Liberty has been very stiff, very, extra Dystonia and Spasticity for months. (Unsure as to why this is as her DBS and Baclofen Pump have remained steady since her check up in April. The last round of Botox yielded limited effects as she is so very spastic it is hard to tell any relaxing of the limbs or torso.
Rachael, little Dottie, and Kim worked diligently to take the fortress apart.
Finally
I asked Kim and Jeff, our beloved friends, if they would take the fort and allow their kids to wear it out. Gratefully they agreed and the fort will be rebuilt and some parts repurposed to meet the needs of their beautiful kids: Tommy and Dottie. Now the fortress will get a makeover and hopefully lots of love. Sometimes letting go of the things is as important as the process of getting them. Years ago, I had to get Libby that fort as she really wanted one and she loved it long after she could use it. Now, it is time for it to create lots of new memories.
We are continue to live our bonus days with Miss Libby. Traveling with Liberty is both joy and stress filled. Ensuring that she has what she needs and yet is part of the activity is an interesting dance. We travel with a special potty chair, pillow, transfer blanket, pads, pull ups, battery charger, meds, proper list of meds and doctors, regular wheel chair (pink beast) and her adult stroller (KAM). Plus a partridge and a pear tree. It's not much different from traveling with any other children. You pack to fortify your child safely- and happily- through your adventures.
It was months ago that I came to realization that we no longer needed the special fort in our side yard that we had built for Liberty after the Lyme hit and while she was still walking with assistance. It had a special ramp with a rope rail and lots of extra safety features. We made it her pirate ship and bought the flags and booty to go along with it. She has not been able to get up into her fort in several years, and short of carrying her piggy back style she was not going back up.
For the last year, every time I passed it I felt guilty and sad. The beloved fort was starting to list according to the push of the wind. Stabilizing it was beyond Rachael and my skill set. It wasn't getting love and attention from Libby, and so it was untrodden, unused, and mostly abandoned even while Jasmin and Xavier sat occasionally on the swings. The pirate's place needed a new life with younger kids and lots of love.
It is hard for me to keep things around that remind me of what Liberty can no longer do. It is just hard. I've kept her Legos and a few other toys, a teenage girl purse or two, a pair of boots she loved to wear, a baby doll she wanted to play "Momma" with when her memory first left, and lots of stuffed babies. But so many other things have had to go. Many of these things just need to continue to be enjoyed and loved. No sense clinging to what was.
Rachael, little Dottie, and Kim worked diligently to take the fortress apart.
Finally
I asked Kim and Jeff, our beloved friends, if they would take the fort and allow their kids to wear it out. Gratefully they agreed and the fort will be rebuilt and some parts repurposed to meet the needs of their beautiful kids: Tommy and Dottie. Now the fortress will get a makeover and hopefully lots of love. Sometimes letting go of the things is as important as the process of getting them. Years ago, I had to get Libby that fort as she really wanted one and she loved it long after she could use it. Now, it is time for it to create lots of new memories.