Waverly's Room

August 29, 2016

Waverly's Room

We have made some changes to Waverly's room. We were so fortunate to have a Sleep Safe bed for her. It made a world of difference in caring for her and allowing her to sleep safely each night. Plus it gave Matt and I the gift of a full night's sleep. It took some time, but we finally dismantled the bed (with help from my step-dad). A lovely family who also has two children with Sanfilippo Syndrome is came down and picked it up for their son. I am so thankful another family can benefit from this bed.

Wavey's room felt so empty and nondescript without her bed. I still wanted it to be *her* space. So I moved our desk in there. It's the perfect space to sit for paperwork or working from home. I bought a bright pink rug and moved her Yogibos there for comfy seating. I have found myself back there often. It's a new space, but it is still her space.

Comments

Anonymous said…

How wonderful, that another child can sleep safely in Wavey's bed.
This must have been so hard for you guys. Good for you, for being able to make this step.
What a good idea to move your desk in there, having her things all around you.
I'm thinking of your family often, hoping for you to find your way through the grieving process.

August 31, 2016 at 4:03 AM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.