Back in the Saddle

4 weeks ago.

My last post was 4 weeks ago.  And, it wasn’t even my post. It was my dear friend Michelle’s guest post. I am guessing it was the busyness of the school year ending, writers block, laziness, or a bit of everything combined, but I need to get back on the saddle.

Here’s the skinny on the last 4 weeks: Continue reading “Back in the Saddle”

it takes a village


Do you know who these lovely ladies are? 
 
Part of our village. Therapists. Teachers. Social Workers. Psychologists. District Reps. Hearing Itinerants. Principals. 
 
And this is just the tip of the iceberg. 
 
There are hundreds more. Teacher aids, nurses, doctors, specialists, case workers, grandparents, friends, volunteers, buddies, and teenagers. Some in the past, some still with us, and even more to come.
 

Continue reading “it takes a village”

#tbt post 2: Sweet Voices

Jayden and Brooklyn spend a ton of time at doctors offices.  Days of being weighed, touched, poked, and tested.  In fact, we just got back from participating in the Natural History Study of Sanfilippo being completed in Columbus, Ohio.  We started in July and this was our six month check up.  I am sure you all want the details because the doctors there are working on gene therapy-a potential cure/treatment for children with Sanfilippo.

Continue reading “#tbt post 2: Sweet Voices”

Welcome to BOYCE LANE!

Come on in and get comfortable! I like to imagine you stopped by for a warm cup of coffee and great conversation. We both put a blanket over our legs, the warmth of the sun shining through the windows. The table is sticky, but we don’t care. We talk, we laugh, we learn, and we cry.

This blog is my humble attempt to chronicle my journey and give you an inside look at my life with three amazing children who continue to reveal God’s beauty to all who choose to look. I would love for you to join me as I navigate both this beauty and the pain, and as you do, I hope parts of my story resonate with yours. Because at the end of the day, we all experience beauty and pain at one time or another, right? And oftentimes, they even co-exist.

Continue reading “Welcome to BOYCE LANE!”

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.

Continue reading “Proud Mama”

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.

Continue reading “May Updates….in November”

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.

Continue reading “Where I am: 2 years in”

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!

Continue reading “Oct 28-31: Halloween weekend”