I wish to have a playset
Delaney
5
spinal cord tumor
Delaney's Wish Is The "Best Day Ever"
At two and half years old, Delaney (Laney) was diagnosed with a tumor in her cervical spinal cord. Laney's tumor had grown so much it was nearly cutting off all the signals from her neck down. Her neurosurgeon didn't know how she was breathing let alone walking. In the past three years Laney has had three major surgeries to remove the tumor. She received two different chemo regimens that failed her, then we summed it all up for before her 4th birthday with 25 rounds of proton radiation. It is heartbreaking watching your child fight for their life, but Laney has been remarkable through it all. From the surgery and the residual tumor still on the spinal cord, Laney has left sided weakness and lost all use of her left hand. She uses leg braces, an arm brace, a back brace and a wheelchair on days that she's really tired. She receives therapy twice a week at CHOP to help with her gait issues and to help her manage life with one hand, all while still holding onto hope with therapy we can regain some function to her left hand. If you ask Laney how she feels about this whole ordeal she says she is happy! To her, she doesn't know any different. Hospital visits and therapy sessions have been a part of everyday life. Of course, she doesn't like being poked and prodded but she sure is happy to wake up to go to CHOP and see all of her friends!
Make-A-Wish first came into our lives when Laney had her first surgery and was diagnosed. At the time we were still accepting our new lives and then we never really got a break. Laney's tumor just kept growing and growing, needing further treatment. After she finished radiation, we finally felt comfortable enough to go ahead with making Laney's wish. When we finally started the process, the pandemic soon followed after. As we stayed in our bubble, we really started to miss our everyday things – like no playgrounds for the kids. One of Laney's favorite things was to go to an all-inclusive playground and swing on the special swings. She feels happy and free to be able to swing with her siblings and to be able to play safely with her siblings at those playgrounds. The giggles - oh the giggles she gives! So, when Make-A-Wish asked Laney what her wish was, she knew exactly what she wanted - a playground of her very own to be able to play with her siblings.
Laney loved that she was a part of all the decision making for her playset, from the steps so she can play safely to the shade she wanted so she was able to play longer outside with her siblings, down to the swings and colors. Every bit of it she was asked her input and for a little kid that is pretty awesome!
The day that Laney's wish was finally being granted we were up bright early in the morning 6:30am. Me nor Laney could sleep, all the excitement was in the air like Christmas day! The truck pulled up and parked out front and the joy just took over her face as tears trickled down mine. Her siblings were still sleeping while Laney and I watched them build her swing set . It was a beautiful morning; the sun was shining, birds were chirping and the happiness was just gleaming off of Laney's face and you could not take the smile off of mine. Watching my child glow with such happiness gives me as a parent a feeling I can't describe. When the playset was complete, Laney jumped for joy as those tears started streaming down again on my end. She ran for those stairs and conquered them beautifully, checked out the surprises added that she didn't know about and slid down the slide to quickly ask, “Can I go on my swing?” She had her very own swing for her right in the middle to swing side-by-side with her siblings. The giggles started, the giggles you only get when she's on the special swing at the all-inclusive playground. She repeated and repeated and screamed "This is the BEST DAY EVER!" and I thank all of you from Make-A-Wish. You did it, you made her wish come true. That's exactly what she wanted, to be able to feel just like any other kid . I don't think people realize that swing sets are very limited when it comes to children with disabilities. To be able to see her play freely amongst her siblings on a swing set in my own backyard is a beautiful sight. Laney and her siblings played the whole day and even had their cousins come over to join in the joy.
We have been waking up early to beat the heat these days so Laney can get some swinging in before it gets too hot and then enjoying her therapy swing at night to have an OT session. It’s been great for me as a mom to be able to see my children play together and watch their bonds get stronger as they swing together and talk about random things. Or when they all huddle in the playhouse to play a game or the "hiding game" from mom. They are being kids again and not worrying about other things. They have been having a ball and so happy to run out every day to play with their swing set. The joy and happiness that came from this wish wasn't just for Laney, it was for the whole family. It was very much needed and very much appreciated. From this momma of four, I thank you, I thank all of you!
