#tbt post 1: Jayden

To all my readers:
Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares.  Your words are such an encouragement to keep writing!
It’s funny. I thought this would be a fun adventure,  but quickly realized after looking for a “first TBT” post this was going to be an emotional ride.  With a regressive disorder, things looked a lot different back then….
So, welcome #TBT!

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Proud Mama

We’ve been here before.
It’s an all too familiar place.
It just didn’t happen so quickly the last time.
Regression.
The death sentence of Sanfilippo.
The last six months have been rough for Brooklyn.
The last six months have been difficult to watch for everyone that loves her.

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Courage

cour·age. ˈkərij,ˈkə-rij/. noun.
the ability to do something that frightens one.
“she called on all her courage to face the ordeal”
strength in the face of pain or grief.
“he fought his illness with great courage”
bravery, courageousness, pluck, pluckiness, valor, fearlessness, trepidity, nerve, daring, audacity, boldness, grit, truegrit, heroism, gallantry

The color purple represents “courage” in the MPS world. And many days, I don’t think I have much of it.

Like today.

I realized this morning, that I am struggling to “like” one of my children. Sure, I love her, but I am getting so tired of her “naughty” that I find it hard to want to be around her. Parents, can I get an “Amen”? She hits. She kicks. She talks back. She rips paper. She colors on everything. She is constantly seeking food. She antagonizes her sister, and “mother’s” her brother: both induce crying from her siblings. She is not winning the race for “most liked” in the Boyce home these days. She tells me “no” and “stop it”. All the time. And she want what she wants, when she wants it. Of course, she is way better at school. I even tried to sell her to Ama yesterday.

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buried dreams

Five years into Sanfilippo, the reality of “no treatment or no cure” has become a safe place for us.  We aren’t scared of this world anymore.

Holland, is home.
We gathered our worldly dreams for Jayden and Brooklyn and mentally buried them 6ft. under.

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updates regarding gene therapy, please read and share

Thank you, friends!
The response to my blog post and Eliza’s video, is amazing! Not only has the video gone viral, it is causing other media attention. Because of your sharing on Facebook, my last blog has over 3,000 views!

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A [potential] cure for Sanfilippo is here!

Dear friends and family-

 

It is with great joy and anticipation I write this! God has heard your prayers. 

 

There is a cure for Sanfilippo! Yes, you heard right! It is a miracle!  The very thing you have been praying for on our behalf is a reality. 

 

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hospital love.

 

I am weird, {for more than this reason, I know} but I really like hospitals.  I like being the patient and the mother.  I feel safe. When I am the patient, I have trained people caring for me and I don’t burden my loved ones.  I am also more forgiving and patient with strangers, and a sucker for pain meds.

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A cure for Sanfilippo!?

We never put all our eggs in one basket. We learned that in the beginning of our diagnosis when everyone said “this option, that option” would lead to treatment or a cure.  So far, nothing has come.

We also never get our hopes up. At least our hope in earthly things.  We believe Jesus Christ alone is our hope and if He wants to cure our children, He will in His time, in His way.  We are called only to trust Him.

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A parent’s perspective on going to church

Hello world…

I have been MIA on my blog…story of 2012. Not because I have nothing to say, but because I never have the time to say it.  I have been avoiding writing because I am holding out thinking I am going to catch up.  The last post was from August.  Since then, we have moved into our new home and time continues to push us into the next month.  I wanted to get pictures up of September-January before I started writing in real time again but two computer crashes later…I haven’t. Oh well, right?!

2013 has been a good year so far. I think a theme in my life these last two months has been, “what now?” “The house is complete, God what do you want to do with our story, our life?”  I catch myself thinking about my life mission.  “God, what have you called me to do? Where do I invest my energy and time beyond the never-ending task of motherhood and housekeeping?”  I miss the diagnosis days. I miss being overwhelmed with passion to write.  Desperate for the Lord to meet me in every moment and every day.  I don’t want to have the pain and sadness, but I want the peace that surpasses all understanding that came out of it.

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