to have the Huberts in our lives. I treasure every moment I get with Kelly so it was a no brainer for Brooklyn and I to go meet her and Liv in the city at Children’s between Liv’s appointments for lunch. Although it was a short visit, it was so good to see them!

Kelly-I love you so much and adore our friendship. Whenever, Wherever….whatever you need….

Oct 14-15: Rockford and Lucy’s Birthday

Joan and I drove out to Rockford Friday with the kids and enjoyed a great dinner that Steve made. Then Saturday, we woke up and while Steve took Jayden and my mom took Brooklyn, we went to a craft show at my mom’s church. After a slow start, we got some great business and made $360 selling Joan’s scrabble tile necklaces. Thank you, Joan, for ALL the hours and hard work you continue to put into this! As if watching the kids everyday isn’t enough, you have a business that is building our house! She has made over $7,000 alone from the jewelry, because she donates 100% to build with the Boyces. It’s amazing what a Grandma’s love and a great idea can accomplish! Thank you, too, to all the people ordering and promoting the necklaces-they are so much fun. Go to www.oursweetbee.blogspot.com to learn more or order a necklace. They make great gifts for Christmas. Each tile is only $5 and a chain is $10 and she does custom orders too!

Then, we rushed home to celebrate Lucy’s 2nd birthday at the Rec Plex. God bless the men and Sarah, for getting in the pool so the kiddos could play. For the record, I forgot the top half of my swim suit….
Thanks Ri, Bill, and Lucy for some fun memories and yummy food and great grab bags. We love you Lucy Jane, Happy Birthday!

Oct 14: Picture day for J

I always worry about picture day-and it’s always a surprise when we get them back to see how the photographers captured Jayden. I have to say, this year, they did great!

Oct 10: digging the hole and pouring the foundation

The team of volunteers started digging and pouring the foundation for our new, handicapped home near family! After two years of our friend and families efforts, they were able to raise $100,000 to start the project. Obviously, this will not complete the home, but we hope to get it framed and closed up before winter, and work on the rest as the money is available. I have to fight tears when I am over at the site. Watching all these men volunteer their time and work so hard for us is humbling. What a sacrifice. They have stepped away from their families, their lives, to help us and I will forever be grateful. If you are interested, you can watch time-lapse videos as the home is completed at www.buildwiththeboyces.com/building

Oct 4: genetics appt

Drove to the city for our 6 month appointment with Dr Burton. The kids seem to be doing well! All in all, a “routine” check-up which we love to have!

Oct 1: Brayden’s birthday

Today we went to Brayden’s 5th birthday party. Brayden is 10 weeks younger than Jayden, and they have been friends since they were born. It was a beautiful day and wonderful outdoor party, with tractor rides, train rides, yummy food and a play set.
I will be honest, it was hard to be there, seeing all of the boys Jayden's age running and playing together, while Jayden played with us on the play set. He didn’t care. He would watch the boys then go back to playing with us, but it broke my heart. Parents stood around and lightly supervised their kids while they chatted about how as their children they get physically easier to take care of….while we tried to smile as we went up and down the play set with our kids. Our lives are just different. Not even bad. It was just a sad reminder of what Jayden can’t do, but a happy reminder that we are happy being different.
Sometimes, I wish I could walk into situations like that with that confidence I feel inside. Proud of my children, not sad or wishing they were "normal". I LOVE them JUST the way God made them, but selfishly, I wish they were a part of this world. I wish I could show people that the little things don’t matter, and kill them with kindness. I want them to think when I leave, wow. God shines so bright. I want to love my kids with the freedom they do. I want what she’s got inside. But, honestly, I mostly freeze. I become quiet and don’t want to talk in fear of what dumb thing they may ask or say---or what I may say back. Maybe this doesn't make sense to you...and that's ok.
God bless Kristen. She totally gets how we feel but didn’t want to leave us out….which would have been worse to not be invited. It just is what it is and I am not going to pretend it isn’t hard. Thank you, Brandts for including us and always making us feel welcome and loved. We love Brayden, and were so happy to share in his day!

Sept 21: Missouri girls road trip

Talk about the perfect get away. Now, I love my family, but there is nothing like taking an extended weekend with my girls, road-trippin’ it to Aunt Sue’s listening to old 90’s hits! Angie, Michelle, Sarah, and I made the 10 hour journey to Branson and really had a blast! We “slept in”, drank coffee on the porch, ate breakfast in peace, took our time getting ready, and shopped all day. I was only responsible for feeding, dressing, bathing, and wiping one person, ME! Don’t get me wrong, I am not complaining about taking care of my kids, I just APPRECIATE both times! Thank you to Jut and Joan for pulling most of the weight when I was gone. I really couldn’t have left if you guys wouldn’t have helped out so, thank you!

To my girls, thanks for the fun, laughter, tears, car sickness, bad singing, deer legs, inside jokes, and memories! Love you!

Sue-thank you for hosting, for all your great ideas of things to do, your stories, treating us to lunch and pickles, and our photo shoot! We all really like you too!