Wednesday, September 21, 2011

Lilli Masters the Stairs

I am not standing at the bottom of the staircase, watching. Not yet. I am still walking backwards, down the stairs in front of Lilli so I can catch her in case she falls. But she is definitely doing it on her own. Another victory for Lilli, after over three years of hard work. And another answer to prayer.

It's been awhile since I have been able to post. Two days after my last post about seizures, Lilli had the worst seizure she has had in almost a year. It was a long one at 5 am, and we called 911. She had trouble breathing and it was incredibly scary, but now we officially have oxygen on hand in case it happens again. After the seizure, I felt like we took a few steps back and had to catch back up. It has been a challenging month in several ways for us. But we can always find something to be thankful for. After looking at pictures of flood damage near some dear friends and family in Bloomsburg, PA, I could not possibly complain. We are very blessed.

The video posted here is of Lilli walking down the stairs in our house to the finished basement. This captures a huge milestone for Lilli because she has never walked down an entire flight of stairs by herself before. This is the first week ever in her life of holding onto the railing and going down the steps with no help. She has put in countless hours of physical therapy working on this skill. My father in law, Terry C., made her a special set of wooden therapy steps that we had in our living room in Virginia for many months. It took up most of the room, but the results were worth the inconvenience of stepping around it every day. Many people, including therapists, family members, and friends, have spent much time and effort in teaching Lilli to walk up and down stairs. I used to stand on one side of the therapy steps with a portable DVD player to coax her to walk up the other side. My husband Jasen gets the most credit of all. He insisted on walking her up and down the steps every day several times, for exercise and practice. Many of those sessions were tough, with Lilli crying and whining the entire time.

When Lilli was younger I read as many books about kids with cerebral palsy as I could find. One of them was a book called "Karen." Karen had cerebral palsy, and hated walking up and down stairs as a young child. It was difficult and scary for her. The author describes how the mother would throw Karen's favorite doll to the bottom of the steps and say, "If you want it, you have to go down the steps to get it." Then when she got to the bottom, the mom would throw the doll back up to the top to make her go back up. At the time, I thought it was cruel. But now, years later, after our own experience with Lilli, I understand. Sometimes parents have to use unconventional methods to help their children with special needs overcome their fears and difficulties. We personally have used many odd objects as incentives to attempt the steps. Keys, bottles of water, cheesepuffs, and movies on the portable DVD player are a few. Outsiders may not understand. But for us, it worked. I hope that by posting this, some of those people who helped Lilli along the way will get a chance to see the finished work as a result of all of our combined efforts. I also hope that anyone who is working hard with a child with special needs on any skill is encouraged by this story. It may seem small to some, but it is a huge deal to us. Believe me, coming from someone who ruptured a disk from carrying a three year old everywhere, it is a big deal to have Lilli walk by herself, and then walk down steps by herself.

Little things are a big deal around here every single day. We take so much for granted. But Lilli helps remind us each day to not take anything for granted in life. Especially the "little" things.

Like walking down the steps.

P.S. I must add that I realize she does not match. She is wearing "make-shift pjs." (Christmas idea alert! Size 7!) The only fashionista around here is Chloe, the rest of us obviously don't think about it much.

1 comment:

  1. That's fantastic! I am so proud of her and of you guys for working so hard. I am sorry to hear about her seizure but now it sounds like you are prepared for anything. I have to admit I didn't notice the mismatched PJs until I read it. I have a 2 year old boy that is potty training and growing like a weed. We wear whatever is clean and sort of fits.