July...a bitter sweet month

July marked a season of change for our family. This month, we found out Elliotte doesn’t have Sanfilippo. It came with mixed emotions. On one hand, we were happy for Elliotte and the excitement of firsts we will be able to experience with her. On the other hand, it brought new sadness for our kids. I think I mentioned in previous posts this experience in length.  Elliotte is a reminder of all the things Jayden and Brooklyn can’t do, at the same time, we celebrate she will be able to do new things!  It is hard to say the least. 

Most of our life is bitter sweet.  July being no exception as it also brought about Jayden and Brooklyn’s birthdays.  Birthdays are such a celebration. On the one hand, we are thrilled we have had another year with them, but, at the same time, it marks a date closer to the end. Time flies when you are hanging on to the lives of your children.  Brooklyn turned 3 on July 14. It marks a looming decline of skills. Brooklyn has exceeded expectations and continues to amaze us with how well she is doing. The more skills, I dread, the harder it will be when they are gone.  She sings songs, says “I love you” (and a ton of other words) and understands. This makes discipline harder….but one smile from her the difficulty doesn’t matter…much, HA! 

Jayden turned 6, July 25. My gentle giant is getting to be such a big boy.  We see the effects of Sanfilippo and it gives us new appreciation for all the things he still can do. It is just a matter of time before walking, eating, and other things disappear. I treasure his laugh, his smile, his soul….I can’t imagine not seeing it everyday.  But, such is life.  God hasn’t prepared me for those moments.  It’s hard being a realist.  I have to remind myself that it is ok to be sad and at the same time, trust God.  It is this dance, so to speak. I can’t get optimistic or pessimistic.  I acknowledge the pain for what it is, while simultaneously placing my hope in Christ and what He did on the cross as being enough. Did I mention it’s hard?   

I also had a wonderful time with my dear friend, Kelly Hubert at the Tenderheart luncheon for the third year in a row. Joan made scrabble tile necklaces for every lady. Charles Tillman of the Bears invited me up to share our story and even put his arm around me! Yeah, I am pretty much famous now! Ha!  Charles, and his beautiful wife, Jackie are simply amazing. They are who you want every person with fame and money to be like. The entire luncheon was God honoring as woman after woman shared thanks to the Tillmans for their private generosity during the year to some struggling families and many women gave glory to Christ for their strength. You would think being in a room with 100 women who have done their time in Children’s hospitals and some even loosing children would be aweful, but it was the most comforting and beautiful place to be.  As much as we want to run from pain, or are scared to enter into someone elses, I truly believe that is where God makes available His most beautiful blessings.

We also had a chance to witness heaven on earth during a simple children’s parade at Jayden’s school. With “God bless America” over the loudspeakers, Joan and I entered fighting tears at the beauty of all the students lined up in blue and red.  Many with teachers by their side or pushing their wheelchairs, they paraded around the building waving American flags. I was so proud to live in a country that doesn’t throw away these beautiful creations.  What a blessing to witness.

We also celebrated with our dear friends, Jason and Sarah Alm, as they welcomed Mr. Luca Roger Alm into their family. Talk about a God story. For years they struggled with fertility and decided to adopt. All the money came in right in time for them to be chosen by the birth mom, and within 48 hours of getting a call they were chosen, they brought their son home. Awesome!

We also rejoiced with our friends, Jay and Michelle, as they celebrated their son Bonn’s birthday. We had a nice time seeing their new house and playing with all things Thomas. 

We love our friends so much and the Henry’s are no exception! We had a little visit from them. They are so easy to be around and their kids are a dream. They get their sweetness from their parents.  Jud and Katie are amazing! 

We also have been enjoying our “East Coast” friends, the Petersens. They have 3 boys and a fourth on the way. They too, are so fun to be with.  Heidi cracks me up…and we wonder where Logan gets his eccentric personality!

July. What a bitter sweet blessing!

June 2012...recap

June 1: Jayden graduates

My little man has “graduated” from Kindergarten! Time sure flies. 

Still on pain medication, I made my way from the hospital, after just giving birth to Ellie, and sat myself in the packed gym on a metal chair to watch my son graduate. I treasure this moment.  Jayden even got a special award for being a good reader!  My sweet husband stepped in to  be Jayden’s 1-on-1 aide for the program (she was unable to make it). He sang the songs and moved Jayden’s hands to the moves.  It was such a special moment. With every milestone that passes, we endure the sadness and the joy. On the one hand, we are sad it is passing. In the same breath, we are overjoyed that he is still here.  Many of our conversations start like this….”Remember when he could…..and end with, I am glad he is still…” Bitter sweet are these moments indeed. 

 June 9: Christopher

Christopher, a man living with MPS II, came to stay with us for a few days to add us, along with 40 other families, to a documentary he is doing documenting how families live with MPS.  It was great meeting Christopher, and we are so thankful he has dedicated his life to capturing the journey.  If you have an hour, please check it out. (especially 57 minutes in). At the beginning of the video, you will also see Brooklyn rocking it out to Barney! http://youtu.be/6q213rvHRJA

June 12: Jayden at Summer school

Jayden begins attending Laremont! I have posted before about how blessed we are to have this staff and school surrounding Jayden.  We can’t stress how grateful we are-Thank you!

June 23: Erik and Casey Ness wedding

One of the best weddings I have been to! Not only was it a beautiful tent reception on a farm, decorated with lights and pinterest décor, it was a beautiful picture of the body of Christ. The Ness and Anderson families are very special to us. Bonnie, Erik’s mom, passed away from a brain aneurism a few years ago. She was a co-worker, mentor, and special friend. We served in youth ministry together and she was always my roommate on staff retreats. I adored Bonnie. I still miss her dearly. I can still hear and see her smile. Her daughter, Meilssa, was my first of many “favorites” in youth group. I had her my first year as a Junior. She is one amazing young woman. Her dad, Steve, is one of the best guys around. He is the definition of a servant heart and makes the best wings around! He is one of the 3 guys responsible for the house we live in now. Erik is cut from this loin. The Anderson’s have had their own journey. Casey came up through our youth ministry and was a born leader. Her father, Dave, did all the electric in our home. Her mom, was our realtor. Sue, another inspirational woman, has battled years with breast and now, brain cancer. Her faith is the most beautiful thing I have seen in a person. Its like being around Jesus….just like Bonnie. The wedding was so special as we saw our church community gather to remember Bonnie, celebrate Sue being there, and the union of Erik and Casey. Although young, they have learned how to live out their love for Jesus and it is so refreshing to see. Thank you for letting us be just one of the many people who are honored to go on this journey with you, Ness/Anderson’s. The wedding, I imagine, will be much like the banquet with Jesus one day!

June 29: Alan and Mallory

A totally different, but equally special wedding I attended the next weekend was of my dear friend, Alan and his beautiful wife, Mallory. Alan and I have been like brother and sister since 8^th grade. I have always enjoyed his humor, his caring heart, and the way he has always looked out for me. I had the honor of being a part of their special day doing a reading at the ceremony. The wedding was a reflection of them and it was great seeing a lot of old and dear friends.

June has been a great time bonding with Ellie and enjoying the outdoors!

 

 

May Updates....in November

Trying to catch up....

May 5, 2012: Kalie’s Shower

We had a great time hosting Kalie’s shower (Justin’s cousin)! The decorations were so fun to make and the food was great! Our theme was the “oh, the places he will go…” based on her travel themed nursery. We had luggage tags as favors, and decorated with maps, green and blue. We did it open house style, which I thought was so nice so people could come and go as they wished. 

Kalie are her husband, Robert, are so special to us! They were the catalyst in building our website and getting the fundraising together to build our house.  They are going to be great parents!

 May 6, 2012: Juts Birthday

Justin celebrated his 32^nd birthday. I love him so much! He is a great dad, husband and father!  He would never tell anyone, but do you know what he does now for his birthday?  He donates his birthday money to Harvest India, an organization dear to his heart after going there on a mission trip. We just wish India was closer so we could be more of a part of what they are doing! Here is a link if you are interested in learning more; www.harvestindia.org

May 7-10, 2012: Minnesota round 3

Well, I am big and pregnant, so Joan and Jut to the trip to Minnesota with the kiddos!  THANK YOU Joan for doing this so our kids could continue to participate!

Jayden is doing well, but has tested at only 13 months.  His strength is his mobility, and they said that he moves better than many Sanfilippo kiddos his age! Keep it up, buddy!  If you don’t believe us, watch him dribble a basketball!

Brooklyn is still progressing! Great news! Although she is still delayed, she tested at a 4.5 year old level in her domestic play skills. She loves dolls, singing, cooking in the kitchen and cleaning! Way to go, Beeba! 

It is always hard hearing the news that they aren’t at a normal age range. But, we know that is the reality and try to focus on all the things they CAN do, and make the best of what they need help with. We are so thankful for the team in Minnesota studying Sanfilippo with a hope soon for treatment or a cure. It may not be something we see in Jayden or Brooklyn’s lifetime, but they are heroes in my eyes for helping other children in the future.

May 23, 2012: Laremont, Jaydens new school

Summer school for Jayden is a go! I am SO VERY THANKFUL for a school that goes above and beyond serving students that have severe to profound disabilities. The spirit of the school is positive, and contagious!  They are fantastic advocates for Jayden and I didn’t have to fight for one thing! Jayden’s teacher even called me before school started to get to know us and explain the school. Although it comes with some sadness that this is the school he is at in first grade (we were hoping he could do public school until high school) we believe with all our heart this is the best place for him. They have 6 kids in each class, teacher aides, nurses, every adaptive communication, mobility, special ed-anything at their brand new facility.  It is state of the art like the staff.  Again, I am thankful. Thankful that he is just like his peers, he is loved, he is challenged, he is not being bullied or made fun of, and he can learn just how he needs to. Thank you LAREMONT!

May 30 also brought the arrival of Miss Elliotte Brynn, happy birthday Ellie! (see separate blog posts)

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!