We’ve been here before.
It’s an all too familiar place.
It just didn’t happen so quickly the last time.
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.
One year ago, we were getting reports from the doctors in Minnesota that Brooklyn was at 31 months, developmentally. She was talking, singing, playing, matching, and knew her colors. Although she was still far behind her typical peers, she was above average for Sanfilippo. The doctors also said when kids like her begin regressing, it is anything but gradual.
We were sad and proud at the same time.
Jayden didn’t have as much to lose and when he did, it was pretty gradual. A few things would disappear at a time, then one would reemerge for a season, then flicker out until it was gone. His last two phrases were, “My Neon” [we have a Dodge Neon] and “My Dad”. We haven’t heard a word from Jayden in years.
This summer we noticed an increase in Brooklyn’s aggression and restless sleep. She has violent screams as she is trying to go to bed [see video]. There seems to be a correlation between these nights and regression. I’m no doctor, but I have seen this pattern in both my kids.
It’s like the hair in your shower drain, mixed with the slime of your soap and dead skin cells. The more of that gross-ness that builds up, the harder it is for water to flow through your drain. Eventually, your drain gets completely plugged and quits working. And with Sanfilippo
, there’s no tool yet to clean it out. The connections in their brains get polluted and stop working.
So when it came time for Brooklyn’s school placement this fall, she was too “high” for Laremont
(Jayden’s school for kids with severe and profound disabilities) but too “low” for a typical Kindergarten class. So, we put her in a wonderful classroom designed to work primarily with students who have Autism. Her teacher was amazing. And the staff worked really hard to get her transitioned. By December parent teacher conferences, though, it was clear that she was miles behind her peers in the classroom.
They were spelling, she was tearing paper.
They were lining up for the bathroom, she was getting her diaper changed.
They were matching colors and sorting blocks, while she was coloring her hands and eating blocks.
So, at my request, we had a team from Laremont come in and observe her.
Would now be the right time for her to go to Laremont?
There are a lot of things we could be sad about.
A lot of things we ARE sad about.
Brooklyn has worked so hard and in a few short months, years of therapy and hard work are gone. Laremont is the end for us. There is nothing lower to go to other than hospice. In the beginning, we were foolish to believe that Laremont would be an option for our kids when they got to High School, not Kindergarten.
On her last day of school this December, I got dressed for her IEP meeting. (This is the meeting where the district and teachers come together to talk about her goals and placement.)
I made carmel popcorn.
I put on my converse.
I mean, how can you be sad wearing converse, eating popcorn?
I grabbed a stack of Love Does books for each person that has worked with Brooklyn and headed to the meeting. It was brief. We all knew. We celebrated her. We laughed about her pulling Jayden around at school now that they will be together. We ate popcorn.
As I was leaving, I thanked everyone for how much they loved my sweet girl. They all lingered a bit longer than a normal IEP meeting. It was like they were saying good-bye to her in those few minutes. As I was leaving, I hugged her teacher, and that’s when it happened. Her teacher was trying to hold back tears.
Listen, this isn’t my first rodeo. I have been to more of these meetings than I can count. And, they are all about regression. They are emotional. Even for teachers.
I got in my car and called Justin to give him the news that Brooklyn would be going to Laremont starting January 5. I started to cry. My tears quickly shifted from tears of sadness to tears of joy.
I was so proud of my sweet B.
I AM so proud of my little girl.
She continues to impact the people around her. You can’t help but love her. She sumo-walks into a room, big blonde hair, beautiful blue eyes, and an even bigger smile. Christ’s light shines through her song. Her spirit is contagious and she makes you want to linger a little bit longer. She continues to leave a legacy of love in the hearts of the people that take the time to be with her.
And, that makes me one proud mama.