Wow! Do I owe you an update or what!? The last time I wrote about our Lea she turned 5 and was THRIVING! You can read more about her backstory and that post HERE. Since then she completed Kindergarten and just started 1st grade! Time sure does fly! Here is a bit of how things are going.
When I left you last, Lea was 5 and thriving! Her neurologist had added a medication that “woke up” Lea’s muscles and we were seeing her do things that she once struggled with. It was and still is amazing to see! For those that missed the last post Lea was born with two genetic conditions that affect her muscles and cause extreme fatigue. Before Kindergarten started we met with her neurologist and he stated he would like someone to be with Lea (an aide) at school while she was walking alone, at recess, gym and getting off the bus (she still hasn’t mastered going down those big steps). He was worried about falls. Her school was more than accommodating and an aide was placed with her.
I wish I could say that Kindergarten was amazing for her but that’s where this story takes a twist. As Lea is getting older and is around more kids her age she started questioning why she was a little “different”. Why she had an aide, why she wore braces, why she couldn’t climb things like the other kid and why she was always tired.
She started acting out and getting angry. She wanted me to make sure she had “high top” shoes that would cover her braces because the kids “asked too many questions. She also stated to us that she was “6 now, and time to teach her how to walk without braces.” At one point she had a “sit down” with her physical therapist and she was able to ask her all the questions I didn’t have answers to.
I remember the day like it was yesterday. I was sitting behind the two way mirror and Lea asked Ms. Barb. “How long do I have to wear these for, when will I be like the other kids?” I sat there holding my breath for Ms. Barb’s answer. She said “probably 3 to 4..” and in my head I was getting excited thinking she was going to say MONTHS. I was about to jump up and down and celebrate. BUT instead Ms. Barb said “3-4 more YEARS.” My heart instantly SUNK and the look on Lea’s face said hers did too. But Ms. Barb just looked at her and said One Step At A Time.
And from then on we tried not to look ahead and tried our best to take one step at a time. We made adjustments. She started another medication that helps her with fatigue so she can actually make it through the school day without falling asleep. We pulled back on her aide and now she only has one “watching her” at recess but not by her side. She decided to try cheer leading but wasn’t the biggest fan.
We went to Disney and I was able to get the Disability Access Service which honestly saved our trip! She had a blast with all her cousins!
We went to Hilton Head for Spring Break and she fell in love with the ocean.
She went to the zoo on a field trip and we brought the stroller.
She also realized she likes to shop just as much as her mom and Aunt Trisha.
There was definitely times I wondered if we were going to get her through Kindergarten but she did it. She had a wonderful summer and we learned that she LOVES to swim, as long as it’s in a pool. Ha! She started 1st grade a couple weeks ago.
I think the beginning of the school year will always be the hardest for her. Today before school we had to go pick out what will be her 6th set of braces. She definitely had feelings about that and I definitely shed a few tears after dropping her off.
The days are long, busy and she’s exhausted but I just have to remind her that she just has to take one step at a time. <3
Julie // Sisters that Shop
